We still must wait another 4 weeks before baseline tests are scheduled to test the effects of MIBG treatment on his cancer.   We anticipate and are continuing to pray for dramatically positive results!  The current program is for Liam to go back to the hospital on Monday's and Thursday's for blood test and then transfusions if/when required.  For example, on Monday (6/20/05) Liam required a platelet transfusion.  Today, Liam required both a platelet and red blood transfusion.   In contrast to his wonderful attitude and re-gained energy (the good signs),  We are nervous that he continues to require platelet cell transfusions twice a week.   A sure sign that the cancer is disappearing within his bone marrow would be for his own body to create and maintain a sustainable platelet count.   For now, we continue to wait for the baseline tests - we pray for dramatically positive results from MIBG treatment - and we try to enjoy life to the fullest.  Liam has been visiting his MeMe and cousins in NJ, playing with the John boys (his new neighbors), climbing buildings like spiderman, playing basketball with Daddy, etc....  Some other friends in our neighborhood, the Smiths, gave Liam a hand-me-down art desk which fits perfectly in his bedroom.  He is very proud of his desk and couldn't wait to show me how well he organized his markers and drawings.  He also announced that he is making a special dinosaur picture for me to take to work once its complete.  I've already picked out the space on my wall at work where it will go! :-).

6.17.05, Friday, 12noon

Hi everyone.  Thanks for sharing in our Joy of getting Liam home earlier than expected from the MIBG Therapy last week.   Overall, he is doing well and has become progressively more active each day, which could be a great sign.  Unfortunately, we must once again dig deep and find more patience because we will have to wait another 5 weeks before baseline scans are scheduled to determine what effect the MIBG has had on his tumor.  

Prior to the MIBG therapy, he was getting less and less relief from the pain medicine (Lortab) and was becoming much less active, which confirmed our fear that the cancer was progressing in his bone marrow.  Also, he was unable to create enough blood platelets on his own, another indicator that the cancer was progressing.  Lastly, he had developed two black eyes, which we think was from anemia or worse, perhaps tumor behind the eyes.   As a 5 yr. old, it’s hard for him to explain how good or bad he is feeling.  The best indicator for Mommy and Daddy is to watch his attitude and activity level, both have been improving since the Therapy!

We were sent home last week with a prescription of Morphine so that we could wean him off it gradually.  The last of the morphine was completed yesterday (Thurs., 6/16).  Therefore, we will be watching him closely now to see if he gets relief from the Lortab or even better, requires less Lortab, which would be another great sign that the Radiation is working and killing his cancer.   Also, his black eyes are getting better, which is another great sign!

6.11.05, Saturday – Daddy and Liam went to the Dupont hospital to get a blood count.  Liam had just left the hospital two days prior (Thurs.), however, we wanted to know how quickly his ANC (Absolute Neutrophil Count) was dropping, and thus we arranged to have his blood taken again.  Dr. Griffin arranged for us to arrive at the emergency room since it would make for a shorter visit.   We know that the MIBG therapy will cause his ANC to drop to zero.  The goal was to begin giving him the GCSF needles the moment his ANC fell below 750.  Remembering that the GCFS needles promote white blood cell growth and will help him re-build his own immune system  (ANC) naturally.  His ANC was 858 at this time, so we postponed needles.  Liam was happy with that decision :-).  

THE NEW GOAL is ensure that Liam remains eligible for another round of MIBG radiation therapy, which could take place 6 – 8 weeks after his first round.   His ANC must recover and stay above 750 in order for him to remain eligible for another round.   Similarly, if he requires the help of the GCFS needles for more than 2-3 weeks, that could eliminate his eligibility.  Finally, if his ANC stays below 200 for more than 2 weeks, that too could eliminate his eligibility.  If this scenario occurs (ANC less than 200 for 2+ weeks), then our focus will turn to a Stem Cell Rescue.  This would mean that the MIBG therapy has weakened his immune system beyond his own ability to repair and we would have to “Rescue” Liam’s immune system by re-injecting some of his own Stem Cells back into him.  You will recall that we had to do a Stem Cell “rescue” last year after Liam’s Transplant.   This would be the identical procedure to last year; the difference being that last year’s “rescue” was planned as part of the overall Transplant; a new Stem Cell rescue is not planned nor is it desirable.  Clearly, if he requires a Stem cell rescue due to the first round of MIBG therapy, he would be eliminated from a second round of MIBG therapy.

On the “Fun” side of the equation, we were able to attend the KANE family reunion at my cousin Mark’s house in Ridley on Saturday.  We had expected to be in the hospital so our attendance was a great surprise for us.  It was a great time; BBQ food, face-painting, Moon bounce, etc…  were all on the agenda for Liam and Alli.  Sunday turned out to be a nice day as well when the Johnson’s came over for brunch. 

6.13.05, Monday - Andrea took Liam to the hospital for more Blood counts.   Liam’s white blood count was .9, rbc was 8.2 and platelets were 44k and his ANC was 550.  Therefore, he needed a red blood cell transfusion; a platelet transfusion and we began to give him the GCFS needles.  Monday turned into another 10 hr. day at the hospital for Mommy, Liam and Alli.

6.15. & 6.16.05, Weds. & Thurs.- Mommy, Liam and Alli snuck away to Rehoboth Beach and visited with Grandmom and Grandpop Keahey for a few days.  Grandpop took everyone out on his boat for some fishing and crabbing on Weds.  The following day was spent at the beach!  Poor Alli came back with some sunburn on her back (just a little).  Mommy came back by 7:30pm on Thursday night so that Daddy could see my kiddies and put them to bed for the night.  Also, the John’s (our closest friends for Boston) closed on their house this week.  It going to be surreal to have them living just 2 doors down.  Liam and Alli are very excited about their new buddies coming to the neighborhood.   Aidan(8), Brendan(6) and Craig(3) will arrive for good on Saturday!

6.17.05 – Friday – Today, Liam went back to the hospital for another Blood test.  His ANC is 1200 and his wbc are at 1.9, unfortunately, these all falsely elevated due to the GCSF needles.  Liam is looking forward to Tommy Alessi’s birthday party tomorrow.  He may have to wear a mask due to the false ANC; you can’t really nail how much at risk he is with the GCSF in his system.

Anyway, we are planning to make this one another memorable weekend.   Please pray that the MIBG continues to attack his cancer (it last up to 8 wks.), that Liam’s dependency on pain medicine becomes non-existent (a sure sign the cancer is losing) and that his body recovers enough to maintain his eligibility for a second round of the MIBG.  As always, we thank you from the very bottom of our hearts for praying for our little big man and never giving up hope!  Have a wonderful weekend and Happy Father's Day to you Dads.

Kevin

6.10.05, Friday, 8am

We have Great news - Liam's late afternoon radiation reading showed a 6.4 so we were able to bring Liam home last night around 8pm!  He was feeling so happy to get out of the room that he was singing songs, humming (sp?) and full of smiles.   What was his first action after he came home you ask?  Well, he made a bee-line to the basement to finish opening the presents he received at last Saturday's Birthday party of course!

Today - Andrea and Liam will go to Hotel Dupont for a platelet transfusion.  We are already seeing signs of some pain relief from the tumor, the next couple of days will begin to tell us if the MIBG will have been truely impactful.  I will say that the black eyes he has had all week (due to tumor and enemia) are less obvious this morning.  How he feels this next week will reveal how impactful the MIBG treatment was, but Mommy & Daddy are already seeing positive signs.  Please keep praying!

Kevin

6.9.05, Thursday, 12noon

Hi everyone.  Thanks for the continued support, prayers and Love for Liam.   He continues to recover from Tuesday's infusion and the radiation continues to dissipate by the hour.  The magic number we are looking for now is "7".  The nuclear/environmental medical team began taking radioactivity readings from Liam beginning on Tuesday, shortly after his infusion.  The readings are taken 3 ft. away from Liam's hip.  The gamma rays are strongest within the first 3 ft. of Liam, then they drop off very quickly, hence, Mommy or Daddy can stay in the room with him as long as we stay 3 ft. away and stand behind the 2" lead shields as often as possible.  Anyway, Liam was reading "32" immediately after the infusion on Tuesday.  He read "17.5" on Weds approx. 24hrs. after the first reading.  Andrea just told me that today (Thurs.) his is reading an "8.5".  I believe the measurement is in 8.5 millrems, which would equal 850 microSieverts(uSv).  Remembering that Andrea and I are supposed to be below 300 uSv's per day, Liam's readings have been 3200, 1750 and 850 uSv's for a "one moment read", not a total daily count, we can only image the levels of radiation going through him.   Just to give more confusing numbers :-), My total exposure for Tuesday night completed at 6560 uSv's, quite a bit above the 300 uSv's mark.  I don't claim to have mastered all this MIBG stuff, just enough to make sense so Andrea and I can be confident in our decisions.  However, I believe 6560 means my exposure level for Tuesday was equivalent to me having 10-15 chest x-rays in one day? Anyway, that's not important.  What's important is that the MIBG has the effect we are praying for on Liam's cancer.

Liam has been on a steady infusion of morphine for pain (every 4 hrs.).  He has had some breakthrough pain episodes last night and early this morning in which he requires additional bolis of morphine to get the pain under control.  Dr. Maris explained that this is a "good thing" because its likely cause is that the radiation is attacking the cancer.  So, I never thought I would be pleased to learn that Liam is in pain, but in this case we are happy - understand? 

Having Liam lie still all day has not been as challenging as we originally thought, primarily due to the fact that the morphine is keeping him sedate and sleepy.  He's been taken two naps a day, doing lots of crafts, building power ranger puzzles, coloring and watching new movies.  BONUS:  We are very lucky that the windows to the Lead room face a large construction site directly across the street from the hospital.   Local Philadelphian's may remember the old Phila. Convention Center across the street from CHOP.   They are slowly dismantling it with big construction cranes, booms and very cool massive Bulldozers that resemble "Dinosaurs"!  My guess is that its too risky to have the building imploded (so close to the hospital), so they are slowly tearing it down.  Long story short, occasionally, Liam gets to see a 3-story wall collapse in a big cloud of smoke.  Our favorite is a combination Long-neck & T-Rex looking construction equip. that reaches up high with its "long neck" and grabs some wall with its "T-Rex jaws" an pulls down the wall!  You can almost hear Liam and I saying "EERRRGGGHHH"  (that's a T-Rex growl) each time it grabs a piece of the building.  Great temporary distraction for a 5 yr. old boy!

6.7.05, Tuesday, 11:23pm

I am pleased to say that Liam is resting peacefully tonight.  He completed the MIBG infusion earlier today as planned and has earned himself a good night sleep.  The only side effects we've seen so far is nausea and vomiting, he did get sick around 6pm tonight.  He is sleeping in his bed surrounded by 3 mobile lead sheets, 2 inches thick.  Andrea and I have begun the "shift-work" since only one of us can be in the room at a time now that he has been infused with the MIBG.  We are supposed to keep our exposure below 300 microSieverts (uSv) per day.   My dosimeter is reading 767 uSv's at the moment, probably because I was hugging him when he was getting sick earlier.  I am not concerned about my exposure, when I think about the amount of radiation going through my little man, it pales in comparison. 

Metaiodobenzylguanidine (MIBG) is a substance that concentrates in neuroblastoma tumors.  "Man-made" MIBG (produced at Univ. of Michigan), when put into Liam's body will seek out and attach itself to his existing neuroblastoma cancer cells.   Prior to infusion into his body, the MIBG was fused together with a radioactive iodine named "131i".  The combined product is named "131iMIBG".  The idea is that the MIBG will seek out and attach itself to Liam's existing cancer cells and then the 131i radioactive iodine will then kill those cancer cells.  The goal of nuclear medicine is to selectively kill cancer cells and minimize damage to nearby healthy, normal cells.  As opposed to chemotherapy which is a "full body" blanketed approached and damages all cells randomly.  A document exists out on the CHOP website that gives greater detail on the entire therapy, it even gives pictures of the room we are staying in, etc......  you can check it out:  http://stokes.chop.edu/programs/marislab/clinicalresearch.html   The Neuroblastoma team here at CHOP are fantastic and we are praying that this treatment will help us once again gain control of Liam's cancer.  It is clear that this MIBG treatment is not a cure.  It is our goal right now to achieve a "chronic" disease with this therapy, get it under control, and then seek out next best paths after that. 

O.K., I feel the need to balance this post with the healthy amount of fun.  As you may have read on some of the great messages sent to Liam,  we did have a wonderful 5th Birthday party for Liam on Saturday.  It was awesome.  We really wanted it to be a memorable time for Liam and I believe we hit our goal.  Thank you everyone who came and thank you for spoiling Liam and making it a special day.  Our one wall in the basement looked like a stock room at Toy-R-Us, everyone was too generous!  The Red Power Ranger came to the party and taught the kids a lot of moves.  He was great, this guy never left character the entire time, and the kids loved it.  Aunt Karen, Uncle John, Garrett, Brianna and J.T. took a red-eye from CA and surprised us all by joining us for Liam’s Birthday part.  Lastly, Uncle John took us all to the Phillies game on Sunday in style.  We took a tour of the new stadium, went down on the field and shook hands with Phillies telecaster Harry Kalis (Daddy’s highlight).  Liam’s highlight was the special visit from the Phillies Phanatic.  Excluding the disappointing news of Friday, we did turn our attitude around and made it a fantastic weekend.

The focus for the rest of this week will be to keep Liam distracted.  He must lie still in bed for approx. 2-3 days until his radioactive levels drop low enough (per FDA guidelines) so that we can take him home. 

6.7.05, Tuesday, 11:49am

Hello everyone.  Just enough time for a quick post, we are checked in at Children's Hospital of Philadelphia (CHOP) and are waiting for the MIBG / radioactive isotope to arrive in Phila. from Michigan.  It is manufactured at the University of Michigan and shipped overnight to be used within 24 hrs.  Liam was in the O.R. already this morning to have his foley cathedar inserted.  He will need to have this cathedar for at least 3 days.  He is fully aware that he now "has a tubie coming out of his penis".  Andrea and I are waiting to speak with the radiology team, we will begin wearing a dosimeter on our chest to read radioactivity exposure levels once Liam gets the MIBG infusion between 1 - 1:30pm.  Radiology just arrived, I'll update later.  PLEASE SAY PRAYERS for positive response to MIBG!!!!

6.3.05, Friday, 6:30pm

Hi everyone.  Sorry to post that Liam's platelet count was 17K, not the 50K he needed to be eligible for the more aggressive therapy we wished.  We are very disappointed, but needing to continue to push forward.  He will still begin radioactive therapy next week as planned, but not the more aggressive MIBG therapy we had prayed for. 

Some Hope was gained back later this afternoon.  Our MIBG team reminded us that Liam's not responding to the 2 rounds of cyclo/topo chemo has no indication on how well he will respond to the MIBG treatment.  They are two completely different approaches to treating his cancer (chemotherapy vs. nuclear medicine), therefore, one will not be indicative of the other.  We were glad to hear this as we can now hope and pray for a dramatic response to the MIBG therapy.  I only wish he could recieve the more aggressive plan.  The fact that his platelet numbers continue to flounder is an indicator that the tumor is advancing within him, specifically, within his bone marrow.  Thank God we have his next therapy scheduled to begin next Tuesday. 

Right now, we are trying to put today's disappointment behind us and shifting our hope to the single MIBG treatment that is now his next step.  Tonight, I am taking Liam over to Brandywine H.S. to see our friend Kelsey.  She is part of a team participating in the "Relay for Life".  They walk around the track continuously from 6pm to 6am in order to raise money for cancer research.  Her team choose Liam as they sponsor so we thought we would stop by and say Thank you.  Tomorrow, Liam will celebrate his 5th Birthday and Mommy has planned a huge party with lots of his friends.  We really want to make this memorable for our little big man.  His actual birthday is June 29th, but we anticipated being in the hospital then on the more aggressive therapy, now its unclear if he'll be in the hospital on the 29th or not, but the big party is still a go for tomorrow.  We all need something fun after today's disappointing news.  We are planning on having a great time.

6.2.05, Thursday, 6:45am

Hello everyone.  Sorry for the delay in posting due in large part to the very hectic schedule we are keeping (Liam's treatment, work, fun, everyday "stuff") and, frankly, due to some procrastination on my part.  This note will also need to be short, but I promise to give another post in short order - I do want to share all the positive news and fun we have been sharing with Liam and as a whole family. 

But first, I need to request your urgent prayers!  We have decided on Liam's next best path - which will be the MIBG treatment in Phila. (Nuclear Medicine / Radioactive therapy treatment) beginning on Tues., June 7th.  Two clinincal trials exist under the MIBG treatment "umbrella".   One treatment is much more aggressive than the other (I'll offer more details in next post).  We NEED Liam to be eligible for the more aggressive trial.  We must attack this evil very aggressively and it is very important that he remains eligible for the more aggressive treatment.  Sadly, Liam did not respond well to the two rounds of Chemotherapy (Cyclo/topo combinination) that he just completed.  They were designed to keep his cancer under control while Andrea and I made our next critical decision.  We were horrified to learn that Liam is worse off now than he has ever been.  The cancer continues to progress rapidly, it is now throughout his leg bones, pelvis, arms and into his skull.  It is still mind boggling because to look at him, he does not look sick.   He continues to take on each day with a grace, dignity and love.  Thank GOD that we had sense to comitted to the MIBG treatment early in May, then continue to pursue the other possible treatments, thus, he is now less than a week away from his next treatment.  

The prayer at this moment is clear.  Liam is scheduled for a Blood count tomorrow (Friday) at 1pm.   This blood count will determine his eligibility for the more aggressive radioactive therapy treatment - We need all his counts to remain high and we need his platelets to remain above 50,000.  Please pray that Liam's bone marrow recovers well enough on its own to allow for his platelets to be greater than 50K in tomorrow's blood test!!!  Thank you very much.

5.19.05, Thursday, 2:10pm

Hi everyone.  I just have time for a quick post today -- I want to let you all know hat we were able to break Liam out of the hospital last evening!  Yeah!!!  One day shy of two solid weeks this go round.  His ANC count was still below 500 on Weds., however, we were still allowed to take him home early.  Yeah!!  I just heard from Mommy she arranged for Liam to have an "outside" play date today to celebrate.   A play date with some of his friends is exactly what he needed (and Mommy for that matter) to break the cabin fever.

More GREAT news!  Andrea, Alli and I recently had our blood taken in order to do HLA (Blood make-up analysis) to see if we could be a future Bone Marrow / Stem Cell donor for Liam (if necessary).  Siblings have a 1 in 4 chance to be a perfect match.  Thank you God -- It was confirmed that Alli is a perfect match for Liam!!!  It is wonderful to think that Alli could one day be responsible for saving Liam's life.  This is obviously great news.  It does, however, complicate our decision process a bit (in a good way) as this may open Liam up to another option not previously considered.  That's quite all right in our book as we will gladly accept options, :-).

5.16.05, Monday, 10:30pm

Hi everyone.  Liam is still camped out here at hotel Dupont.  We are seeing progress in his ANC count, but it is painfully sssssllllllllllllloooooooooooooowwwwwwwwwwwwwww...............  Sat. his ANC was at 8, Sunday it was 25 and today his ANC is 48.  We need him to reach 750 before we can break him out of here.  Liam is doing very well physically, but today was a tough day mentally as he was grumpy most of the day.  We think he is just bored, frustrated and anxious to get out of here.  With no immune system, he is not entitled to have any little friends visit so its Liam, Mommy and 4 walls in approx. a 20' x 15' cell (opps., I mean hospital room).  Poor Mommy and Liam are going stir crazy.  I arrived to the room tonight and found one wall nearly covered in dinosaur pictures that they colored all day to pass the time.  I wish I could bring them some sunshine, somehow.  Like last summer, I'm afraid we are destined to spend most of the sunny days of summer in the hospital again.

Remember that pain patch that Andrea and I were so pleased with?  Well, now we believe it caused Liam to break out in hives these past two days.  He kept complaining about being "scratchy all over” that means itchy in Liam language.  Now we are back to managing pain with a dose of Lortab every 4 to 6 hrs.

Liam's red blood cells and platelets were low today, which is expected as a result of the chemo, therefore he received a red blood and platelet transfusion.  He must now be beyond 70 transfusions since April of 2004 when he was first diagnosed, I have honestly lost count.

Another challenge was that we believed Alli was sick on Saturday and Sunday, so we could not bring her into the BBMT unit to see her big brother.  Mommy would bring her to the hospital, leave Alli outside the unit, then come in and retrieve me.  Poor Alli would cry because she didn't understand, but we had her wave to Liam through the glass to say night-night.  Thankfully, she was doing better today so we reunited the two of them tonight.  Alas, it was only a matter of moments before they were fighting over some crayons :-).  Please pray for his ANC count to take hold & launch and for confidence in our next decisions.

5.14.05, Saturday, 11:25pm

Hi everyone.  Posting from Liam's hospital room again.  Yes, sorry to say, we are still here at hotel dupont.  It’s turning out to be an extended stay this time as Liam has a few days with spiked temperatures.  The last time he had a temperature was on Thursday.   However, his ANC is basically non-existent at an 8, not 800, at 8, which means he is at risk to any infectious and must wear a mask if he leaves his room on the BMMT unit.  He is not able to leave the floor and he will be stuck here until his ANC rises above 750.  Otherwise, he is doing great.  We put him on a pain patch on Thursday that has done an excellent job of controlling the leg pain.  The patch lasts 72 hours so he will be due for a new one tomorrow (Sunday). 

The temperature spikes this week seemed strange (off and on) and unrelated to the chemo.  The doctors were concerned that it could be a bone infection.  Thus, Liam had another MRI of his left femur (thigh bone) on Weds.  The good news is that the tumor in his left femur has not changed, good because it did not grow, we had hoped for a dramatic reduction (always keeping the positive hope) but it was explained to us today that an MRI may not accurately tell "the whole story" as bones vary in density and its possible that the 2 rounds of chemo are having an effect on the femur tumor, just that the Bone scan (scheduled in 2 weeks) will tell a more accurate story.  Please continue to pray for these two rounds of chemo to have the best possible effect on Liam's femur tumor and the tumors within his bone marrow.  Although both rounds are now complete, the chemo still attacks the cancer long afterwards.  This is why the scans are delayed several weeks. 

OK, I'm back, had to help our nurse push some heparin through one of Liam’s central lines (tubies), it had kinked and we had to get Liam to lay flat on his back - He just loves that (sense the sarcasm?) and was not a happy boy a moment ago.  Anyway, he's already fast asleep.  Poor kid, it will be only a 1/2 hour when we'll have to interrupt his sleep again to go pee-pee.  The old saying reigns supreme; "you never go the hospital for a good night sleep, you must wait until you get home for that...".

Our research for Liam's next path continues.  This morning, we had arranged to speak to the parent of a child treated in Chicago with the Haplo-Allogenic Low chemo dosage Transplant therapy, which requires the use of donor stem cells, not Liam's.   To date, and to the best of our knowledge as no one can legally confirm this, only 6 kids have been treated in Chicago with this experimental Transplant.  4 of the 6 children had this done and have later relapsed again (all 4 had attempted other experimental therapies prior to this one in Chicago, so this Doctor's hypothesis is that neuroblastoma comes back more resistant each attempt to eradicate it and he recommends trying his therapy "first", NOTE:  just a hypothesis at this time. To further complicate the decision, its such an toxic therapy to Liam's body that it pretty much eliminates the possibility of then trying the other therapies, so it becomes an "all or nothing" choice...).   Of the remaining 2 children, 1 was cancer free for 40 mths. (a great win) but recently earned her Angel wings due to complications with chronic GVHD (graph versus host disease), which is THE major risk with this therapy.  The other child is now 12 mths. cancer free and doing well.  It is this child's Mother that we arranged to speak to today.  Lastly, to further complicate things, this mom speaks only Spanish.  Thus, we arranged for her sister to translate the conversation.  I first asked my good friend and old neighbor, George Huete, to make the initial contact to this parent as he speaks fluent Spanish and "ok" English, just kidding George :-).  Unfortunately, these are some of the situations we must consider for Liam's next step.  I will say, of all the possibilities, this is the one we are least likely to take - it is the lowest on our list, but must be considered since our options are limited.

Finally, last week we connected with someone whom we feel is speaking to us with no bias for any particular therapy.  He is an expert in the field of neuroblastoma and has been willing to speak openly and honestly (brutally honest) regarding our choices.  We were very happy when he recommended the path that we have been leaning towards (our current first choice) based on our own findings.  We still have a little time and some questions we still need to address, however, Andrea and I very close to firming up the next step to Liam's cure.  Please pray for clarity and wisdom for Andrea and I, and for peace in our decision.  Thank you.

5.10.05, Tuesday, 1:20am

Hi everyone.  Signing in from Liam's hospital room tonight.  I can't get back to sleep so I thought I would post some news.  I just finished freshening up Liam's bed after he had a pee-pee blowout, poor kid, what a nuisance to be sound asleep and wake up soaking wet.  He can't help it, you must realize that he is on a constant I.V. bag (liquids) to flush his system, flush his kidneys to prevent any damage from the Chemo.  During the day, he is certainly a "big boy" and let's us know whenever its time to go pee-pee.  However, during the night when he is exhausted, its fairly common to have a blow-out.  He wears pull-ups only at night time when he is in the hospital to minimize the blow-outs, but its inevitable.  Sorry buddy - forgive me when you’re a teenager and you read this post - you must be asking yourself "why does he have to share that?!?"  I don't know why Liam, its just part of the whole experience and I'm half asleep as I type.  You are sleeping now as I type, your are right here in front of me, peaceful.  I Love you buddy. 

We heard the weather was gorgeous this weekend - that's good, especially for all the Mommy's out there.   Happy Belated Mother's day to all of you!  I should let Andrea speak for herself, but I think its save to say that she had a nice day.  She wanted to be right her in the hospital with our little big man, and with Alli all day.  The kids had all kinds of crafts that they made for Mommy, it was very nice just to all be together.  Daddy and Alli made a special surprise visit back to the hospital "after hours" on Sunday to surprise Andrea and Liam with a late night Ice cream party. 

I'll share a nice moment I had with Liam on Sat.  He was feeling pretty good on Saturday, good enough to walk down to the hospital gift shop with me to buy Mommy something for Mother's day and to get himself a small dinosaur toy as well, he was sure to bargain hard for that as part of the trip downstairs - :-).  Anyway, I told him to find something in the store that Mommy would like.   After a short search, he grabbed a big, stuffed dinosaur and proclaimed this is what I want to get Mommy.  I said, "are you sure that Mommy wants a dinosaur for Mother's day?”  Liam said, "Yes, I want Mommy to think about me when she plays with it".  Well, needless to say, I think that particular stuffed dinosaur will be a permanent fixture in our bedroom going forward.  Alli is a true blessing, she's an angel sent to help the entire family carry on through these trials.  She is such a happy little girl; we are amazed with her spirit too.

Tonight was the last day of chemo for Liam (5th day).  We are pleased that Liam has done well with this second round, with respect to sickness.   In fact, he did not get sick once during these 5 days.  The only symptom this go round has been significant leg pain.  It has been like clockwork, approx. 2 1/2 hours after each injection he would complain of leg pain first in his left leg, then in both, strange.  He has been carrying a slight temperature since Sunday.  As a result, it looks like the earliest we can get Liam home may be on Wednesday.  

Liam just stirred and said, "I'm ok Daddy" in his sleep.  That's good to hear.  I think on that positive note I'm going to try and go back to sleep.

5.6.05, Friday, 8:00am

Liam began his cyclo / topo chemotherapy at 6pm last night (Thurs.).  There was concern that this round of chemo may have to be delayed, but we are happy that we pushed forward as planned.  Liam's blood counts from Weds. (5/4) showed that his blood platelets were still dragging at 74,000.  Platelet counts should be at 75,000 at a minimum before starting this chemo, but we decided it was "close enough" to begin.  The final hurdle was to get Liam's urine specific gravity numbers low enough to minimize risk of kidney damage. 

Liam was in a wonderful mood last night.  He greeted me in the hallway and came running down with Alli screaming "daddy!" - it made me feel like I was 20 ft. tall :-).  He had a bunch of surprise visitors; His 3 teachers from St. David's paid a special visit, his Uncle Billy, Aunt Maria and cousin Sydney came by and finally, Grandmom and Alli.  Liam announced "I want to go the child life room", so we jumped at the chance to get him off the BBMT unit for a short escape.  His ANC counts came back up on Weds. to 2400 (just in time to start the next round of chemo) and should stay there a day or two until this next chemo knocks it back down.  Anyway, he beat Uncle Billy in Ping Pong and Air Hockey and had a great time chirping, saying "Who's your Daddy Uncle Billy!?"  It was great to see him smiling and having great belly laughs.  Unfortunately, his mood went south when the first side effects began to hit him around 8:30pm.  He started getting nauseous and having leg pain in his left leg, behind the knee and thigh.  It came on very quickly this time and we had to play catch up with the nausea and pain meds.  Speaking of side effects - Liam has begun to lose his hair again.  It is the delayed effect from the 1st round of chemo.  At the rate it is falling out, he'll be a cue ball again by the time he finishes this round on Tuesday.  Andrea clipper cut his hair to the lowest height to minimize the itch-factor.  Lastly, Liam and I agreed last night that Daddy will be joining Liam again in support of his baldness.  Looks like it will be Dr. Evil and mini-me again in the Kane household.

I am looking forward to another "boys night" tonight with just Liam and me.  I hope he is feeling well enough to work on a Mother's day project from he to Mommy.

5.3.05, Tuesday, 12:45pm

Hi everyone.  The weather is really nice today in PA.  I plan to grab some great outside time with Liam and Alli early evening after work.  We are scheduled to take Liam back into "hotel dupont" on Thursday to start the second round of Cyclo / Topo chemotherapy, so we want him to get as much vitamin D (Sunshine!) as possible.  Friday (4/29) he received a red blood transfusion as the 1st round of chemo continues to affect his blood counts.  The weekend was a bit of a wash, but we made the best of it.  It rained all day on Saturday so we had to get creative again with games "inside". 

Andrea and I had a much-needed dinner date with friends on Saturday night.  Kelsey and Leah from church helped out by watching the kids.  Although, our little big man refused to cooperate with the girls.  Liam has really grown dependant on Andrea recently and refuses to let anyone else assist him with meds, night-night, etc.... its frustrating for both Andrea and I, but we understand.  He has a stubborn streak that comes out every once and awhile.  We don't mind to much as we believe this tough attitude helps him navigate through what has been a challenging existence these past 14 mths. 

Sunday (5/1) - Liam's Mom-Mom & Pop-Pop came to visit, as did his Aunts & Uncles and little cousins Kylie and Sydney.

Monday (5/2) - Liam had to get a blood platelet transfusion as he was running low again, we can always tell since the daily needles (GCFS for white blood cell growth) begin to leave bruises.  Lastly, he has a strange bruise on his leg that we need to monitor closely, doctors prescribed cream to apply to it the next few days.  The Infectious Disease doctor is concerned that it may be a unique infection, so we have to find the root cause before we can start the Chemo on Thursday.  THIS is why we are taught to be paranoid on germs – we don’t want to risk delay of his treatment.

Tuesday (5/3) - back to today, I need to put my head back into work.  Andrea was planning on taking Liam in to his pre-school again today to see all his friends.  He had a great time last week.  It lifted his spirits to see the other kids.  Liam does really miss being around kids his age.

Please pray that Liam responds very well to this next round of Chemo and that the tumor in his bone marrow is eradicated.   Please also pray for all his little friends at the Hospital, Jada, Jimmy, TJ, everyone…  All these kids need our prayers for continued strength. 

4.28.05, Thursday, 12noon

Hi everyone and thank you for your constant messages & support as we navigate our next steps to Liam's cure.  I've just re-read my last post. Boy, I can sound like a computer some times, I guess that just the mindset I'm in right now.  I do want everyone to know that we still focus hard on enjoying life every chance we get.   Most importantly, we try to capitalize on Liam's "good days" so we can enjoy all our time together.  We try to never miss the opportunity to celebrate both our children; they are amazing gifts to be cherished.  Alli continues to grow up right before our eyes and we try very hard to balance our attention to her, but its challenging some times with the demands Liam's disease puts on us -- especially Andrea.  I do want to give you some updates on research, but this post will focus on the enjoyment we've captured in the last 48 hours too.

We have now met specialists in Phila.(CHOP), NY (Sloan Kettering) and Chicago (Children's memorial).  We are trying to get to TN as well.  All have different phase 1 & 2 clinical trials currently on going, all with different approaches, different patient criteria (ex; certain blood count levels in order for patient to survive the therapy), and different levels of success.  Believe it or not, we are starting define some possible paths.  Some of the therapies are designed to achieve a "chronic disease".  In other words, they are not a chance at a cure, but a chance to try and control the disease in order to buy time and find other, potentially curative therapies.  We may have to consent to an aggressive "chronic disease" therapy, just so he can have a chance at potentially "curative" one, but that is not a guarantee.  The only thing that is guaranteed is that his disease will be terminal if we do nothing.  Complatency is not an option, period.  All the specialists are waiting to see how well Liam responds to his current chemo treatments (cyclo / topo), and then we can understand what doors remain open and what doors (if any) close.  I can't stress enough how important it is for Liam to have a positive response to this cyclo / topo chemo treatment.  Again, please continue to pray that his tumor within the bone marrow responds in the best possible way and is eradicated.  All this is still hard to believe.  Its hard to believe because when you look at him, he looks fantastic, and the way he handles himself you would never know that anything was wrong.  His is a very intelligent soon-to-be 5 yr. old and listens to a lot of the conversations Mommy and Daddy has with these Doctors, as much as we try to shield him.  I just pray he is still naive on the grander scale.

On to the other very important "stuff" - FUN.  Once we were done our meetings in NY, Liam took a cab ride with Mommy and Daddy to see Central Park and Times Square.  We couldn't believe all the people on a Tuesday afternoon.  We took Liam to the giant Toys-R-Us store on Times Square and he had a blast.  This place is huge, 4 stories, it actually has a ferris wheel inside the store.  Mommy & Daddy hit a grand slam because also inside the store was a life-sized, robotic T-REX Dinosaur!  He loved it and we loved it.  Lastly, we told him he could have anything he wanted in the store, but just 1 present and that he had to pick it out.  So, he dragged Mommy & Daddy around all 4 floors, literally; a "kid in a candy store" or in this case "a kid in a giant toy store" :-).  1 hr. later we ended up back at the dinosaur section (surprise!) and he grabbed the "coolest, blue, power ranger-dino thunder car in the whole store".  It carries a man inside it and it changes from a cool race car to a huge T-REX - Wow!.  I can't lie, we also grabbed him a few smaller things that he couldn't resist.  You know what, this little boy makes us so proud - he insisted that we also find "something cool for his baby sister Alli".   After that experience, we were exhausted and hungry so we at Planet Hollywood, lots of eye candy for a little guy to see at that restaurant.  We had thought about finishing the night with a kid's show like Lion King, but it was becoming clear that Liam was reaching the end of energy for the day so we postponed that for another trip in the future, especially if his path to cure takes us to NY for extended period of time.

Weds. night (last night) we broke all the rules for germ avoidance and took Liam and Alli to see the Ringling Bros. and Barnum & Bailey Circus.  It was awesome.  We had great seats and were even taken down on the floor (along with 15 other families) to be part of the show!  We were drove around the arena in a clown car waving to the audience, covered with confetti falling from the ceiling, it was a lot of fun.  Liam and Alli saw elephants, tigers, clowns, trick dogs, beautiful horses, high-wire acts, trapeze acts, pole-climbers and even a guy shot out of a cannon.  :-).

Today (Thurs.), Andrea took Liam and Alli over to Liam's pre-school so he could play with his old schoolmates in the playground during their recess.  Yes, his counts are very low, but we took a chance and arranged for the play to be outside, forgive us, but were pushing the envelope lately for good reason.  He really enjoyed seeing all his friends!

4.22.05, Friday, 8:45am

Good morning everyone.  YES! it is true that we smuggled Liam out of hospital on Wednesday night!  It is wonderful having the whole family home together again.  Liam's Absolute Neutrophil Counts (ANC) are dropping very fast due to the chemo, however, that has not prevented him from enjoying some of the nice weather on Thursday.  In general, having Liam outside in open spaces is o.k.  The risk to infection increases dramatically within enclosed spaces, like movie theaters, malls, indoor playgrounds and his buddies houses (boo!).  Anyway, Liam was able to hang at the playground yesterday with his Boston, MA buddies - Aidan, Brendan and Craig John.  We are very excited because they will be moving into our neighborhood in June and he will be able to play with them all the time!

Liam pushed through this round of chemo like a warrior, like he always does.  We are so very proud of him.  He did experience the standard symptoms;  vomiting, constipation (Constipation is due to the morphine; morphine treats the bone pain; bone pain caused by tumor in his bone marrow and left femur), fatigue and some times grumpy mood (who can blame him when?).   Walle, Amy, Sally and the rest of the excellent nurses at Dupont took great care of him.  Also, visits from his friends last week helped to pass the time away.  The "3 Tommy's" came to visit; Thomas Lindenhoffen, Thomas Kelly and Tommy Alessi, as well as Michael and Rebecca Henretty all came bearing gifts. Thanks.

As expected, the chemo has begun to steadily knock down his ANC, thus, he required 2 platelet transfusions and 1 red blood cell transfusion.  A strange symptom this time is a lingering black eye.  Liam's left eye looks like he took a nice punch in the nose.  Doctor is blaming the nb tumors within his bone marrow for the black eye, but it is strange. Liam is such a tough guy, I keep asking him what the other kid looks like (the one who lost the fight ).  Unfortunately, we have to re-introduce the once a day GCFS needle back into his medicine program.  The GCFS needle helps his immune system, specifically; neuphrils and white blood cells gradually recover from the chemo.  Its one big roller coaster ride for his immune system again.  The chemo knocks it down and we try to immediately pump it back up.  Liam is expected to receive yet another platelet and red blood cell transfusion tonight.

Mommy and Daddy continue to research to define his new path to cure.  Last week we spoke to a transplant specialist from Chicago, Childrens Memorial hospital. Today, Mommy, Liam and Daddy will be meeting new Doctors in Philadelphia at Childrens Hospital of Phila. (CHOP).  Next week, we meet with Doctors in New York City (Manhattan) at Sloan Kettering Cancer Research center.  Lastly, we may travel to St. Jude's in TN and Childrens hospital in Los Angelos, CA before we are done.  Thank you everyone for sharing ideas and suggestions.  Clearly, we are open for ideas if you have some valuable information, send them directly to Kevin at kkane@qaassociates.com.  There a many other well-known cancer research centers that some have suggested.  However, the key is identifying those with neuroblastoma specialists.  Liam's new path to cure now must include Phase 1 & 2; sometimes highly experimental therapies offered only by neuroblastoma specialists.  We are confident that we are currently reaching out to the best in the country.  As always, the greatest help everyone can offer is continued prayers.  Pray for time and wisdom for Mommy & Daddy to make the best treatment decisions for our little big man.  Thank you!

4.15.05, Friday, 12:40am

I have so much I can say, so much research, so many stories I have learned speaking to other parents of nb relapsed children these past few days that I really don't know where to begin.  Andrea and I have replenished hope because we are beginning to formulate possible next paths to Liam's cure.  We will hold onto hope until there is no longer hope to be had, this is certain.  I can not sleep for I have so much information floating around in my head.  Tonight, Andrea is with Liam at the hospital.  Liam and I had a decent night together at hotel dupont last night, the usual hospital interruptions for sleep, but overall it was a decent night.  I cherish the conversations I have with Liam in the middle of the night, Liam in his hospital bed, me in the pull out chair, he decides to discuss the plans for the next day with me at about 3:15am.  He plans for he and I to color the dragon poster from his Meme first thing in the morning, then watch power-rangers movie, then "maybe" take the morning medicines (he always leaves room for negotiations when it comes to medicines :-).   I smile then cry to myself.  He does not understand how very important it is for his body to respond effectively to this next round of chemo.  It is critical.  His tumor within the bone marrow is being aggressive so we must start fighting it now.  

Tonight, at 12:49am, I am still waiting for Mommy's call to tell me that they have begun the chemo.  We were supposed to begin at 8pm, but Liam's specific gravity in his urine is still too high and we have to delay for fear it will damage his kidneys.  He is starting the Cyclo/Topo combination of chemotherapy (Cyclophosphamide & Topotecan).  We will do 2 rounds (5 days each with 16 days break in between) of the Cyclo/Topo, then begin all the baseline testing again.  It is critical that his body respond effectively to this chemo and that the tumor in his bone marrow begins to disappear.   Once this happens, we can begin to look at the different phase 1 & 2 therapies that exist in Phila., Chicago, Manhattan or Memphis.  He is not eligible for these therapies unless he responds appropriately to this Cyclo/Topo combination.  The prayer request tonight is simple and direct -  Please pray that Liam's body responds positively to the Cyclo/Topo chemo combination.  Pray that the tumor in his bone marrow begins to be erradicated by the Cyclo/Topo, which will open doors to the other therapies.  Thank you as always.

With heavy heart, I want to tell you that Lizzy Hartz earned her Angel wings.  Lizzy passed last Sat. night, shortly after midnight.  Andrea and I were to attend her funeral on Tuesday, but had to take Liam into the hospital with his high temperature and tumor symptoms.  Lizzy was an incredible spirit at such a young age, such an inspiration, we will miss her.  Please pray for comfort for her Mommy Chris and her brothers & sisters.

4.12.05, Tuesday, 10:46pm

It has been another day of high emotions for us, big ups & downs.  First, the wonderful news is that Liam does not have tumor in his brain!   Thank you God for sparing him of tumor in the brain. It appears that the culprit for the blurry vision, migraine headaches and vomiting is a severe Sinus infection.   Andrea and I were so excited to receive this positive news.  We had prayed so hard and we were truly terrified, especially after Friday's news of his relapse.  We have to celebrate in the "wins" along the way and this felt like a really big win.  We still have to treat the Sinus infection with respect as his immune system is still compromised (via Stem Cell Transplant), but our attitude was "we can deal with this".   Dr. Griffin gave us an antibiotic prescription to treat the infection and we bounced out of the hospital just after 11am enjoying our "win", went to Rite-Aid to fill the prescription and headed home.

We arrived at home to find Liam burning up with almost a 102 degree temperature.  We were back in the hospital by 1:30pm and registering Liam for another stay at hotel dupont.   We also noticed how pale he started to look.  They took blood cultures to see if he was exposed to a bacteria infection in his "tubies".  Also, we provided a stool sample to see if he has an infection in his GI tract, he has been suffering diarrhea for about a week now.  Lastly, they checked his blood red cell, white cell and platelet counts.  We were shocked to learn that all 3 counts had dropped significantly in one week.  This is frightening because it indicates that the tumors within his bone marrow could be growing rapidly.  Now, we are being urged to make our next crucial decisions for his treatment rapidly.  Please pray for time, please pray for continued wisdom for Andrea and I as we research and decide on Liam's next treatments.

Tonight:  Mommy and Liam are at the hospital,  Alli is staying with her GrandMom and GrandPop in Rehobeth a few days (I miss her already) and I'm obsessing on my research and the information provided to us by the Doctor's.   There does not exist a "standard plan of attack" for a relapsed neuroblastoma child.  Its a whole new ballgame.  Andrea and I must reach out to new Doctors, understand new experimental therapies, determine who is best at providing these therapies, is Liam eligible? Is another facility willing/able to treat him?  Will he be covered?  etc.....  For varying reasons, we are currently considering Phila., Chicago and NY cancer treatment centers.

4.11.05, Monday, 6:05am

I am very disappointed to tell you that we received the worst possible news on Friday.  Liam's bone marrow biopsy confirmed that Liam has relapsed with neuroblastoma.  We still wait for the results of the Left Femur bone biopsy, however, Friday's diagnosis makes the femur bone results less significant as we assume its neuroblastoma as well.  The fact that it has relapsed within his bone marrow confirms that once again it is within his blood stream and can reveal itself anywhere in his body.  Basically, we are back to square one, back to the same place we were a year ago when he was first diagnosed on April 1, 2004.  He was named NED on October 21, 2004 at completion of Stem Cell Transplant.  Now, officially relapsed April 8th, 2005.  You must know that our Lead Oncologist used terms on Friday like "very low probability for survival" and "maintenance programs to prolong his life and attempts to maintain quality of life".   Obviously, hard phrases for me to type let alone accept.  Officially, his disease is now classified as "Highly resistant neuroblastoma" as it somehow survived the War we waged against it last year. 

Our immediate concern is Liam's MRI of his head which will be at 1pm today.  We are praying that this evil disease has not invaded his brain/head.  Please God don't take our little boy's mind, personality and being away!  We need to assess how badly he has relapsed so that we can plan our next steps to fight this monster.  "Hell on Earth" for me was this weekend; knowing that Liam has relapsed and not having a plan to attack.

Had I written this post on Friday, I suspect it would have closed on a different tone.  We were devastated to get confirmation of his relapse.  The truth - we never let go of hope, but the seemingly endless weeks of waiting softened the blow, if that's possible.  We know all to well how evil this monster can be, we see it around us everyday at the hospital.  However, we are wiser this time around.  We went through our Anger and disappointment (and still are I suppose) quickly and are now focusing on the new plan.  We have already reached out to new parents groups (those whose children have relapsed - yet another club we didn't want to be members of..) and learned of children currently surviving multiple relapses.  Also, we already reached out to additional neuroblastoma specialist this weekend, so we've already begun to seek and create hope.  Andrea read something to me last night and this, I suppose, is one of the lesson we take for everything we battled last against last year; "Suffering causes perseverance, Perseverance builds Character, Character allows Hope".  Nobody volunteers for suffering, but we have choices how to respond.  We are blessed with an angel, an amazing and beautiful boy who has taught me lessons of perserverance, character and hope wise beyond his years.  We choose to fight. Please pray today that this monster has not invaded his brain. 

Liam doesn't know any details of his relapse, although he is very intelligent and I'm certain he aware that something is going on.  We want to assess how badly he has relapsed, then talk to him on his terms and at a level that he can understand.  Believe it or not, we did actually have a wonderful weekend after pushing through an extremely difficult Friday.  We refuse to let fear rob us of memories with Liam.  We spent a wonderful family day at the Zoo on Saturday and had our extended family over on Sunday, just so we can continue to enjoy life outside of the hospital, now that we can.  We are preparing for another year like the last.

4.7.05, Thursday, 9:50pm

Hi everyone.  We just arrived home tonight with Liam, that's the good news.  We have him home in his own bed tonight.  He did not have the full, open biopsy so we were able to avoid the hospital stay.  Liam did have 2 seperate biopsy procedures today; 1.) Needle biopsy of his Left Femur bone (thigh bone), and 2.) Bone marrow biopsy / aspiration (2 needles in his back, above his hieny cheeks) whereas they take samples of his bone marrow from hip bones. 

The needle used for his Femur took actual bone pieces.  It was a large needle and there is risk that it may have weakened the bone, therefore, Liam has to avoid jumping, bouncing or heavy activity for 4 to 6 weeks for fear it could fracture.  Daddy will be deflating the air-trampoline tonight immediately after this post.  The other concern is that if the nodule is a cancer tumor (Please God no!), that too could weaken the bone and increase the risk of fracture.  We will not get any results from the Femur bone samples until at least Monday.  They have to take the bone pieces, put them in a solution that will de-calcify(sp?) the bone portion of the sample and leave the remainder for biopsy.

The needles in his back are painful because there is more scar tissue to work around each time they do a bone marrow biospy, this is about his 5th.  One of the needle holes on his back, the left side, is bleeding out and we just changed the dressing and are applying pressure to get it to clot.  We may get results back from the Bone Marrow biopsy tomorrow. 

We have him on pain medicine every 4 hours, Lortab (hydrocod-apap solution).  The plan is to keep him on the Lortab around the clock so that we don't lose control of the pain.  10:30pm, 2:30am and 6:30am, we've done this before, he usually takes the meds and falls right back to sleep.

Lastly, we have scheduled an MRI on Liam's head for Monday (4/11) to investigate the blurry eye and migraine headaches.  We received some news today that Migraine could be attributed to the Accutane, so we are optomistic that the headaches can be easily explained and pray for clean results from Monday's MRI.

Thank you everyone for carrying us in prayer today.  We feel your support and can not thank you enough. 

4.7.05, Thursday, 10:10am

A quick post to let you know that surgery services had a cancelation this morning and have moved up Liam's procedure to 1pm today.  Thankfully, we did get Liam out of the house yesterday after 5pm and enjoyed a dinner/picnic at the tot lot in our development.

4.6.05, Weds., 3:45pm

Hello Everyone - I promised an update on the time of his procedure.  Liam will start his biopsy at 3pm. tomorrow afternoon (Thurs.).  It appears that yet again, we may have to wait a few more days to get his diagnosis, even after this procedure. 

We are disappointed today.  Today was to be a great outdoors day for Liam, We had planned the Zoo in the morning and a carnival tonight.  Unfortunately, Liam has been sick and stuck inside all day.  He woke us at 4am this morning complaining of his stomach and his head.  Andrea gave him some pain medicine and put him back down, he went right back to sleep.  He woke up this morning at 7am still complaining of his headache.  He points to his left temple, behind his eye and complained of bright lights.  He had nausea, threw up and feel back to sleep on me for about an hour, then woke up again still complaining of headache.  The hospital agreed with us that his sysptoms are like he is having a migraine headache.  We are continuing to give him pain medicine, but all he wants to do his be held by Andrea or I and sleep.  We love the hugs we are getting all day, but hate the reason why.  In fact, he is sleeping peacefully on Andrea as I am typing this post.  She is asleep as well :-).   We are nervous about this new illness for Liam.  He has never suffered migraine's ever, not even at the worst of times last year.  Yesterday, Liam complained that his left eye was blurry to us and our Nurse.  Today the migraine with complaints of pain behind the left eye.  As a result, Dr. Griffin now wants to schedule an MRI of Liam's head on Friday, the day after his surgical biopsy.

Right now, I am waiting for Andrea and Liam to wake up peacefully on their own.  I am praying he is feeling much better and the we can salvage the afternoon, enjoy the rest of the day and take him to the carnival.  We want him to feel the sun on his face before he goes into the hospital.  Please continue to pray for many positive outcomes for Liam these next few days.  Thank you.

4.4.05, Monday, 12:30pm
Hello Everyone It has been an eventful week since my last post on Monday, 3/28. Liam was admitted into the hospital on Wednesday afternoon (3/30) for fear that he had an infection within his Central Line Cathedar in his chest (his tubies). Andrea, Liam and Alli were on a play-date in Newtown, PA (1 hr. away) when Liam came down with a temperature. The temperature continued to rise later in the day, so we had to admit him around 5pm. Andrea stayed with Liam on Weds. I had another boys night with Liam at the hospital on Thursday night. It is fairly common for Children with compromised immune systems to get nuisance line infections like this, which usually means a 3-5 day stay at the hospital. The standard is to take a blood culture and put the child on anti-biotics right away, which is what we did with Liam. However, after 48 hours, Liams blood cultures still did not show any infection. Therefore, the Doctors let us take him home on Friday night (4/1). We were very happy to have him back home for the weekend, even though the weather did not cooperate.

MRI RESULTS - I Truly wish that I had better news to post to everyone. The MRI results supported the results of the MIBG Scan two weeks ago, confirming that Liam has something within his Left Femur bone that we must investigate. Its being described as a legion or nodule within the very top of his left Femur (thigh bone) at the point where the Femur is within his hip joint.

On Thursday ( 3/31), the doctors offered three possible explanations: 1.) Relapsed neuroblastoma cancer Please pray that it is not. 2.) A possible Bone Infection could explain the fever Liam experienced on Wednesday, especially given the fact that his blood culture for bacteria in the blood came up negative. 3.) Bone Swelling due to Accutane treatment --- occasionally, extended Accutane exposure can cause swelling of the outside lining of bones. After another thorough review of both the MIBG and MRI, the Doctors ruled out #3 because the location of the nodule is within the center of his Femur, and has nothing to do with swelling. Therefore, we are left with only the two possible explanations.

NEXT STEPS - Surgical Biopsy. We must now perform a biopsy in order to determine if this is a serious Bone infection or relapsed neuroblastoma. It goes without saying that we are praying very, very hard that this is a Bone infection and not a relapse. A Bone infection is no walk in the park, it will require approx. 4 weeks of Anti-biotic treatments in the hospital, however, it is a much better scenario than a relapse.

SURGERY Currently, we are waiting to have his surgical biopsy scheduled, we expect it to be Thursday or Friday of this week. It will be a two-step approach: 1.) First, they will try to do a needle biopsy. They will try and remove a sample of the nodule with a needle while Liam is under a CT Scan. They will immediately send sample to the lab for biopsy during the procedure. 2.) Second, If they are unsuccessful with the attempt at needle biopsy, they will come out to Andrea and I in the surgery waiting room and get consent to perform the surgical biopsy. This is so difficult because, believe it or not, they will have to dis-locate Liams hip joint and possibly fracture his leg in order to get the piece of bone to biopsy. The nodule is located in such a place inside his left Femur (thigh bone) that it is unavoidable --- we are sick over this. Our poor Liam, all weekend he was running around the house showing us how fast his new sneakers make him run, and now we may have to fracture his leg --- just so we can find out if this is a Bone infection or a relapse. It is upsetting for me to type. He does not know about this right now, its for Mommy and Daddy to know, for now.

The awful situation we find ourselves in is that in order to achieve the best possible outcome for Liam at this point, we must pray that he requires the Surgical Biopsy and possible broken leg. If the needle biopsy is successful, that means that there is no doubt that the nodule is in fact a relapse of neuroblastoma. We need them to fail at the needle biopsy, thus, requiring the next step of Surgical biopsy, have them remove the piece of bone for biopsy, then have that bone biopsy show up as a serious Bone infection.

Please pray that Liam remains NED, Pray that this nodule proves to be a Bone Infection, Pray that his surgery is successful and as pain-free as possible, pray that Mommy & Daddy remain strong to make sound decisions for our precious little man.

I will update a post again to let you know which day he will have Surgery this week. Meanwhile, Liam and Alli have a jammed packed week of play-dates and picnics in this nice weather. We want him to enjoy the outside, enjoy his friends and just be a 4 yr. old boy the remainder of the week prior to the biopsy.
 

3.28.05, Monday, 4:10pm
Hi Everyone I trust that you all had a great Easter weekend. We had a great weekend filled with church, big meals and lots of family visits. Family is very important to Andrea and I, especially around holidays.

UPDATE: Liam has been scheduled for his MRI tomorrow morning at 9am (Tuesday, 3/29). We continue to pray that this latest test will show No Evidence of Disease (NED). Its not clear when we will receive the results from this test - must reach down deep for more patience! Again, thanks for continuing to pray with us.

I wanted to share the following speech with you because I like the message it delivers. Keeping a sense of humor in times like these is critical. I enjoyed reading this boys speech because we can relate to it on many levels. I often wonder how Liam would summarize his past year if given the chance? FYI we are on the eve of the anniversary of Liams original diagnosis of pediatric cancer on April 1, 2004. That day our lives changed forever.

HEALING TIP!
Kameron, 13, a pediatric cancer warrior, gave the following speech at a cancer fund raising dinner. The crowd loved him and he got a standing ovation.

Hello, my name is Kameron and I am a current cancer patient. Ive been getting chemo for over a year and am eagerly awaiting the end of my treatment. If I had to go through this, Im glad I had a place as nice as Kosairs cancer ward to go to, and would like to thank all the doctors and nurses there, who helped me through this experience. I couldnt have gotten this far without all of them.

When I was asked to speak at this event, I knew that being the person I am I had to write something nobody else would have thought of. I thought for days trying to find something and came up with nothing. So I borrowed a few things, modified them slightly, and ended up with this. So now without further ado, The Top Ten Things I Learned from Cancer.


10: Scans, what they are, what they involve and what they do. After about a month I had been subjected to every kind of scan used to find and diagnose cancer, with the exception of a
mammogram. After a year, I no longer have to turn on a light to find my way around in the dark. Ive been radiated so much, I glow.

9: The Top Ten List, before I got sick I always had to get up for school and wasnt allowed to
stay up late enough to watch Letterman.

8: That school isnt all that bad (not doing anything all day is incredibly boring), making fun of
your friends who are going to school helps but it is incredibly hard to hide when youre the only student in class.

7: Never drink red smoothies when feeling nauseous. When you vomit up red stuff, nurses tend to flip out.

6: That the tiniest things can make you more comfortable. Such as your own pillow (nobody likes hospital pillows) or a universal remote control (having to flip through channels in circles when using a hospital remote gets annoying quickly). It always helps to bring something from home with you.

5: The identity of the most annoying sound known to man. An I.V. pump beeping at 4:30 in the morning. Now I know why you are not allowed to bring baseball bats to the hospital.

4: The value of a hat. Before this I wouldnt have believed how incredibly cold wind is when youre bald. Its a good thing Ive figured this out now so at least Im prepared when I hit my forties.

3: There is no such thing as too much sleep. When youre in the hospital getting chemo you really dont feel like doing anything else, and how much Oprah and Dr. Phil can you watch?

2: Cancer perks, or as there more commonly referred to the upside of cancer. People will get pretty much anything for a child with cancer. If you want a meatball sub at 11:00 at night, chances are that somebody will get you a meatball sub. My advice to anyone in this situation is to use the perks well and often. Theyre a small reward for your fight with cancer.

1: And the number one thing I learned from cancer is:
Keep a sense of humor. If you dont the cancer will eat away at you like, well like a cancer. This is the most important thing to remember and a good philosophy for any hardship in
your life.

Thank you all for listening to my list and if you or a family member are ever in a situation like this remember what I have said. I, at least, think knowing these things made the experience easier. Thank You and Good Night.
 

3.24.05, Thursday, 12noon
Hi Everyone. Finally, we spoke with our Lead Oncologist on Wednesday afternoon. The short version is that we must remain in a wait mode. As we expected, the recommendation is to first submit Liam to yet another test, wait for those results, then make a decision on the next steps. Liam will be scheduled for an MRI as soon as possible.

Andrea and I are remaining hopeful and very optimistic that this MRI will show No Evidence of Disease NED. We are grabbing onto any positives that we can find, and they must know that we are scrutinizing every word when we discuss these results with them.

To quote our Lead OncologistBoth Dr. States and Dr. Finkelstien (Radiologists) agree that there is nothing on both the CT Scan and Bone Scans. They also agree there is a minute and faint little something showing on the MIBG scan in the lower, left pelvic area. If there is something, it will most likely show up on the MRI scan

So, Andrea and I are hearing words like minute and faint and piling that on to our optimism for a diagnosis of NED!

Thank you again and again and again for praying for our little Man. We shall have to wait yet another week or so before we get our anticipated good news.

Kevin

3.15.05, Tuesday, 10:30pm
Well, Ive been struggling this evening to find the right words to express how Andrea and I are feeling right now. We remain optimistic, hopeful and faith-filled but we are grappling with some fear tonight. We are just numb. We did meet with our Oncologist earlier today and learned that this recent MIBG scan found yet another spot within Liam that we must address. It has been a difficult and frustrating day.

First of all, we do not have clarity on the first hot-spot, which is very disappointing. This is the spot on his right side, near his spine where the original core tumor previously existed. We had hoped and prayed that todays discussion would be a validation of Dr. Griffins viewpointthat this first hot-spot is not something we should be concerned about. However, the recent MIBG results made no mention of this area at all. So, do we assume it is non-existent? We hope so, but Dr. Griffin cant say definitively until he can meet with the Tumor board and council with the radiologist.

Secondly, we learned today that this MIBG scan showed a second hot-spot within his left hip. We knew immediately that something was wrong when Dr. Griffin began the meeting by asking if Liam has been complaining of any leg pain. The Scan showed potential uptake of radioactive isotope in the area of Liams left hipit is unclear if the isotope uptake is in the hip bone or within a lymph node nearby the left hip bone. The sole function of this radioactive isotope is to seek out and attach itself to residual Neuroblastoma cancer cells. Similar to the first hot-spot detailed above, Dr. Griffin can neither deny nor validate these results until after the next Tumor Board meeting. We must wait yet another week until this happens on Tuesday evening, 3/22/05. We may not get to speak to the Doctor until Weds. The waiting is just horrible, almost unbearable. We are ready to make decisions, take action, ready to continue to do whatever it takes to save Liam, but first we must wait.

THE HOPEFUL NEWS --- Both the CT Scan and Bone Scan were clean. Neither of these tests showed anything in the area of Liams left hip or area of former core tumor. This provides a definite source of hope. But why would the CT Scan and Bone Scan be clean, yet the MIBG Scan shows problems? The Doctor could offer no explanation.

At this moment, we try and focus on the known facts and try not to speculate. We refuse to believe that he could still be in danger. To see him is to believe in miracles. He is healthy, full of energy, and waiting for Daddy to come home everyday so he can finally wrestle someone since hes not allowed to wrestle Mommy or Alli. Please pray that he remains NED No evidence of disease.

3.9.05, Wednesday, 5:15pm
Hi Everyone -- Thank you so much for the huge response to our prayer request. Thank you for the continual support and willingness to share not only in our wins; but in our fears and concerns as well along this seemingly endless roller coaster ride.

Results? This is always the hardest part the waiting. The best-case scenario is that we will hear the official Test Results on Friday. The most likely scenario is that we must wait until next Tuesday when we are scheduled to meet with our Oncologist. First, a thorough analysis needs to be completed by the Nuclear Medicine Doctor who will compare these results with Liams previous (5) MIBG Scans. Then the NM Doctor needs to council with our Lead Oncologist. Then, finally, we get to discuss test results. The waiting is the hardest part.

Liam completed his MIBG Scan around 1:30pm today. The Scan finally began at 11:45am and lasted over 1- hours. The MIBG does require sedation because the machine must get very close to his body and children (adults too) can become claustrophobic. At one point, the machine was literally millimeters from the tip of Liams nose. Thankfully, he was dreaming about dinosaurs and slaying dragons at the time. The MIBG Scan consists of eight (8) different Scans in total. It took seven (7) scans to cover his entire body. Each of these scan lasts 10 minutes. The technician moves Liams body within the machine each scan in order to focus on a different part of his body (Head, legs, chest, abdomen, etc). The eighth (8) and final scan is the most intense and last 25 minutes. The machine actually spins 360 degrees around his entire body. It stops 32 times and takes 32 different scans as it spins around him. These 32 scans are then converted into a 3 dimensional image of Liam that the doctors can cut, shape and analyze. Pretty amazing technology. I promise to update you all when we are clear on the results. Thanks.
 

3.8.05, Tuesday, 5:45am
Hello everyone --- I hope you not suffering from cabin fever and can sense that Spring is just around the corner! Yesterday was a gorgeous day in Philadelphia with warmth and sunshine. Alas, it is only a Spring Teaser for today it will rain, the temperature will drop 30 + degrees and it will snow during rush hour ugggh.

Liam continues to heal and grow wonderfully every day. We are still trying to mold into our new normal, which is quickly becoming the fast paced lifestyle we were accustomed too prior to Liams diagnosis. Alli is doing fantastic and we are so pleased ---- We are no longer struggling with guilt and wondering if we are neglecting her when had to focus solely on Liam at times in the past. We are looking excitedly into the future, making schooling decisions for Liam, planning a vacation for the 4 of us, etc I must say that we are so grateful to be in the mindset we are today, almost 1 year after Liams diagnosis on April 1st, 2003.

The future continues to look very bright, However, I do need to begin this post on a serious note and with a special prayer request. Liam did begin the baseline testing again last week. Last Monday, 2.28.05, he had a CT Scan of his chest, pelvis and abdomen. On Tuesday, 3.1.05, Liam had a Bone Scan. SIDE NOTE: We were very, very proud of our Little Big Man because he sat perfectly still for one whole hour during his Bone Scan, eliminating the need for sedation. Its a big accomplishment for a 4 yr. to sit still that long!

Liams baseline testing continues into this current week. The special prayers that we are requesting you to focus relate to his MIBG Scan, which will take place tomorrow (Weds., 3.9.05 at approx. 11am EST). His previous MIBG Scan (about 6 weeks ago) showed a very small hot spot in area where his core tumor was previously removed in surgery. Our primary Oncologist feels that this is not something that we should be very concerned about based on his experience. He feels it could be 1.) Scar tissue from the original surgery or 2.) Benign (non-cancerous) tissue that may have previously been residual neuroblastoma cancer cells that was killed by either two of Liams post Stem Cell Transplant procedures, a.) Radiation or b.)On-going Accutane treatments. We have resolved to trust our Oncologists judgment as we have grown a tremendous respect for Liams entire team. However, we are aware that this evil cancer can be very aggressive at times and we are praying, pleading that this test is merely a validation of our Oncologists viewpoint. We refuse to believe that he is in any danger right now because to look at him, he is a miracle.

Please say a special prayer for Liam, Please pray that this hot spot either disappears or that it remains unchanged, thereby showing no growth and validating that it is dead, non-cancerous scare tissue. Please pray that Liam remains NED No Evidence of Disease.

Thank you very much.
 

Sunday, 2.20.05, 6:30pm
Hello everyone Liam and Alli are excited tonight because we are on a Snow watch, Philadelphia is expecting 3 6 inches tonight ending just after rush hour, it should be fun, fun, fun driving to work in the am. We just finished dinner and Liam is about to watch Disneys Dinosaur movie while we prepare his medicines and Accutane. Liam knows this story by heart and tells Alli the parts that she should cover her eyes! Liam always tells me when our favorite part comes on Daddy, thats when the two Carnataurs (Bad guys!) fight with Aladar (the Good Guy, an Iguanadon). However, that part cant compete with our other favorite part when Aladar gives all the lemurs smoochies. Help me I think I know this movie as good as he does! Alli just disappeared by herself in the playroom, which usually means she is off making a surprise in her diaper for Mommy or Daddy. Shoot, I think its my turn on the diaper . Whew, my delay tactic paid off and Andrea just grabbed Alli and changed her diaper . We are pushing towards our new normal and it feels really good. The hospital visits are now down to 1 day per week (This is Huge, Liam spent 160+ nights in the hospital last year). We still give him 7 medicines twice a day (morning / night), 2 nose sprays twice a day, 60 mg of Accutance twice a day and Flush his tubies each day to avoid infections --- but this is part of our normal and has become routine. Its been wonderful to spend equal time, lots of time with both kids and not have them separated.

Another benefit of Liams health improving is that we can consider entertaining again, occasionally, We dont want to push it and end up back in the hospital with infections again. Anyway, We ended up having about 20 people over for the SuperBowl. Its just a darn shame that the Eagles didnt show up for the SuperBowl! John Alessi was interested in using his DLP projector he had purchased for his work several years ago. He asked if I would be interested in displaying the game at 6ft. x 4ft. on my basement wall? Needless to say, I helped John temporarily hang the projector from my basement ceiling and we had football players almost life size for the game. It was a lot of fun but we were very disappointed in the Eagles. Also, we had the Alessi boys and Heald boys over for a Movie showing of Toy Story II shown on the wall before we removed the projector. We hope that everyone had a great Valentines Day! Andrea and I managed to pull off a romantic dinner at home by getting Alli and Liam down earlier than normal.

ALLIs been fighting two ear infections these past two weeks. We have tried the best we can to keep Liam and Alli separated to avoid infection, So far so good. Allis sickness has helped with Liams continual healing, believe it or not. Liam said to me Daddy, Alli got sick and the Doctor gave her medicine just like me, and now she is getting all better just like me! It great to hear him begin to accept / understand that his path to cure is on track! Thats the way it should be he needs to continue to fight and be strong and visualize himself being cured. Its the burden of Mommy and Daddy to worry he needs to be a 4 yr. old little boy. We will worry enough for him.

Which leads me to think about Liams upcoming baseline testing and Scans. He started his 3rd round of Accutane on Feb. 16th. This is his 3rd 14 day cycle which will end on March 1st. Then he has 14 days off, during which we will schedule all the baseline tests and scans once again. We will be taking the MIBG scan and we are continuing our prays that Liam remains NED No Evidence of Disease. Please, Please, Please Pray that the spot from the previous MIBG Scan either disappears or doesnt change (remains identical to last scan confirming no growth). We have accepted the Doctors direction that it is not something that he is to concerned about. However, in the same meeting he grounds us by telling us he personally has never treated a relapsed Neuroblastoma child who has survived. It is very difficult to wait, he looks so tremendous to us that we cant possibly believe he is still in danger. Last Tuesday we learned that his ANC was 2800 (3-5K is good), his platelets were 150K (< 150K is perfect), this is the best platelet number he received since beginning Chemo last April, 2004! His white blood count was and his red blood count was 10 (11 15 is good), again, one of the highest red cell counts since April, 2004.

JELLO vs. COOKIE, the big debate. We started something new for this 3rd round of Accutane. Instead of Cookies, we are trying to mix the Accutane with Jello. Its beneficial because we can get all of the mixture on one spoonful and hopefully shorten the twice daily battle. His fighting has progressed with each round we have given. It is getting increasingly difficult to get him to cooperate. I literally just came from having to threaten to hold him down and force him to take it. He knows as well as I do that that scenario wont work. I have had to try this already and its disastrous, he gets sick, huge science, etc Id like to see how the SuperNanny would handle this scenario, , you cant simply send him to bed without his dinner (in this case Accutance) because he must take it to save his life. There is no short-cut. It took me over an hour this morning to complete the program. Oh well, Waaahhhhhhhhh I just caught myself complaining, no gain in that.

He just now came to me to report to me that he took the medicine from Mommy. We hug and I tell him that Im very, very happy that he took the medicine and that Im sorry I made him cry (again) to make him take his medicine. I hate being the bad guy but I must. I ask him to understand that he has no choice and that he must take the medicine to continue to make him all better. He agrees with me for now. Chances are very high that tomorrow he will forget our little agreement.

2.5.05., Friday, 12noon
E-A-G-L-E-S = Go Eagles! This is an exciting weekend for us Philadelphia Eagles Fans!  No offense Patriots fans, but this is the year Philadelphia Eagles breaks our own curse -- You just sit back and enjoy your Red Sox Baseball Championship, we plan on taking the Football Championship this Year! We are having a lot of fun with all the Eagles hype - It is very common to hear Liam and Alli chanting the EAGLES chant in the Kane household these days.

Anyway, Football hype aside, I want to update you on Liams progress. Overall, Liam is doing very, very well. He continues to eat well and his hair is growing longer. Fighting the medicines and Mood swings remain high on his agenda. The effect of the Accutane on his personality and moods is very obvious. Poor Alli, she doesnt know if she is going to get a hug or a punch from her big brother at any moment of the day.

2.1.05., Tuesday - Liam went for his weekly anti-fungal treatment. Andrea took Alli along for the day this time and it seemed to work out well. Liams counts have recovered well from last weeks first test to his new immune system. His ANC is at 2500 ( 3k 5K range is ideal), Red blood count is 10.1 (11 15 is ideal), Platelets count is 106K ( > 150K is ideal) and his White Blood Count is 3.9 ---- the fact that he has a white blood count is the win here.

MOOD SWINGS
As I mentioned, Liams mood swings have been a real challenge lately. It is obviously linked to the Accutane. We spoke to Wendy, A.I. Dupont child psychologist that we are very fond of, and spoke with a member of the Oncology/Hemotology Team (the group prescribing the Accutane, not to be confused the Stem Cell Transplant Team geez!), and they agree that his emotional swings are classic depression side effects for Accutane. They confirmed for us that its not just him being a 4-yr. old. He has actually told us I cant stop being mad Mommy. The good news is that it dissipates once we stop the cycle and our lovable, playful, sometimes mischievous , little big man returns.

2nd CYCLE COMPLETE
Liam completed the second cycle of Accutane on Weds., 2/2/05. He gets a break for 14 days, and then we start 3rd cycle on 2/15. We expect to schedule his next baseline tests (Scans) after he completes 3rd cycle.

LIAMs FELLOW WARRIORS
T.J. - (10 yr. old boy) finally received his Stem Cell Transplant during the week of Jan. 27th, pray successful engraftment and for his speedy recovery.
Jimmy - (5 yr. old boy) is scheduled to receive his Stem Cell Transplant next Weds., Feb. 9th. He is doing the High-dose Chemotherapy now, pray for his successful Transplant as well.
Lizzette we have no news on Lizzy, hoping that no news is good news!

SAD NEWS
Ryan Hamrick earned his Angel wings on Weds. 2/2/05. Please pray for him and peace for his family at this sad time. Liam and Ryan met at the Dodge ball benefit last summer. I have a t-shirt that Ryan signed for me that day. I think of him every time I wear it and will continue to do so.
Ryan Michale Hamrick
2-2-94 - 2-2-05

1.25.05.,Tuesday, 6pm
Too funny! Everyone is accusing me of creating a cliff-hanger in my last post, similar to the Flash Gordon / Roy Rodgers serials in the past. Dont you remember that Roy Rodgers always survived in the next episode? It always turned out o.k. Well, similar story here with our house, let me finish:

ALLI GETS SICK, 10 FIREMEN IN OUR HOUSE
In our last episode, Alli began getting sick (vomiting) out of nowhere and without any warning. This happened 3 times within a half hour. Then she was acting as if she was exhausted just collapsing in Andreas arms and falling asleep. It was right then when our carbon monoxide detector on the ground floor starting going off. Coincidence? We couldnt be sure, but it was to risky not to investigate, especially with Liams compromised immune system were always on guard. Andrea, Liam and I seemed fine, however, we decided to air on the side of caution and call our local Fire dept. I looked up the number to the Firehouse, trying to avoid 911 since it wasnt an emergency, we just wanted someone to come out with a carbon monoxide detector walk around the house, check the heater, etc. and eliminate carbon monoxide as a possible culprit. Mind you, the detector continues to go off during this whole time. So, I speak to someone at the Firehouse, make my request and qualify this situation several times as not an emergency. Im told that they cant send out a fireman with a detector unless they are dispatched and that I must call 911 I said, ok then, but so you know, its not an emergency! Well you can see where this is going no doubt a few minutes later here comes 3 Fire trucks, Police and Ambulances to our house. Dont get me wrong; we appreciate the response if it was a true emergency! Anyway, a certain 4yr. old boy was in his glory, he was so excited Daddy, Daddy, Firemen are coming to MY house! Daddy, Daddy, I see 10 Firemen! I counted them. Long story short, we confirmed that Alli had a virus and we were the victims of a faulty detector it was merely coincidence.

BASELINE TESTING RESULTS BACK
Thank God the majority of Liams tests came back clearly as NED No evidence of Disease. However, we have had a few restless nights regarding the results of his MIBG Scan. If you recall, MIBG Scan is a nuclear medicine test -- 24 hrs. prior to the scan, Liam is injected with a radioactive isotope. This isotope seeks out and attaches itself to cancer cells. Cancer cells show up as bright spots on this scan. The scan result resembles a black & white photograph negative of Liams body; bright spots show areas to investigate. A very small spot showed up in Liams abdomen, in the area where the largest tumor was previously resected. Dr. Griffin felt that it might be scar tissue from surgery or matured, benign (non-cancerous) tissue, as a result of radiation that was focused in this same area. This discussion was last Tuesday, 1/18/05. Dr. Griffin wanted to meet with the MIBG Dr. and confirm his suspicions and get back to us on Friday, 1/21/05. Thank God, the MIBG Doctor agreed that it appears to be stable with no evidence that it is active tissue. We have no choice but to accept their prognosis and try not to worry about it. We have no choice but to trust the Doctors once again, which we do 100%, but it still is the hardest thing to do, even after 10 + mths. We still hate this feeling of being helpless, like our childs future is not in OUR control. Its the parents lament. We have prayed and we do feel at peace with this situation, we trust God just the same, 100%. The only way to truly confirm that this spot is non-active is to perform a surgical biopsy of the tissue, but we arent taking Liam back into surgery with the current prognosis. Whats Next??? - We have to wait approx. 7 weeks until the next MIBG scan is scheduled and compare it to the recent test to confirm that there is no growth, no activity and no change. Please pray that this tissue remains NED, remains non-active and that Liam remains in remission. Please pray hard.


Today 1.25.05, Liam went back to the hospital for his weekly abelcet (anti-fungal) treatment in I.V. form. His ANC dropped slightly to 2300, but remains strong!

LIAMs IMMUNE SYSTEM PASSES ITS FIRST TEST - Dr. Trigg suspects that Liam caught Allis virus and blames his fever this weekend on Liams immune system fighting off its first real test! He suggested that his diarrhea could be a delayed reaction to the radiation. Radiation lingers in Liams body and is still killing cells over a month after treatment thats frightening. Also, another culprit could be the Accutane. Liams platelets and his neutriphil count decreased, which indicates his body was fighting a virus. Unfortunately, his liver enzymes went up a little, probably as a result of the Accutane. We have to watch his liver enzymes closer the next few visits to see if this remains an issue. Also, the Accutane is giving him dry skin spots, especially around his face where his skin is peeling. His face looks like he is peeling from bad sunburn. Also, his lips are cracking (this cold weather only complicates this).

Danil (Liams buddy from Russia) may be coming back to A.I. Dupont for his one year Transplant check-up this summer hes doing his regular check-ups locally in Russia
 

1.23.05, Sunday, 1pm
Hi Everyone - We hope your New Year has gotten off to a great start. I must apologize for the breakdown in updates -- you all have remained faithfully supportive, amazingly so -- and I want to continue to keep up my end of the bargain! :-). It has been so busy for us that it has taken a major snowstorm to finally slow us down!

Anyway, I now know that I post these updates for several important reasons: 1.) To keep you informed - our extended family, friends and strangers (and former strangers) who have fallen in love with our little big man. You who remain steadfast in your Love, support and prayers and you who admire the heroics of an innocent little boy fighting to survive against this evil disease - I do not think we will ever be able to thank you enough. 2.) A form of "therapy" for Andrea and I. It is helpful to express our fears, frustrations and challenges with you; reflect with you as we make the most difficult decisions imaginable ---- and truly special to share his successes and our Joy with you! 3.) Finally, the most important reason this website exists is to be a gift to Liam. I have a wonderful vision of Liam reading this website someday at a ripe old age, after living a long, fulfilling life. Liam -- perhaps youre reading this to your grandchildren? Maybe you came back to read this story for strength? - to gather confidence for some of the "normal" challenges you must face as you grow up? Liam, Believe in yourself now and always. You have accomplished more as a child than most of us will accomplish in a lifetime. I Love You Son, Dad.

Snow report / local forecast: The official snow number for Philadelphia is 11.7 inches! However, that pales in comparison to what our friends, the John's are dealing with in Massachusetts - they are still dealing with the storm up there and expecting 28 to 38 inches, 65mph winds before the day is done - a true Blizzard. Sharon and the boys are making the best of being stuck inside and plan on riding it out with a Star Wars monopoly tournament. Chris, on the other hand, is stuck in Dallas enjoying 50 degree weather.

TODAY - 1.23.05, we are on "fever watch" with Liam. He woke up at 1am last night complaining of his belly and immediately had diarrhea (poor kid). His temperature peaked at 101.5 --- which is exactly the temperature at which we should rush him to the hospital. We woke up Dr. Bangston and she agreed that we would watch his temp. hourly through the night and see if we could postpone a hospital trip right in the middle of the snowstorm. Thankfully, his temp. came down at 3am without the assistance of medicine (no Tylenol), thus, I didn't have to make a late night hospital visit. However, the deal for today is that we monitor his temp. hourly and must go in if he hits 100.5 degrees or greater. Friday (1.21.05) marked the 3 mth. anniversary of Liam's Stem Cell Transplant. He remains at serious risk to infection for at least 6 mths. after the transplant so we must treat every fever with respect. In fact, some neuphrils in his white blood cells may take up to 2 yrs. to recover from the transplant Chemotherapy, which is still hard to believe. Liam's immune system today resembles that of a newborn child, remembering that he was wiped completely clean of all his childhood immunizations. He is scheduled to be immunized again in August 2005, in preparation for his triumphant return to School and once again grow and learn with all this Friends! Liam and Daddy are hoping his temp. stays down so we can stay home and watch the EAGLES together! Go EAGLES! - beat the Falcons, win the NFC Championship!

I will try to summarize the last few weeks:

MOMMY IS HUMAN TOO!
Andrea (a.k.a. Liam's primary caregiver) came down with the flu on Sunday 1/2/05. This created a major challenge for us because we had to separate Liam from his Mommy for a couple of days. Thank goodness that Grandmom Keahey was able to come visit (Again!) to help with the madness. If you recall, that first week of Jan. had a lot of the "baseline" testing scheduled for Liam ------ therefore, I had to take off work and take Liam to hospital each day for his tests. We kept Andrea quarantined in our upstairs bedroom for several days. It was a really tough start to the New Year!

ACCUTANE-
Since my last post, Liam has completed his first phase of accutane (14 days taking pills -- then 14 days free of pills). Similarly, he has begun taking the pills again for Phase 2, which started Weds. 1.19.05. Unfortunately, it was like starting all over again on the 19th trying to convince Liam to eat what he unaffectionately calls his "medicine cookie", it takes much patience and negotiations, because you can make a 4 yr. old take a bath, you can make a 4 yr. old clean up, etc...... but you can't necessarily make a 4yr. old chew and swallow if he doesn't want to, especially when he knows it a leverage point for him, its something that he can control in this current world of his...... its negotiations at its best. But in the end --- We win, he eats the cookie, because he must. He has been experiencing side-effects like dry skin and mood swings. The mood swings are tough because we have to remember that its not his fault, he is on powerful medicine.

MEGACE / TPN I.V.-
Great News -- Liam is no longer required to take the TPN I.V. at night. The megace has definitely helped improve his appetite. Liam is eating much, much better and has actually gained another 2 lbs - pushing the scales at 38+lbs. It is fantastic to see that his face is filling out and when we hug him and pick him up he feels strong!, no longer frail like he has been for so long. He is actually getting heavy which is awesome! I promise to get some updated pictures on the Site so you can share in our Joy --- he actually has chubby cheeks again!

HAIR, HAIR, BEAUTIFUL HAIR -
It is taking its good ole' time, but his hair is continuing to grow in nicely. Similarly, he has full eyebrows and eyelashes. Its still fairly short, like a #2 clipper cut, but still growing!

ALLI GETS SICK / LIAM GETS FIREMEN IN THE HOUSE
First it was Mommy, then a week or so later, Alli came down with the flu. The new challenge was keeping Alli quarantined from Liam and vice-versa. Andrea had to keep one child downstairs and one child upstairs to 2 days straight. I think she walked the equivalent of 5 miles up and down steps catering to them both! The way Alli became sick created a lot of unnecessary excitement in the Kne home __

..... Sorry, I have to break away now but will continue tomorrow, we have some prayers to request of you! THANKS!

12.29.04, Wednesday, 4:30pm
Thanks everyone for you kind words and well wishes for this Holiday season! Liam did have a wonderful Christmas at home with his Mommy, Daddy, Alli and Grandmom & Grandpop Keahey.  Santa Claus was very good to Liam and Alli this year -  He built a mini-trampoline in our basement just for Liam and Alli. His note said that it was to big to leave upstairs under the tree, so he built it in the basement instead, wasn't that thoughtful of Santa?  :-). We thought it would be great way to get them both exercise in winter months...  Having our family complete over the holiday was the best gift of all!  

Giving Accutane to Liam has proven to be a challenge.  It is very difficult to force a 4 yr old to chew and swallow if simply refuses! --- even when its a cookie you are trying to get him to swallow.  Andrea has made an improvement on the Accutane routine that seems to be working a little better.   Twice a day  -  Andrea takes a double stuff cookie, removes the center into a bowl, takes the pills, pricks them with a pin, squeezes the contents out into the bowl, through the pills into the bowl, mixes it all up with a spoon, then puts it all back between the cookies and feeds Liam.  I tried to rationalize with him...."Liam, what other little boy's do you know who get to eat a cookie for breakfast and a cookie for nighttime snack, everyday for 6 mths????".  Unfortunately, he not interested in my logic :-).   Unfortunately, Liam's overall appetite is still not up to par.... getting him to eat anything is a constant fight.  Therefore, Dr. Trigg has doubled his prescription of Megace (promotes appetite) to 80mg, twice a day. Also, we are keeping him on the nightly TPN I.V. for now.

Today, Weds., Liam took a GFR Kidney test in the morning.  Followed up with the weekly I.V., Anti-fungal treatment (Amphotericin) this afternoon.  This is the I.V. form of Amphotericin, which is the exact same medicine we give him twice a day in Nose Spray form, all in an effort to prevent a fungal infection.  Next week he starts the battery of baseline testing --- it will be a very busy week for he and Mommy.

We want to take this opportunity to wish you all a Very Happy and HEALTHY New Year!  Thank You for Everything!!!   We will be enjoying a nice New Year's Eve at home ---  we want to bring in this fresh New Year with Liam and Alli ......  Here's to a fresh new start to a fresh New Year, a Cancer - Free New Year!!!

12.23.04, Thursday, 1:20pm
Hi Everyone - Andrea, Liam, Alli and I want to take this chance to wish you all a very, Merry Christmas!  This is going to be a very special Holiday for us!  We view everyday with Liam as a Gift and this year we are getting the best Christmas Gift possible -----  Liam is Home and we continue to see physical changes in Liam, (Hair growth and weight gain) proving to us that he is recovering from the difficult 9 mths. he just came through.  It really has been a miracle for us and for Liam.  Currently, Liam is considered "NED" - No Evidence of Disease, a world away from his diagnosis in April ............ We need to be especially thankful this year as we celebrate the birth of Jesus and recognize the true meaning of Christmas!

LOTS OF UPDATES TO POST:

Andrea and I meet with Dr. Griffin on Tuesday, 12.21.04.  Dr. Griffin, as you may recall, is our Primary Dr. within the Oncology / Hematology (made up of 5 Doctors...).  We had to consent / discuss Liam's next major phase in his path to cure ----  6 mths. of 13-Cis-Retinoic Acid treatment (the Accutane treatment).  However, Liam is still under the care / guidance of the Stem Cell Transplant Team - headed up by Dr. Trigg.  They do an excellent job of coordinating their treatments, etc....  but it can be confusing at times as both are prescribing different medicines in support of Liam's health with respect to their primary focuses.  The net-net is an abundance of necessary medications for Liam, and the list just keeps growing it seems.  For example; Liam began his Accutane treatment on Weds. morning, 12.22.04.  He must take 120 mg. of Accutane per day for 14 days straight, then no Accutane for 14 days --- this completes 1 cycle.  He will complete 6 cycles which will take approx. 6 mths.  He was prescribed 20mg pills, thus, he will be taking 3 in the morning and 3 at night each day.  So far, the pill taking exercise has taken 45mins. to 1 hr. each time and frankly, we do not have an additional 2 hours to find in our days with everything else he already must take, so Andrea is in "creativity mode".   Last night she put pin holes in the 3 pills, emptied them in between "double-stuffed" cookies, put the pills in between, smashed them into a cookie sandwich and convinced Liam to eat it ---- eventually.  

The purpose of the Accutane is to take residual Neuroblastoma cells (if they exist, pray they do not!)  and mature them to a state of a "benign cell".   Accutane does not attack / kill neuroblastoma cells like Chemotherapy, rather, it attempts to "mature" them.  Cancer cells begin as "normal cells" and are supposed to have a normal lifecycle and eventually die off and be replaced by other, normal cells.  However, cancer cells - for unknown reasons, will mature to a certain state then suddenly stop maturing, remain in a "frozen" state and begin replicating themselves over and over again and produce masses / tumors that eventually interfere with the "lives" of normal cells.  Accutane has the effect of taking cancer cells and re-launching their lifecycle and taking the cancer cells to maturity.  In other words, Accutane can trigger a cancer cell to complete its lifecycle and die-off, and remain as a dead / "Benign" / non-active cancerous tissue in his body, as opposed to an "live" / immature cell that is frozen and replicating itself over and over and over again.

STILL MORE MEDS. =   Dr. Trigg prescribed mezazone (sp?), to be given daily to Liam to help promote his appetite.  Clearly, he is eating better --- however, we do need to ween him off the nightly TPN (Nutrition I.V.) and his current appetite will not provide him with enough nutrition.   We learned that Liam is scheduled to go through the whole battery of "baseline testing" again during the 1st week in January -- including, CT-Scan, MRI-scan, MIBG (nuclear medicine) Scans, Bone Marrow biopsies, etc..... combined with the weekly fungal treatment, Its going to be a very busy 1st week in the New Year for Liam and Mommy.

LIZZETTE has been able to go home!  She survived the Transplant and was in PICU for several weeks afterwards.  She had recovered enough to be able to go home for the holidays -- but her Mom, Chris tells us that her heart is operating at a 30% capacity, so she is weak.  Please pray for continual healing of Lizzette.

SANTA CLAUS will have to make a special stop at the Bone Marrow Unit, unfortunately, a lot of Liam's buddies - Grace, Jada, Alex, Andrew, Shayda - will have to stay in the hospital for the holidays ....  Let's hope Santa makes it a special day for them.   We believe that Jada will receive her Stem Cell Transplant on Friday - Christmas Eve day - pray for success. Meanwhile, we are going to focus on enjoying these holidays together as a family.  We hope you do the same!  Liam and Alli can not wait until Santa Claus arrives!  We plan to put out special cookies for Santa to eat on Christmas eve, we have carrots to leave out for the Reindeer and St. David's provided us with magic dust to spread on the Lawn to help the Reindeer on their long journey, the magic dust helps them fly you know.....

Friday, 12.17.04, 6:15pm
Thank you everyone for sharing in our Joy of having Liam home for Christmas - its definitely going to be a blessed holiday in our home.  Similarly, we are already making plans to bring in the New Year at home with Liam; we have our sights on starting a fresh, HEALTHY new year in 2005!

MORE good news:  Liam weighed in at a hefty 36.5 lbs. on Wednesday.  This is a great achievement since he had not gained any weight since diagnosis back in April when he weighed 33lbs.  He dropped as low as 26.5lbs during treatment, that's a 20% drop, the equivalent of a 200lb man (no names - Daddy) dropping 40 lbs.  His appetite is steadily coming back and he has remained on the TPN I.V. since his Transplant on October 21st.  He will remain on the TPN for the time being.  Liam did require a red blood Transfusion on Weds. I am embarrassed to say that I have lost count - an educated guess is that Liam now has had close to 60 transfusions.

Liam has been receiving a steady flow of love & presents from a mysterious "Christmas Elf" this holiday season.  We do not know who you are for certain, but we have our suspicions :-).  The only clue is that the return address is CA and not the North Pole.  Thank you for spoiling Liam - whoever you are???   Aunt Karen and J.T. are visiting us from CA, but they're not talking, so it will remain a mystery for now.   We have a great weekend of events planned while they are with us.....  Liam adores his older cousin J.T. and couldn't wait for him to arrive.

EXTENDED BREAK:  Andrea was told by Dr. Trigg on Wednesday that Liam's next visit was in 7 days, next Weds.  She was shocked.  This is the longest time that Liam will not have to schelp back to the hospital to be poked, prodded, assessed, etc... in close to 9 mths.  There has never been more than a 3 day break for him throughout this entire process.... it seems crazy, but its true.

Take care everyone -- thanks for continuing to share in our JOY!  Have a
wonderful weekend.

12.14.04, Tuesday, 7:00pm
YES - Another major Milestone achieved by Liam!  Today marks his 12th and final radiation treatment.  The nice radiation team at Christiana Hospital had a cake for Liam for completing his treatment today.  Thank God for no side-effects for Liam, he has breezed through the radiation treatments like a champion.  In fact, I can hear him running around chasing Alli as I type this post, he's doing awesome.

NEXT STEP =  6 mths. of 13-Cis-Retinoic Acid (Accutane).  This is basically the same treatment used to treat acne.  Its been proven that Accutane causes residual Neuroblastoma cells to mature quickly and die-out naturally.  This is another "preventive" treatment, similar to the radiation, and is an attempt to avoid a recurrence of Neuroblastoma tumors.  The hope is that it will attack residual Neuroblastoma cells "IF" some remain in Liam's body. That is a big "IF" which can not be confirmed with tests that are available to us today .....  So, we take this preventive path and still continue to pray that "ALL" Neuroblastoma cells have been eradicated from his body forever.  Andrea is meeting with the Oncology / Hematology Doctors next Tuesday, Dec. 21st to learn more about the treatment, side-effects, etc..... We believe Liam will begin Accutane on the 21st.  We are preparing for the "pill battle" with Liam.  Apparently, in order to provide the high dosage necessary, these Accutane pills are similar to "Horse pills" and are very large.  Many parents have shared with us their difficult experience of trying to have their young children take these pills 5 times a day.  We shall have to get creative once again.....

Hair, Hair, beautiful hair!!!!  Yes, its true that Liam is beginning to show a little "peach fuss" on the top of his head.  Also, his eyebrows and eyelashes are beginning to grow in very slowly.  It has been nearly 7 months since Liam has had hair on his head and we are excited to see what he looks like again!  At this rate, it will be another couple weeks before it really comes in, but we are hopeful.  Chemo is the culprit for the hair loss. Chemo is designed to attack fast growing / fast dividing cells (cancer cells).  However, other fast growing "healthy" cells like hair and mucous membranes are also affected by chemo.  It has been 9 weeks since his last Chemo treatment (high dose treatment, prior to his Stem Cell Transplant on 10.21.04), thus, it appears his hair growth is starting to recover!  I'll keep you updated on the growth!  Its a good thing his hair is coming back because winter is upon us.... I'm convinced that hair serves another major purpose other than looking good ------- thats keeping your head warm! This is my first winter with no hair and I can confirm that the old theory is true ---- Im losing 90% of my body heat right off the top of my bald head!  Brrrrrr......

Great News!  Lizzette is out of Pediatric Intensive Care and back on the BBMT (Blood & Bone Marrow Unit).  She was in PICU for weeks due to complications with her heart.  However, we saw her walking the halls today slowly regaining her strength.  Lizzette's Mommy said they are close to stopping the GCFS shots (promote white blood cell growth), so they can make an assessment on the success of the Transplant.  We need to see new growth off her own white blood cells to confirm success.  Please pray that her Transplant proves successful!   Jada (3 yr. old girl) and T.J. (10 yr. old boy) were scheduled to be the next Stem Cell Transplant kids. Unfortunately, T.J.'s Transplant was delayed.  Please pray that T.J. may find a new donor very soon.

GIFTS for the BBMT unit!!!  Good friends of mine from TEKSystems, Inc.( A partner company to my company, QaAssociates, Inc.)  visited the BBMT unit today giving Christmas gifts to all the Children on the unit.  It was a wonderful gesture and I want to thank them for their generosity! Thankfully, it looks like we will have Liam home for Christmas, however, many of Liam's friends are confirmed to be stuck in the hospital for Christmas, including; Shayda, Megan, Lizzette, Alex, Anne Mary and Jimmy. The presents delivered today will help make the stay a little more palatable.

Tomorrow (Weds.), Liam goes back to the hospital for his weekly anti-fungal treatment.  We are still giving him all the same medications during the day (Bactrium, Acyclovir, Zofran, Nose sprays, etc...) and still hooking him up to the TPN (Total Nutrition) at night.  We are hoping we can begin backing down on some of this meds. before we begin the Accutane --- but this remains to be seen.

12.8.04, Wednesday, 8:55am
Hi Everyone - I'm very happy to post that Liam continues to breeze through the radiation treatments with minimal side-effects.  Please continue to pray that long-term side effects remain minimal or non-existent as well.  Liam had some nausea last week in the morning, he woke up screaming feeling as if he was going to get sick, but we were able to calm him down and avoid it, thankfully.  I just spoke to Mommy before I wrote this note ---  Liam was just about to be sedated in preparation for this morning's radiation treatment.  Today's treatment is # 8, only 4 more to go.....  Liam explained to me earlier today that "Daddy, I have to go to the hosipal (we love the way he pronounces "hospital", minus the "t" ) a few more times to get my x-ray and then I'll be done with them...." .   Today is a long day for Mommy and Liam as they first go to Christiana Hospital for radiation, then finish at A.I. Dupont for the weekly anti-fungal treatment.

We are so thankful that Liam has had no side-effects to radiation, this has allowed him to remain an "outpatient", thereby keeping him home with us every night ----  its been the longest stretch of time "at home" that we have experienced since he was diagnosed in April.  We are actually getting back into sort of a routine again.... its wonderful. 

Andrea and I are sleeping better this week now that we have made our decision on the monoclonal anti-body clinical trial.  We have decided against it.  I've spent many hours researching, speaking with parents of children whom have participated, annoying the doctors with questions :-), etc......  to come to our conclusion.  The bottom-line is that potential gain is minimal and the potential risks are great.  The risks (side-effects) are known and documented.  The "gain" is minimal, speculative and yet to be proven.  Liam has fought like a champion and has earned his chance at life. We decided to not introduce more risk at this time and continue with the current treatment plan.   We feel that we have hope, faith, love, courage and confidence on our side.

Wednesday, December 1st, 1:45pm
Welcome to December everyone - sorry its been over a week since my last post, this will be a long one........  Liam has just completed his 3rd radiation treatment this morning and he is doing just great.  No visible signs of side-effects so far, we don't expect to see any until this weekend, which will be about a week after the start of radiation treatment.  It is possible that he will have nausea and vomiting since the radiation is focused on his abdomen.  The actual treatment is very quick, taking only minutes.  The preparation is the part that takes the most time ---  they must sedate Liam each day so that he lies perfectly still, then line up the machine on each tattoo dot (the "X" marks the spot) and give him the radiation.  About 7 medical professionals are involved in set-up, including the radiation tech., nurses, etc....  It is upsetting that everyone must leave the room, and leave Liam alone in the room, before the treatment is given, it just re-enforces that fact that we are hitting him with more poison.  The entire procedure (preparation, sedation, radiation, then waiting for Liam to "wake up" in recovery takes about 3 hrs. each day.  Liam will continue this for 9 more sessions, completing on Dec. 14th, he gets the weekends off. 

Today (Weds.) is an especially hectic day for Mommy & Liam, they must first travel to Christiana Hospital (Newark, DE) for his radiation treatment. Then, they must travel to A.I. Dupont so that Liam can receive his weekly anti-fungal treatment via I.V., which takes another 4hrs.  Finally, he will have his blood tested as always and if they show low counts, he may have to stay for a red blood or platelet transfusion, adding another couple of hours....

We did have a wonderful Thanksgiving with Liam out of the hospital.  We were able to do the traditional meal at my Mom's house and Liam played with all his cousins, it was great.  Having him home has a tremendous positive effect on our entire family.  We took Liam to the hospital on Thanksgiving day (Thurs.) and on Sunday, 11/27.  These were the standing visits to check Liam's blood counts.  Liam did receive a red blood Transfusion on Thursday. Mommy sent us in with a bunch of "make your own Turkey" sticker books for the other kids and nurses on the floor.  The stickers were a big hit and suddenly different versions of Turkeys were hanging everyone on the bone marrow unit on Turkey day. The good news from Sunday's visit was that we witnessed the 1st significant increase in Liam's ANC number without the assistance of a GCFS needle (which promotes white blood cell development). Translated -- another good sign that his New immune system is taking root on its own! 

Thanks for your Happy 10th Anniversary wishes for Andrea and I --  we did get a chance to celebrate on Friday.  We planned a full day, leaving the house at 9am after completing Liam's morning medicine routines, then we disappeared until 8pm, when we had to return to do the evening meds, TPN I.V. and Anti-biotic I.V., then we snuck back out for some drinks and stayed at the same hotel in which we spent our Wedding night, we fit about 4 days worth of fun in less than 24 hrs.  Andrea and I are truly blessed with a strong Love for each and we know this has helped us through this trying time for our family.

I know most of you are wondering about Lizzette's condition, which is unclear to us right now.  I did learn on Thanksgiving day that she was put into the PICU (pediatric intensive care unit) and her condition was stable, but we have not been able to get an update on her progress since.   It is against the law and against hospital policy for the Doctors / Nurses to discuss other patient's conditions.  Thus, we must wait until we see Chris, Lizzette's Mom or another family member to get updates.  Please continue to pray for her successful recovery from her Stem Cell Transplant.

Andrea and I are currently struggling with yet another tough decision regarding Liam's medical treatment.  We must decide if we want to consent to have Liam participate in another clinical study involving treatment with monoclonal antibodies (specifically; ch14.18).  This falls within the category of "immunotherapy" treatments, whereas medical science tries to embellish / improve on the bodies natural immune system.  I'll try to summarize 20+ yrs. of research and explain the science in simple terms: This monoclonal antibody (ch14.18) is man-made outside of the body.  It mimics an antibody that our body makes naturally in limited quantities.  If successful, the ch.14.18 will seek out and bind itself to any microscopic, residual neuroblastoma cells that may still remain in Liam's body.  When ch14.18 binds to the neuroblastoma cells, the body's natural immune system is stimulated to attack and kill the residual neuroblastoma cells.  In order to attack, his immune system needs to be activated by 2 different drugs, GM-CSF and Aldesleukin (IL2).  All of these drugs, and the combination of them, are "experimental" and future results are "unknown"  ---- this is the very definition of a Clinical Trial.  If we choose to consent to this therapy, Liam will have to endure another 6 mths. of hospital stay.  We also know that the side-effects of these drugs are as severe as the chemotheraphy treatments, possibly much worse - 2 children have died while on this therapy due to complications.

It is impossible to way the "Risk vs. Reward" of doing this study because the "reward" is unknown ----  it is all experimental and "in theory", results won't be known for years, this is the nature of clinical trials.  If the results were known, and they were positive, then this would be a "no brainer" --- but none of the decisions we have been forced to make have been absolutely certain, this is the part of this battle that is maddening for parents.  Did we make the right decision? Will it cause long-term effects on his body? sight? hearing? Will this Clinical trial be the miracle cure? or will it kill him? We are forced to make life changing decisions in a vacuum....

REALITY CHECK:  Andrea and I recently had another hard dose of reality from Dr. Griffin as we ponder on this clinical trial decision.  You have been with us through this entire battle, so I think its right to share with you our current "reality".   The harsh reality is that neuroblastoma is a very aggressive, difficult cancer to cure.  Its cause is unknown and there is no treatment that is 100% certain for cure.  Liam was diagnosed with Stage IV, high-risk  neurosblastoma at age 3 1/2, which is the worse scenario. Children diagnosed under 12mths have a much greater survival rate.  When Liam was diagnosed on April 1st, 2004, we were told that he had less than a 20% chance of survival.  Now, after 8 months of aggressive treatments (6 rounds of chemo, Stem Cell extraction, High-dose Transplant Chemo, Surgery, Stem Cell Transplant, radiation, 50+ blood transfusions), we are told that Liam has now earned himself a 50% chance at survival.  There is a 50% chance that he will have a recurrence and survival from a recurrence is in the single digits.  These statistics are hard to hear, hard to comprehend and hard to type.  Andrea and I cried after listening to Dr. Griffin and hearing these stats once again.

However, Statistics are made to be broken.   We ask ourselves ----  "would our behavior change if Liam had a 1% chance at survival?", "would we stop fighting to save our Son?".  The answer, of course, is absolutely not. Quitting has never been an option.  Liam comes from a long line of survivors and statistic breakers.  His Pepe (My Dad), was diagnosed with Cancer at 42yrs. old and given less than 6 months to live.  He survived for 20 yrs. and re-wrote all the Statistics for his type of cancer.  Liam is a fighter and Liam is a survivor.  We pay attention to statistics only to make informed decisions ----  then we must leave them alone and focus on his future, our future as a family.  We can not live in fear of statistics as this would only serve to distract us from enjoying our lives.  Remission is the focus now.  He must complete the radiation and 6 mths. of Accutane, then we will focus on October 21st, 2009 - This will be 5 yrs. post his Stem Cell Transplant.  We will not truly take a deep breath until we have passed the 5 yrs. in remission milestone.

11.22.04, Monday, 12noon
Hi everyone - unfortunately, we had another short stay at hotel DuPont since my last post on Thursday.  Liam and Mommy were at Christiana Hospital on Friday morning as planned, (for analysis and preparation for upcoming radiation treatments), when Andrea received a call that his blood cultures from Tuesday have showed up "positive" for a blood bacteria.  Therefore, Mommy had to switch gears and bring Liam back to A.I. DuPont to continue anti-biotic treatments to combat the bacterium.  Infectious Disease has gotten involved because this bacteria is not yet identified ---- its not one of the more common staff infections that float around hospitals from time to time.  However, we were told not to be concerned because the "blanket" anti-biotic that we are treating him with is already beginning to eradicate it, whatever "it" turns out to be.....   So, another quick overnight stay on Friday night, Liam and Daddy had a fun "boys night", then we were able to get Liam home by 6pm on Saturday.  So, once again, the plan is to be home for Thanksgiving but we will have to see what this mystery bacteria turns out to be and hope that it is now a mute issue.....

Our 4 yr. old son has tattoos!  We never dreamed we would be dealing with this issue until he was at least a teenager :-).....  The truth is he has 3 black dots, permanent tattoos, that will serve as "X" marks the spot for the 12 radiation treatments.  Liam will be sedated for each of 12 treatments so that he sleeps and lies perfectly still, they will line up the three radiation guns (for lack of a better word) to the 3 spots and fire a short, but strong doses of radiation. 

NEW TRADITION in the making for the Kane household.  We have confirmed that we will be unable to have a "live" Christmas tree in our house this Christmas.  This would risk introducing fungus into our house and risk exposure to Liam.  I don't know if everyone realized this but we have not had a live plant in our house since he was diagnosed in April, too risky. Unfortunately, no flowers in the house for Mommy for our 10 yr. anniversary this Friday.  I will have to get creative.....  It has been our tradition to go out as a family every thanksgiving weekend and cut down our live tree as a family, bring it home and set it up.  This year we are thinking about getting a small tree with a bulb(sp?) and planting outside in the yard ---- we'll have Liam decorate it with us outside.  I suspect we may invest in an artificial tree for inside the house, but I take a firm stance on tradition when it comes to the holidays and I have always preferred live trees over artificial - that's just me.

Lizzete will receive her Stem Cells on Weds. morning.  Please join us in praying for her successful Transplant and for her cells to quickly engraph themselves and to begin to re-create her new, healthy immune system.

11.18.04, Thursday, 6:00pm
Hi everyone - We had a minor setback on Tuesday night, we had to bring Liam back to the hospital with a temperature around 10:15pm and he was admitted into the hospital and immediately put on antibiotics.  We can not take any risks because his new Immune system is so immature (4 weeks old today).  The good news is that it was a short stay at hotel DuPont this time; Liam was able to come home on Weds. night, just shy of 24hrs., oh well, another nights stay for the insurance company to fight over....

Liam's spirits and energy remain amazingly strong.  This stay at home has definitely lifted all our spirits - its great to have a whole family unit again.  Liam and Mommy will visit Christiania hospital tomorrow as we prepare Liam for the upcoming radiation treatments.  Liam will be sedated tomorrow and have several scans.  The Radiation team will analyze Liam's abdomen and make determinations of radiation "entry points".  They will actually tattoo him with temporary tattoos, sort of an "X" marks the spot scenario. The goal is to hit Liam with 3 separate beams and have the beams of radiation intersect at the previous location of his core tumor.  Thus, the radiation will be the most intense at the spot his tumor previously existed and will touch all the surrounding tissue that had previously been connected to the core tumor.  The risks are that the beams must pass through his small intestines and kidney(s) to get to this location.  The fear is that the intestine and Kidney can have delayed problems, worse cause, they develop cancer within themselves due to radiation exposure.  His treatment will begin on Monday, 11/29.  Please pray that the radiation destroys only residual tumor cells (if any) and does zero damage to his intestines, kidneys and other healthy organs.

Lizzy, Liam's 8 yr. old friend, has decided to go forward with her Stem Cell transplant.  It will take place next Tuesday or Wednesday, 23rd or 24th, respectively.  Lizzy and her Mommy have had a very difficult decision to make.  Lizzy's has some damaged organs due to years of treatments with Chemotherapy.  This makes her Stem Cell Transplant extremely risky, however, this is her only option and chance for survival.  She has decided to fight for life and take her chance at survival -- for this, we are very, very proud of her....  Please pray for Lizzy, she needs our prayers now more than ever.  We were touched because Lizzy asked to have Liam's hospital room for her Transplant, hoping that some of Liam's success will come her way. 

11.15.04, Monday, 2:00pm
Hi Everyone --- YES!!!, I am confirming that we did in fact get Liam home last Wednesday (11/10)!  Sorry we haven't been able to post an update sooner, but its been incredibly busy, our house is once again a very active house with our kids playing together - we couldn't be any happier.  Both children have grown accustomed to either having Mommy or Daddy all to themselves, never together - so, its taken some getting used to for the kids to "share" Mommy and Daddy together.  We are all learning how to live in one house together again. 

Liam is doing really great!  He has begun to regain some of his appetite and he is craving different foods again, a sign that his taste buds are starting to come back to life.  Liam is still on the TPN (Total Nutrition) and Lipids (fat) by I.V.  Andrea and I were trained on administering the I.V. bags via portable pumps in our home.  Each night we put him on the TPN (12 hrs.) and Lipids (10hrs.).  We have to time them to ensure they complete at the same time, allowing Andrea to disconnect him and be on her way to the hospital in the morning, etc....  We planned to give the I.V.'s through the night so that he can run free and just be a mobile kid during his waking hours ---- its working out just great!

His red blood cells and white blood cells continue to drop slowly --- this is expected.  In fact, his ANC today is below 500 (critical mark), so we must really be cautious.  Family members who visit the house are wearing masks, etc... as if they were visiting the hospital.  We expect that he will need both a red and white blood transfusion this Weds. (11/17).  Also, we have to re-introduce the GCFS shots today in order to pump-up this ANC and assist his immune system with creating white blood cells.  Dr. Trigg said that we may have to depend on the occasion GCFS therapy to continue to help his system recover from the transplant. 

The plan for the moment is to keep him germ free, thereby, keeping him home for as long as possible before the radiation treatments begin on 11/29/04. Thank you for never-ending support, we continue to be blessed with an incredible network of friends, family and people whom have never meant Liam, but have been touched by his strength, Thank you.

11.8.04, Monday, 3:43pm
Great News everyone!  Liam is now healing so well that we may actually get him home before we have to begin the Radiation Therapy on November 29th.  He is progressing so well that Dr. Trigg has opened the possibility of our breaking him out of the hospital this Weds., 11/11/04.  Liam was expected to remain in the hospital through Christmas --  having the Stem Cell Transplant, recovering from Transplant, then going right into the Radiation treatments(12 treatments), then recovering from radiation -----  However, SuperMan Liam has other plans!

The reality is that Mommy and Liam will be back at the hospital every single day for on-going analysis, blood work and Anti-fungal I.V. treatments.  The primary difference is that the entire family gets to sleep in our own beds and be home TOGETHER!  Liam must complete the Anti-fungal I.V. treatment on Wednesday, then he should be free to go!  The Anti-fungal treatment will have to be administered weekly for the next 6 months.  Similarly, we will have to continue the anti-fungal nose sprays (6 sprays / twice per day) for the next 6 months.  I had always feared the bacteria was our biggest concern, but fungal infections are the ones that Liam has to be most concerned about for quite sometime.  Additionally, we are back to the daily acyclovir and bactrium medications (4 times/day orally).

We have stopped giving Liam the GCFS (Neutropin) shots for the moment, these help his body create white blood cells.  Therefore, his ANC is no longer "inflated" and we are seeing a more accurate ANC number of 800 yesterday, down from 4400.  You must have an ANC of at least 1000 to fight off infection.  ANC in the 3000 - 5000 range is considered normal.  Thus, Liam will still need to be quarantined for this period of time at home.  Let's not forget to recognize that(... due to the successful Stem Cell Transplant...)  its a Miracle that Liam even has an ANC number !!!!

We are thrilled that we will have Liam home for Thanksgiving!

11.5.04, Friday, 4:28pm
BIG NEWS --  The Poopie Fairy paid a visit to Liam for the first time in over 2 weeks!  This is another great sign of Liam's recovery from Transplant Chemo.  He has been on a morphine drip for several weeks now to help with the mucositis pain.  Morphine is notorious for, shall we say, "causing back-ups at the train station" and therefore, no visits from the Poopie Fairy.  Since he is on the mend, we have been able to gradually back off the amount of morphine in his system and like magic --- "the train pulled out of the station today!".

I'm very happy to post that Liam continues to get stronger every day. Today's ANC number is above 4400!   Weds., 11/3, marked the first day in 14 straight days that he did not vomit.  He did get sick once yesterday, 11/4, but today he is doing great with no sign of sickness.  Thus, we are starting to slowly eliminate the constant nausea medicines from his system.  We are gradually weaning him off the dependency for I.V., which is good news, but this means that we shift back to giving him those medicines by mouth again, such as acyclovir and bacterium.  These "daily" meds were elevated to I.V. form during the mucositis stage because he could not have anything by mouth. We must get him eating and drinking again and remove him from the TPN (Total Paternal Nutrition).  Liam has not had anything to eat or drink in almost 2 weeks, in fact, it will be 2 weeks tomorrow (Sat.) since he nibbled on a cookie.

11.3.04, Wednesday, 4:50pm
Hi Everyone - a quick post to let you know that Liam is still moving in the direction of recovery from the Transplant Chemo.  He is getting better each day now which is wonderful news!  Tuesday's ANC number was 1500, up from 700 on Monday; and today's ANC is 2100!!!  More proof that his super Stem Cells are re-creating his immune system!!!  His skin rashes are healing nicely, there is much less blood in his vomit / mucus, indicating his mucositis is on the mend, the sores are healing.  He is very active - drawing, talking, smiling, walking down the hall to take a bath, etc...  We are starting to get our Liam back gradually.  Thank you for never-ending prayers!  Also, Alli is back home - she is done with the cold and back home today.  Liam was thrilled to see his little sister again.  It was only a matter of minutes before they were fighting over toys -- and we Loved it!  Some level of "normalcy" again - :-)

11.1.04, Monday, 1:30pm
YES!, YES!, YES!- it is true, it is confirmed that Liam's Stem Cells have successfully engrafted themselves and have begun to create his NEW immune system! Thank you God for seeing us through!  The Stem Cell Transplant was a Success!!!

We are rejoicing with this great news!  This was confirmed on Sunday, the 10th day of Transplantation.  We were told that we would have to wait 9 to 14 days for confirmation.  We did start to get signs on day 9; We believe Liam had what they call a "transplant rash" on Friday (day 8), he turned completely Red all of a sudden - gave us a little scare, but the nurses said it "could" be a very positive sign.  Then he started with temperature spikes, another "possible" good sign, but no one was willling to be committal.  Then Saturday (10/30/04 - Day 9) he showed first signs of NEW, immature white blood cells called nuetrophils.  His ANC (Absolute Neutrophil Number) recorded at 44.  This was the first time they were above absolute "0" in weeks!.   This was great news, but, we had to wait until Sunday to confirm this was a trend.  Sunday's ANC was confirmed at 328 - YES!, finally, today's ANC is at 700 --- the trend up is confirmed!!  Thank you Dr. Trigg and all the nurses at 3A for being patient with anxious parents! We thank GOD that you exist and that we have options to heal Liam.  I thanked Dr. Trigg and gave our nurse, Mary a hug bear hug at the news. Andrea was in church Sunday and asked father Gary to announced the good news, When he made the announcement, she was just overcome with emotion and cried happy tears and was comforted by everyone.  

Reality Check & NEXT STEPS:  Obviously, this is fantastic news and we are elated.  Each day we expect to see Liam's condition slowly improve going forward, but, Dr. Trigg was quick to remind us that he will still be recovering and dealing with the dreaded mucositis for several more weeks. We really hit him very hard with Chemo this time and he will continue to feel the effects for quite awhile.  Also, it is confirmed that he has engrafted and his cells are on the path to building his NEW immune system, however, the ANC numbers that I shared above are somewhat "inflated". Inflated because we are giving Liam GCFS, the drug that promotes white blood cell (neutrophil) production.  So, his is still at high risk for infection and we need to keep him quarantined for several weeks.  Andrea and I feel "revitalized" to continue to carry him through this recovery.  This great news makes us feel "it was worth it" to give him this chemo, it would have been devastating to watch him suffer like this and not have been successful. Thank God we have been blessed once again!

RADIATION --  Unfortunately, we now will focus on healing Liam these next few weeks, only to knock him down again with Radiation treatments sometime in late November.  Radiation must be applied directly to the site of the core tumor in an effort to ensure that no micro-scopic tissues of the original tumor remain.  The harsh reality is that Neuroblastoma has a high incidence of recurrence, therefore, we must take every effort to ensure it is eradicated from the core site.  Andrea and I are have a lot more questions and are meeting with Radiation team (yet another set of Doctors to become acquainted with and educate about Liam....) this week.  However, we know that the plan will be for 13 radiation treatments on his abdomen, the site of the original core tumor.  Then, Liam will have to deal with all the side-effects of radiation treatments and will have to go through another recovery.

13-CIS-RETINOIC ACID ---- After the Radiation treatment and subsequent recovery from it, we will then put our sights on the Final step in this road to cure -- the 13-Cis-Retinioc Acid Treatment.  This is a 6 month treatment of a high dose of a derivative of Vitamin A.  13-Cis-Retinioc Acid has had some success in limiting the recurrence of Neuroblastoma cancer cells. This treatment is six (6) cycles of 28-day treatments of 13-Cis-Retinioc Acid in needle form ----  Liam will have 14 days of needles, then 14 days off, then 14 days of needles, then 14 days off, this lasts for six cycles. We believe we will have to come back to the hospital every day for those needles...

The important thing to recognize is that these last two hurdles in his path to cure (Radiation and 13-Cis-Retinioc Acid treatment) are consider to be "preventive" treatments, they are designed to prevent recurrence.  We are making the shift from "proactively" fighting his Neuroblastoma cancer cells, to now providing "preventive" measures -----  WE HAVE HIT A BIG MILESTONE IN THIS PATH TO CURE!!!

Please pray for 1.) Continued recovery of Liam from the Transplant Chemotherapy, 2.)  Some "pain-free" time between Chemo and radiation and 3.) Limited side effects of the Radiation and that it do no damage to surrounding healthy organs.

Thank you so very, very much for riding this path with us and being so supportive to Liam.  I believe he is a miracle in the happening, as someone out there wrote, and we are just along for the ride!

10.29.04, Friday, 4:00pm
Sorry to post that Liam's condition remains the same.  This is truly a trying time for Liam, Mommy, Daddy and Alli.  We knew this was in the plan, part of his path to cure so we will remain resilient, but its very hard to see him in such pain.  He has been miserable this past week and who can blame him.

It is frightening the number of medications that are treating his little body ---  it sometimes feels like he is one big petri dish.  Literally, Andrea has created a grid system on the inside of his hospital room door on which she lists all the different medications (by I.V., orally and topical on the skin).  She tracks the medicines constantly, challenging the nurses to explain "what this med is intended to do?", "will that one react negatively to the one we gave him 2 hrs. ago?", "what potential side effects can this one cause?", etc.....  He has had some bad reactions to some of the meds and that only adds to the confusion.  He spiked a fever of 102 degrees last night and we had to "backward engineer" to understand the cause, simply because it could have been the result of several of the medications.  So, when in doubt on the cause -- the decision is to hit him with yet another anti-biotic for fear its an infection attacking him and not the side-effect of a medication, and, oh by the way, that ant-biotic can cause diarrhea = We find that we are giving meds to treat the side effects of other meds, etc......  its maddening.  He is on 5 different nausea medications alone. Nausea is a constant battle because the inside of his mouth and throat are just raw and dead skin is constantly "fluffing off", falling down into his belly and causing the nausea and vomiting.  Additionally, Liam has received 5 transfusions (blood & platelet) this week.

The hospital had a Halloween event on Thursday, but Liam was not feeling well enough to participate.  We have a really great SuperMan costume for him to wear when he is feeling up to it.  The Truth is he doesn't need to put on a costume to be our SUPERMAN!  We will have Halloween in December if that's what it takes.  Sadly, we have to send Alli away, down to her Grandmom's and Grandpop's again because she has come down with a bad cold.  Andrea and I can not risk being exposed to any infections at all at this critical time. We already miss her...

Alas, we may be weary, but by no means are we beaten.  We are waiting for Liam's Stem Cells to engraph very soon and then the pendulium will swing back, Liam's sores will heal, and we will beat this Cancer - period.  Liam (Superman) is going to be flying out of this hospital by Christmas!

10.25.04, Monday, 4:00pm
Hi everyone - this is Liam's Mommy ....  our dear Liam is in pain right now. He has the dreaded mucositis, which was what we feared.  He has open sores on his lips, in his mouth, down his throat and in his rear-end, we fear that the sores go throughout his entire GI track inside his belly.  He is very nauseated and vomits frequently, which is very painful due to sores, its horrible.  He also has diarrhea, which is very painful.  He must sleep in the nude to try and promote healing on his rear-end, thus, we are changing the bed often, its the only way.

We have our fighting gloves on and we are constantly watching closely his medications.  Liam was taking medicines by mouth about 30 times per day right up until the Stem Cell Transplant, this was to ward off the side-effects of the Chemotherapy.  Now, because swallowing is so painful, most of those medicines are now given by I.V.,:

1.) Zofran -- helps nausea, taken every 8 to 12 hrs.
2.) Acyclovir --  this is what kept the mucositis away in the past, but the chemo was to strong this time, taken every 8hrs.
3.) Neupogen (GCFS) --  this promotes white blood cell growth, we had been giving this to him in needle form, taken over 2 hrs., once per day.
4.) TPN (Total parental Nutrition) -- Liam is no longer eating, this is his source of food / nutrition and multivitamins, taken round the clock.
5.) Calcium Gluconate --  additional boost of calcium given 2 hrs. before the TPN
6.) Flagyl (metronidazole) --  an antibiotic for the specific anarobic bacteria that causes the bad mouth, throat and gut sores.
7.) Gentamicin & Cephapine -- general antibiotics to avoid infections.
8.) Vencomyicine --  antibiotics for fever.
9.) Morphine -- for pain relief.  He is on a constant, 24 hr. flow and we have option of bolis'.
10.) Blood Transfusions - he's needed both red and platelet since the last chemo.

The remaining medicines given by mouth are to hopefully give him some relief of mouth sores and nausea.  These are necessary to help the healing process in his mouth and throat.  He takes 6 by mouth in the morning and 6 at night. It takes close to 3 hrs. in the morning and night to get him to take them all without vomiting them up.

1.) Prilosec (for acid)
2.) Glutamine (amino acid to cleanse mouth, swish and spit).
3.) Troche / Mycolex (anti-fungal, swish and spit)
4.) Peridix (promotes healing of sores, swish and spit)
5.) Gelcair (for pain relief, it coats the mouth, swish and swallow).

Finally, we have to give him a nasal spray treatment twice a day.  The most common path for fungal infection is through the sinus, so we have to hit him twice a day.  He really hates this because it burns his poor little nose.

Obviously, there's a war going on in his body right now..... his body is hurting from the chemotherapy, which of course was necessary to get rid of the bad cells...... and the new, clean stem cells are working so hard to grow and develop his new immune system to heal the damage that was done.  It will be another 5 to 10 days before we are certain that his New Stem cells have engrafted themselves.   Then, it may be another 4 to 6 weeks before those New Stem Cells begin to create a new immune system and heal Liam of this dreaded mucositis.

Kevin was asked by a friend on Sunday as to how should she focus her prayers?  1.) That Liam's new Stem cells engraft themselves successfully. 2.)  That Liam's pain can be removed and controlled and 3.) That he never remembers this horrible experience.

So, there you have it, the war of "hurt against the healing" and we all know that we WILL win this war!  The battle is going on right now and we need your wonderful prayers to continue, please!  We keep telling Liam the he WILL get better soon, and not to worry, it will be over soon.  Thanks.

10.21.04, Thursday, 4:32pm
Liam has completed a successful Stem Cell Transplant!  Congratulate Andrea and I on the birth of our 4yr. old, 35lb., 39.5 inch bouncing baby boy! At this moment, he is resting very peacefully.  He received 5 bags of his own, newly cleaned Stem Cells over a period of 1hr. & 40mins.  Thank you for all your prayers at 2pm, we truly felt them here in the hospital, the actual procedure started at 2:20pm and completed at 4pm.  We put Birthday hats on everyone (even Dr. Trigg!) and all sang "Happy Birthday" to Liam when the first bag started.

The Stem Cells were kept in a special preservative to keep them safe when frozen and transported. Thus, the stem cells are given to Liam with the preservative.  The only way the preservative can be removed naturally from Liam is via his lungs --- thus, as a known side-effect to this transplant is that Liam has really, really, really bad breath right now! It will last up to 24 hrs. P-U! :-). Trust me, we can deal with a little bad breath - We've got our Son Back!!!!!!!

Now we must wait and pray for his Stem Cells to re-create his blood systems, we must wait 9 to 14 days for noticable, new/immature white blood cells to appear in his blood tests.

10.20.04, Wednesday, 1:45pm
Hi everyone - Today may prove to be a "sleepy" day for Liam.  "Sleepy" because of the treatments he will receive today in preparation for tomorrow's big event.  He is scheduled for a Red Blood transfusion this morning (he is approaching his 40th transfusion), prior to transfusion he will be pre-medicated with a benedryll combo drug which will make him sleepy.  Then, he is scheduled for an anti-biotic treatment, specifically; a Fungal anti-biotic this afternoon.  Similarly, he will need to be pre-medicated prior to the anti-biotic, this second pre-medication also has sedation as a side effect so we expect him to do a lot of sleeping today - a good day for sleeping with the yucky weather.  Finally, he will probably get a blood platelet transfusion today as well - phew!   Nausea is still present and will be for quite awhile, but additional meds (Yes, even more meds...) seem to be keeping the nausea under control.  Our biggest concern right now is the inevitable mucositis; which we fear will arrive very soon ---  the inside of his mouth is getting very pale and starting to look raw last night and today.  The inner lining of his mouth and gastro-intestinal track is literally deteriorating as a delayed side-effect of this last round of chemo.    

PRAYERS FOR THE TRANSPLANT! - We are told that Liam's stem cells and blood systems will be "re-born" at approx. 2pm tomorrow afternoon.  Thank you in advance for Praying for a successful Stem Cell Transplant, praying that his body accepts his stem cells and he experiences no rejection issues, praying that his stem cells engraph themselves into his bone marrow and praying that his stem cells begin to re-create his blood systems and eventual immune system.  Thank you.

10.19.04, Tuesday, 4:30pm
Hi everyone - Liam completed the Chemo on Monday at 3pm as planned, Thank God that's over - good riddance.  He started to show the first signs of side-effects late Saturday night with some leg, foot and joint pain. Unfortunately, he has had steady nausea and some vomiting since Sunday - he has already lost 2 lbs, some of which was "water weight" that he was retaining as a result of some of the meds given to him for the nausea.  He has started on the TPN (Total Paternal Nutrition) which is being given to him through the night via his central line (his "tubies").  He is still maintaining an appetite and managed to keep down chicken nuggets last night - which is a win.  We need to focus on the wins.  He is still feeling energetic enough to get out of bed and walk the hallways - another win. Liam, Mommy and Daddy were playing with Astro-boy colorforms last night and had some laughs -- remember colorforms?  Also, Liam decided last night that he would "wait until he grows up to be a Daddy to grow his beard" like me, instead of growing a beard now, which was his first choice, :-).

10.16.04, Saturday, 11:00am
Hi everyone - as always, thank you for your continued love and support for Liam, you all continue to be a source of strength for us.  A lot has happened since the last time I was able to post an update.  Liam has begun the Chemotherapy treatment in preparation for the Stem Cell Transplant. Liam's Chemo started on Thursday (10/14) at 3pm and will continue for 4 days, 24hrs/day, ending on Monday (10/18), which happens to be Alli's true birthday.  This is a fearful time because this round of chemo is very potent - it is designed to wipe Liam clean of all his bone marrow and leave him virtually "unprotected" from fungal, viral and bacterial infections.  All the immunizations shot given to him as an infant will be wiped clean.  His blood systems will be gone and he will literally be "re-born".  Its just amazing what the medical field can do nowadays and we are so Thankful to God that we even have this option.  I have mentioned before that this procedure is actually called a "rescue".  In the Doctor's words, "we have to bring him close to death, in order to give him life", hard words for Mommy & Daddy to hear, hard words for me to type.  We are resolved to cure Liam - there is no other choice, period.

We are told that we will not be able to control the side-effects of the Chemo this time.  We have been able to keep the mucositis under control in chemo rounds 2 - 6, after learning about Liam as a patient in round 1.  We have been told to be prepared for the worse this go round, he will experience severe mucositis this time, they have not sugar-coated anything. At this point, Andrea and I just wanted to get started because we now the sooner it begins, the sooner it will be over with.  Please focus your prayers that 1.) that Liam's hearing is left unharmed 2.) that the Chemo leaves his healthy organs unharmed and 3.) that he remains pain-free through this process. 

Here is summary of the Transplant:

10/14 - 10/18 (Thurs. - Monday) -  Chemotherapy; Carboplatin (275mg) and Etoposide (225mg) will be given for 24hrs. each day for 4 days, Melthalan (70mg) will be given 1hr./day for 3 days.

10/19 - 10/21 (Tues - Thursday) - Rest.  Liam will have 3 days off the Chemo and we will "flush" him with fluids in order to remove all the residual Chemo out of his systems. The Chemo will have done its job and the side-effects will be "in effect".  The goal of these 3 days are to clean residual Chemo out of him in preparation for the Transplant.  We don't want any residual Chemo to damage his new, transplanted Stem Cells.

10/21 - (Thursday) - Stem Cell Transplant.  This is the day that Liam's systems will be re-born -  Andrea and I plan on celebrate 2 birthdays each year for Liam going forward.  This is the day that we ask for strong prayers.  Please prayer that Liam's transplanted Stem Cells stay healthy, are accepted and engraph themselves back, recreate his bone marrow and recreate his blood systems.   The Actual Transplant is very minor procedure. Believe or not, it is simply taking a syringe full of his Stem Cells and injecting them into his Central Line catheter in his chest (his tubies). All this drama, all this anxiety for us culminates in the simple procedure ---  this simple procedure that will save his live.  The real dangers are his risks to fungal, viral and bacteria infections and rejection.  His blood systems and immune system won't be "normal" again for 6 to 12 mths.

10/22 - 1/1/05 - Recovery.  Its our goal to get him home by Christmas or maybe New Years.  He will still need to be quarantined for quite a while, but, we are hoping he can join his friends at pre-school sometime in April / May before the school year ends.

Back to this moment, Liam is expending his "super hero powers" again doing battle as I type this post.  We were told to expect side-effects within hours after the start of Chemo this time, well, as of 11am today (approx. 44hrs.) I am proud to say that he has yet to see severe side-effects.  He is such a fighter!  His strength will take him through this...  the only visible effect so far is his personality, we've seen a change yesterday and he had 5 major "fits" throughout the day ----  who can blame him, he feels like hell so he lashes out in anger for a short while, then he's smiling again.   We are grateful that were able to "escape" once again down to the Avalon beach last Sunday - Tuesday.  We really tried to check out mentally in preparation for the next few months.  We had a great time, flying kites on the beach and actually napping on the beach (all 4 of us) listening to the ocean - it was awesome.  A stranger woke us up after an hour because we were surrounded by big, ugly seagulls.  I guess they were sizing us up for lunch since we hadn't moved for some time!

The Bone Marrow / Stem Cell transplant wing is going to be a very active place these next couple of months.  Liam is the 1st of 3 children who will be going through a Transplant.  TJ is Liam's big strong buddy, he's 10 years old.  Lizzie is an 8 yr. old girl with incredible spirit.  Lizzie has been battling cancer for 6 yrs. and her transplant must succeed, it is her last chance.  Her body will not withstand another procedure after this transplant so she must be successful, please, please pray for Lizzie and her Mommy, Chris.  Lizzie is an incredible spirit and this world will be a better place with her in it.

10.7.04, Thursday, 2:00pm
Hi everyone - Liam's week is going pretty much as planned.  He and Mommy and are having a very busy week, that's 3 weeks in a row of what seems to be endless "baseline" tests.  He was sedated for Monday's Bone Scan, sedated for Tuesday's Bone Marrow Biopsy, Yesterday (Weds.)  he required a platelet transfusion and was injected with the MIBG isotope (radioactive isotope), Today he is sedated and currently undergoing the actual MIBG Scan.  We thought that he and Andrea were going to get a break tomorrow, but now they must go back and do more blood work for Liam.    

Of course, we are focused on this next step in his path to a cure - the pending Transplant.  However, the big news in the Kane family is that our little angel Alli will turn 2 yrs. old on October 18th!  Its great because we have shifted our attention (including Liam's) to a small party for Alli this weekend, focusing on Fun things - its a great distraction for all of us.  Liam will be in the hospital on the 18th, so we are going to celebrate her turning 2 this weekend ahead of time.  Happy Birthday Alli!  You are truly and gift from God for Mommy and Daddy.  We Love You!

Monday, 10/4/04, 12:40pm
Hi Everyone - YES!  We did in fact get Liam home yesterday afternoon (Sunday) a little earlier than expected.  It appears the Oncology Doctors are giving us a little lee-way with Liam because we are now becoming "pros" at this game.  For example, Liam's ANC counts only just begun to rise yesterday to about 200 ANC.  In the past, we were never able to consider taking Liam home until his ANC was at least 1000.

Overall, Liam had a decent week in the hospital.  This visit was pretty much a "nuisance" visit --- meaning, once he hit the 102 temperature last Monday, we simply had to "wait it out" at the hospital until his ANC counts started to launch, which finally occurred yesterday.

No rest for the weary!  Mommy and Liam were immediately back in the hospital today (Monday) for Liam's planned Bone Scan.  He will be sedated today and placed under machine for several hours.  This test is a continuation of the battery of "baseline" tests we continue in preparation for the upcoming Stem Cell Transplant.  He will undergo a Bone Marrow Biopsy tomorrow, he will again be sedated for this exercise -- this is a "Big Ouchie" using big needles into his back to remove Bone marrow from his hip bones.  We do not have clarity on when the Transplant will take place as of yet, but we are probably about a week away.  Liam will need to have a minor surgery on his Central line catheter (his "Tubies") this week prior to transplant.  The tube within his chest has a "Cuff" that is sewn to his skin to help keep it in place......  the cuff has been slowly coming out of his skin and this represents a possible "doorway" for infections.  Thus, it needs to be repaired or replaced, especially before the high dose chemo for the transplant which will definitely compromise his immune system.

Liam has made a couple more friends - fellow patients of the BMT unit at Hotel DuPont.  TJ is a 10 yr. old boy who likes to wrestle with Liam, Lizzie is 8 yrs old - she has great spirit.  Unfortunately, both TJ and Lizzie are relapsed after being in remission for several years.  Danil, Liam's buddy from Russia has finally returned home with his Mommy and Daddy!

9.28.04, Wednesday, 3:00pm
We did have a wonderful weekend down the Avalon shore - we really did "check-out" for a short while and made some good memories - thanks again to the Hickey's for letting us use their home.  Unfortunately, it was back to reality on Monday.  As some of you are aware, we had to rush Liam back to the Hospital on Monday evening with a 102 degree temperature.  He did have another very hectic day Monday day -  Liam had CT-Scans of his chest, abdomen, head, then received a red-blood transfusion and a platelet-blood transfusion, the 36th and 37th blood transfusions, respectively.   It appears that he had another infection within his central-line catheter in his chest (his "tubies").  This is an immediate, minimum 5 day stay at hotel DuPont while they administer 2 powerful antibiotics to kill off the infection and protect him from illness. 

Liam is doing well today - his temperature is under control and now he simply needs to ride out the remaining days of antibiotic therapy.  We are praying that we can get him home again before we begin the lengthy Stem Cell Transplant process.  Once its begun, Liam will remain in hospital for a minimum of 2-3 months until his body recovers enough to go home.  Liam's immune system won't fully recover from this next round of Chemo for 6 -12 months. 

I just spoke with Mommy on the phone and heard Liam having some great "belly" laughs in the background - which makes my day!  He is up and feeling much better and playing games with Mommy and Walle, our nurse friend at 3A North, the Bone Marrow Transplant wing at the hospital, otherwise known as the "clean room".  We are blessed with some truly caring, just wonderful, wonderful nurses on 3A North and 3C North - it takes a really special person to be an children's oncology nurse and we are so glad they are all on our team.  Walle is a crack-up, she can always get Liam to smile!

Boredom is the challenge at the moment.  Due to the bad weather last night, Mommy stayed on for a second night in a row at the hospital, so she needs a break.  Daddy's got "fresh legs" and I'm looking forward to a boys night together with Liam tonight.

9.24.04, Friday, 7:00pm
Hi everyone - this has been an extremely busy week for Liam. Unfortunately, he and Mommy have not been able to enjoy much of this beautiful weather because they have been back to the hospital each day for "baseline" testing. Once again, Liam has begun the battery of baseline tests as we prepare for the next major step in his path to cure -- Stem Cell Transplant. The level of testing this time is much greater than in the past. Due to severity of next round of Chemo, we have to basically baseline all his systems.

This week Liam had blood work done for Infectious disease, had his eyes examined, had MUGA medical imaging, more labs, a nutritional assessment and finally tests on his heart functions (echo /EKG). Next week he gets CT-Scans of his head, chest, abdomen and sinus cavity, gets a hearing exam (again), blood labs every day, behavioral health assessment.

Weds. was a very difficult day for Mommy and Daddy. We meet with Dr. Trigg, the Transplant specialist, and we covered a lot of details regarding the entire Transplant exercise. We were always aware of this step in his path, of course, but had yet to get this granular and detailed. It was his job to level-set us again as to how risky this is, we heard the good, the bad and the ugly. We learned some frightening statistics and all possible outcomes - basically, a reality check again.

But that was Weds., today is Friday and now we view these stats as those that Liam will triumph over again. Liam will continue to change the record books - we refuse to have it any other way.

Enough of that - the real update is that we are escaping to Avalon on a brief family getaway. A friend from Daddy's work, Lynda, was kind enough to offer her shore house and we decided to take her offer! Liam and Alli are pumped. We hear there are 3 big playgrounds to choose from and of course, one enormous "sandbox" called the beach.

9.20.04, Monday, 2:00pm
Hi Everyone - the good news is that Liam is coming home from the hospital today! He successfully managed through the 6th round of Chemo and we are pumped to get him home after only 5 days in the hospital, his shortest stay yet! He will need to rest and we can already see some of the side-effects this round is having on his body - Liam's departure this morning was delayed because he needed a red-blood transfusion (his 36th since April 1st). Also, his ANC has already dropped to 600, so he'll need to wear a mask in public for next 7-10 days. Liam did have some different negative reactions to the Vincristine Chemo this time. Vincristine is a particularly nasty chemical -- it is designed to attack nerve endings, especially the longest nerve endings in our bodies 1.) from our spine, down our arms to our fingers tips and 2.) from our spine, down our legs to our feet and toes. Liam woke up in pain on Saturday night complaining of his Feet hurting. We rubbed his feet to give him relief and then realized that he had no feeling on the bottoms of his feet, which was scary. Sometimes children develop "drop-foot" from Vincristine in which they end-up dragging their feet and have to go to therapy to learn to walk again. THANK GOD that the pain subsided and he regained feelings in his feet again on Sunday. The doctor described the pain Liam felt similar to when someone falls asleep on their arm and wake up with no feelings in your fingers, except for "pins and needles".

We finally received some word back from pathology regarding Liam's removed tumors. Its a good / bad scenario that still needs some clarification -- we hope to get more clarity after the Tumor Board meets on Tuesday. The results show that the large majority of tumor is dead, however, results show possibility of some active tumor as well.... Doctor said that some tumor appears to be resistant to the Chemo and will have to be dealt with by radiation. This is disappointing as we hoped to avoid hitting Liam with radiation all together. The radiation will be administered after the entire Stem Cell Transplant exercise. Thus, Andrea and I will have some hard decisions regarding amounts / locations of radiation to be administered sometime in December, after the Transplant is complete.

For now, we always rejoice in the little wins ---- it is a WIN to get Liam out of hospital in 5 days and back home where he belongs! The weather is awesome and we will take advantage of it until we have to bring him back in a few weeks to start Stem Cell Transplant. Right now -- We play!
 

9.16.04, Thursday, 4:00pm
Hi everyone, Liam was admitted to the hospital today around 12noon in preparation for his 6th round of Chemotheraphy. He was the last oncology admittance today --- therefore, history tells us that he probably won't begin the actual treatment until 12midnight tonight. This treatment is identical to the Chemotherapy concoctions he received in rounds 1, 2 and 4; which is Vincristine (VCR) and Doxorubicin (DOXO) for 72 hrs. straight, with Cyclophosphamide (CPM) for 6 hrs., each of 3 days. We will need to have him go "pee-pee" every two hours around the clock to ensure the Chemo doesn't remain in his kidneys to long and cause damage.

Unfortunately, we STILL have not heard a pathology report on the 3 tumors removed from his belly! Whoever said "Patience is a virtue" didn't have a child with Cancer :-).

This 6th round of Chemo is the last step in his 1st Phase of Treatment. This 1st Phase of Treatment included; Rounds 1 & 2 of Chemo, then the Stem Cell Harvest procedure took place (removed Liam's Stem Cells for future Transplant surgery), then Rounds 3, 4 and 5 of Chemo, then the Surgery to remove the remains of his core tumor which took place on Friday of Labor day weekend, culminating with this final (6th) round of Chemo. As always, we must "keep the cancer on the ropes" and never falter until it is eliminated. Therefore, the 2nd major Phase of Liam's path to cure begins immediately after this 6th round of Chemo.

Phase 2 consists of 1 round of highly intensive Chemotherapy and then the Stem Cell Transplant. Another specialist, Dr. Trigg, will take the lead role for Liam's Phase 2, Dr. Trigg heads up the Bone Marrow and Stem Cell Transplants at A.I. DuPont. The overall procedure in Phase 2 is called a "Rescue". Its hard to listen to Dr. Trigg describe the procedure, he explains that "we have to bring Liam close to death, in order to bring him back to life, in other words, we have to Rescue him." The plan is to give Liam a highly intensive Chemotherapy which will virtually "wipe him clean" and remove all of his bone marrow and stem cells (blood systems). To put it in perspective, it takes Liam about 3 weeks to begin to recover (immune system returns) after each of Chemo rounds in Phase 1, Dr. Trigg explained that it will take Liam approx. 6 mths. to recover from the intensity of Chemo he will be given in this Phase 2. Immediately after wiping him clean, we will re-inject his own Stem Cells (transplant them) back into his body, then wait for his own natural blood system and immune systems to redevelop. We expect that Liam will need to stay in the hospital at least 2 mths. after this procedure until his immune system recovers enough to allow him to leave the "Germ Free" ward. Currently, Liam's Stem Cells are frozen and in storage at Children's Hospital of Los Angeles, CA. It's a little freaky for us to think that Liam's future currently sits frozen in a Lab in Los Angeles, CA. I am considering flying out to CA and retrieving the Stem Cells myself when it is time for them to be shipped, to ensure safe arrival -- but I think the doctors might fight me on that?

If everything goes within plan, this timing should get Liam back out of the hospital and home the last week in December. We are praying we can have him home for the Holidays. Christmas is a special holiday in our house and won't be the same if he's not home....... But, that's getting way ahead of ourselves. Liam has a lot of things to accomplish before we worry about the holidays, starting with today's 6th round.

On a much lighter note, Liam was in excellent spirits and in great shape arriving at the hospital today. He is still impressing the doctors with his speedy recovery from Surgery less than 2 weeks ago. He has become more and more comfortable showing off his "big boo-boo" on his stomach. Andrea and I don't want him to feel self-conscious about it, on the contrary, we want him to be proud of his boo-boo, like a "badge of courage" --- he likes to say he looks like a Pirate!

9.13.04, Monday
Liam is feeling fantastic! It has been 11 days since his surgery and every day he advances his strength more and more! Unfortunately we have not heard from Pathology yet about the tumors they removed. As of Friday the report was not listed in the nurses clinic. Our doctor is supposed to call us soon. The wait is so hard ...it's very frustrating!

Saturday, Liam got to go camping outside with his Daddy in his backyard. And next to his tent was another tent with his friends Ian and Daniel. They actually slept outside the whole night! Mommy thinks it's a miracle! They had a blast!

Today Liam got to go to school for just an hour! We were on our way to the hospital for regular labs and the nurse said he didn't need anything until his Thursday admission.......sooooooo......after calling a couple of his friends to see what they were doing and finding that they were in school....Liam thought he would join them. What a surprise he made to everyone when he walked into his class. There were a lot of familiar faces, he was so happy to be there with his friends! Thank you to St. David's School for being so flexible with us and welcoming Liam in!

9.8.04, Wednesday, 12noon
Guess what? Liam was released from the Hospital last evening! The Doctor's were so pleased with his quick recovery that they let us take Liam home even before the "Poopie Fairy" arrived. Liam promised the surgeon that he would continue to try and poopie at home, so, they let him out! As a update, the "Poopie Fairy" did visit Liam this morning at our home, so everyone is relieved, literally :-).

Everyone who visits Liam's website has said very kind things about Liam, thus, I try not to brag to much on my Son, however, I can not contain myself on this one --- Mommy and Daddy are extremely proud of how well he has recovered from major abdominal surgery. Liam is incredible, his "will" is so strong. We know that his "will to fight" is a huge contributor to his success so far in his path to cure and we couldn't be prouder. He decided on Monday that "I want to go home Daddy", we told him he needs to eat, drink, walk around the hallway and poopie before he could go home ----- and he set out to hit every goal.

As always, Thank you everyone for continuing to support Liam through this path. He gets to rest at home for the next 10 days, then we start to focus on his 6th round of chemo, which will complete the first Phase of his overall treatment Protocol. Phase 2 is the Stem Cell Transplant, which begins immediately after he recovers from round 6.

9.7.04, Tuesday, 3:00pm
Yesterday, Labor Day, Liam drew the three winners from the chances that were sold for his benefit.  There is a picture of Liam drawing the 1st prize in the Healing Gallery.  Kevin and Andrea would like to congratulate the winners and thank everyone for their generous support:

1st Prize ($1000): Lisa Bertone, Boothwyn, PA
2nd Prize ($500): Lorna Brown, Wilmington, DE
3rd Prize ($250): Elaine Vernon, Palm Desert, CA

9.6.04, Monday, 2:45am
Happy Labor Day. It's early Monday morning or late, late Sunday not, depends how you want to look at it. :-). Liam woke up at 12:00 midnight tonight with some pain/discomfort as he was due for his next dose of morphine, he fell fast asleep, I haven't been able to get back to dream land so I thought I would let everyone know how great Liam is doing after surgery!

The remainder of Friday, Friday night and into Saturday - Liam basically sleep as result of surgery, anesthesia and morphine. However, beginning Saturday afternoon he was ready to fight! The doctors were pleased that we were able to get him up to sitting position in his bed and get him out of bed sitting in a chair for 1/2 hr. He was exhausted afterwards and took a 3 hr. nap. Also, Saturday night we started him on clear liquids. Also, removed the Foley catheter and he began going "pee-pee" on his own again. Ouch - Daddy helped remove his Foley catheter. It must be a male thing, but it "hurt" me to watch.

Sunday - we had him up and out of bed, sitting on a chair (90 degrees) for over 5 hrs. He also toughed it out and walked across the room several times, again, doctors are real pleased that he is already walking - al biet "baby-steps".  He is amazing - he has not cried once since surgery, he just "winces" if in pain and tells us to "stop, stop!" when it hurts.  Also, he ate 2 sugar cookies, 2 munchins and 3/4 of a fish-stick throughout the day. So he's eating, drinking and walking 2 days after surgery. The next big step is the big BM - we need a big poopie and then we can work on getting him outta here over the next few days. We want to get him healed, then get him home for a good bit of time before we have to come back for round 6.

9.3.04, Friday, 3:42pm
It's time to Eat! In fact, its time to FEAST! Liam has done very well with the Surgery today! We are so blessed, We have so much to be thankful for..... Thank you God! Liam's Surgeon said the operation was a success. It took 4 1/2 hrs total. It took 2 hrs. for them to reach the tumor area, deep behind all this organs. The doctors said that it was obvious that Liam continues to respond to the Chemo very well, they noticed that his core tumor had continued to shrink even since last week's preparatory tests and Scans. They removed as much tumor as they could see and find - three separated resections of tumor were removed during surgery. We now have to wait for the results back from pathology on the three sections to determine if they are 100% dead/scar tissues. We won't hear any results until probably Weds. due to the holiday weekend.

Liam woke up in recovery around 1:15pm. He was in a lot of pain due to incision on skin and also incision down into his abdomen where tumor once was...... The incision looks to be about 6 -7 inches from his belly button to his hip. Again, we have so much to be thankful for..... Due to severity of operation, Andrea and I were told to expect him to be in Intensive Care Unit (ICU) afterwards. Well -- this little superman is well enough to avoid ICU and go to his own room tonight in the Bone Marrow Unit (Clean area). Also, we were told to expect that he would keep his trachea (sp?) tube in overnight to help him breathe, that too is out and he is doing just great on his own! He is currently resting peacefully. Pain mgmt. will be the focus for the next week as his incision heals. He is currently on morphine feed around the clock with option for Bolis (additional shots) when necessary. The trick will be to not let the pain get ahead of the medicine, they actually call it a "pain breakthrough", which are hard to overcome once they break.

Believe it or not, we have already discussed with the Doctors today that he will begin his 6th round of Chemo within 10 - 14 days. The idea is to keep the Cancer "on the ropes" as we work to eradicate it completely. However, right now Mommy and Daddy want to focus on healing him from surgery.

This is a Wonderful, Blessed Day - Thank You!