9.19.06, Tuesday, 11:45am

Hello everyone, This is Kevin posting.  I know it has been a long time, however, it's hard to find the emotional energy at times to draft a post.  We continue to take life "one day at a time" and continue to press on for our wonderful gift, Alli.  We see Liam in every moment of every day.  We talk to him, talk about him, pray to him... he remains a part of our lives.  Below is an email that I am blasting out, please consider supporting this worthy cause.  Thank you always!

Dear Friends & Family,

Andrea, Alli, (Angel) Liam and I are so grateful for the love & support we have been given throughout our entire journey with pediatric cancer. We have been blessed with an enormous community of supporters wishing to make a difference and "turn the tide" in this battle to save children's live. What fight can be more important than saving our children?

 Alarming Statistic: For every one hundred dollars ($100.00) donated to the American Cancer Society (ACS); only 7 cents ($.07) goes towards Children's cancer research.

NOTE: The ACS is an amazing and necessary volunteer organization. ACS has had a tremendous, powerful impact on cancer researches as a whole and we support the ACS. Unfortunately, most people don't understand the tremendous imbalance of research funds dedicated to adult cancers vs. childhood cancers. We only wish to promote a better balance of funding. Our children are our future. The best way to ensure your donations are going directly towards Childhood Cancer research (if this is your desire) is to ensure you choose specific foundations dedicated to raising funds and awareness specifically to childhood cancers; such as Alex's Lemonade Stand and The Liam James Kane Fund.Many people are moved by Liam’s story, and the stories of too many other innocent children and continue to ask; "How can I help?"

We are pleased to provide you with an excellent option to help (see below). Please consider participating. We thank you in advance for any support you can offer.

With Love and appreciation,

Andrea, Kevin, Alli and (Angel) Liam.

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The 2006 PARKWAY Run / Walk

This is an excellent opportunity to raise money for the Children's Oncology department at CHOP (Children's Hospital of Philadelphia). The amazing team at CHOP provided Liam with care upon his unfortunate relapse in April, 2005. They gently guided us through several new, experimental treatment therapies in a valiant attempt to help us save Liam. Because of their "world renowned status", CHOP is often the last resort for parents whom are desperate for options to save their child. They are truly "on the front lines" trying to find new therapies to not only extend, but save precious lives.

EVENT: 5K Run or 2K Family fun walk

DATE: Sunday, September 24th (YES, just 6 days from now, We will plan earlier next year! )

LOCATION: Four Seasons Hotel, One Logan Square 18th St. and Benjamin Franklin Parkway Philadelphia, PA 19103. The Run and Walk will take place along Benjamin Franklin Parkway.

TIME: 8:30am. Registration begins at 7am. You may pre-register on-line prior to the event (see below).

REGISTRATION: Please register as part of "Team Liam" when you register to participate. You may register the morning of the event (arrive early, registration begins at 7am) or pre-register online at www.parkwayrun.com . You will have a choice to select which team you are associated with, please choose "Team Liam". Thanks!

Unable to participate in the run/fun walk? No Problem. You can still make a donation at www.parkwayrun.com, please remember to assign your donation to "Team Liam"

SHOW YOUR LOVE FOR LIAM: To show our appreciation to anyone whom participates, Andrea and I wish to provide a free "Liam T-Shirt" to wear during the event. We have two (2) shirt options to offer: 1.) Liam's face on the front with the words "Smile for Liam" or 2.) Liam's drawing of a large dinosaur with the words "Pediatric Cancer should be extinct!" Keep them and wear anytime you feel like bringing attention to fight against Pediatric Cancer.

NOTE: You will also receive an event specific shirt, but the tradition is to wear the shirt of the particular child you wish to recognize that day. Thanks! If you plan on participating in the event and have registered, please email me directly at kkane@teksystems.com . I will email you back with a location where you can pick up the shirt(s) at the event, prior to the 8:30am start.

 

6.27.06, Tuesday, 1:42pm
We wanted to post a quick note and to say once again thank you to everyone for the tremendous support we continue to receive.  We do consider this extended support a blessing. 

We are becoming increasingly anxious as Liam's 6th Birthday approaches, this Thursday, 6/29/06.  We miss him so very terribly and his Birthday will only exasperate that pain, yet, we can't let this day go un-recognized as it's another opportunity to remember, love, talk-about, miss and memorialize our Little Big Man.  It is going to be a very hard day, we can feel it.  We haven't decided whether avoid this day all together and escape someplace like Baltimore for the day; or to face our grief head-on and do something or go someplace that Liam would have loved, like his favorite local amusement park, or eat his favorite meal at his favorite kid's restaurant.  We may take a "neutral" path and just go see the new Superman movie in honor of our little "superman".  How ironic is it that this new version of Superman is released on Liam's Birthday? 

Anyway, we will decide on Thursday what path is best.  We have learned the grief is very, very personal and as time goes on, acts like a fast moving roller coaster with great peaks and valleys.  We never make decisions to early in advance as we never know what our Heart will deliver us each particular day, more Sadness or some hope.  One thing that is certain is that Liam, like everyday, will be heavily on our minds and in our Hearts this Thursday, his 6th Birthday.  Thanks for letting me share. 

6.13.06, Tuesday, 8:30pm
Hello everyone. I have to correct everyone and request that we no longer receive "congratulations" on Andrea's pregnancy. I know the congrats are sincere and heartfelt, however, I'm very sad to update that Andrea has had a miscarriage. Needless to say, we are heartbroken over it.

Additionally, Liam's Pop-Pop Eastburn (my beloved Step Father) passed away early Tuesday morning at 2:55am after a 2+ weeks coma. Pop-Pop Eastburn had very successful bladder cancer surgery on Friday, May 26th and was doing well immediately afterwards. We all had a chance to see him after the surgery and he seemed to be doing very well (considering he just had his bladder & prostrate removed), he was on morphine for pain, but was doing well considering. Then on Saturday afternoon (5/27) he suddenly went into cardiac arrest. Nurses were in the room when it happened and immediately jumped into action and brought his heart back functioning. Sadly, his heart was stopped too long and his brain went without oxygen too long, causing him to go into a cardiac coma. My mother sat with him faithfully for these past 2 weeks with constant visits from all his children. We wanted to bring grandkids, but he was in ICU the entire time. Dave will be surely missed. He was loved by all who knew him and was never, ever accused of resting his jaws too long in a conversation :). We love you Pop-Pop. I have some peace in a vision - I see Pop-Pop being greeted in heaven by my Liam. I see Liam walking arm in arm with this Pop-Pop and his Pepere' (My Dad).

Viewing: Friday, 6/16/06 from 7pm - 9pm at Pagano funeral home (www.paganofuneralhome.com). This is the same place that we held Liam's viewing in November.

Funeral: Saturday, 6/17/06 9pm at St. Joseph's Church, Concord Road, Aston PA 19014. Burial immediately after mass at St. Peter's & Paul cemetery, Springfield, PA.

I don't know why our family is tasked to carry so many heavy burdens lately. We are tired and feeling battle weary. We do still have our faith and hope dies very, very hard. Keeping the faith and praying for calmer seas and less turbulent futures.

Kevin

2.20.06, Monday, 2:00pm
Hello Everyone Andrea, Alli, Liam and I want to send a sincere THANK YOU to all the students who participated in the Penn State Dance Marathon this past weekend.  I understand that this year was another great success raising over 4.2 million dollars for pediatric cancer research at the Hershey Medical Center.  Your efforts will definitely impact the lives of the many innocent cancer warriors and their families.  THANK YOU, not only to the dancers, but to everyone else working behind the scenes to make this marathon a huge success. 

We wish we could have joined you and supported you for all 48 hours, however, we knew that we just arent ready.  I know from experience how wonderful the marathon can be and how emotional the entire experience can be.  I also know that a lot of the little cancer warriors would be in attendance and participate the entire weekend.  We were concerned that seeing those beautiful children still in the midst of their fights would prove too painful for us right now, too many recent memories, so we stayed home.   However, We do have our sights on supporting everyone in 2007!  For the kids!

 

11.19.05, Sunday, 10:00pm

From: John Alessi.  As requested by Kevin and Andrea, I am posting the Liam's obituary below, which will also appear in local papers. 

 

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Kane, Liam James, age 5 of Boothwyn PA.  Passed at home with his family at his side on November 19, 2005 after a 19 month heroic battle with pediatric cancer.  Cherished Son of Kevin J. & Andrea J. Kane (nee) Keahey & beloved baby sister, Alberta "Alli", also survived by his Paternal Grandmother & Step Grandfather Margaret & David Eastburn (Mom-mom & Pop-pop) of Aston, PA, his Maternal Grandparents, James & Alberta Keahey Jr., (Grandpop & Grandmom) of Millsboro, DE, his Paternal Step Grandmother, Jeanne Kane (Memere) of Mullica Hill, NJ, his Uncle Billy & Aunt Maria Kane of Ason, PA, his Godfather/Uncle Dan & Aunt Dinae Kane of Fairfax, DE, his Uncle Brandon & Aunt Toby Kane of Ithaca, NY, his Aunt Colleen Kane & Mike Mash of Philadelphia, PA, his Uncle Tom & Aunt Rachel Kane of West Deptford, NJ, his Aunt Sand & Uncle Bob Johnson of Chadds Ford, PA, his Uncle Jimmy & Aunt Rose Keahey of Harrodsburgh, KY, his Godmother/Aunt Karen & Uncle John Grozak of Redlands, CA, his Aunt Diana & Uncle Robert Cagle of Danville, KY & also his 18 cousins.  Liam is predeceased in death by his late Paternal Grandfather, William Kane (Pepere).  Liam attended St. David's Episcopal Day School in Wilmington, DE, his most favorite things were the Power Rangers, Dinosaurs, coloring, pretzels, playing baseball and playing with his friends & cousins.  Relatives & Friends may call Tuesday Evening, 4-8PM at the Pagano Funeral Home, 3711 Foulk Rd. Bethel Twp., PA.  A Celebration of His Life Mass will be held on Sunday, 2:00PM at St. David's Episcopal Church, 2320 Grubb Rd. Wilmington, DE, followed by Interment at St. David's Episcopal Church Memorial Garden.  Donations in Liam's memory may be made to Liam James Kane Fund, c/o Bank of America, Valley Forge Market Place, 670 Trooper Road, West Norriton, PA  19403, proceeds will be used to support Neuroblastoma Pediatric Cancer Research.

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Kevin and Andrea want to extend an invitation to the services to all children, at their parents discretion.  Pagano Funeral Home will have a special room for children during the viewing on Tuesday.  During the the first half of the service on Sunday at St. David's, the children will be invited to a special "Children's Chapel" hosted by Pat Van-Catledge who will help the children understand what has happened and what is going on.  For those of you unfamiliar with St. David's, Pat Van-Catledge is known and loved by the children as "Chaplain Pat".  She is absolutely remarkable at speaking to the children and I am sure this will be a very special, and unforgettable time for Liam's young friends and cousins.

 

11.19.05, Saturday, 5:30pm

From: John Alessi.  At approximately 1:10pm today our brave, beloved Liam earned his angel wings.  Surrounded by love, at home, he passed from the arms of his parents into the arms of his creator, where he now rests in peace.  As you can understand Kevin and Andrea need some private time and they will post a message as soon as they are able.

 

11.10.05, Thursday, 10pm

HOPE, FAITH, COURAGE, LIAM... It wasn't easy, but we managed to get the ABT 751 pills in Liam over the course of 8 nights, beginning last Weds. (11.2.05).  We believe that we are beginning to see positive results!  Praise God!  We are convinced that we see some improvement in his eyes.  They still look awful, to be sure, but seem to be less swollen and less "black".   His left eye was swollen completely shut when we began ABT last Weds.  Today, he can open it as wide as his right eye, the swelling is down significantly.  We are praying that this is the a direct result  of ABT attacking nueroblastoma cells within his head and eye sockets.  Please pray for miraculous results due to the ABT 751.  Now that we completed the 7 day cycle of pills, the short-term plan is to continue to pray for miraculous, dramatic results against Liam's nb disease.  ABT 751 is like chemo in that its effects still occur for weeks after it is given, so we must wait, watch and pray.  We must wait for 14 days before we can start another 7 day cycle of ABT.   We are continuing with the round the clock management of his meds.  Andrea and I are swapping nights of whom sleeps with him in his room and wakes him through the night to give meds. 

Liam and I were at A.I. Dupont on sunday for his blood cbc and blood transfusions (platelet and hemoglobin).  We met with Dr. Powell and I kept my mouth shut regarding Liam's eyes improving slightly.  He completed his assessment of Liam, then asked me "how are things going with the ABT?"... (meaning, how successful have you been getting the pills into Liam and keeping them in?)  He waited until I told him that we've been having some success......  then he said, "Well, I must say that I believe I see an improvement in his eyes".  At that statement, I stood up, walked quickly across the room and gave the Doctor and big bear hug!  I wanted to hear it from the doctor instead of me telling him first.  It is a win for us to hold onto right now.

 

 

CHRISTMAS in November...  It's True, Santa Claus made a special visit to our house on Monday night all the way from the North Pole.  He was awesome.  He spent over an hour with us reading stories, singing songs and listening to wish lists from the kids.  Liam and Alli were able to give thier lists directly to Santa instead of having to mail them.  Santa told Liam that he checked the "good" list before coming to visit and that Liam was #1 at the top of the list.  Liam repeated this news to Mommy on Tuesday night (our Christmas eve) as he was going to bed, he said "Santa told me I was on top of the list Mommy!".  Tuesday was Christmas Eve and Wednesday was our Christmas Morning.  Merry Christmas early everyone.  Weds.(Christmas Day) was great, Liam felt decent most of the day.  We started giving his morphine in smaller doses on an hourly basis during the day in hopes of avoiding the big peaks and valleys we get with the 1 dosage every 4 to 5 hrs plan.  Liam and Alli enjoyed spending the day playing with their new toys and hanging out with Mommy, Daddy, GrandMom & Grandpop, MomMom & PopPop.

 

It is great seeing a lot of Penn Staters sign on and share their support & prays for Liam, especially the THON Morale team members.  For those who don't know it, the Penn State Dance Marathon is the largest student run philanthropy in the world.  It takes place each yr. in Feb. on campus and raises money to support the 4 diamonds/ Children's Cancer research and the Hershey Pennsylvania Medical Center/ Children's Cancer center.   Students raise money by gathering sponsers and dancing (also standing, walking, basically staying awake and on your feet)  for 48 hrs. straight (Friday night to Sunday night).  I was proud to dance in the marathon in my Senior year (89') representing my business fraternity - Phi Gamma Nu.  That year the marathon broke the $1mil. mark in funds raised.  I remember many things about that marathon, like falling asleep while standing up somewhere around hour 36.... literally collapsing onto the slice of pizza I had just been handed.  Mostly I remember the shear joy of making it to the end and then sitting and listening to the parents get up on stage at the end of the marathon to say Thank You to all the students.  I remember being exhausted and delirious and watching these Parents cry on stage, Parents pouring their hearts out and thanking us for caring & supporting their kids.  I remember crying with them, everyone was crying, there wasn't a dry eye in the entire white bldg.  Who would have believed that I would become one of those parents of a child with pediatric cancer?  A special thank you to everyone involved in the PSU Dance Marathon, it touches lives.  

 

                                   

 

11.5.05, Saturday, 10am

Hi Everyone - thanks, as always for holding Liam close to your heart and prayer, we do feel the love and support.  We did get Liam home for a few hours on Monday night so that he could go trick or treating in our nieghborhood.  We negotiated with Dr. Powell and he agreed that to let us take him home for a quick escape, once we promised that we would bring him back to the hospital immediately afterwards.  The concern was that Liam was having low heartrate due to the morphine, the morphine of course is for pain.  Dr. Powell wanted to monitor Liam one more night on the pulse-oxygen monitor, we too wanted to be sure he was ok.   We are really glad that Liam had the chance to trick or treat in his PowerRanger, Shadow Ranger Commander custom (whew!).  If you know PowerRangers, the latest is "SPD" - Space Patrol Delta PowerRangers.  The commander is a talking Dog, a dobermin pincher that walks on 2 legs like a man.  Anyway, when he is called to action, he transforms into the ultimate Shadow Ranger.  I should probably be ashamed that I know that level of detail....:-).  Alli was our beautiful princess - Cinderella!  She was going to be Ariel, but she made a critical last minute decision changre to go with "Cinderella" instead.  She had a wonderful time running from house to house with her buddy "Treggy" as she calls him, actually Craig John, he was Buzz Lightyear.

 

FEAR...

I am sad to post that we received more bad news on Weds. when we met with the Team at CHOP.  The purpose of meeting was primarily to recieve the ABT 751, which we were very happy about, then we learned that Liam's nb disease had progressed ever further since our last visit.  Liam's last MRI (Monday, 10.31.05) confirms that he now has tumor on the brain and down the spinal column.  Since his relapse in April 2005, the primary challenge has been nb disease within his bone marrow, it was contained within the bone marrow.  Monday's scans show that it has now left the marrow and invaded his duma, the paper-thin piece of skin which seperates our brain from our skull.  This explains atleast some of the vomitting.  They feel he is getting nausea similar to how someone with a migraine headache does.  Disease is growing in his duma, putting pressure on his brain and skull.... our poor Little Liam, it hurts to type this.  He told Mommy yesterday morning that it feels like his head is going to crack, please God let us manage his pain effectively, no pain God, no pain, no fear, no pain for Liam.  They said the pain he will feel in his spine will be similar too or worse than Spinal meningitis because his bones are swelling from the inside.  The Doctors also felt a tumor in his abdomen, further explaining some of the belly pain that Andrea and I have been chasing as nausea alone. They don't even want to put Liam through the hassle of a belly CT Scan, saying that a tumor in the liver is a common thing at this late stage in nb disease.  We are in Hell on earth.  Andrea and I both felt bumps on the top of his head, more disease, but we haven't been able to talk about it together yet.  His eyes look horrible, they continue to swell and blacken.  This morning, his left eye is swollen shut, thank god this is his bad eye and not the good.  We fear that we are watching our Son fade away in front of our eye's, we are dieing inside.  A part of my soul, my being is slowly dieing inside with my Son.

HOSPICE... We have secured a service to help us best manage all his continuing pain meds.  We are happy with the team we met and pleased that they have roots in spirituality.  They are      available to help with most anything, but, like always, we preferred to manage his overall care. 

MEDICINES... Hospice is helping us manage the pain and nausea meds.  Its difficult because his necessary dose to control pain / nausea is gradually increasing so we have to constantly adjust.  We are on all meds around the clock now:  Morphine every 4 hrs., Reglan/Benadryl (nausea) every 6 hrs., Zantac & Zofran every 8 hrs....  We are very happy that we've been able to get his pain / nausea under control since last weekend.  In general, he is feeling "ok", has some energy, communicates with us, Alli and his GrandParents, wants to sit-up and color, wants to play with his legos, matchbox dinosaurs, etc....  We know when the morphine is wearing off when he dis-engages with us, wants to be alone on the couch and gets very quiet.  We are going to introduce mscontin, which is a 12hr., slow discharge of morphine (2 pills a day) to give him a baseline level of morphine.  We will use the liquid morphine on top of that for "breakthrough" pain.

 

Alli loves her big brother so very much...This is the sadness that niether Andrea and I can face or talk about together.  Please God do not take "Miam" away from his "baby sister Alli".  Alli pronouces Liam's name as "Miam" ( me-um).  She prays with us saying, "please God make Miam O-tay (O.K.), please make Miam all better".  Yesterday, she told me that she wants to marry Miam when she grows up, She will be a princess and Miam will be her prince. 

 

ABT 751...

Our Hope.  Hope, Faith, Liam Courage is the only thing keeping us going right now.  ABT 751 is the source of our Hope right now.  We need this ABT to be his miracle, We need a miraculous response to the ABT 751.  It is our last hope to save our Liam, our last hope to change this course.   We started the ABT on Weds. night, he must take 6 pills daily for 7 days, 2 wks off, then another 7 days of 6 pills.  Weds. night we were so very happy after we got the 6th pill in him, it took about 1 hr. total to get him to swallow all 6.  Then, 1 hr. afterwards he vomitted them all up, we were devasted, just sick to my stomach with anger, frustration and mostly fear.  We then adjusted nausea meds. and tried to time them so as to give him the best chance to keep down the ABT at night when we are giving it to him.  Thankfully, he kept down the pills on Thurs. and Friday night, 4 more nights to go... 

 

HOPE, FAITH, COURAGE, LIAM.... LOVE, FUN, LIVING...

With the Grace of God, we are keeping up our spirits and demanding of ourselves good, quality time and fun when Liam is feeling well.  Christmas time is always a very special holiday in our house.  Thus, Andrea wants us to have Christmas early, now, for this will be great fun for Liam and Alli.  I have a "honey do-list" job immediately after this post, which is to go upstairs in the attic and bring down all our Christmas decorations.  We are decorating our house, putting up our tree and listening to holiday CD's.  The kids always help us decorate the tree, another tradition.  I love it because the bottom 3 ft. of our tree is always full of bunch of unmatched, different types of decorations from the kids and we love it!  Daddy made some calls and rumor has it that a very special man with a White beard and Red suit is making a surprise visit to the Kane household on Sunday!  Depending on how Liam is feeling, it will be Christmas morning sometime this week (Mon., Tues, Weds.) at the Kane Household!  If you see us or speak to us, please be positive, please remain hopeful, faithful. 

 

Prayer:  Andrea and I proclaim our Lord Jesus Christ as our Savior, our healer, our maker.  We are on our knees, begging that our Lord have mercy on our Son.  Please Jesus, save our Son, have mercy on him, please do not take our Son home, not yet. 

 

 

 

10.31.05, Monday, 1pm

Hi Everyone - we have some amazing News!  Thank you God, Thank you Oncology team at CHOP, Thank you kind hearted people at the FDA, IRB and Abbott Labs.  Our prayers have been answered - Liam was approved for the experimental drug ABT 751 under a compassionate care scenario!  Andrea and I just learned this great news at 8am today, so we are still looking for details as to when he can begin taking ABT 751.  The first goal was to secure it as an option, thank God for answering our prayers.  ABT 751 is experimental and therefore its "unproven".  However, we know of other families of nb whose children have gained precious time, significant extension of life from use of ABT 751.  In one case, a child gained 19 mths. before her nb disease developed a resistance to ABT.  This disease is very evil and destructive.  There is no guarantee how much time Liam could earn, or that he could gain anytime for that matter.  The doctors are very clear about managing our expectations since it remains an "experimental drug".  However, we choose HOPE, FAITH, COURAGE, LIAM and we choose to believe that this is another miracle, another step in his ultimate path to cure.  NOW that we have secured ABT 751 as an option, we are now very anxious to get started with the drug asap!  We were told that we could get started by Wednesday.  Generally, ABT has had a "halting" effect on the disease in those children whom responded positively.  In other words, it doesn't kill existing nb disease, rather, it halts its progression and slows/stops new cells from growing until which time the nb disease develops a resistance.  Please pray that Liam's neuroblastoma has a dramatic, very long-lasting and miraculous response to the ABT 751.   Thank you.

 

Approval of ABT 751 could not have come at a better time.  This has been a fearful weekend.   Liam was omitted in the hospital on both Friday and Sunday nights this weekend.  Our trip to NY last Weds. and Thursday was awesome.  Unfortunately, Liam starting feeling bad late Weds. as we wrapped up his (and Alli's) dream shopping spree at Toys-r-us.  He began vomitting on Thursday morning and complained of pain across his forehead.  We never made it to the Central park zoo on Thursday as was the original plan.  We ended up staying in the hotel room and secured a late check-out until we could get Liam comfortable for the ride home.  His troubles started on Thursday and continued straight through the weekend.  I'm typing this post from A.I. Dupont at this moment on Monday afternoon as we haven't left the hospital as of yet.  We are hoping to get Liam home for trick or treating tonight.  He missed our nieghborhood halloween party on Saturday, he just wasn't feeling well enough to get out of bed.  The issues this weekend have been 1.) general pain due to tumor in bone marrow, 2.) Constant nausea and 3.) He complained that his good eye was "blurry" so we were nervous again about nb disease attacking his remaining good eye.  Andrea and I have been trying to find the right balance of medication to keep him comfortable and happy, that's all we want for him, so he can enjoy life.   For example; here is Friday's (10/28) summary:

8:15am = 6ml of Lortab (pain med.) & 2.5ml of Zantac (heartburn,nausea)

9:00am = He vomited it all up.

9:10am = He felt better after getting sick, so he still wanted to go to St. David's school and join in on the Halloween parade.  We made it just in time and he did enjoy himself for the parade, he was smiling and waving, etc...  His will is so strong.

10:00am = He started feeling yucky again so we did have to take him home early from school.

10:15am = 5ml of Lortab (more pain med.) & 3ml of Zofran (more nausea med.)

10:30am =  he fell asleep at 10:30 and slept until 1pm.

1:10pm = 4.5 ml Zofran (complaining of consistant nausea) & 2.5 ml Zantac (he told us his belly was "burning", so we thought heartburn).

1:15pm = He vomitted it all up.

2:28pm = Tried once again to give nausea and heartburn relief with 4.2 ml of Zofran & 2.4ml of Zantac.

3:30pm = 5ml of Lortab for Bone pain

5:30pm =  He was doing pretty good for 2 hrs., then all of a sudden he vomitted again, violently.

6:00pm = We switched to 5ml of Atarax, a different nausea med to try and get it under control.

6:30pm =  We were trying to get him off the couch and active so we started building bionicles on the livingroom floor.  He couldn't seem to keep his head up, was very tired and all of sudden he looked very pale.  We thought maybe it was from the many meds.  We decided to bring him into the hospital and we were very glad that we did. 

8:00pm = Liam's cbc (complete blood count) showed that his platelets had dropped to 3K and his hemoglobin (red blood count) had dropped to 6.1K.  He was enemic and had virtually no energy.  A healthy child would have platelets count of 150K - 300K and hemoglobin counts of 11K to 15K.  Thus, we stayed overnight on Friday and gave him a platelet and red blood cell transfusion.

2am Friday night = 7ml of Lortab to hopefully stay ahead of the pain.  Zofran was also given by I.V.

9:10am Saturday morning = 7ml of Lortab

9:30am = Liam vomitted again.

9:45am = Zofran by I.V.  An advantage of being in the hospital is that we can arrange for some of his oral medications to be given by I.V.  Its very hard to get meds (and any food) in him when he is feeling constant nausea.

10:15am = Adarax by I.V., still chasing down the nausea.  Finally, he ate something, first time in 24 hrs, he had a handful of cheerios.

10:40am = prescription gel lubricant for his eyes.  Unfortunately, his eyes continue to blacken.  He really looks bad, as if he lost a 15 round boxing match.  His left eye is starting to swell shut and We can't do anything to stop it either.  Its the nb disease within the bone marrow of his eye sockets.  We are praying that the ABT 751 does reverse this...

12noon = We switched to .25ml of morphine to address tumor pain.  The difference with the Lortab is that it requires 7ml of Lortab (a full syringe full of liquid) versus .25ml (a quarter of 1 ml) of morphine to achieve the same level of pain relief.  With his constant nausea, we opted with the morphine because its a much smaller dosage to try and get in him.

1:25pm = more Zofran and Zantac by I.V.

etc, etc, etc.......  We finally got him home at around 4pm on Saturday with the hopes of joining the nieghborhood party, but he never felt well enough.

 

We did make it to church on Sunday as a family and had a nice group of friends particpate in a healing prayer for Liam after mass.  We went to Liam's buddies house (the lindenhoffens) for a get together, but Liam started having the same symptoms he had on Friday night of being very, very tired.  Long story short, we ended up back at A.I Dupont on Sunday afternoon and we are still here now, hoping to get our little big man home for some Trick or Treating!

 

FUN....

Back to the fun we have been trying to have as often as humanly possible.  Liam has been feeling well and really enjoying life prior to the decline that began on Thursday in NY.  The "Lion King" show was awesome.  Both Liam and Alli made it through the entire show (almost 3 hrs. with intermission).   Alli sat on Daddy's lap the whole show and sang the songs she knew.  Liam cuddled with Mommy the whole show.  I snuck out at intermission and jumped into the McDonalds next to the New Amsterdam theatre.  SSSHHHHHHH....  I smuggled in a 10 piece chicken McNuggets box for the kids to eat during the second half of the show.  :-).  We had great seats close to the stage and right at the aisle, which was great because characters run up and down the aisle during the entire show.  After the show, we did get a backstage tour as well!  That too was very cool.  We were amazed that all the puppets and elaborate customs are all put on hooks and elevate in the air above the stage.  We met the actors who played "rafikke", the crazy, witch doctor baboon and "Simba", the adult simba that learns the meaning of Hakuna Matada.  Liam is amazing, come to think of it, his sickness began on Weds. during the tour.  He had to step off to the side and get sick in a trash bag with me, then he wanted to get right back on the tour, like nothing happened.  Finally, Liam, Alli, Mommy and I got to stand on a real broadway stage looking out into the audience seats - very cool.  We left the theatre and took a cab directly to Toys-r-Us in Times Sq.  Daddy's friend, Mike Greenstreet, helped coordinate a dream shopping spree for Liam and Alli.  Mike and a bunch of other very generous people from QaAssociates and TEK gave the kids Toys-r-us Gift cards and gave us permission to attack the store.  Liam and Alli had a blast!  We did too.  It was actually difficult for them to choose because there was so much "eye candy" everywhere for them.   We were greeted by a PR representative from Toys-r-us who set us up royally with free pics., etc...  We even had a family picture displayed on their Times Sq. Marquee out in front of the store - very Cool! Thanks everyone who helped set up this great trip.  The timing was great as it was a positive distraction for us while waiting for the decision on the ABT 751.

 

Prior to the NY trip, we have been continuing with the playdates with Friends, more trips to Khaunaville, mChuck-e-cheese and Oasis (indoor playground).  We also had the Grozak cousins join us on the weekend of the 17th, when we celebrated our beautiful little princesses 3 year old birthday!  Alli dressed up as Ariel - the little mermaid.  Andrea dressed up as Areil's mermaid mommy.  I dressed up as King Triton, Arial'ss mean daddy whom won't let Areil fall in love with "humans".  Finally, Liam dressed up in his shadow ranger, power ranger outfit.  Its very important to us to have made this a special day for Alli.  We are always concerned about the impact Liam's issues have on her too, primarily in the attention she gets from us.  She too is aware that "something is wrong".  She too will say a small prayer for grace and its beautiful to hear here say "pls. make Liam all better God.".

 

 

10.26.05., Weds., 8:50am

Hello everyone.  I want to give a very brief post as we are packing to leave for New York this morning.  We are continuing as planned with the steady flow of "FUN", as much and as often as possible.  Close friends of Daddy's from work put together an awesome New York city trip in which we are going to see "the Lion King" on broadway today, visit Times Square toshop at the massive Toys-r-Us store again (a giant, robotic T-Rex stands in the middle of the store!), stay overnight and visit the central park Zoo on Thursday.  We have had fun planning and anticipating this small get away.  It has been a nice distraction to the constant stress.

 

I'll plan to post again this weekend and share all the "Fun".   However, I wanted to request your focused prayers at this time.  A long story short, Andrea and I convinced the wonderful team at CHOP to apply for "Compassionate patient care" for Liam regarding the experimental drug, ABT 751.  ABT 751 is the drug that we were pursuing eligibility for prior to Liam's devastating setback (horrible scans) on 10/6.  As a result of his setback, Liam is currently not eligible for ABT 751.  However, the wonderful team at CHOP agreed to pursue "compassionate care use" for Liam.  Bottom-line:  We need 3 seperate parties to agree to allow Liam's use of this experimental drug.  The FDA, CHOP's internal review board (IRB) and the producing Drug company.  Literally, they hold our Son's future in their hands.  We believe that ABT 751 may buy us some precious time with Liam.  It is not a cure, currently, there still is no cure, however, we know of special friends - other NB families whose children have gained 17 mths, 19 mths and a 3rd child who is at 8 mths. and counting.  Please pray that this drug is our miracle to secure more time.  Please pray that individuals within the FDA, IRB and Drug company are touched by GOD, touched by our plea and that they approved Liam's use of ABT 751!

 

Please, no one with good intentions get creative and reach out to the FDA, IRB or Drug Company.  Believe me, Andrea and I have never been shy when needing to be advocates for Liam.  We know the name of the Drug company, thier location of headquarters, all the board members, etc... and won't hesitate to do whatever we need.  However, as the team at CHOP has explained, there is a "formal process" to get a compassionate plea approved and its best now to let the process exhaust itself first.  It requires yet more patience and pray on our part.  Thank God for the New York trip as a distraction.

 

ABT 751, like all the experimental therapies we have tried along this journey, is no guarantee - but it is our focal point today, it is the source of more HOPE, FAITH, COURAGE, LIAM.

 

 

 

10.14.05., Friday, 2pm  -  Thank You everyone for the love, support and prayers that you offer for our little big man.  The concern for Liam is truely amazing and we are so very grateful that so many people care about our Son's well being.  Andrea and I realize now that we will never be able to thank everyone the way we would wish, in person, but  please know that every prayer is greatly appreciated.  So many voices are storming heaven for Liam's sake, so many are wishing for his miracle, God must be hearing our plea...  Nothing would make us happier than to deliver to you news that Liam has been saved, nothing.

 

FUN, LOVE, LIVING...

We have been very busy with the business of having FUN since we resolved on Friday to try not to linger in fear and to cherish every moment with Liam. 

- Chuck-e-Cheese.  Believe it or not, until now; Andrea and I have successfully avoided stepping foot in the "house of mayhem", otherwise known as Chuck-e-Cheese.  Liam asked to go recently so we made it happen on Saturday night, at dinner time, clearly the busiest time possible, must have been 200 kids.  But the truth is Liam was Pumped, so we all did have a great time.

- We had a family party at MomMom and PopPop's house with all his cousins on Daddy's side.... which was great fun.  We played wiffle ball on MomMom's front yard and pretend tackle football with Uncle Danny.  Liam was hitting the wiffle ball great and was proud to show his cousins Kylie and Sydney how to hit the ball far...

- "Dinosaur Museum", otherwise know as the Academy of Natural Sciences.  Liam loves to check out the dinosaur bones, dig for bones in the digging section and the live animal show in the auditorium.  We met a real live paleontologist who let Liam hold a pile of dinosaur "poopie" that was 75 million yrs. old.  WOW - dinosaurs and "poopie", two of Liam's favorite topics in one sitting :-).  Liam asked for his buddy Tommy to join us.  He is at the age when friends are really important and he is blessed with a lots of friends.

 - Kahuaniville, which is a cool, Hawaiian theme restaurant for kids with a huge arcade attached to it.  Liam loves to play the Jurassiac Park game with Daddy.  He is actually very good at the game. shooting dinosaurs and saving people for dinosaur attacks.  It's the only shooting game in the arcade the Mommy will let him play.  Liam also loves the race car games and the Alien bowling game.  He likes to collect the most tickets and then cash them in for toys..... great fun for him.  Uncle John from CA join us since he was in town.

- We had a neighborhood playdate with all his closest buddies in the neighborhood.  They ate pizza, played Star Wars figures, wrestled in the make-shift fort and watched Lilo & Stitch for the umpteenth time. Again, his friends, schoolmates and cousins are very important to him and he loves getting together to play.

- Right now we are down Rehobeth Beach at his GrandMom and GrandPop's house to see his grandparents and his cousins from Kentucky.  We decided to come down early to surprise everyone here and we are glad we did.  Its also good for Andrea and I to get out of the house.  Last night, Liam sleep in the pull-out bed with his cousins Alvin and Ambert, so the three boys (5, 6 and 9 yrs. old ) had lots of giggles, snorts, burps and gas to share all night, great times.  Today we had to get creative because the weather has not cooperated at all this week, its been raining for 4 days straight.  Anyway, we arranged for a bowling alley to set-up alley bumpers and ramps for the kids.  We went bowling on this very rainy day.  The six kids had a great time.  Liam couldn't hold the ball with his fingers (to heavy), but did a great job of winding up and throwing the ball down the lane.  He actually nailed two spares - honest!  Tonight we celebrated Alvin's 9th birthday and we filled the house with blow up balloons.  The kids are now all bathed and having a big "pj's" party, snuggling on the couch and watching a movie together, eating popcorn, etc...  I’m typing this post from the livingroom with all the kids just a couple of feet away, so I feel like I'm still participating...

 

This weekend we will be celebrating Alli's 3rd birthday party, we decided to push it up early.  The Grozak's are coming in from the West Coast to surprise Alli - a great present as Liam and Alli get to see more cousins (J.T., Brianna and Garrett),  We plan on visiting more pumpkin patches, seeing more buddies at pumpkin carving party and building Liam's bunk beds so he can have a sleep over with his cousin J.T.

 

HOPE, FAITH, COURAGE, LIAM....

We believe in miracles.  We are praying for another miracle for Liam.  Last Thursday was a terrible day for us.  The MIBG scans showed rapid tumor growth throughout his entire skeletal system, horrifying.  Late Thursday night Liam started complaining of pain behind his right eye (his good eye).  Friday he complained of more eye pain and pain across his forehead.  We panicked.  We were very happy that the team at CHOP responded with the same urgency that we felt.  We don't want to risk him losing sight in his right eye.  Thus, we ran him to the ER at CHOP on Friday night and the oncology team arranged for emergency radiation treatment of his eye to save sight.  We did a CT Scan of his eye so the oncological radiation team could pinpoint where to radiate, identify the tumor to be radiated.  To everyone's surprise, the CT Scan showed no tumor in his head.  No Tumor, yet the day before, less than 24 hrs. the MIBG scan showed tumor throughout his skull and face.  The radiation team said "we have no tumor to radiate" and sent us home.  This was great news, but confusing.  We still needed to pursue the concern with the eye so they arranged for Liam to have an MRI of his head on Sat. morning.  The MRI showed no tumor in his head, just like the CT Scan.  It did show some bone swelling in the central sinus cavity, but no evidence of rapid tumor like the MIBG scan on Thursday.  The oncology team said that they are "baffled" that the CT Scan and MRI scan show no tumor.  Andrea and I told them that Miracles don’t need any explanation!  Please continue to Pray for a miracle!  The oncology team's final word is that they believe that neuroblastoma cells are throughout his skull bone and eye socket, however, that they have not "clumped" together enough to form masses and show up on a CT Scan or MRI.  They remain "very surprised" and "baffled" that this is the case right now.  We choose to believe that this could be the beginning of the miracle we need!  We choose to believe that the VP-16 is halting the pace of his disease - FAITH, HOPE, COURAGE, LIAM!

 

FEAR....  at the same time that Liam is baffling the Doctor's this weekend, his eyes continue to blacken like he was in a big fist fight.  This if frightening.  This supports the oncologist's theory that the neuroblastoma cells still exist within his eye socket, yet aren't "clumping" together.  The tumor cells cause the bone sockets to swell.  The swelling is then popping blood vessels and causing bruising from the inside out.  It is impossible to not see that his eyes are swelling, blackening.  He noticed them himself last night in the mirror and asked us why his eyes look that way..... very difficult to answer this sweet, innocent child. We will not lie to him, but we will not let him fear, that is for Andrea and I to carry.  We know that we must prepare ourselves to answer any questions he might have, which is so very hard.

 

Our house is under tremendous stress right now, that is probably obvious.  Andrea and I have been snapping at each other a bit, generally over priorities of things we want to do with Liam.  Then we hid in the next room, apologize and cry together because we know why we are snapping.  We are both trying to balance; 1.) grieving over the news we received on Thursday and 2.) Making sure we Love, live and cherish every moment with Liam and Alli.  It is not easy.  I find myself dropping off Liam at school, spending time in his classroom and just watching him be a little boy, smiling and laughing and getting in trouble for goofying off with his buddy Tommy.  Then I leave his classroom and walk to the other end of the building to meet with Father Gary.  I have impossibly difficult conversations with Father Gary, discussing dreadful topics that no Daddy should ever have to plan for a Son.  Then I return back to pick up my Son who is full of life, runs to hug me and I squeeze him so hard. Its confusing, its hard and I hate this nightmare that we find ourselves in right now.  It's the most comforting to be in this mode of "happy moments, making memories and believing in our miracle to come."  I stay here as long and as often as possible.

 

 

10.7.05, Friday, 1:30pm

Please everyone - Please continue to pray for Liam.  We need a miracle.  We are praying for divine intervention.  Liam's survival is now in God's hands, pray that he has mercy on Liam. 

 

We received horrifying news yesterday.  Liam's disease has come back at a pace that we fear we will not be able to stop.  The Doctor's said that Liam's disease is now one of, if not the most aggresive form they have ever seen.  4 wks ago, he was relatively clean with some residual tumor in his bone marrow around his left Knee and in his arm.  Yesterday, the scans showed nearly his entire skeletal system full of bone marrow tumor.  His spine is full, his legs, hips, ankles, feet, arms, shoulders, chest, skull and face.  We are worried about him losing sight in his right eye, which would not be good for quality of life, we discussed doing localized radatiaion around his eye to try and protect his sight.  The Doctor's feel he will feel pain in his left knee first as this seems to be the highest concentration of the disease, so we talked about localized radiation to his knee to knock down tumor and give pain relief.  Thank God that he is not currently feeling any pain.  This is maddening, He looks fantastic on the outside, but this evil disease grows within him.  Our son is dieing and we can't seem to do anything about, we have never felt so very helpless as we do right now throughout this whole experience. 

 

They gave us the option of hospice, we declined, instead we are going to try and extend his life, cherish every moment.  We choose to hold onto Hope, Faith, Courage, Liam until he can no longer fight.  The choice of new drug (VP-16 / etoposide) we made will have minimal side effects, yet may be able to slow down the disease and extend his life.  We are praying for a miracle, we are praying the VP-16 extends his life for 2 months, then allow us to consider other, life extension options.  We declined on extreme measures because they have the same potential of success as the VP-16 (maybe less), yet would put Liam in the hosptial, on IV's, possible infections, mucositis, etc......  that we could not bare to see.  We are praying that God show mercy on our beautiful child.  Jesus loves the children, but we don't want him to take our Liam home, not yet, not now.

 

The Doctor's won't give us timeframes.  They continue to be brutally honest with us, which is what we need, but these are the hardest things for us to ever hear.   They said if the VP-16 does not slow down the pace that it could be weeks, not months. 

 

LIAM's happiness, quality of life comes first...  Andrea and I have managed to find strength to push through these past 18 mths. to ensure that Liam (and Alli) was loved, remained confident, remained hopeful, optomistic, happy.   There is no way that we intend to change on him now, especially now, he must not ever know any fear - that's for us to carry.  We want him to laugh, smile, feel loved and live.  If you see us around, know that we will be dieing slowly inside, but enjoying our precious Liam, making more happy memories on the outside.  Please do the same.  Don't treat him or us differently because we are not going to waste away this time sad, we'll have the rest of our lives for that.  He loves his school and we hope to keep him going for as long as possible.  We are still praying for another Miracle, we are still holding on to some hope, this is the only way we can possibly survive.  The Doctors on Thursday have forced us to face our reality and we hope we do it well for Liam's sake.  Thank God we still have Liam with us now and that we have Alli.

Again, please pray that the VP-16 / etoposide has a tremendously positive effect on his disease. 

 

 

 

10.4.05, Tuesday, 10am

Hi everyone. Thank you for continuing to pray & support our Little Big Man.  Your support is so very important to us and to Liam.  Be patient with me regarding the updates.  It is true that we do remain very busy;  However, I now realize that I've been guilty of procrastination.  Bottom line:  We did not receive good news on Sept. 15th regarding Liam's eye and frankly, I've taken this pretty hard.  It has been hard for me to sit down a right a post about his permanent loss of vision in his left eye.  It has been easier to avoid talking about it and dive into all the other competing priorities.  However, we must move on and stay focused on the goal.  If we must lose one of his eyes in order to save his life, so be it.  Sometimes I want to believe that this evil disease has a conscious, that it might actually give this innocent child, this angel, our Angel "some breathing room", but that's just not reality.  I hate this disease more than I could hate anything.  It has taken away my little boy's innocence; it has taken away our family's innocence. 

 

LEFT EYE - The specialist at CHOP confirmed that Liam's left eye is permanently damaged.  He feels the culprit was the disease as opposed to any of the chemotherapy Liam has received.  The optic nerve travels straight to the brain from the back of our eye, through a small hole in our skull.  He believes that previous disease in Liam's skull (previous MIBG scans confirmed this) caused his skull bone around the optic nerve to swell.  Basically, he believes that the skull bone swelled and pinched the optic nerve causing permanent damage - end of story.   The optic nerve is the link to the brain, thus, his eye can no longer communicate or send images to the brain.  The eye is still "alive" and it will grow with him normally, feel pain, cry tears, and stay beautifully blue.  Liam, as always, remains and incredible source of strength for us to build on.  He has not complained once about his left eye and has adjusted immediately.  Honestly, It doesn't seem to have effected him.  The Doctor explained that it is much easier for a 5 yr. old (as opposed to an adult) to compensate for life with one eye at his age.  Once again, my son is teaching me lessons in strength and perseverance.  He has been the strong one.....It is Daddy who has to "get over it and move on".  Liam is miles ahead of me, again :-). 

 

Andrea, Like Liam remains a pillar of strength - She is amazing, the unsung hero.  Andrea's days are blindingly busy.  I'd put her up against any 4 star general on her skills at planning and managing multiple tasks.  Alli has her role in this family battle as well - a very, very important role, she doesn't know it but she is the glue keeping us all together.  She has unending energy and laughter that we feed on.  ME?  I try to do my part and remain gainfully employed.  I am blessed with an amazingly strong and supportive team at QaAssociates.  They allow me to balance my time between work and family with patience and compassion.   I definately worry about the balance because its important to me to be able to "carry my own weight" and remain a valuable participant to the team.  It is often hard to retain my focus at work when I'm pushing through some fearful Liam situation.  Its a constant issue for me. 

 

I think I've been a bit "off my emotional game" ever since our make-a-wish trip to Walt Disney World.  Do not misunderstand me - It was an amazing and memorable trip, we will cherish it forever.  It was awesome to get away and forget about our reality for nearly 2 wks.  But a strange dynamic that I'm just starting to come to grips with is that there is danger in "letting down your guard".  We have been operating in crisis mode for so long (dx on April 1st, 2004) and I'm proud of how this family has survived, actually grown during this extremely challenging time in our lives.  It was great to be in Florida and pretend that we are not living in constant fear for Liam's survival.  I have been struggling a bit since our return to "get back into the program" if you know what I mean.  I had a taste of the good life and I recognize all too well again that our reality "sucks" most times.  I guess I'd prefer to be back on the "it's a small world" ride, listening to that song over and over and over again :-).  However, this can't be so.  I know this.  I suppose I'm feeling sorry for us again, I've gotten really angry with our situation again, sad that we can't take a common thing like going to school for granted.  I know better than to linger in "feeling sorry for ourselves land", there is no gain in that.    We will continue to focus on the wins, keep our focus on the path to his long-term survival.  We use a funny expression in my family that was coined by my brother-in-law in CA, a "Waaahhhhhhhh moment", like a baby crying.  I guess I just caught myself in a "waaahhhhhhh moment".  I'm no value to Liam, Andrea and Alli if I linger in "waaaaaaaaahhhhhhhh moments."  Anyway, Brain-dumping with you on this site helps, thanks.

 

SCHOOL - Liam has been able to continue going to pre-K at St. David's.  It is obvious to Andrea and me that he loves school.  It makes him happy to feel "normal" in that he gets to go to school just like all his buddies.  His Teachers, Mrs. Kennedy and Mrs. Marchioni are wonderful, in fact, the whole school has been great with him.  We have to thank the director, Mrs. Leishman for everything.  Everyone is sensitive to Liam's condition, yet treat him like a normal boy.  That's all we want, for him to just be a little 5 yr. old boy. 

 

"Show and Share" – last week, Liam had to choose a toy to take to school for his turn at "Show and Share".  It was BIG decision for him as he was only allowed to take one toy.  He finally settled in on his "cool tiger toy" because it has a small button on the top that makes the tiger’s claw move…. "Yeah, that’s cool" he said.  Of course, the next morning as he was walking out the door for school he made a last second change and opted for the "cool crocodile" instead.  We could tell that he was pleased with his final decision.  I was Happy -Happy that Liam "owned" the decision of choosing the crocodile over the tiger.  This poor kid is constantly having to do things he doesn't want to (take this medicine,, take this needle, let the doctor examine you, you can’t eat breakfast or lunch today because you must take a Scan that could only be scheduled at 1pm - uuugh.).  There is power and growth for him in a simple decision of a crocodile over a tiger, and I was happy for him.   Liam's class gets to go on their first field trip this Weds.  They are going to a pumpkin patch / park for the day.  He's very excited.

 

MORE FUN...

Liam has been feeling great these past few weeks since my last post.  We have been maximizing on this time by playing with his friends, playing with his cousins, we've been back to Dutch Wonderland with Mom-mom and Pop-pop and we visited Grandmom and Grandpop down at Rehobeth Beach too. 

 

-We visited some friends at the St. Padre Pio festival in Vineland, NJ.  We met Deacon Jim, Tina and Sharon for the first time at last year's festival and they really left an impression on us.  We are grateful for their extended support and prayers.  I have been touched by St Padre Pio and focusing my prayers to St. Padre Pio since our meeting last year.  It was amazing when Deacon Jim saw Liam again.  Deacon Jim just began to sob when he saw Liam again, it had been one year.  We attended mass and Liam received a special blessing from the visiting priest.  This priest had lived with St. Padre Pio during the last 3 yrs. of St. Pio's life.  We also received another special blessing from Deacon, which we value tremendously.

 

- Liam has learned how to swallow pills (in this case m & m's).  We are praying that Liam secures eligibility for his next clinical trail over the next week or so.  In preparation for that, he has begun to teach himself how to swallow m & m's all by himself.  His next drug treatment could be ABT 751 which is designed for adults and comes only in pill form.  Congratulate liam on his ability to swallow pills like a really big boy!

 

- Alli is two days into her potty training and she is doing great.  Liam is being a great big brother and trying to remind her to "go on the potty".

 

NEW FEARS?  I am disappointed to post that we are worried at this moment because Liam is beginning to show black eyes again, which started over this weekend.  Also, he was complaining of abdomen pains for several hours yesterday.  Thank God - the abdomen pains have stopped, were not sure what was the cause at this time.  We can not afford to waste anytime when it comes to seeing symptoms with Liam.  We are grateful that the team at CHOP shares our urgency, thus, we have pushed up a scheduled MIBG scan for Liam by one week.  It was originally scheduled for 12th, however, we have moved the scan up to this Thursday, 10/6/05. 

 

Please pray the Scans show no signs of relapsed tumor, especially in his skull and good eye.   Please pray that his stem cells continue to engraft from his stem cell rescue (given on 8/18/05),  and that his platelet counts remain strong, thereby, making him eligible for the next clinical trial. 

 

Thank you everyone for caring so much for our Liam.

 

9.9.05, Friday, 9:40am

Hi everyone - only time for a quick post (to relieve some guilt from not getting to post sooner as promised).   We are back from our vacation and "back to reality" in every sense of the word.  I'm a bit overwhelmed with work, house, bills, you name it.  Thank God that Andrea is so very strong -  Clearly, we both would not be able to survive our "normal" if we both didn't share the load.  She is amazing.  Liam's treatment regiman is truly a full-time job.

 

- Liam did start school on Thursday and is loving it.  It was very exciting for all of us to have him do something normal. 

- The other BIG news is that our precious little Alli started pre-school the same day on Thursday.  She too is adjusting well.

- Liam's eye does not seem to be improving, but we will continue to hold onto hope.  We meet with the eye specialist on 9/15.

- We are very happy to post that Liam is doing great with the home chemotherapy so far.  Due to schedules, requirement of empty stomach and time it takes to complete ---  Andrea determined that 4pm is the best time to start each day, with the goal to complete by dinner time at 6pm.

 

Hopefully I can find more time over the weekend to post about the trip and actually get some updated pictures on the site! 

 

9.4.05, Sunday, 1:00pm

Hi Everyone!  WE ARE BACK from an amazing trip to Walt Disney World and we are currently on "Cloud 11" in the Kane household.  According to Andrea, "Cloud 11" is 2 steps better than being on Cloud 9.  :-) 

 

Thank you GOD and Thank you prayer warriors!  Our God is a great God and continues to answer all our prayers!  We arrived back in town on Thursday morning (9/1) so that Liam could receive his MIBG injection (low dose) in preparation for the MIBG scan scheduled 24 hrs later on Friday (9/2).  Liam had the scan at 10:30am and Andrea and I had to wait until 1:30pm to get the results.  Andrea said it well in that Liam's (and Alli's) wishes came true last week in Disney World, however, Mommy & Daddy's wish came true on Friday when Dr. Maris said, "Liam has had another beautiful response to this 2nd round of MIBG therapy".  YES!!!!!!  Our Superboy has done it again!  This response appears to have been even better than the 1st round!  To be clear, he is still showing some residual neuroblastoma tumor in both knees and one arm, thus, it was not a complete eradication of tumor.  However, the new tumor spots that had appeared under his right eye and within his skull are gone!!!  We believe that this 2nd round of MIBG has taken the bone marrow tumor back to its early stages where it began (17mths. ago) in the knees and hip. Excluding the knees and one arm, the rest of his body is disease free, YES!!!!!

 

NEXT STEPS: 

We learned from the 1st round of MIBG that this positive effect may not be long-lasting.  Thus, the prayer request remains the same.  Now that Liam has had the response we prayed for; please pray that the positive response to this 2nd round of MIBG is long-lasting.  The bottom line is we need enough time for his stem cells to fully engraft (remembering we did a Stem cell rescue just 2 weeks ago on 8/18).  We need his stem cells to re-establish a strong immune system for Liam.  Finally, once his immune system has recovered, then we can re-consider other experimental / phase 1 therapies similar to the MIBG to find that next step to his ultimate cure.

We know that the positive results of the 1st round of MIBG lasted only 6 weeks.  The scans we took on Friday (9/2) were taken exactly 4 weeks after his 2nd round of MIBG.  Therefore, our strategy is to be proactive and attack this evil disease.  However, at the same time we are trying to let Liam's stem cells do their magic and re-create a new, strong immune system.  Thus, it's a "balancing act" we must manage.  We want to give Liam a treatment right now that will hopefully to two things 1.) Attack the residual nb tumor cells or keep them at bay; and 2.) have minimal effect on his stem cells so they may develop the new immune system.  To that end, Liam will begin taking two oral chemotherapies tomorrow (Monday, 9/5).

The benefit of taking this chemotherapy orally is that we can keep him home and out of the hospital.  He will begin taking Temodar (temozolomide) and Irinotecan (camptosar) tomorrow (Monday, 9/5).  The plan is to get through 2 to 4 cycles of these chemo drugs.  Each cycle will last 3 weeks.  Thus, 2 to 4 cycles of Temodar / Irinotecan will total 6 to 12 weeks of time for his immune system to fully recover.  Thank God that we have Dr. Maris, Pat Brophy, Dr. Mosse and the entire team at CHOP who give us "options".  These chemotherapies create yet another challenge for our Little Big man to overcome (and for Mommy & Daddy to push through - ugghh).  The Irinotecan we will give him is in the I.V. form.  It is not designed to be taken orally and has a horrible taste.  The doctors have suggested giving it to Liam with cran-apple or cran-berry juices to mask the yucky taste.  Similarly, the Temodar is only available from drug companies in a pill form.  It's a drug normally given to adults with certain brain tumors that have recurred or progressed.  Somehow, beginning tomorrow, we need to get 5 pills a day into Liam.  We may have to convert these pills to liquid and give it to him by syringe (as we do with all other pills).  If we go that route, Andrea will have to wear gloves and open the pills outside in an area with good ventilation.  We are told it will release toxic dust and we are to avoid getting that into our home air system.  Andrea has been and still continues to be an amazing strength through this entire crisis.  Please pray that Liam adjusts to yet more medicines in his daily regimen and for Mommy & Daddy's (especially Mommy!) resilience.

 

EYESIGHT - Liam still cannot see out of his left eye.  We have scheduled to meet with an optic nerve specialist on Sept. 15th at CHOP to get a second opinion.  The 1st doctor has diagnosed Liam's left eye damage as permanent.  Eye cells are identical to brain cells in that they are fragile and generally do not repair themselves.  The 1st eye doctor explained that he can not diagnose if the current damage is "done" or that if it will get worse from its current state or that if it may be in repair?  He said that only time will tell the extent of the damage.  Remaining hopeful as always, we asked him to assume that the eye is trying to repair itself and asked what can we do to help?  He suggested putting a patch over his good eye (his right eye) for ½ hour a day to force his brain to use the damaged left eye in hopes to help it recover.   So, long story short, Andrea had an excellent idea and found a pirate outfit at the Magic Kingdom so we can promote use of the patch.  We are to try and increase the time he wears it gradually each day in an effort to trick his brain into healing his left eye.

 

STEM CELL RESCUE / IMMUNE SYSTEM RECOVERY

Additional good news we received on Friday (9/2) was that Liam's stem cells are showing the first signs of successful engraftment.  His ANC was 4690!  Yes, that is correct, 4690 is a long way from the 149 ANC reading he had when we left for Walt Disney on Monday, 8/22.  We had to give him his daily GCSF needle (and all his other standard meds) while we were at Walt Disney world to help his stem cells engraft.  Additionally, we had to visit the local hospital in Orlando 3 days to take blood counts and give him his red blood & platelet transfusions during our vacation.  Unfortunately, this evil disease doesn't ever take a vacation so there is never a vacation from the treatments for Liam.

 

Believe me when I tell you, we did manage it so Liam and Alli had an Amazing and Memorable Make-a-wish trip to Walt Disney World/Magic Kingdom, Universal Studios, MGM, Gatorland, Animal Kingdom and Orlando.  We did leave this crisis "at home" as much as possible and did have an awesome vacation, but our reality is that we can never be rid of the battle until we ultimately cure him of this evil disease.  Andrea and I even managed to fit in a great date night when I took her to see Cirque du soliel. 

 

School - Due to his high ANC and great start to his stem cell recovery, we can let Liam start school on Thursday with all his friends!  This is really great for him as he felt left out some times all last year when he was unable to go to school for fear of infection. 

 

Well, its about 2:40pm in the afternoon, its gorgeous out and our neighbors are having barbeque that starts at 3pm.  I want to go celebrate with them all the good news from Friday's Scans.  I promise to share with you lots of details on the awesome Make-a-wish trip, but it's more important to update you on his health first (obviously) and focus our prayers. Sorry for the teaser, but Liam wants me to go to the John's and play baseball and I don't want to lose anymore of this gorgeous day.  I'll share the"Fun" post update tomorrow. 

 

Thank you, Thank you, Thank you for unending support for our Little Big man!  Faith, Hope, Courage, Liam!

 

 

8.22.05, Monday, 6pm

HELLO EVERYONE!  The prayers are being answered!  Liam is doing very well with his energy and attitude.  He is so very strong he makes us so very, very proud.

 

Eyesight = We are sad that Liam has lost sight in his left eye.  It is feared that it is permenant damage to the optic nerve.  We are getting a 2nd opinion from a neuro-optrician (eye / nerve specialist )at CHOP on Sept. 15th.  We are praying that his eye will repair itself, but the truth is this is not likely.  The doctors feel its permenant damage due to extensive chemotherapy. 

 

STEM CELL RESCUE went very well.  This is truely an amazing process.  Literally, we are rescuing his damaged immune system and saving him in the process.  Nurse Mary showed us something amazing.  We took the very bright light used by doctors to check ears and shined it under the tube as his Stem Cells were being put into his body.  We could see tiny, tiny clumps of cells flowing in the liquid to his body.  We were literally looking at his life pass down the tube, it was emotional to say the least.  Mind you, Stem cells are microscopic -  so each tiny, tiny clump we could see was probably made up of millions of stem cells.

 

THE BIG SURPRISE --  as you've probably guessed by some of the message left for Liam, we are going to Disney World for Liam's Make-a-Wish!  Our in-laws are house sitting while we are gone and we have a very sensitive alarm system so don't get any ideas bad guys!  Wish us luck as we must drive down due to Liam's non-existent immune system and do not feel safe putting him on an airplane (a flying petri dish of infections).  We flew out to Chicago in July for the Neuroblastoma conference and we had a horrible experience being stuck on the runway for 6 hrs.  No way are we going to put ourselves in that position again.   IF we had our choice, we would have delayed this trip until the Fall, however, the doctors suggested this would be a good time to go for Liam's health.

 

PRAYERS -   Our next big event is Sept 2nd when we find out how well he is responding to this 2nd round of MIBG.  Sept. 2nd is huge as it will dictate our next steps.  Our prayers are that 1.) we have a fantastic time at Disney with memories to last a lifetime, 2.)  He stays infection free on our trip!, 3.) SEPT 2nd scans show an amazing result to 2nd round of MIBG, and 4.) that the effects of MIBG are long lasting, allowing him his immune system to recover and make him eligible for another phase 1, experimental therapy.

 

Thank You, Thank You, Thank You for continual support and prayers.  Literally, we are getting in the car a heading south right after I complete this post.

 

8.16.05, Tuesday, 1:15pm

Thank you for continuing to pray and support our family.  I wanted to update you that Liam's energy and lust for life continues.  We have every reason to believe that this 2nd round of MIBG is working and is giving him significant relief.  He has only requested pain medicine one time in the last week, which is a huge sign. 

8.13.05, Saturday, Liam and Daddy spent the whole day at the hospital as Liam required both platelets and red blood cell transfusions.  It was awesome news that Liam did not require a platelet transfusion last Thursday, but we knew that he would eventually require one.  It wasn't so bad spending the day inside on Sat. as it was ugly hot here in Phila. all weekend long. 

 

8.14.05, Sunday, we all enjoyed a nice family day (inside again due to the heat).  I did spend a significant amount of time outside re-arranging our swing set and the ladder to the slide.  Andrea's friend, Kelly lindenhoffen arranged for a used swing set to be donated to Liam a few months back, which was awesome as he and alli can now play in the backyard.   We all took a walk with the John family to our local Ice cream parlor.  This worked out great as any interaction with buddies has to stay outside.  Liam's ANC count was 130 on Sat. (normal is 3000 - 5000).  This drop in his ANC is expected and is not a surprise.  The MIBG first attacks the tumor, and then it inevitably attacks the good bone marrow cells too, resulting in a drastically compromised immune system.  Liam's ANC will bottom out at O and stay there until we perform the Stem Cell rescue on Thursday, 8/18.