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    March 31st, 2011willLiam

    March 31, 2010 is a date that is burned into my mind for life; one year ago today was the day that I learned the word Neuroblastoma.  Over the course of this past year, we have experienced an amazing passage of time where it seems to crawl and fly by all at the same time.

    As I look back, we learned to spend holidays and special family time (Pa’s Birthday) in the hospital, I remember wishing everyone a Happy Easter and thinking how strange it was that we were not going to see friends and family.  I was wrong about not seeing folks, as we quickly learned to have family parties at the hospital (which is not an easy thing when you consider the size of this family). We also welcomed a new hospital family into our lives and formed friendships with our healthcare team, I would imagine we will keep many of these extraordinary folks in our lives for a long time.

    The Kelly Family had a lot of ups and downs looking back (Central line falls out, Chemo – Round 2Round 3Round 4Round 5, Round 6, Surgery, Stem cell harvests and 2 Stem Cell transplants and of course our current go around with antibodies),  but we made it through all of that.

    I just wanted to say a quick thank you to all our friends and family, without you we would not have made it through this year.  When this is over, I look forward to spending more time with all of you!

     

     

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    March 18th, 2011MurtLiam

    Totally Charmin'We have had so many ups and downs but I do believe the ups have greatly outweighed the downs these days.  I will not recap with much detail on the missing time. The short and sweet is better for all of us. The second bone marrow rescue was tough, Liam was tougher, but it is something I wish to forget, and I pray he won’t remember. We were in the hospital until December 7th. Liam’s 3rd birthday was December 15th so we got to spend it at home in our super clean house thanks again to so many special people and my beautiful husband. We also got a fabulous fake Christmas tree and celebrated the holidays in the quietest but most wonderful way. Liam has been a champ so Santa rewarded him accordingly.

    Radiation was not so bad. My baby has tattoos to mark the radiation spot, I plan to use all of his scars and tat’s to his benefit over the years. It was early morning wake ups for about 3 weeks. Some days better than others waking up from anesthesia every day is tricky.  Liam preferred the quick visits to Northwestern to our frequent and long visits for blood and platelet transfusions and the dreaded central line dressing change. We accomplish most things with the aid of bribes, I don’t know if I have written this before but I am 100% behind giving Liam gifts for everything. We may have a house full of toys enough for 20 boys but I am proud that we figured out how helpful a wisely placed monster truck can change a moment from tears to joy.

    As you read before Liam had some fantastic test results that represent all the hard work he has put in. No Evidence of Disease, sweeter words have not been spoken. Neuroblastoma is nasty and we are blessed that Liam is doing so well and we believe with every stitch of our beings that Liam will be celebrating with us for a lifetime and we rely on your support and prayers to keep us going even on the scary days.  Thank you.

    So what are we up to now? We got on a promising  antibody study by the skin of our teeth. This treatment will go for 6 more months. We are heading in to the second round of it this weekend. Liam did really well with the first round, truly better than I could have dreamed. 

    About the lack of updates, I know there are so many of you checking in and I really appreciate you all.  We are so busy playing, healing and sleeping that I just don’t know where the time goes. Thank you for caring and loving my boy so much:)

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    February 17th, 2011willLiam
    We just wanted to pass along some wonderful news.  Last week we had a full set of tests and scans and all of Liam’s tests came back without a sign of neuroblastoma!!!
    We still have several months of treatment ahead of us, but this is truly wonderful news!
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    January 20th, 2011willLiam

    It has been a few weeks since we have had a chance to give everyone a good detailed updated so I just wanted to give a quick update on what has been going on (More details to follow).  We got home from our second Stem Cell Transplant on December 7, 2010 and Liam hit the ground running.  He was so happy to be home for his birthday and Christmas.  We have had a few restriction on our contact with folks especially given that we are in the middle of Flu season, so things have been on the calm side (not our usually holiday).

    Once our counts rebounded Liam was able to start the next step on our journey, radiation!  We are currently a few treatments into radiation and other than the early wake ups he is doing amazing with this phase.

    Lastly, for those that have not seen the video Liam’s Auntie Coll’s made for his birthday (3rd), here it is!

    Thanks again to everyone for the help and support this year, it has been amazing.  Keep the prayers coming!

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    December 2nd, 2010MurtLiam

    We were preparing for a quick turn around back to the second transplant, it was a blessing in disguise that we were able to rebuild strength, appetite and just have the most time at home since March. The hold up was Liams WBC’s, they were heading back up slowly. I had a lot of anxiety that Liam wouldn’t have had enough time to repair between but thankfully he was making huge strides, regrowing eyelashes, brows and even a new head of hair. We had a few discussions about how the next transplant wasn’t going to be as short or easy. I am forever the optimist so I figured we will just have to wait and see.  We met with Evan a couple more plays before checking in, it was just so great to see the boys having a blast.

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    December 2nd, 2010MurtLiam

    We had a blast between transplants! As soon as we arrived home Liam hit the floor running. Home was set up as a giant play house.  The difference between coming home this time and after the last chemo’s is that he is already through the toughest time.  With fantastic luck we avoided any fevers while at home. We had fun at the park, the beach and with our buddy Evan.

    Halloween was fast becoming the talk of  the house. Liam was excited about dressing up like a T-Rex. Nanny found a fantastic costume for Liam and then for the whole family.

    Liam had a really great time dressing up so we didn’t stop with the dino. If you look closely Liam is actually wearing 2 other costumes under his dino. For starters we have Woody from Toystory then Superman and the cherry on top is T-Rex!!!  Liam’s friend Evan met us for some trick or treating, he was dressed as a leopard and Ellie as an adorable pumpkin. The two boys went house to house together on a fantastic search for candy. The rules are that meeting outside with other kids is fine we just have to wash up when we’re finished.

     

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    December 2nd, 2010MurtLiam

    We had to change somethings around the house in preparation a ton of cleaning and parting with somethings. I looked at it as a chance to purge through all the things that I could have horded forever. I was sorta ruthless in ways and in other ways their wasn’t enough time to go through everything.  We had a lot of second hand appliances and ones that were nearing the end of their lives so we sorta had to start fresh. Thankfully, lots of you lovely friends helped us clean  toys and the hospital helped arrange for a cleaning  of the house and a new dishwasher. Will was so happy to have help in the painting  projects. I do feel like we couldn’t have gotten ready in time without you guys. Thanks.

    We had incredible help washing all of the Kelly Family clothes, towels, and sheets. You name it we washed it.  I am certain  that my friends from Evanston think that Liam may have one or two books too many but what can I say, the boy loves to read. We are lucky to have as much space as we do and truly I feel like toys and presents have such great impact on Liam, the smile is all I need for encouragement. It so happens that my brother Mike and his lovely wife Colleen have a similar affliction. The most recent outrageously fun present was this tractor. I swear it goes 5 miles an hr down the hall.

    Sully has been living with my brother mike on and off  through this crazy time. Liam does miss his buddy(adorable foot rest) but it would be cruel to the pup if he was alone all the time at the house. Not to mention it is easier to paint without him and his lovely black fur.  Sully enjoys his time out in the burbs and playing with Louie and Beau, his ‘cousins.’ He comes back to us every time yearning for a nap. I think they keep him quite busy out there with all the squirrels and the room to run.

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    December 2nd, 2010MurtLiam

    So the Chemotherapy we received was way tougher and the Stem Cell transplant is to help Liam recover. The same way the other rounds of chemotherapy wrecked his counts (White Blood Cells=immune system) the pre transplant chemo was even stronger and Liam needs the the stem cells help to recover (rescue him). The lack of WBC’s brings fever, mouth sores, muscle aches you name it the poor fella feels it. After every round we had the same problems they are just worse this time. Liam is put on a Patient Controlled Analgesia(pain medicine pump) that is managed very well by the nurses and a specific ‘pain team’ that literally manages all of the children in the hospital.

    Liam surprised everyone, he was up and playing days before anyone expected and really didn’t sleep as much as I was ready for him too. Those surprises were fantastic, he did a great job not gonna say it was easy but it wasn’t as bad as I was worried it would be.  We passed the time with craft projects, music, puzzles, books, playdoh and movies.

    On day 10 Liam started sprouting cells, right on target.  The days leading up are the worst itchy, rashy, pukey, ouchy mouth but Liam never stopped being in good spirits. Lots of blood and platelet transfusions increasing the amount of pain medications as needed.  Things started turning around Day13 turning down the PCA , walked the halls at night on the 15 day before you knew it we were out the door on Day 16!

    The follow up is in the stem cell clinic, instead of having the home health nurse come and draw labs(blood) like in the past we have labs drawn at the hospital. Then we wait for results and transfusions if necessary. The goal is to have once a week visits and plan for Transplant #2.

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    December 1st, 2010MurtLiam

    The morning of Day Zero, Liam was still feeling very well and playing with his new treasure of toys. The infusion of stem cells was around 1pm.  With the cells, there is a great possibility of side effects so several medications are given before the infusion to reduce chance for an allergic reaction. The amount was just a little more than an ounce (37ml)that arrives to the room in a space-age freezing container, when all the pre-meds are given the cells are thawed in a warm water bath and then hung by the nurse practitioner only taking 20 min.

    Liam fell asleep and stayed a sleep for hours. Everyone said that is the best way to deal with the weird feelings of nausea and super strange taste in his mouth.  The minute the infusion begins Liam’s breath changes( happens to everyone) it smells like cream corn. It’s not like a faint smell either it is noticeable in the hall outside his room. It is strange but it could definitely be worse.

    This is the chart we use to keep track of the daily activities.  One bath, two lotionings, 4 mouthwash (bubble gum ACT) and 4 mouthwash with antibiotic paste. Liam doesn’t like to do any of the above mentioned activities!!! We started practicing the mouthwash a while ago to make it less a fight. We also have fully embraced bribery. Liam gets cars, stickers, and other little treats for mouth care and bigger prizes for things like placing the nose tube.

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    November 27th, 2010MurtLiam

    The night of September 14 we were  heading in to the hospital for our long anticipated Stem Cell Transplant. On the way in to the hospital we stopped at the park for a swing and to run our wiggles out. I am fairly certain Liam was not expecting  the upcoming hospital stay, it was sad to watch his face when I said we were going to have a sleepover at the hospital. He really does shake off the disappointment quickly.

    The first night is really just a sleepover nothing happens, just to ensure we can get going early in the a.m. I’ll spare you the details, but some of the challenges for this week are for every 6 hour baths and special mouth washes 8 times a day.  So the plan was; chemo 6 days, one day rest and stem cell transplant September 22. 

    Thankfully, the week of chemo we are free to go to the play room and run the halls.  One of the great things about being nearly 3 is Liam’s focus is always on play. He doesn’t slow down for much. The move to isolation is exciting the room is full of toys and decorations that are tailored to Liam.  The room is not big but we definitely make the best of it.

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