One month later…0March 10th, 2012Liam
There are days when it feels like it was yesterday Liam was running on the shore in Honolulu before all this craziness started. He was running so fast his little legs were a blur. We really only enjoyed a few special hours swimming and playing before Liam became sick. We are so grateful for all your support, it is amazing to he held up in so many ways. While we were in despair and at our most desperate it was so encouraging to feel you all with us. Even just remembering the feeling of finality on the flight home brings me to tears. We didn’t know what to expect and I must admit because Neuroblastoma is so nasty I did assume the worst. Thankfully we were greeted with such greater hope in Chicago.
We found a loop hole in our situation. Liam did so well with his treatment but the only flaw in the treatment is it doesn’t cross into the brain. All it took was one little cancer cell to start trouble in his beautiful brain and the standard treatment doesn’t cover that spot. We have been told it is extremely rare to have brain involvement and my first response is that it wasn’t long ago that children did not survive long enough to find out. We have benefited from so many champions before us. We are not the first kiddo that this has happened to. Again we get to follow in the successful shadow of so many children and thankfully we are in a situation where there is a specific treatment protocol. The studies that have come from 2003 have a remarkable 80% long term survival for children in similar boat. The frightening thing is that before the brilliant doctors in NY figured this plan it was a certain death sentence children were given less than 6 months to live. You can see why we are excited by this study. We have never been given such promising numbers through all of his treatment. I was praying for a clear sign of how to proceed and this was just the billboard we needed.
Hawaii was supposed to be our family re-centering before testing on Feb 17th. We will always wonder why he had the brain bleed there is no way to know for sure. We celebrated Liam’s 4th Birthday at Pump it Up a few days before we left and he could have banged his head around having so much fun, it could be taking off and landing a few times on the airplane or tumors can just bleed. Certainly no one that saw Liam playing or at school would have any idea of the rather large rapidly growing tumor.
The treatment started on the day of surgery February 7th. Our Neurosurgeon reported the tumor was like a Swedish meatball and he was able to remove it entirely. Liam is recovering so well, it is amazing how fast he bounced back. We started our first 1 week cycle of chemotherapy Feb 20th. Liam snuck through like a champ by the end of the week we figured out how to manage side effects really well.
Radiation treatment to Liam’s spine and brain started Feb 22nd. The course of radiation this time is going to be tougher. The initial plan is Monday- Friday at 7am for 20 to 25 sessions. Liam is put under general anesthesia every morning for 15 minutes which is tricky because when the sedation time is so short the little guys can wake up super pissed off. It’s been a roll of the dice so far. Some days are great some not so much, but he is doing fabulous. Our tentative end date is March 20th. Thankfully the treatments are at Northwestern downtown and at that hour there is barely any traffic and we usually are door to door in 20 min. The difference in this time and the last is Liam is a lot stronger now and has needed less blood products to support him. At least twice a week we go straight from Northwestern to Children’s for a few hours. The few days that chemo and radiation were together were long days but since we have gotten really lucky not spending too much time away from home.
Liam is running for long days and is appropriately tired, and lost some appetite related to chemo and radiation. Occasionally he suffers from headaches but they have become less frequent. Sadly, he is losing his hair just in the last few days. It is crushing to see his locks fall again. It is much harder to explain things this time around because he is so much smarter, older and has excellent questions that I don’t have the answers to.
What’s next… we have a consultation in New York on March 27th with Dr Kramer from Sloan Kettering Hospital. They are a very special institution in the advances in Neuroblastoma. The details of our treatment need to get hammered out and I hope we have some questions answered during this visit. From reading the study it seems like our time line is…
- Finish radiation 3/20
- Consult in NY 3/27
- Cycle 2 of chemotherapy at Children’s Memorial
- Stem cell rescue( using the leftover Stem cells collected for transplant to boost his recovery)
- Placement of head port- ommaya
- Move to NY for 3 months (May)
- Back home to Chicago
- Welcome Baby Brother or Sister (Surprise, for those that didn’t know I was expecting in August)
- Back and forth to NY for second phase of treatment
- Oral Chemo at home in Chicago
- Live forever cancer free!!!!!!!!!!!!!!!!!
So that is the plan as we know it so far. A lot to bite off, but much better than what we thought we were up against. Liam is thrilled to welcome a new baby. Honestly, it comes at just the right time no matter how you look at it. Babes are a blessing for the hope and joy they invoke in every way. We planned to keep it a secret from Liam but there was no better time than sitting scared and hopeless in the hospital in Honolulu to bring up the most exciting new ever. As I told him I worried he may not meet his sibling but now I am certain they will be the best of friends. I have a wish that I delivery in Chicago instead of NY but no matter what it will be just fine.