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February 21, 2005
By Laurel | February 21, 2005
Hi all.
Thanks so much for the continued support! I figured I would spend some time updating everyone, so settle in, get a cup of coffee, and start reading 🙂
Sam is home now and is doing well. I can’t tell you the exhilaration Margot & I felt when we brought him home Thursday. It was just a wonderful feeling.
Since being home, he’s beginning to eat a bit, usually soy milk protein shakes and peanut butter. The doctors told us the key is calories; 2nd place is good calories, so we’re being pretty lax about ice-cream and sodas also.
The nurses & doctors at Children’s continue to be wonderful. They answer many questions and next on our list with the doctor is to review all of Sam’s scans and pathology reports which will give us a clearer understanding of how aggressive his tumor cells are (tumor cells can have a wide range of aggressiveness based on gene characteristics of the cell) and how much of his body is “involved”, the medical term for where the metastasis is.
The primary tumor is in his abdomen above the left kidney and we know there is involvement in both leg marrows and the right knee. Other than that, we’re not sure, but we’re particularly interested in the abdominal involvement and learning more of that since the primary tumor site is really where doctors focus a lot of attention.
We went to City of Hope Hospital in Duarte, CA last Thursday. Sam’s PBSCT (peripheral blood stem cell transplant) will be done there. It was a GREAT meeting: the transplant doctor is a neuroblastoma expert, cited Journal of Clinical Oncology results, and had answers to our questions. With her help, we’re changing a bit of Sam’s treatment and will collect extra stem cells (helpful since relapse therapies sometimes need extra stem cells) and during the chemo phase of the transplant, we’re going to substitute some less toxic chemo agents for carboplatin and etoposide, which are pretty powerful agents and have some side effects we’re trying to minimize.
We also learned that the transplant phase will be longer than we thought. Probably 7 to 10 days for chemo, 21 days minimum for the transplant, and a week or two to keep Sam local so they can check everything. We are planning to be there for about 6 to 8 weeks, but it’s all good – there are lovely views of the mountains!
We also learned that we need to do some research on surgery & radiation. After talking to numerous doctors, we have learned 2 guidelines: get as much initial therapy as possible- so we will also be enrolling Sam in an antibody therapy post chemo; it’s very important to get all of the primary tumor from Sam’s abdomen so we need the surgery to be aggressive. From a radiation perspective, there are new types of radiative therapies that focus the radiation in very defined areas which is helpful to minmuze the impact of radiation effects on Sam’s organs.
Andy is doing well – he walks around saying “Sammy is getting better!” and we love him for it. We still have high hopes of getting him potty–trained soon since he was so ready, but that may be a back-burner item. Ugh!
Sam’s next round of chemo starts on Tuesday. They typically examine him in the outpatient oncology clinic and if his vital signs, blood are good and he’s not running a fever, they admit and start the chemo. The 2nd round of chemo is identical to rounds 1,4,6: 72 hours straight of 2 chemo agents and 6 hours on each day of a 3rd chemo. They usually monitor Sam for 24 to 48 hours post-infusion so we anticipate discharge Saturday or Sunday of next week.
Returning home again is key since that’s when his white blood count goes to 0 (he becomes neutropenic) and the risk of infection is very high. For round 1, Sam was neutropenic for 4 days and it took 7 days for his counts to be high enough so that his wbc count was considered low-normal. We’re charting/studying this so we can predict & help protect him.
All-in-all, we’re doing great. Sam/Andy are the joys of our life and we truly believe that “this too shall pass” and that Sam will be one of the lucky neuroblastoma patients who will walk away in remission and will stay that way. As the City of Hope doctor reminded us, belief is a very powerful tool and we’re HUGE believers in Sam and God.
Thanks so much for everyone’s help. We’re beginning to get comfortable asking for help and taking people up on their offers. The treatment protocol is long: 6 months for the chemo, radiation, surgery and if you add the antibody and retinoic acid treatments, his treatment will stretch to 12 to 14 months. So, be patient and I can promise you that we will be getting evryone more involved with us than they can imagine.
Please keep Sam in your prayer & thoughts!
With best wishes, Neil, Margot, Sam & Andy
Topics: Progress Reports | Comments Off on February 21, 2005
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