Today we met with Dr Modak at 11:30am. Dylan’s bone marrow results showed that his marrow is clear!? This result is more accurate than previous tests, as samples were taken from 4 areas in the hips and not the usual 2 areas. Why this is now showing that his marrow is clear, when I was told that his marrow was not clear in Australia, I am not sure. Anyway, this is good news, so Dr Modak decided to attempt a stem cell harvest prior to surgery, while Dylan has a clear marrow result. I assume this means it is possible that the next test results may not be clear due to the extent of his disease. Dylan had a butterfly clip put into the left upper leg, similar to what is used when you have a drip put into your hand except it goes into the muscle and not into a vein. For the next four days, I will need to administer GCSF injections daily to prepare him for the harvest. Harvesting will take place for 3 hours at 8am Monday morning and again at 8am Tuesday morning, and then I will meet with the surgeon Tuesday afternoon and find out a scheduled time for surgery on Wednesday and all the details. Dr Modak told me not to be surprised if surgery takes 8-10 hours as his tumor is in a complicated position around the renal arteries. Dylan had a cross match done on his blood today, as he will need a blood transfusion after each day of harvesting the stem cells. From what I understand, the stem cell harvesting can be done via his Hickman line. I picked up the GCSF from the hospital pharmacy and the bill was $2360.66 U.S. That was for 4 days worth!!! Dr Modak said that stem cell harvesting is best done after the blood counts are recovering after a round of chemo, but because Dylan is due for surgery, he wanted to attempt it anyway, due to the good bone marrow test result. Dylan will spend at least 3 days in ICU after surgery, in a hospital across from MSKCC as they have a huge, new pediatric ICU that provides better ICU care that the ICU at MSKCC. After that Dylan will be transferred to MSKCC ICU and then into the general ward when his level of care does not need to be as intense. The time frame on this hospitalization is unknown as it all depends on Dylan’s recovery.
The plan then is to have a round of chemo approx 10 days after surgery, and then as his counts recover after a few weeks, he will have another stem cell harvest. Dr Modak said that we should wait and see how Dylan goes after the first round of chemo, then decide whether to fly back to Australia after the second round for a few weeks, then back to the U.S for re testing. Whether flying back to Australia for two weeks is viable, is debatable. We would need to work around the small window of opportunity when Dylan will be fit enough to fly after the 2nd round is administered. If he develops a fever during this time, then the flight would have to be cancelled as he would be unfit to fly. It is very hard to plan and may not be worth it. Dr Modak agreed that staying in the U.S for the first round of chemo and 2nd stem cell harvest would be advisable, so that is what I have decided to do.
I gave Dylan his GCSF injection tonight and it was most uncomfortable for him, tears rolled down his cheeks and he squealed with pain as I pushed the medication through. After 10 minutes though, he was fine. I then did his Hickman line dressing, flushed each line with heparin and changed the caps on his lines. We were unable to go to the statue of liberty as planned today, due to the weather (snow) and the time we spent in the hospital today, but we are hoping we can do it tomorrow. I now have to focus on the up coming hospital life, as we only have two more days of freedom to see the sights of New York. On Monday hospital and isolation will start. Even when Dylan is out of hospital, he will need to be confined to McDonald House to reduce any risk of infections and viruses. This will be very hard for both of us as our entire existence in New York will be behind closed doors between McDonald House and hospital.