Posted Jan 27, 2011 10:32pm
There are times in life when you know the content of a message before it is received, and Monday night proved to be one of those moments. Patrick’s scan was read as “stable” last week in Philadelphia, but it looked horrible to me, leaving me unsettled and anxious. His bone marrow results showed increased neuroblastoma cells, but this test result wasn’t ruled “progression” because the sample was taken from the front of his hips instead of the back, rendering comparison impossible. So that left the catecholamine tests (urine markers specific to neuroblastoma) as the determinative factor in whether the PEGSN38 was working for Patrick. On Monday, we received the news that his catecholamines (VMA/HVA), which have been elevated since relapse, have continued to rise with each round of the new chemotherapy. Normal levels for his age are below 15 and 9 respectively; his catecholamines last week were 70/71, rising from 50/48 in mid-December. Clearly, we took the road less traveled and it has not made the difference we were seeking.
So, we forge a new path. On February 10, Patrick and I will fly to Philly for another MIBG scan and lab work to attempt stem cell collection. We will fly home the next day to spend the weekend with Stephen and the girls. On Sunday night or Monday morning, Patrick and I will fly back to Philly to be admitted to CHOP for the stem cell collection. We will attempt collection from anywhere between 1 and 4 days. Dr. Grupp, one of the world’s experts on stem cell collection, was very candid on the phone yesterday. He stated that a year or so ago he would not have even attempted stem cell collection on a child as heavily treated as Patrick, post-stem cell transplant and whose marrow is tired. Today, he has achieved success in similar children with a new drug, plerixafor, that has been shown to motivate stem cell collection better than previous drugs. He did qualify that by saying he has treated EIGHT children with the drug, but we are not exactly in a position to be choosy. Eight is better than seven.
Presuming success with the plerixafor, we will proceed immediately into MIBG therapy, the whole body radiation therapy that we did in November of 2009 with some success. I qualify my statement intentionally. It was a success in that it bought us 8 months of remission. It was clearly not a complete success as it was not curative. Our goal here is to minimize his disease so that we have more options available to us after the MIBG therapy. Obviously, remission would be the ultimate prize and one we fervently hope to achieve.
The last few days have been difficult. On the same night we found out that Patrick’s cancer is progressing, we lost a fellow neuroblastoma warrior whose family we have bonded with over relapse treatment. It is so hard to lose any child, but the ones who are fighting in the trench with you cause an increased anxiety and sorrow due to the human mind’s propensity to project. How can we not put on their shoes? Yet, we are blessed to still have our child playing chase in the backyard, tormenting his sisters (always a sign of feeling pretty well), and bringing us joy. He has battled some nausea, headache, and now diarrhea due to the dose of PEGSN38 he received last week, but I would not trade our position for others that we could be in.
So, what do we do? We Press On with determination and confidence in our new plan. We Press On with hope for our brother-in-arms, Brennan, as he endures his fourth transplant. We Press On with our neuroblastoma families who are mourning angels and those who are anxiously living in remission or anxiously fighting to get in remission. We Press On with all of you who are struggling in your own way, for we all have struggles and we all must Press On. It’s a way of life…
With love –