Make Something Beautiful

posted on CarePages September 3, 2011

Patrick and I flew to Philly on Wednesday, met with Dr. Maris, and proceeded with MIBG treatment #4. No child has ever had more than 5. Patrick’s skeleton and bone marrow host billions of neuroblastoma cells that are now being carpet bombed by trojan horse radiation. We know this has worked very well for him before to knock down disease with the hope that we could transition to antibody therapy or other trials that have simply not panned out. So we try again. We hope and fervently pray that MIBG will work yet again and that, this time, the only feasible trial will open in the nick of time. The problem is that Patrick’s platelets are too low for almost all potentially effective therapies. Only the hu14.18 trial, with its liberal platelet requirement of 20,000 (transfusions OK with known marrow disease) will do. We hope that it opens and that Patrick’s disease burden is low enough for it to actually work. We are about to watch a war wage between heavily treated stem cells trying to make platelets and neuroblastoma trying to take over for good. The odds are heavily in favor of neuroblastoma. I always loved underdogs.

Erin and I literally tag teamed with a kiss at the main entrance of CHOP yesterday. She got out of the taxi, kissed me, and I got in. When I arrived home Madison was ready to come to the mountains, so here we are. We were able to make the surprise celebration of Jack Prestia’s 50th birthday as planned. Sort of. We are missing a few key members of the clan, but I am glad that Madison and I made it. Patrick’s radiation level was low enough to be discharged today. He and Erin are boarding now and headed home. They will cuddle up with the Dawgs and an adult lemonade and join us here tomorrow.

The next few weeks are critically important. Either the MIBG knocks back the NB yet again, or we will begin to see pain. He will get his stem cells back on September 12 and they will need to engraft in a very hostile environment. He will be transfusion dependent for blood and platelets. We are so near the precipice that Dr. Maris wants us both to be in Philadelphia with Patrick on September 12 because the course will show itself by then and he wants to have “the talk.” Kathy, The counselor at the girls’ school, thinks we should go ahead and tell Madison that Patrick will likely pass within a very few months. That will be the toughest thing Erin or I have ever done bar none, but it must be done so that she can prepare to say goodbye in her way. The thought of taking that pure, sensitive, happy soul and infusing it with such pain breaks my heart. I have wept about it daily. Then comes Anna – but much later in the game. She can’t be expected to keep the information from Patrick, and there is no reason he needs to ever know until Jesus wraps his arms around him for a glorious welcome.

We are planning a day of prayer on September 12. Details will follow. We will pray for no pain, for Patrick’s stem cells to engraft while neuroblastoma cells remain in check, and for the hu14.18 trial to open so that Patrick can continue to blaze trails and warm us with his smiles. Most of all, we will pray for our daughters. Please pray that we press on through grief to a new kind of joy. Please pray that we, especially Madison and Anna, assimilate pain and use it to make something beautiful with our lives. Please pray that you make something beautiful with your life too. If we all do that then Patrick’s life, albeit brief, will not be lost. SRC

PS Go you Hairy Dawgs!