First… our day was long, but fine. Not because of anything worrisome but because TCH is renovating one of their pharmacies and things are a mess. OR at least they were today! What should have been an in-and-out day with labs and a shot, kept us there for 5 hours, plus drive time in and out of town (made for a 7 hour day for Jake). They somehow messed up his Nulasta shot and couldn’t seem to get it up to the 14 Floor for the life of them. It wasn’t just us, the poor kiddo hanging out near us in the Infusion Room waited on his transfusion for 5 hours, then was going to have to infuse for 5 hours – poor guy! But we are home now and we don’t have to go back till Tuesday! His ANC didn’t even register… it’s “zero’d out”. That’s the goal – bottom him out – KILL MR. C! Next, I have news that I am so happy to share (and for those of you that are FB friends you’ve seen some of this)… As we go thru this journey, there is a community of children like Jake. We follow one another. We may live in different cities and many of us have never met, but you wouldn’t know that. We have a connection. It’s called cancer… sometimes it’s Neuroblastoma, or Leukemia, or Lymphoma, whatever… but we’re connected. I’ve been following a little boy named Nate for a few weeks (same diagnosis and about the same age). Today, after 16 months of treatments they announced that “Nate is NED!!!!” NED! NED! – No Evidence of Disease! We LIVE to hear these words one day! I have happy tears for Nate and his family. There is hope! There is life! There is a happily ever after!!!!!!!!!!!!!!! Tonight, I pray for all children (for all people) who endure the pain, the fear, the needles, the loss of hair and awkward stares, the isolation, the long hospital stays, the upset tummies, the rashes, the bandaids and tape, the ER visits, the mouth ulcers, the medicines, the IV poles, the tests and scans and labs, the endless days in Clinic, the chemotherapy drugs, the lack of appetite, the weight loss, the mouth washes, the poking and checking, the multitude of student doctors and questions, the sadness and loneliness, the home therapies, the ports in their little chests and so much more. I thank God for each one of them and their fighting spirits to push on… I pray that they will all know NED one day very, very soon! There are so many miracles waiting to happen. We have faith that we too will be NED.
Right now as I type, my music is playing this song and hope is here… “I’ve seen miracles just happen, hope that doesn’t ever end, even when the sky is falling. I’ve seen silent prayers get answered, broken hearts made new… that’s what faith can do!” by Kutless. HOPE IS HERE! Right here in my kitchen, at my computer, in Nate’s home tonight, in yours too!
Many of you have asked about the comment made in the last post regarding the transplant division. In my non-medical way, I’ll try to give you an overview of Jake’s “road map” – the term they use for his treatment plan. Jake will have 3 sessions of chemotherapy that include 5 rounds each – numbers to paper that is about 15 weeks per session. Overall, that is 15 rounds of chemotherapy, 15 different stays in the hospital at about 4-5 days each (not including surgery and other things). We are at #2. The treatments are 3 weeks from day zero, meaning they are actually about 2 1/2 weeks apart (as long as his counts recover properly each time and there are no infections to throw us of – like recently). During this first 15 week session, they will collect, or “harvest”, his own stem cells and freeze them to be put back into his body later, thus the transplant division comes into play. This will be done somewhere between chemo 4 and 5. At the end of the 1st session, they plan to take Jake into surgery to remove the large mass. Right now the chemo is shrinking the mass in his abdomen (the one about the size of a small grapefruit). They feel that after 5 chemo treatments, this mass will shrink as small as it is going to. The remainder of the chemotherapies won’t really make that mass smaller, those chemos are to continue working on all of the cancer in the bones and liver. After the surgery, Jake will have another session of chemotherapy – again, 5 sessions in Round 2 (another 15 weeks). At the end of this time the stem cell transplant will take place. This should take us somewhere into the summer hopefully, because we will need to farm out kiddos as Jake will be hospitalized in isolation on the 8th Floor for 30 days. My understanding is that we will then go on to Round 3 of chemotherapy – another 5 sessions (15 more weeks), then radiation, followed by Accutane treatments. This will finish up our first year. At that time, we will come together, assess where he is, and pray for NED (No Evidence of Disease). However, many children are not completely disease free in which case, treatments pursue. If this is the case, our discussions will center on if we can stay in Houston or head to one of four cities that continue with the next phase of Neuroblastoma treatments. All of this can change at a moment’s notice… it is his “road map” and we’re told to expect detours along the way. We’ve already seen how it truly is day by day. It’s all just a big lab project and sometimes I feel like our son is the center of someone’s science fair. I just remind myself that God gave us these things called science to do good, to heal, to allow life to pursue… that helps me close my eyes and comfort Jake when my baby is crying from all the pricks. And this information gives us something in which to plan from… sort of.
