Jonathan went to the clinic today and he is OFFICIALLY in LONG TERM MAINTENANCE! He has gotten through the first, worst part of his treatment, and we are so thankful. Thank you EVERYONE so much for all of your support from the very beginning of this. It's hard to believe we are really through the worst of the treatment, and we just pray that it will NEVER come back again and that we - and all the other kids with this awful disease - will go through maintenance and be done.
Jonathan's new phase of treatment will last 3 years. It will be handled in 12 week increments. Today he received a spinal tap (methotrexate injected into his spinal column) which prevents the leukemia from coming back into his central nervous system. He also had IV vincristine (which he will have in his port once a month), and he will start a 5-day course of his steroid dexamethasone, which he will also receive once a month. He also starts back on his 6MP, which is a pill we crush up every night, and give to him in the middle of a 3-hour fast.
This particular regimen will last 12 weeks. We don't have to go back to the clinic for 30 days, but I opted to go back in 2 weeks for counts. Last time we were on the maintenance regimen, Jonathan's platelets dropped so I feel a need to check. It will be nice to do monthly rather than weekly clinic visits over time!!
I understand from other parents that while LTM is a more normal phase, there are still concerns about fevers, etc. I don't want to get too excited and say for sure we are ALL DONE with leukemia, cured and everything for that is clearly not so. But we are through the worst for sure, and now we will be treating it as a chronic illness - Jonathan will continue on daily chemo, but over time, his hair should come back, he should have fewer side-effects and just the one treatment a month. His immune system will still be suppressed so we will have to be careful, but I know we will get into a rhythm.
I do plan to continue to update his Caringbridge throughout his Long Term Maintenance, though maybe it won't be quite as often. But please stay tuned. Leukemia is a disease that takes a long time to beat, and we still need all the prayers that the maintence treatment works and we are all through over the long-term.
On another front related to long-term planning, my brother-in-law, David Pilch, has set up a fundraising account to help collect money to pay for Jonathan's medical expenses. We really appreciate this so much. We were initially reluctant to accept any fundraising directly for Jonathan's benefit, but many other families with leukemia urged us to reconsider and at least allow someone to set up an account in case there were folks who were able to and wished to donate directly for his benefit. They reminded us that leukemia treatment is long-term, and expensive, and that over time, his treatments may cause late-term and long-term effects that could necessitate physical therapy, special education assistance or testing or other special interventions directly caused by his leukemia or his treatments. We will continue to have drug co-pays and office co-pays and diagnostic testing and specialist fees and occasional inpatient hospital stays, and of course, if the unthinkable happened, and he had a relapse, we would need financial help with a bone marrow transplant (we pray this will never be necessary). So David set up a special account, which is ONLY for medical expenses - he will have to keep track of receipts and be accountable that the money is paid out ONLY for specific medical care FOR JONATHAN. If at the end of Jonathan's treatment and a reasonable time after he is off-treatment, so that we feel pretty confident that a relapse is unlikely, we will donate any excess funds to a pediatric cancer charity - it would never go to any purpose other than Jonathan's medical expenses (this is important to me for folks to know, should any donations be offered at any time). If anyone is interested in fundraising for Jonathan's medical expenses account, please contact our brother David at dpilch@hotmail.com. No pressure AT ALL. Just letting folks know this is out there. Thanks especially to David for taking the initiative to support us in this way.
We are REALLY looking forward to having more time to relax and get back into a routine. Some of the best news of the day is that Jonathan will be allowed to go in the swimming pool - he hasn't been able to go yet due to low counts, and the presence of his port-a-cath, which raises his risk of infection. But if his counts stay up, he may swim in a chlorinated pool (but no lakes or rivers - the ocean is okay). So we can probably even go on to enjoy the last half of summer with his brothers and friends - hanging out at the pool as we had PLANNED.
Thank you again so much for all of the support and assistance we have received. We never EVER expected to have a baby with leukemia, but we have been nothing but blessed with good news and love and prayer and support throughout this whole ordeal. Thank you all for everything, and please stay with us as we figure out this next crazy chapter of our lives!!
