Long-Term Maintenance… Aptly Named
Yes, she is still on treatment…..
People who see us out and about ask how Isa is doing, but they seem to think that the treatments are over. NOPE, still dealing with the same stuff, just a different day.
Currently Isa’s on a 50% dose and we’ll know how she’s tolerating it at her next CBC April 11. Until then she is on a strict “Feet on the ground” policy. No swings, bikes, scooters. Her platelets were riding at 50k. The docs would prefer them up in the low hundreds. They gave us the date we’ve been waiting for….May 8, 2011. We’ve known it for a long time, but it never really seemed possible. With changes and things going awry I hadn’t truly anticipated anything happening at that date.
Her platelets are still running low, but her spleen seems to be back to normal size, and her belly is starting to shrink a bit. Definitely it was related to one of the drugs that she is taking but no one knows which one. She looks good, and seems to feel good, but right now she is suffering most with dry brittle hair, and bruising. I have finally come to the conclusion that her attitude is pure Isa! I can only blame the steroids for two more months.
Tonight my husband happened to meet the pediatrician who diagnosed Isa. He shook his hand. This may not seem like a big deal, but as a chef he hates shaking hands, because it means one more time he has to wash them. Most of the time I take the girls to their routine check-ups and he’d never met the regular docs. Funny how someone so important to your child’s life is someone who you’d never seen in person. And just before it all starts to wrap-up.
So many things to look forward to doing, or not doing. Getting this close means that I can see that the end is near. Even though knocking on wood is something I still do frequently I do see that these treatments will end. My goal is to have them be over forever with my child still alive. My heart aches for anyone whose child has gone into remission and lived happily until they relapse. First diagnosed brings shock, and relapse, because you’re in a position of knowing, is sickening.
In the beginning Papa held Isa during her Scooby-doo room experiences. (The treatment room where they do lumbar punctures and bone marrow biopsies has a psychedelic poster of Scooby.) But then slowly I became the main person in the room holding her. Last month, I like to think of it as for my birthday, Isa had her last scheduled lumbar puncture. The nurse practitioner did a dance, and told Isa to pick two toys from the box. In my mind I was hoping for a great toy so that we could say, “You got that at your last lumbar puncture.” But, instead she got two crappy plastic toys that cost practically nothing. So now when I finally toss them out, what will I feel….I certainly won’t be holding onto them, even though I am sure Isa would like to. All the toys she’s gotten from the box seem to be her favorites. Most of them were beanie babies. (Super cute ones too.) She even gave GG one we named whiskas.
This process is a long one for sure. on ALL0331 Isa had double of a lot of the stuff that the other kids only had one of. That is not making sense, but trust me, it is long. Then this maintenance thing is like FOREVER! Then it’s done.
The docs mentioned leaving Isa’s port in for a little bit, just because her platelets are low. But my feeling is that they want to make sure that when she goes off treatment she doesn’t tank and start making blasts again. Her marrow was clear in February, but you never know… knock, knock, knock. Good thing I don’t live in an entirely concrete and steel building with mod chrome furniture. I then could only tap on my Swedish wooden clogs.
Isa’s half birthday is May 9th. Her birthday is her last scheduled IV chemotherapy treatment. We’ve made it this far! What does the future hold for this child who without modern medicine, and perhaps in spite of it, could have died in 2009. I have no idea how long it will take me to forget about what a bruise on her leg, or dark circles under her eyes might mean.
I do know that I won’t miss waking her up to give her medicine in the middle of the night. I rarely told Isa that she couldn’t have milk or something to eat because of her medicine. I just then waited two hours to give it to her. Never seemed right. BUT I did tonight. I said, sorry chica no oranges for you cuz I ain’t a gonna wake you up.
She still has treatments people. I still have to give her pills every night. How about you go wake your kid up and hold a 50mg 6mp in your hand for her to grab and swallow with the glass of water you have in the other hand.