September is behind us, transplant behind us. September will forever represent the pain, the hope, the wait of the transplant that saved Jacob’s life. It almost feels like a dream now, looking back, it’s hard to believe it’s really over and although it seemed to drag on and on…somehow it amazes me how fast it all seems now that we are home and the worst is behind us. …or so I thought.
October: Trick or Treat? Definitely just a trick, a joke, a false hope and shattered light at the end of our tunnel… October came and sent us home at last. It should be forever symbolic of triumph…a battle won, a time to celebrate. Our plan: get home, get our lives back, be together again as a family…Jacob looked forward to finally getting his “Make a Wish” wish! He was so happy to be going home and we all just knew it was going to be all uphill from here. We were so wrong. We had exactly 1 week at home before the rug was yanked out from under us and landed smack back into ICS for just about the whole rest of October. October promised recovery…but broke the promise and reminded me that Jacob has a long road ahead of him before he’ll be himself again. Will he ever be himself again, will he ever be the same? Somehow, I’m realizing he won’t be. I believe that with all my heart that he will get his strength back and he’ll recover from this completely…I have to believe that, but right now it’s hard to believe. It’s hard to even remember who he really is…where do I find that image to cling to? I need it so desperately right now, but pictures make me cry. I miss the old Jacob, the real Jacob. Cancer is a theif! He’s already grown so much since all this started. He’s grown and changed in so many ways. Somehow he just isn’t a little boy anymore, he’s matured so much. He’s older and wiser…wiser and more “educated” than any boy should be at his age. No child at any age should have to wake up every day and have to fight to defeat death, stare it in the face, smack it on the cheek and stare it in the eye…as close as they can take you without letting you go there and then fight his way back to life, day after day after day. You just can’t do that and expect him to ever be the same innocent, naïve, happy, outgoing and optimistic child that he was before.
Home again was October 28th. Finally we were able to go home, once again…hopefully for the last time…hopefully we’ll never have to go back to stay in the hospital overnight. The 28th was a Friday. They asked us to come back on Monday, the last day of October…yeah, on Halloween for an appointment check up in the clinic. It didn’t feel like Halloween and we weren’t interested in costumes, but Jacob was already unrecognizable…no costume needed. The steroids were working, doing their stuff and the side effects were showing their nasty head. The steroids cause him to swell unnaturally. His whole face is twice the size it used to be…and it’s not because he’s finally eating. He’s got a double chin and his cheeks are so swollen that they actually hurt! His belly is starting to swell, and his ankles and feet look worse than mine did when I was 9 months pregnant and I couldn’t wear my own shoes. The anti-rejection medicine causes rapid (dark) hair growth…everywhere! Combine that with steroids and you get a complete makeover. Thick black eyebrows and eyelashes have grown where he once had blonde and on his head has soft black stubble. The tips of his ears have grown fuzz and of course, his upper lip. Normally, a 14 year old boy would be excited to see fuzz growing on his upper lip and he’d be excited about his first shave. I’m sure I would have been sneaking by the bathroom door hoping to get a snapshot of that. But not for this boy…this fuzz was not welcome and not normal. So in short, we didn’t need a costume for Halloween, you wouldn’t recognize Jacob if you saw him walking down the street these days.
Are they worth it? The steroids with their nasty side effects are supposed to give him back his lung capacity, reduce the inflammation and stop the immune attack. On this day, he had to do a Pulmonary Function test. He’d done one of these once before…just a day or so before going in for his transplant. To do this test, he goes into a chamber about the size of a phone booth. In the chamber is a tube that he has to breathe in and out through. This time his nurse was dressed in a Sponge Bob costume and it was hard not to laugh at the goofy costume with Sponge Bob’s big eyes strategically placed over her boobs. Jacob did an amazing job not staring. The boobs are actually a perfect place if you think about it…just look at Sponge bobs face next time you see him and then imagine that square body placed on a nurse’s torso wearing shorts and tights…where would you put his big round eyes? Her assistant was Dorothy from the Wizard of Oz. Ok…so they ask him to suck in as deep as he can for as long as he can until he can’t possibly get any more air in and just when he is about to pass out, he has to blow as hard as he possibly can for as long as he can. All this time you’d think those nurses (in the sponge bob costume and Dorothy) were training to be football coaches. Yelling at him at the top of their lungs screaming, “DEEP BREATH, DEEP BREATH, HOLD IT HOLD IT HOOOOOLLLLD IT!” and then “okay now BLOW IT OUT , HARD AS YOU CAN KEEP GOING KEEP GOING….” Really…she was LOUD!…(really hard not to laugh now) Dorothy and Sponge Bob screaming at him, coaching him to breathe. Anyway, they are pretty tough on making him work very hard on this test and he was completely exhausted by the time we finished.
The test tells us his lung capacity. He was looking pretty good, at least average before the transplant. As I sat watching him do the test today, here’s why I wasn’t laughing. I thought back to the last time. I remember what the screen looked like the last time. There’s a line across the middle of the chart and I’m assuming it’s sort of a middle of the road average mark. Jacob’s line was far below it. No matter how hard he pushed, he couldn’t get his line close to that one. I remember where his line was on the graph before…the line that showed his “capacity”, his pulmonary function. It was above that average mark. I wondered just exactly how much different this test looked. I asked if I’d be able to compare the two. The nurse said that would be interesting, but didn’t offer to let me see the last test results. I asked again when we got upstairs to clinic, but Hillary just said, “That would be pointless, we know he’s nowhere near that level, we know what it used to be, but now we just have to focus on where he is now and where he’s going from here.” Okay I said, I guess that makes sense…there’s that optimistic way of coping with this. Just take what we’ve got and go with it. It is what it is and there’s no changing what’s already been done. We have to start from today and go forward. …okay, ya, we’ll do that…whatever you say. After all, you have experience with these things and we don’t so we just have to listen to your advice and swallow hard, cope with it and do our best to accept it. …somehow, I still want to see that other test and compare the two side by side. I want to see exactly how much “capacity”, how much “function” they stole from him. I want to know.
They’ve got so much more information about my boy than I’m allowed to know. It doesn't seem fair. But without the medical knowledge, training and experience to understand all this, I don’t get to know everything. Even with as much experience as I've had taking care of him through this, by his side through this journey, soaking it all in…there’s still things I don’t get to understand and they don’t explain to me.
Monday’s appointment gave them more information: he's got another funky and dangerous virus. So, we got a call on Tuesday that he’d have to come back in on Wednesday to get a new IV medicine and a transfusion that he’d never had before. It’s called “IVIG” and it’s another blood product…a first for Jacob. It’s just amazing how many people have contributed to his survival by donating their blood! One of these days, I plan to count all the transfusions of red blood cells, platelets and plasma he got and I’ll add that to today’s IVIG infusion. The IVIG makes the number un-countable because it’s a product that they get from mixing the antibodies of hundreds of different people’s blood. When they checked Jacob’s labs, they found that he was positive for CMV (cytomelagovirus). This is a really common virus and they say about 80% of people have it. In healthy people with healthy immune systems, it’s not a problem. Since we never get rid of viruses, after a CMV infection, it just hangs out “dormant” in your body for the rest of your life and your immune system keeps it from ever getting us sick again. Sort of like when you get Chicken Pocks and develop an immunity after. Well, when your immune system has been knocked out like Jacob’s was, then CMV can “wake up” and wreak havoc on people with weakened immune systems. Oh and yes, it’s life threatening if left untreated without an immune system.
Just when I think the worst is behind us and we won’t have to fear life threatening conditions every day, I’m told he’s got another “life threatening” condition. “But don’t worry…we’ve got medications for that. We’ll keep it under control, we’ll monitor him closely, we’ll treat it if necessary, we can save him from that.” It’s crazy how we just take it. Just accept another “condition” and go with it, keep going about our day, add another medication to the list and pray that it works exactly like it’s supposed to…all the while, waiting for which ones of the many side effects he will be dealt in the deck of side effect cards. If he gets handed a bad one that he just can’t handle, he has to take another card from the other deck, the medication stack. He gets another medication to offset the side effect card…and hopes the side effects to that one are a little more bearable. It just doesn’t make sense...but we don’t have a choice.