Like seriously. Where is my honorary Hematology Nurse degree? Not that I even want it, but I feel like I deserve one for all of the knowledge this brain has soaked up since June 2015. That’s almost four years. Not to mention the auto-immune knowledge I had already processed back in 2014 when Lucas had Kawasaki Disease at 18 months of age. I’m not the type of person that just sits and waits for the doctor’s word. I study. Becoming fully educated in my son’s medical health, and care is my top priority. As it should be. I’m not talking about the ever so great, Google either. I’m talking about medical journals, and peer reviewed articles, as well as documentation from NIH, Boston Children’s Hospital, and other facility’s in the world. Understandably, some parents just can’t do that, and that’s okay. However I’m wired differently. I act as a first responder who is always flying on auto-pilot. No matter how hard I try, I can’t shut it off. I have to know everything, so that I can be prepared for anything.
Yes, I also take pictures of every single bag of blood, chemo, or cytotoxic drug that goes into his body. I track how long the infusion titrations last, and when they change. When I don’t get blood counts back in a timely fashion, I call the medical records department to make sure that they get faxed to the correct doctors office. I know what he needs to be premeditated for, I know the medications he needs, and the doses. My memory also holds every drug he’s on, and the exact dosages. I play a pivotal role in making sure that our home nurse gets what she needs from the hospital doctors, as for some reason lab work sheets get lost in translation. Everything Lucas needs to get done or have done is time sensitive. When the nurse can’t, I do dressing changes, clave changes, and even administer shots if absolutely necessary.
The doctors have an email chain with over a thousand emails going back and forth about Lucas and what his plan should be. I’m actually really glad I’m not copied on that one. I don’t speak their language. I may understand it more than I should, but I’ll stop there. I’ve got to say though, I feel that I do have many jobs. Mom, Lucas’ personal assistant, secretary, special needs para professional, therapist, nurse, school liaison, medical & mental health advocate, insurance admin, and the list just goes on. But where is my paycheck? Half kidding. I’m just saying, I follow a lot. I know too much.
Lucas should be able to be worry free, but he’s too smart for that kind of luxury. He listens to absolutely everything. Even when we try our best not to speak in front of him. He knows that he is very sick, and he knows that we are trying to get him healthy again. He claims that his life sucks, and he hates every second of it. We understand why he’d feel that way. He’s been isolated for far too long. He doesn’t want to go to school, but at the same time he doesn’t want to be told he can’t go somewhere. He wants to go to a store, or eat in a cafe. He does well with his new tutor, thankfully. She’s amazing with him, and is teaching him how to read. I love when she tells me how incredibly smart he is. When other people see his potential it warms my heart. He is so capable.
He also has found a good bond with his new behavioral technician, who also happens to be an artist. He’s also amazing with Lucas. We couldn’t ask for a better home team, and I think that’s something to be thankful for. It’s taken four long years to like our home team. Which is crazy to even think about. Connecticut is really difficult when it comes to autism services, and what they offer. Which is something I have also learned nearly everything about. Not autism, but the services here in our state. One could never learn everything about autism, as the spectrum is just too broad. Okay, maybe a specialist can do that, but I just can’t. However I’m learning a bit more each day.
His behavior is less than pleasant, and while we understand why. We can’t let it consume our everyday lives. We do our best to handle him with positive reinforcement. His autism is an odd thing itself. He is fully able to communicate as long as he gets to drive the conversation. There are some major quirks that he can’t deal with, like if a DROPLET of water gets on his shirt. Forget it. The whole house has to hear about it, and a new shirt must be worn. Or the “wet” one needs to go in the dryer, THAT INSTANT. He is always in fight mode, if we are speaking about adrenaline here. He can’t chill. So we do medicate him to help him relax, but it doesn’t always work.
We have gone to Boston two weeks in a row. We are probably going to have to go back one or two more times for Rituximab infusions. You can only get “the Ritux” once a week for four consecutive weeks, no sooner than every six months. The goal was for this drug to kill his B cells off, in hopes that he would no longer have the antibody that is destroying his cells. It’s a little dangerous because the B cells hold our immunities. So he is very susceptible to infections, and fatal pneumonias with those cells gone. His counts are all very low. He is considered to be anemic, neutropenic, with thrombocytopenia. Basically meaning his hemoglobin is low, along with little to no platelets or neutrophils. I will explain the numbers a little better below, along with my thoughts.
It’s super awesome that his Dad has been able to come to these outpatient visits. It would be so hard to get through these days without Chris, as Mike and I have Harrison to care for who has his own set of needs. We can’t bring a 17 month old to the clinic all day with nothing to do while we are in isolation. Also, Lucas wakes up at odd times, and needs a bed buddy. He loves having his Daddy with him. It also makes me feel good that they have each other, as I do co-sleep and nurse Harrison around the clock.
This time around Lucas was in an infusion chair from 9:00am-1pm. This was a few hours shorter than last weeks infusion because he tolerated the Rituximab nicely. His actual infusion would have only taken 2 hours and exactly 47 minutes if everything went according to plan. However, sometimes appointments run late, and I have no control over that. This time was cooler though because we were able to leave Boston around 2 or so, before the 4 o’clock traffic. Either that, or we’d have to stay until after 7pm to ensure that our ride home is just over an hour. Three hour rides home with bumper to bumper traffic is just not an option for these boys.
I’m so glad that Lucas hasn’t had any severe allergic reactions to the Ritux because a lot of people do. It can do damage to the kidneys, and cause some serious problems. It’s mainly used to treat lymphoma, by killing off cancer cells. It’s a really strong drug. When I say I know too much, it’s a blessing and a curse. Luckily the Doc’s feel comfortable talking to me as if I was one of their peers. Then I go process things and write out my updates. After that’s done I allow myself to cry or have feelings about the situation. YES, I cry. Sometimes I cry quite a bit. I’m scared, but I know I have to take it all in first. That way I can remember what I need to. It’s not easy at all.
I know that we need to take care of ourselves before we can take care of others, but my son has to come first. I love to sing, act, and write music. I also enjoy doing graphic design projects for my friends, and others. The arts have taken a major backseat due to all of the medical stuff. You can catch glimpses here and there on my Youtube channel, or my Instagram. That stuff is just not as important to me as my health is at the moment. I am now a pre-diabetic, and my cholesterol is SKY high. So I have to make some serious changes. What do I do to care for myself you may be asking? Well I enjoy yoga, and I’ve been having Lucas take pics for me lately, and some of them are good, while others are just not flattering. How attractive is this pose? (Laughing out loud)
I try to laugh as much as possible, and I also like to play The Sims 4, and make gamer mom videos and post them to my other youtube channel. I’m a pretty big tech nerd. I love my computer. I hate to read, however I have so much reading to get done. Master of procrastination. That should be my title. Obviously. I get shit done, but I’m also real lazy. I just wanna cuddle up and snuggle all day. Today has definitely been one of those days. Snuggles with Harrison have been proven to naturally raise my oxytocin levels.
That adorable photo was taken by my husband Mike, who was watching Harrison at The Boston House while Chris & I were with Lucas at The Jimmy Fund clinic. Which brings me back to my frustrated state that made me want to write this blog. The plan seemed to change. I thought we were going to stop the drug completely when his B cells were gone. However now the doctors feel that he would have a longer lasting result if we take him back for a third, and maybe even fourth dose. This doesn’t sit right with me. My mom gut is on edge. I’m not sure which way to sway. The transplant doctor would like to see his numbers rise before this medication is stopped. However his blood counts have dropped just from Tuesday to Friday. Mind you on Wednesday he got a bigger dose of NPlate than he had been getting, which produces platelets. Well, it was producing them before he got this nasty antibody from his last blood transfusion on Valentine’s Day.
TUESDAY: Hemoglobin 11.2, WBC 2.3, ANC 210, Platelets 7
FRIDAY: Hemoglobin 9.6, WBC 1.7, ANC 30, Platelets 6
He is seriously fighting inside like a champion, and he deserves to win. This worries me because the Rituximab can cause anemia in patients, although it’s very rare. Well, RARE things happen to Lucas. He is that 1%. So I feel it’s important to be cautious. The B cells are gone. Why would we put more of the medication into him knowing that it could cause his B cells to be gone forever. If that happens (and it can happen anyways, even with two doses) then he could need another transplant. I asked, “okay well what if we do four doses and then it still doesn’t work”. I didn’t get an answer. That’s a BIG question because that would be a HUGE problem. The other doctor stated that she wants to see the blood counts come up before stopping the drug. That doesn’t make sense to me because she’s only got two weeks left. They were supposed to see reactions right away, now they say it can take time.
At times I feel like Lucas is a guinea pig, and that’s exactly what we don’t want for him. With that said, he has the best doctors in the world right? I guess I have to look into that. Maybe there’s a second opinion somewhere. The Facebook group for Evans Syndrome has less than 1500 people in it I think. It’s a pretty rare disease, and to get it after a transplant is even more rare I guess.
Unfortunately for now, the second wish trip is on hold until he can safely have a port surgically placed into his chest. That can only happen when we can get those platelets up, and for his blood to stop this self destruction process. We remain in an even more strict isolation at home due to the B cells being the cells that hold immunity to things. He has no immunity to anything. We are scared, but we have trust in our team. We have doubts for sure, but their explanations make sense on one hand. On the other hand, what do we know? We are just parents, right?
As for me, I just know too much. I really hope that I’m wrong, and that he can have the next two doses of this drug, and his numbers improve. I’m just worried that we will lose him before he gets his trip. Or that the drug will do more harm than good. I fear the worst, always have. I don’t let it cripple me with anxiety, but I’m a realist. Optimistically speaking, this whole new protocol could absolutely work. I sure hope it does. Prove me wrong, PLEASE. I hate being right.