This picture is from about 9-10 months ago. It’s the aftermath of one of many scary nights for Adler and for us.
Imagine if you will a 6 year old boy who had just been out to dinner with his family at a local restaurant for his Grandpa’s birthday. He ate good that night and we were happy for that. His appetite had seemed to be returning some since he’d been off treatment for a few months. He talked up a storm at dinner too and was pretty worn out on the way home. He seemed very quiet once we got into the house and he stripped off his pants as usual. He sat on the couch in his corner spot on his heating pad and said “I am so tired, like really tired”. I looked at him and he seemed pale and I felt his head and said “hmmm, you feel a little warm but maybe you were just excited at dinner” We got him ready for bed and as I held the book and sat on the floor to read to him he had this face. It was a face of fear and his eyes looked full with tears and he grew whiter by the second. I grabbed his bucked close to the bed and said “are you going to be sick?” “I am fine” he replied but sure enough within minutes I was sitting him up and he was vomiting. Over and over it came. He was shaking and crying and saying “oh no mommy, oh no, am I going to the hospital?” I knew we were but I didn’t answer yes, just kept holding him. His father quickly switched out the bucket to a bowl and I was wiping tears and his mouth as he kept vomiting.
About a month before this Adler shared with me his fear of death. We never kept anything from him. He knew what he had as soon as we found out. We felt it best to tell him everything and give him the knowledge of his diseases to use as ammunition in his fight. He needed to know what he was up against. We kept it age appropriate of course but medical terms and the necessary things were talked about with him in detail and he used it as a weapon. He became as he quoted “I am a living weapon against cancer”. He wasn’t going to let it take him. But that didn’t mean he wasn’t afraid. We had many talks about his mortality. I felt if he asked, I should tell him the truth. I spoke kindly and gently and not with out many tears myself. They usually happened at night with just he and I holding each other on the couch or the floor. I would sit cross legged and he would face me and wrap his little legs around me and we would talk quietly together. Or they happened as I laid with him in bed after I read poetry to him before he would go to sleep. Night time seems to be when the mind is restless for him and for me.
So that night as he lay against me in my arms as I held him while he vomited repeatedly and he cried his little breathless voice said shaking “I don’t want to die. Mommy, I don’t want to die.” And I said “oh honey you aren’t going to, you are just sick, you have the flu or something” But honestly, I didn’t know. At that time we weren’t super clear on his adrenal issues and he very well could be in critical condition if he were to go into adrenal shock which can happen from excessive vomiting because his body is under stress and he needs a stress dose of steroids and if he cannot keep those down, he requires a shot and immediate medical attention. But the fact that he still had his port in I called his oncologist and she said she would admit him and he could be treated quicker that way. I held the phone to my ear with my shoulder and held him while I called here and my husband washed out bowl number 3 and then we switched so I could pack a bag. Why I ever unpacked our hospital bug out bag, I will never know. That thing is always packed. Its contents are one change of clothes for all of us with extra underwear and socks. Essential items like tooth brushes, toothpaste, deodorant, shampoo, soap, medications for us for at least 3 days, a hair brush, protein bars and granola bars, tread socks for Adler and phone and Ipad chargers, a stuffed animal, crayons and coloring book and a couple super hero action figures just in case. It stayed packed for well over a year.
We were admitted and stayed three days in the hospital for just a virus. A virus that most normal kids could fight off but Adler couldn’t. And he’s stronger now but still requires medical attention often for just “being sick”.
This was normal for us. This was how we lived and still do to some extent. Adler, when on treatment, would get fevers with every chemo cycle. Which meant once a month at least he would require an ER run because with a temp of 100.4 or higher and due to having a port, he had to be seen immediately. We went to the ER over 12 times for that. He would receive a stress dose of steroids with antibiotics to cover a variety of things and labs would be drawn which weren’t always easy even with his port accessed because well, it just wasn’t always. So, I would call and they would have the on call doc call me back and by that time I would have numbed his port with emla cream and covered it with press n seal and his little feverish body would be bright red and his checks flushed and his head throbbing. This was how his body reacted to chemo after it had been off of it for two weeks in between the 4 week cycles. It sucked big time.
So that was during treatment. And that doesn’t count the times he was actually sick with a virus or something. Because it happened ALL THE TIME. Even now. He’s sick today actually. He has a cold. He gets one every month I swear. It’s so sad. He’s immune suppressed because he is on chronic steroids for his adrenal insufficiency. So his body can’t fight anything off. It was bad enough on chemo but not much has changed in the way of his body’s immunity. It’s just not as “risky” now since he’s not in treatment. But, if he gets too sick and cannot keep his meds down, yea, it’s not good. I carry the shot with me all the time just in case. Adrenal crisis is no joke and can be fatal if not treated in a timely manner. So yea, I am always on guard. Always anxious about germs and yes, I carry tiny Lysol cans with me and hand sanitizers are many and Germ X wipes come out in stores, restaurants, movie theaters and so on. Even then, he still gets sick. And please don’t tell me his immune system just needs to build up to these illnesses because that won’t happen for him. Ever. Sick for Adler isn’t sick like a normal child. It is risky and scary and he could die. Flat out. He could. (If not treated immediately or correctly.) Cancer isn’t even the main concern at the moment it’s his suppressed immune system due to his steroid dependency because his adrenal glands do not work. We don’t know if they will ever pick back up either. And chronic steroid usage is not good. It causes so many more health issues. Adler has inoperable brain cancer, hydrocephalus and adrenal insufficiency he could add diabetes, high blood pressure, obesity, or heart issues could be added to that list too. It’s not fun. It’s unfair and our plate is full. FULL!!! ! And yes, I overreact often and jump the gun on taking him to the doctor too soon but I don’t know any different with him. I am doing what I feel is right and necessary to keep him well. Or as well as I can. That’s why I carry a sheet on his condition to give to medical attendees if necessary and I have met with paramedics in our area and discussed how to treat him if he requires it. Because if I have to administer that shot, I have to call 911 or get him to the ER as fast as I can. And what if it happens at school or at a friends house or something? There are a lot of what if’s when it comes to Adler. We could be in the car headed to Chicago to Lurie Children’s Hospital where his team of doctors are for a headache or to the local ER for vomiting. It’s a toss up. Either way when Adler gets sick it could potentially be a big deal.
So to see this picture is a reminder of what was and will be when Adler gets sick. It is a continuous battle that he faces. He may look wonderfully healthy with his beautiful curls all grown back in now since he lost his hair twice during treatment. And he’s gained weight too. He was so skinny and could barely eat for so long. His color looks good with pink cheeks and red lips. His eyes sparkle more behind his Ray Ban glasses and he smiles just as much now as he did. But he is still sick. He still has three potentially life threatening illnesses. One is stable, the other is maintained with his shunt and the other with medication but they are forever. Chronic illness lives in him and with us. And some days it makes me sad. Like today.
We cherish all the good times. We focus on the happy and the now from one day to the next because like this picture it could change in a matter of hours. We never know when or how bad it could be. Or when the next MRI will show some change in his tumors, or if that headache that was a 6 on the pain scale is just from a virus or a shunt malfunction or from tumor growth. And we pray for the pain to always stay away since he suffered from that for so long and it’s seemed to all but disappear. He is a warrior. A true warrior and he fought well and won his first battle. But the war continues and we fight daily. I fight daily with him as his mother and caregiver hoping that my spirit and soul can maintain the pace they need to and not wave the white flag. No defeating here. Even if it’s all become sadly typical and routine. Sick is our normal here. It just is what it is. One day at a time with the bug out bag packed and the thermometer ready!