Chemo/Side Effects: Joey & leukemia, Part 5
Part 4 Part 3 Part 2 Diagnosis
Day 21: 9/14/2010 So there we were – heart problems seemed to have subsided, but then we had new issues to face. Joey’s arms and legs were starting to quiver, and he was experiencing diarrhea again. The body shakes were a side effect of chemo. They do a stool study, and all is good. He was still severely neutropenic, and his iron was dropping. We were on day 3 of our break from chemo, but I learned the reason for that. His body was going to crash now, and he needed the time to start recovery. Anything else would kill him. It is a fine science, and they definitely skirt the lines.
Day 22: He was having real difficulty with his arms. He couldn’t seem to pick up his latest sensory object in his right arm at all, so he had to use his left. Joe also couldn’t straighten his pinky or ring finger. Jaw pain was becoming a problem, and I realized the side effect of peripheral neuropathy had started to rear its ugly head. We also got the next day test on his diarrhea, and this poor kid had a Rotavirus.
On the bright side, his white blood cells were at .6, just a breath above the severe rate. Dr. Levine was back from vacation and was going to check on a glutamine study. The study was for adults, but glutamine was being proven to reduce the side effects of mouth sores and peripheral neuropathy.
Joe could barely get out of bed, and with rotavirus, this is a concern. He had no control over his bowels at all, and I had to change his sheets constantly. Yes – ME! I didn’t get paid the nurse rate, but this went with the territory of being the Mom. Every room was full, and the nurses were busy.
Day 23: The shit really hit the fan … and the sheets and all over him. I did not bother to try and get him out of bed, because it was too much trouble and torture. He could not make it to the bathroom by the time you got the pole contraption, all the wires, and fucking tubes in a way that you could try and move him; it would be too late. It was nasty. The CDC had come to the room to investigate how this could have happened in this special pressure room.
We certainly hadn’t given it to him because none of us had it. Since he hadn’t left the room, it meant that it had been brought into the room by medical personnel. It could have come from somebody in the cafeteria who makes the trays of food. There was never a conclusion, but we had to deal with the circumstances.
Good News is we can give the glutamine. He could not be in the study, but they got him a prescription within the hospital and put him on a dose for his size. The Doc had pulled some strings!
The Good News/Bad News Keeps Coming
Day 24: We got the news that he could possibly go home on the following Sunday. It would only be for one night because he had to be back for a different cycle on Monday. So again, that good news only lasted for a minute. The rotavirus had gotten worse, but his blood counts were rising. His WBC was .9, and they said he could go for a walk outside the room as long as he wore a mask.
That did not happen. We were not walking around with the possibility of diarrhea coming any second. Unfortunately, Joey doesn’t quite have the energy, and he is struggling to even walk around his room. He would try to eat, but it was difficult. He had lost a decent amount of weight.
Day 25: The chemo, vincristine, was back, but he only needed an IV with one shot. Unfortunately, it was the chemo with the worst side effects. Joe was already struggling to walk, and this particular chemo caused the peripheral neuropathy and perpetuated the weakness in the arms and legs. On the bright side, his WBC has shot up to 1.2, and his iron and platelets were great!
Not only that but after five “shitty” days, the rotavirus had started to improve. We started to see the light at the end of the tunnel. However, my little boy did not want to get out of bed. I tried to give him some reassurance but did not push it. Joey was clearly petrified. I knew it was in his best interest, but I could see the fear. I could give him one more day to recover from all this crap and then I would push him to get out of his room. Every day was counting. For each day that he laid in bed, it would take him even longer to get back on his feet.
Working Through the Chemo & Side Effects
Day 26: Joe had woken up stressing that I was going to make him get up. This is the way Joey’s head worked and still works. He goes to bed with a thought; then he wakes up with that thought. In this case, he went to bed with dread and woke up with fear. He was very shaky on his legs and yelled out in pain when he would try to put his feet on the floor. I could not do it.
We waited for a PT to come and help us. He would get angry at me, but he wouldn’t at somebody else. The PT brought a walker, and he had to hold on with both hands to take one step. The struggles he had already been through having Down syndrome and learning how to walk weren’t bad enough – now this poor kid had to go through this again. His body was beaten.
Day 27: More PT and baby steps were taken. She brings a small stair, but he wants nothing to do with it. He did use the walker but stayed in the room.
Day 28: Joe told us his left foot and toes feel funny, but his right foot was ok. He had a wobbly walk, but he did it. My boy is still holding on to a walker, but moving and makes it into the hallway. We are waiting for Daddy to come so he can see Joe outside the room and taking steps.
That night, I had finally left the hospital. I had gone to take Bella and her friends out to dinner to celebrate her 11th birthday. That was the second time in that month that I paid much attention to my girl, and it was a welcome respite. Freddy had spent the night at the hospital. I got to have a glass of wine with my friends and see my daughter laugh. Gosh, how I needed that! I may have even slept that night. I had not slept in my bed since I went on vacation at the beginning of August.
(When we told Bella that Joey had leukemia and we would be in the hospital for a long time, the first question she asked was “ what about my birthday?” She told me recently that she still feels guilty that was her reaction, but I explained to her she was only a child herself. She didn’t get it either. I didn’t even remember that, but she did and was still holding onto that 8 years later.)
We had spent the next few days with Joe getting PT/ recovering and getting better on his feet before we would go home. The side effects of the chemo were dissipating, and the light at the end of this particular tunnel was getting brighter and brighter.
Day 32: 9/26/ 2010 They sent us home! – Yay!
On the way home, Christine stopped at a St. Baldrick’s fundraiser and shaved her head for her little brother. A strange coincidence that the first time Kristine Derenzis was doing this, and it happens to be the same day my Joe would go home. I don’t remember if Christine had told us she was going to do it, but what a fantastic gesture of love that was.
We celebrated Bella’s birthday again…
and Joe got to sleep in his own bed for the first time since before vacation. For one day, but we cherished it – not knowing the worst was about to come.
(notice Joe was always wearing his Jets shirt!? That doesn’t happen anymore.)
Much Love and Prayers,
Sandy
#enlighten #empower #inspire #educate #BeKind #cancersucks
