I know many people have been asking whats happening, and I am sorry its taken me so long to follow up. We checked out of the hospital for our first round of inpatient chemo on the 15th of April. This is 1 of 3 inpatient rounds we need. The other 3 rounds are outpatient which we had completed the first in the hospital due to his surgery. He has now completed 2 of 6 chemo rounds. In general he tolerated the treatment well, but because it was such an intense treatment with some very nasty drugs, we found out that we would need to administer a shot at home for 7-10 days following treatment in order to boost his white blood cell count. They told us the shot was no big deal, similar to that of diabetic, and we needed to choose someone who would be trained at the hospital. Unfortunately the shot was anything but easy.
Noah was so upset about this shot. He even suggested that he stay in the hospital an extra week just so they could administer the drug via his port. He is so exhausted of needles, pricks and pokes, and has created a fear in his head about the pain of a shot. I tried to reassure him that he has been through so much worse, but it was not worth trying to rationalize. He was hysterical. Absolutely out of control
We elected my dad to administer the shot. He figured he has given over 100,000 shots in peoples mouths and had no problem giving one to Noah. My poor dad.....boy was he wrong. This was not like any shot given before. The first one was given in the hospital before we could check out. They decided they would find a quiet small room with no distractions to give him the shot because he was so defiant and angry. The child-life specialist (a professional in the hospital there just to deal with the emotions of the child and help them through different challenges) was there, along with my dad, Adam, and a few nurses. He was absolutely hysterical. Screaming, crying, kicking, hitting, avoiding at any cost. The added stress was too much. We had the area numb, and when we he finally agreed to it, he screamed louder than one could imagine the entire time the medicine went in and then cried for 15 minutes after. We didn't know how we were going to do this for another week.
When we got home, the aftermath of the chemo set in a little. He was pretty tired and nauseous for about 4-5 days. He mostly laid on the couch and really didn't eat a thing. It was a Friday when we left the hospital and by Wednesday he was doing pretty well. The shot however was causing severe stress in the house. We needed to give it to him in the late afternoon daily, and he would hide, play games, and scream for about an hour until he would finally agree to sit in my lap and get the shot, which took another 30 min. I think the only reason he actually agreed to it was because I told him he absolutely had to have it within 24 hours of the last dose, and as much as he hated it, he believed it wouldn't work unless he got it in the appropriate timeframe.
The stress was too much though and by Tuesday we went to Plan B. We arranged for him to get the shot at our pediatricians office and though it wasn't perfect, it was much much better. By the second time he did it there, he even admitted it wasn't too bad, though he only admitted it once.
On Wednesday, he was doing so well, I took him to Whole Foods on his electric scooter, and was so happy he was doing better. But by 5pm his back pain returned and I knew we'd be headed to the hospital eventually. Fever surfaced around 8pm and we were in the ER by 9:15. Just like last time, his blood cell count was extremely low (this time it was 30 and normal counts are 1500-8000). His fever was swinging between 101-104 and when we got to the ER, it was jam packed. I tried to isolate him the best I could and waited to get him admitted. Eventually we made our way to the front and as soon as they knew he was neutropenic with fever they brought us into a special room just for this purpose. It is called a positive airflow room and doesn't allow germs to circulate from other places and vents. He had to have his port accessed to draw blood and start antibiotics. Pretty routine at this point. And with the numbing cream, he handles it beautifully. By midnight, they transferred us to our room on the 5th floor (our new home away from home) and we earned ourselves a few days in the hospital. The ticket to exiting is an ANC count above 700 and no fever for 24 hours. This took 48 hours.
We checked out just as Passover was beginning, and in a way felt that we had our own exodus from slavery. He had already put in requests for a special Passover Seder at my mother in laws house and we were able to celebrate the next day. The kids each requested their special foods, and Noah insisted we do it at her house becaues he loves the way she decorates the table. One can imagine that she went all out...not a detail missed, and we were so thankful and happy that we were altogether and had him home.
Since Saturday the 23rd, he has been doing amazing. Feeling really well, and getting strong for his next round of chemo on May 2. On April 27, he had his first follow up MRI since chemo had started, and we received really wonderful news. The spinal tumor is almost completely gone, and though the brain tumor has only shrunk ever so slightly, it is now full of holes as if it were swiss cheese which means the chemo is working. We are seriously overjoyed and celebrating. He has been able to swim, and hang out in the jacuzzi with family, and feel normal for a little bit. It makes all of the stress and agony feel palatable. We feel so positive that we will beat this and move on from this journey feeling stronger and more appreciate of our lives. We are even going away to Half Moon Bay for the evening on Saturday to celebrate and have a little break before chemo starts on Monday.
