Ups and Downs

This weekend brought a lot of new lessons and emotions to contend with.  Noah's energy over the weekend wasn't the greatest.   He really didn't seem motivated to do anything but watch t.v., and his color was quite pale.  I figured that some days were just going to be better than others, and we just did what we could to make him comfortable. He was complaining of some pain on the sides of his back near his incision site, and we were hoping it was just his back healing and nothing serious. It did cross my mind that maybe the chemo wasn't working, but I tried to put that out of my head as quickly as possible.

On Sunday, he was really quite pale and had super low energy, so our dear friend came by to take a look at him.  She thought maybe we would need a blood or platelet transfusion as he seemed quite anemic.  (Apparently, this is par for the course, and we should expect to have a transfusion  at some point in the future. ) Since we were having a blood test in the morning, we decided to just wait out the night instead of dealing with the E.R. and everything else that comes along with that.  By 10 p.m. however, he spiked a fever.  Any fever over 100°F earns us a trip to the ER, so we called the oncology resident at the hospital who said to wait an hour, and if it was still over 100°F we needed to bring him in.  He went to sleep and we checked on him an hour later, and sure enough it was off to the ER.  Under any circumstances, taking a child to the ER is stressful on everyone.  But this was close to catastrophic.  We woke him up and told him we needed to go.  He went absolutely crazy.  Screaming, crying, shouting obscenities, and that was just to get him in the car.  Adam insisted that he take him, and somehow through all of the arguing, he got him into the car.  I assumed that I would hear from them after they were seen.  Within 1 minute of driving out of the driveway however, I got the call.  He was hysterical, screaming, crying, and once again blaming me for making him go.  It takes such an emotional toll on everyone, and I just have to keep in mind that he is just terribly scared and justifiably so.

We talked the entire way to the hospital.  He was most upset that they would have to take blood and access his port.  He did not want any more pain.  Of course, no one wants him to have anymore pain.  I talked to him about the fact that each time he has had to do a blood draw, he gets so worked up and upset that the fear is worse than the actual blood draw.  We had all of the right tools in place to minimize the pain, and if he really thought about it, the actual needle wasn't so bad.  He said he didn't care.  I suggested that he try to stay calm and breathe....just once and see what happens.  He argued.  I said, just try it my way one time.  Adam said that when they got there, they numbed him even more and assured him he wouln't feel a thing.  Sure enough, he breathed through it and said it didn't hurt.  I just hope he will remember that next time.

By 4am, the we were moved to our new home away from the home, the 5th floor oncology at Childrens Hospital.  They started him on an antibiotic drip and soon enough the fever was gone.  However, they don't allow you to leave until you have at least 24 hours fever free.  So the waiting game began.  We stayed all of Monday and by Tuesday around noon, we were able to go home.  It was sort of a strange feeling, but going back to the oncology floor felt kind of comforting to both Adam and I.  We sort of knew the routine, some of the nurses, what to expect, and having him there cared for by professionals was strangely soothing.  We of course were thrilled to go home, acutely aware that we would be headed back there on Sunday for a week of chemo.

The other issue we are contending with is his hair loss.  On Saturday he noticed his hair was starting to fall out.  This has been at the forefront of his mind the entire time.  He mentioned to my mom that he noticed he was losing some of his hair, but he really kept it to himself.  Hair contributes to one's identity so much, and the thought of losing all of it without any control is terrifying.  In fact, since its begun to fall out, he hasn't wanted to wash it or even get it wet.  He is constantly asking us to wipe the hair off his neck and we are finding hair everywhere.  I suggested to him numerous times that he could shave it off so that he was in control of it, but he has been adamant that he doesn't want to do that.  As soon as we got home from the hospital on Tuesday, our amazing hairdresser, Long, came to the house to cut his wig on his head.  Most of the nurses told me it would be unlikely he would wear it, but we bought one anyway, and I hope it makes him feel more secure.  Long gave the wig a perfect cut, and literally you can't tell its not his hair.  It did put quite a smile on his face when he saw it.  He has yet to actually wear it though.

We learned quite a few lessons in the last few days.  First of all, it is important to pack a bag of clothing for both us and him that is ready to go in case of an emergency.  It needs to have overnight clothing, a phone charger, tooth brush, and some chocolate bars for the blood draw.  We also learned that we need to anticipate the unexpected and role play some various situations with him in the event they do occur in the future.  He likes to be involved and informed of every detail, and hates surprises so anything we can do to minimize the surprise will hopefully give all of us a better experience.

Some Highlights from the week:

We were able to have Shabbat dinner on Friday with our very close friends.  There are about 11 kids between 4 families and the kids are as close as siblings/cousins.

While we were in the hospital for the fever, a man from the Lawrence Hall of Science came and worked with Noah on magnets and electrons and the science and mechanics of airplanes.  They built a cylidrical airplane out of paper and Noah loved every single minute.  He was so curious about every detail, and could barely let the guy leave.

He really didn't want me taking this photo, but this is him with the wig on.  Looks perfect!!

One of the many wonderful books we have been sent and he is enjoying!!  Thank you to everyone supporting him!!  All of the support brings a huge smile to him and us!!