Huge Week

Neutripenic.  This is a word that one would never need to know unless you are in the medical field, or someone dealing with cancer.  We of course find ourselves in the latter group, and neutripenic was exactly what we were trying to overcome last week.  Neutripenia is an extremely low level of neutrophils in your blood, which are a type of white blood cells that fight off infections, especially bacteria.  Since the neutrophils are manufactured in the bone marrow, and the chemo destroys those cells,  people receiving chemo are at an extremely high risk of infection when they become nuetripenic, which happens mid-cyle of Noah's chemo regime.  This was most likely the cause of his fever which landed him in the hospital for a few days.

When we checked out, we were told he really shouldn't even go outside until his neutrophil count or more specifically his ANC goes above 1000.  This meant masks to and from the car, and minimum contact with people.  When we checked into the hospital he was around 100, so we were expecting a long wait.  But, its just remarkable how the body recovers.  Within a day or so of checking out of the hospital, his energy and appetite were better and we could just tell his numbers must have climbed dramatically.  Which, or course, was confirmed by a blood test.  He was back near 1000 within a day.

We were so happy, and it couldn't have come at a better time.  His very closest friend who is not even 10 yrs. old yet, and lives in Southern California, got on a plane all by himself to come and stay with us for 2 nights.  It was the most special expereince we've had in a long time.  It was as if Noah had forgotten he was sick.  They played from the minute they woke up until dark.  We were able to take them out for a few meals, and he even came to the blood draw which was a huge boost for Noah.  We had ordered an electric scooter that you sit on and is not in anyway orthopedic.  In fact, it is made by Razor and is "super cool" according to our 6 year old.  This way, Noah he can join us or other friends on the bike trail.  It arrived just in time for his friend's visit, and it couldn't have worked out better.  It was amazing.  He was able to ride to our local center where we had bagels and tons of laughs.  It gave him mobility and freedom.  Together with his friend and newfound mobility, Noah seemed to forget about his problems for a little bit and just be 10 years old again.  We are so thankful and appreicative his friend came, and we count every great day, becuase there are so many that are so difficult.

The evening his friend left, his hair was really starting to fall out.  It had been coming out little by little all week, but by Friday it didn't just look thinner, he was getting some bald spots.  He has been so sensitive about his hair that he didn't even want to shower all week becuase he was worried a little water even getting near his scalp would cause his hair to fall out more.  We talked to him about shaving his head, but he had been adamant that he didn't want to.  After going to bed that evening, he he came to our room complaining of the discomfort from all of the hair on his pillow.  I was downstairs, and I came upstairs to find one of the most heartbreaking things I had seen yet.  He was sitting in a chair in our bathroom with Adam and he was looking in a mirror and pulling his hair out in chunks.  Initially, they tried to shave it, but it was more uncomfortable that just pulling it apparantly.  So there he sat, calmly, and without too much emotion, pulling out strands of his hair.  Chunk by chunk.  I couldn't even stay in there. It was too heart wrenching. He was extremely brave and strong, and I will never forget how beautiful he looks without hair.

For him, losing his hair has been a huge blow.  In fact he hasn't taken off a hat since its been gone.  He sleeps in it round the clock, and wouldn't even allow the doctors to take a look at his head.  He said he really hates the way he looks and feels so ashamed.    We have enlisted help from a lot of staff at the hospital, and we are hoping that it is something he will feel better about very soon.  Hair loss is a constant reminder of cancer, and it is the first thing someone thinks of when they see it, so we totally empathize and understand how difficult it is.  We try our best to remind him how brave, strong, and handsome he is, and we know he will adjust eventually.

Round 2 of chemo started on Sunday.   It is 5 day cyle of a different concoction of chemo than last time.  It is administered in the hospital becuase of the possible side effects and it necessitates a constant heavy flow of IV fluid to flush it out of the system.  So we checked in to our home away from home and will be there through Friday.  This time it has been so much better than the first.  We were able to organize a schedule and all 4 grandparents, Adam, and I take shifts round the clock so he is never alone.  He has full time attention and I think he kind of likes that.  He plays cards, backgammon, chess, and monopoly.  The hospital has also provided some incredible activities.  The have volunteers come and do a variety of things at his bedside.  In just 2 days he has built a very intricate lego robot with someone from Playwell Technologies, he played chess with a retiree who visits the hospital once in a while, and he keeps a running tab of his wins of cards with his grandparents.

We feel fortunate that so far he has tolerated the chemo pretty well.  Because he was so nauseous last time, they suggested we try a new drug this time.  When I picked it up at the pharmacy,  I found out it costs $1500.00 for the 3 pill dose.  Thank goodness our insurance covered it, but I would pay for it if I had to.  It has been an absolute miracle so far.  No nausea or throwing up, and in general he has really been feeling good considering.

We also had some wonderful news this evening which we are celebrating.  His particular type of cancer is partially detected with a certain blood count call AFP.  A healthy person has an AFP of less than 10ng/ML.  When Noah was first tested, his was 1400ng/ML.  Just to give an idea, a liver cancer patient with a very high AFP is around 550ng/ML, so his was extremely high.  They retested it when we came into the hospital and the results were quite positive.  His is now down to 135ng/ML so we can assume the treatment is working.  We will know even more before his next round when he has another MRI.

Once again, we are so fortunate and feel so loved by our friends, family, and greater community.  We are thankful for everyones well wishes, meals, gifts, thoughts, playdates, rides, and even trees planted in Israel.  Please know we receive it all, and so appreciate everything, and I hope to be able to thank each of you individually one day.

Some Highlights from the week:

Math time with Grandpa Alan

Backgammon with Saba in the hospital

Backgammon Professional

Simon visits the hospital and perfoms magic tricks

Friend Noah and Noah Barme at the blood draw

Hospital food?  Forget it mom.  I want sushi!!

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!!