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!!