Side-effects

Day 17: I can't believe it's the last day of May. On May 1st Annie cleared out her locker at school and every day since she has been at the hospital.  It's easy to lose track of time.  Today her WBC went up to 0.6 and her ANC to 0.3.  We are very grateful for the progress.

They have also begun to wean her off of some of the IV medications.  She has had as many as five pumps going for weeks but today she was down to two and they took her off the pumps all together for four hours.  Imagine, for over 25 days she has been attached to a pole and being free of that for those hours was very liberating.

Today I received an email from the Be the Match bone marrow registry where I am registered.  It contained a copy of a letter a mother wrote to the college football player who was the donor for her one-year-old daughter.  She writes, "Your blood is clearly running through my daughter's veins.  She LOVES football...."

We have often joked with Annie about what it will be like to have a 30-year-old European man's immune system running through her.  And lately we have noticed some weird things going on.  For the past three days she has had what appears to be a mustache under her nose as seen above.  Two days ago she also started sporting a bow tie and today she also was talking with a French accent for a while.  Annie's a character under normal circumstances but one does wonder.

Solidarity Forever

Day 16: Annie's whites crept up again today to 0.3 and her ANC to 0.2.  She also kept eating her salmon, garlic break and green smoothie and I guess the doctors were so bedazzled by her eating plan that there are rumors she might get off TPN soon.  I just read in the news that there is a TPN shortage so this could be a helpful thing.  Also read today about new MRSA protocols that don't require everyone to where yellow gowns and masks and purple gloves when they come in the room like we do now.  Funny how I pay attention to stories I could have cared less about before.

Anyways here is this week's Throwback Thursday.  This is when Annie was discharged to home isolation after her last transplant.  As long as Annie had to wear a hat so did Katherine.  I'm pretty sure Katherine draws the line at shaving her hair but she has planned to spend the weekend studying for exams at the hospital.  We figure they'll have the whole misery loves company thing going.

Salmon Alert

Day 15: We were having some confusion about just which white cell information we were getting so now we have a printed set of her blood tests and can be more exact. Her WBC (white blood count) has been 0.1 for a few days and went to 0.2 today.  Her ANC, a subset of the white cells, has been 0.1 and was again today.  The doctors say this is what they would expect to see.

The first stages of eating were, "whatever she feels like." Today that switched to, "high protein foods." We aim to please, so move over noodle soup and popsicles, hello Greek yogurt and salmon.
Well and garlic bread.  Those are the new A-list foods in Annie's life (green smoothies are still hanging in there also).  It seems no sooner do I stock up on one food type that she switches to the next.  Anyways if they sell out of salmon at your favorite spot you know who to blame.

Nail-biter

Day 14:  Each phase of this process is challenging in its own way.  Now we anxiously wait for the results of her blood test to be reported each day.  We scan the faces of the nurses for clues and try to draw conclusions from what time the doctor arrives.

We got a few more details today.  Her ANC (absolute neutrophil count) which is the measure of white cells was 0.3 yesterday and 0.1 today.  While we were told they could go up and down, when you are this close to the edge a step closer to the edge is unsettling.  The doctor isn't ready to say it's engraftment however she has a positive outlook.

Time to practice writing those gratitudes to shut out the anxieties.  I am grateful she has the best care available.  I am grateful we are well supported.  I am grateful the doctor has a positive outlook.  I am grateful we aren't facing any big known problems at the moment.  I am grateful....

Soaring

Day 13:  This video is of Annie flying paper airplanes through an opening in the privacy curtain pulled across her room.  Annie's grandfather Chuck, who passed away last fall, flew a P-51 Mustang in WWII.  This Memorial Day we are celebrating his service and that of all the others whose sacrifices to protect us and keep peace, enabled our society to have the stability to achieve things like the medical marvels from which Annie benefits.

Therefore we are especially delighted to report that on this Memorial Day the doctor reported the first white blood cell present in Annie's blood sample.  This is hopefully the first sign of the engraphment for which we are all wishing.

When the lab gets a blood sample they count the different types of cells floating in the plasma (reds, whites and platelets).  This is how you get a blood count.  Annie gets transfusions for reds and platelets but whites you make or do without, thus her isolation.  We'll know over the week if this trend continues.  It's possible that she'll have only one or zero white cells present in tomorrow's sample as there are a relatively small number of them at first.  What we hope to see is increasing numbers of them as the week progresses.

It's going to be a nerve-wracking few days but we'll draw courage and inspiration from all the brave people we honor today.

Tom

Day 12: I know this is supposed to be a blog keeping friends and family updated on Annie's progress but she's kind of doing the same stuff every day for the moment.  She eats her noodle soup, sucks on her spirometer, tries to dodge the hospital teacher....  Now, on the other hand, something funny is going on with Tom.  (Luckily he doesn't read this blog so I can really get into it.)

I've read that 70% of marriages don't survive the serious illness of a child.  We managed through the first round but now I'm not sure what to think.  First it was the whole meditating thing but it sounded kind of like a good idea.  Then there was the sleeping on benches with rodents sniffing around - that's a little more out there.  But now I get this picture from him!  Like what is that?  Is he trying to match the bug balloon in Annie's room?

I'm only off-duty a few hours and he starts shooting me pictures of a bike he bought, this spandex number (he also got one in orange!) and then the doorbell rings and some box of clothes from a men's shop arrives at our house.  I call to tell him and he says, "Oh good, I've been waiting for those cargo shorts."  Cargo shorts?  He has worn the same basic beige shorts for 23 years.  Did he pick something up at the hospital?  Did the stress, not contained by the meditating, bring out a rampant mid-life crisis?

This is a man who cursed bike couriers the entire time we lived in Boston.  He's a runner who wears baggy shorts and old t-shirts that were freebies from some overnight flight he took for business.  Maybe it's the fact I'm not around to keep him in line any more?  There's very little overlap when we change shifts.  The person leaving is always like a race car gunning to get out of there while the person coming in tries desperately to trap them into conversation to stave off the inevitable.

Anyways at this rate I'm going to need to start a separate blog to keep people updated on Tom's changes.

Tribute

Day 11: This is Annie's incentive spirometer, she was given it when we arrived at the hospital almost twenty days ago.  It's to help prevent infections like pneumonia from settling in to her lungs.  She was told to breath in on the tube ten times an hour.  We've averaged about six or seven times a day, less when she was really nauseous.  We got more ambitious back when she had a cough, smudge on her lungs and resulting chest x-rays.  Yesterday we got even more ambitious.

I made it a goal for myself to get to know some of the other parents this go-around.  We kept to ourselves last time mostly because we were freaked out by the whole thing and rarely left the room.  This time I'm like the Welcome Wagon chatting with anyone who happens to pause in my vicinity.  This mostly happens at the microwave in the "warming room."  This is a room outside the ward with a variety of electric cooking appliances for families to prepare or warm some food.  Since we live so close to the hospital all I've done so far is warm water.

I'm thinking I need to change my "warming room" schtick because I'm beginning to feel like the student who gets an A and goes around asking everyone else how they did on the test.  I'll start in with the small talk and then learn how this parent has been with their child at the hospital for six months, a year, how there is no end date for them at this point, how their home and family isn't a drive down the 210 but plane rides away, how there are spouses and other children left at home.  These parents don't get every other night off like me, their child doesn't have visits from friends and a quick run for the toy left at home.

Then yesterday we learned about a five-year-old girl who was in remission from cancer but then got an infection in her lungs.  She was brought from elsewhere to our floor to see if something could be done, then she was released back to her hospital but ultimately nothing more could be done and she was allowed to return home where she passed away on Mother's Day.  So now we dedicate our spirometer sessions to her memory.  There are a lot of hard things you learn living on a pediatric cancer ward.

Ms Pac-Man

Day 10:  Annie is just chomping her way through the day now.  She has got a couple weeks and eight pounds to make up for and she's doing a swell job at it.  Mostly noodle soup, apples sauce and bread but she also said she craved a green smoothie.  Now our green smoothies are pretty hard core (and more muddy-colored than green).  They are made with baby kale, spinach, chard, micro-greens, mixed berries and banana blended with water to a liquid texture then some chia seeds are mixed in.  I'm fairly certain she is the only one on this floor full of queasy kids who thought that sounded good.  However, after her first sip she smiled and said, "tastes like home."

Throwback thursday

Day 9:  In the social media program Instagram members often post old photos on "Throwback Thursdays."  In the same spirit I'm going to try to post pictures from Annie's first transplant on Thursdays.  The pictures above are from February 14th, 2006, the day Annie had her first transplant.  On the right is a picture of her stem cells, saved from her cord blood.  My memory of the color of the cells was wrong in my earlier post.  I thought they were yellow but they were that punch color.  Still they seem much cuter than the bag of dark red stuff she got this time.  Later that day Annie was given the above medal for getting a transplant.  Day 0 was pleasant that time around which is why we were so shocked this year when she had such pain.

Things have improved in Room 3103 these days.  Annie's appetite continues to pick up and food to stay down so she has ever increasing energy.  Thus we're switching from pain and symptom control to boredom control.  Games, games and more games.  Also she finally had to meet with the school teacher so is working on some homework now.  Well I should say she is doing everything to get out of doing her homework now.  There is good and bad to everything.

Better homes and ... hospital rooms

Day 8: This is Annie's room from the outside.  We made a wreath for the door.  We were in the room next door last time and it looks the same.  That is the desk the nurse sat at for the four days she had ATG so she could watch her.

When people come in the room they get a yellow robe from the bottom right drawer of the desk.  Then they walk to her room's scrubbing station to the left of the door.  There hands are washed and masks and gloves are donned.  That machine to the left is what they use to check her vital signs every few hours day and night.  They check blood pressure, temperature and pulse with it.  The orange and green signs on and near the door are specific to her.  One is a chemo warning and the other a MRSA warning.  We can put a shade down over the window for privacy but we like to keep it up during the day so we can see what's going on in the hall.  Surprising things happen out there like the other day when the nurses did a flashmob to "I will survive."