The sound of a silver lining

Day 20: ANC back to 0.4 so the clock resets for having at least three days of an ANC of 0.5 before going home.  Today they gave her GCSF to help spur the production of white cells.  For reference the normal range for ANC is 1.9-8.7.  On the other hand her platelets are happily multiplying.  They jumped from 28 to 37. That represents 37,000, normal is 150,000-350,000.

Annie's low platelets restricted seven years of her childhood.  Low platelets prevented her from doing sports where she could fall or get hit by a ball and from riding a bike.  Where sports were out, the arts were waiting with open arms.  She spent that same time enjoying all types of dance, musical theatre, drama, singing and playing instruments.  It's interesting to think if she would have developed these interests had she not had to quit the sports she enjoyed before diagnosis.

Music has come through again during her hospital stay.  Annie's guitar was too big for playing in bed so she got a ukulele just before entering the hospital.  There is a music therapist that visits once a week and her first session with Annie was transformative.  After the therapist left, Annie changed the "I don't want to be here" message on her "All About Me!" sign to "I play ukulele."  Since then she has preformed a little concert and started giving lessons to a friend.  Here's a snippet from her repertoire.

Two Towers

Day 19: Continued progress with the blood counts.  WBC back up to 0.6 and ANC up to 0.5.  We have also seen her platelet count go up and this is after the point where a transfusion would have had impact.  Over the past few days we have watched the platelets go from 17 to 18 to 28 today.  Platelets were always the cell line that dogged Annie so it is surprising to see them improving before hemoglobin.  But of course this is probably not Annie's old immune system we're witnessing.  Doctors won't officially say engraftment until she gets another bone marrow biopsy around Day 30, however unofficially she is displaying the signs of such an event.

An ANC of 0.5 is also a benchmark for being discharged.  There is talk that if she continues on this track she may be discharged at the end of the week to home isolation.  There are three milestones required for discharge.  One is being free of pain killers.  Two is being able to keep down some solids.  Three is an ANC of 0.5 or above for three or more days.  Annie has cleared one, was good on two except for the start of yesterday and today is the first day of an ANC of 0.5.

Since we're looking big picture, the two towers picture above is my go-to analogy for the entire transplant experience.  There was the first scary looking tower which represents all the nasty stuff in the beginning.  The surgery, the radiation, the chemo, the battery of meds and the infusion of cells.  Then there was the long flat run between the towers.  That is where we are now.  This run is scary for entirely different reasons and a myriad of them at that.  The fear of failing to engraft, risk of infection and endless possible complications.  Waiting at the end of this run is the second scary tower, GVHD.  Graph vs Host Disease is the gambit of complications that arise as the donor's system and Annie's system clash.  This is unique to every individual and donor.  Acute symptoms start as soon as the cells are introduced through engraftment and chronic symptoms begin to present around the three month mark.  These can require a life-time of management.  City of Hope is a world leader in the management of GVHD so we are in the best possible hands for facing the second tower.

Chutes and Ladders

Day 18: This process is like the game chutes and ladders.  You move a long step-by-step but sometimes you land on a chute and slide back to a lower spot.  Similarly you expect a regular step and then you cruise up a ladder.

Annie's counts, however, were pretty routine.  Her WBC went from 0.6 to 0.5, ANC stayed at 0.3.  We've started watching her hemoglobin and platelet counts but those are harder to discern since she has transfused blood in her system for both of those.

Her slide down the chute was in the nausea department.  She threw up the first two meals she had today and I'm waiting now to see how things go with the third. This has the potential to be a back slide as, if she can't keep her food down, she'll have to go back on TPN and IV fluids.  Also she was off the IV anti-nausea medicine so it would be unfortunate to go back on that (more things to beep all night).

I learned all this by texts from Tom so I was feeling very sorry for both of them ... until I started receiving some pictures from them.  Pictures of Annie with Micky and Minnie Mouse, Annie with R2D2 and a storm trooper, Annie with Bat Girl, Super Girl and Wonder Woman, (Tom with Wonder Woman), and Annie with Austin Power.  Apparently there was quite the party on the floor.  Well that was the zip up the ladder for them.

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.