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."

Gratitudes

Day 7: It's still two steps forward, one step back.  Last night was a little more lively but still better than the first two weeks.  Her appetite continued to improve but then she tossed her lunch.  Her favorite activity is still pulling out her hair and making little fuzz piles around the room - drives me crazy.

As the acute physical concerns subside, the emotional ones set in.  Will the cells engraph or do we have to repeat the last two weeks?  Is her nasal stuffiness a virus that will take over?  What unknown problems are waiting to arise?  Will she get an infection?  Will one of us get sick?  You get the idea.

Luckily we learned a little trick the last go around that has helped in this department.  We learned that in our brains fear (anxiety) and gratitude cannot occur at the same time.  One added twist is that the gratitude must be written.  This has worked every time for me to short-circuit unproductive worries and calm my mind to move on to things I can control.  At night I just pretend to write the words of my gratitudes instead of getting up for paper.  Then I can relax enough to fall asleep...until the next machine beeps!

Deciduous

Day 6: Yesterday afternoon Annie's hair started falling out so she got a buzz cut.  She had big plans for some creative cutting but it made her scalp sore to move it around. Instead she delights in pulling clumps of hair out and making me squeal.  

She had a milestone night sleeping from 10 PM to 5 AM!  She has also gone 24 hours without throwing up, although we had a couple close calls.  She has some congestion which hasn't alarmed anyone but we're keeping an eye on it. With a white count of zero she can't fight anything off and we've got over 10 days before we'd expect to see her body be able to do anything. 

While we're often unaware of the world outside this room we are very sad to hear the news out of Oklahoma. There are many families in need of prayers and we'll certainly add them to ours. 

The music of the night

Day 5: Nights are improving and we're faring much better this go around with some wonderful night nursing help. Nonetheless I still find them sleepless enough to muse about what they'd be like put to music.  The setting for these ruminations is the convertible chair-bed pictured above.

First there is the beat.  In this case it is the ceaseless whirl and ticking of Annie's four to six pumps, the different ticking of the wall clock, and the hum of the mini-frig.  This beat can be the only sound for the first hour or so, helping to calm the mind enough to enter a sleep-state.  Then, like an intruder breaking through the window, comes the piercing "BEEP, BEEP, BEEP!" This is one of the main instruments featured in the composition and is accompanied by a shot of stress hormones guaranteed to take at least 30 minutes to dissipate.

The beeps come when an infusion is complete or if there is air in a line. They continue until a nurse can come in and that depends on how busy they are with other patients. We've learned how to pause the beep which initiates a little dance sequence where one shuffles over to the machine, gets silent relief, falls back into bed in a delusional attempt to rejoin sleep at which point the pause has expired and the beep resumes. Despite the futility of this, the sequence is repeated over and over again until the nurse arrives.  Sometimes the hum beat takes over and sometimes there is a surprise second set of BEEPS when the air bubbles return.

Then there is the chorus, and it has lyrics.  This repeats every two hours when on lasix.  The words are, "I have to go to the bathroom!" Then comes a dance number where you unplug the pumps, push the pole to the bathroom and return.

In between the chorus there are some verses of backup vocals from people in the hall by the nurses' station or patients in neighboring rooms.  These are usually soft and rarely jarring.  Then, on really special nights, there are the soloists.

One diva is the battery empty, extra loud, shrill BEEP, high-note sequence.  This results from when the pumps haven't been given proper attention either by not being plugged in after the bathroom dance or by not being pushed in just-right.  Another vixen is the throaty cough.  This stage hog will stay until tempted off stage with drugs.  The third soloist is the Johnny one-note call of "bucket" which is followed by a set of rather unpleasant sounds.

The final element of the musical ensemble are the dancing girls.  They come in several times a night to take vital signs, hang bags and check the bathroom.  Twice they also include Annie in the dance by having her step on a scale wheeled into the room.  All performers must wear a yellow gown that has to be deposited in a bin with a cymbal-like lid upon exiting.

Annie is still asleep now as she stars in this show night after night and the run promises to be for over a month.

One step forward, one step back

Day 4: The whole eating thing is up and down.  She'll feel like something but then it comes back up later.  Same with her energy level.  She'll have some energy but then get very worn out.  There is a lot she needs to do medically and therapeutically so we're learning how to best balance her good moments and energy to do what needs to be done but also give her enough fun to keep up her spirits.  It's a dance and we're still tripping all over ourselves.

We will look for evidence of engraphment starting around days 18-21 so for now it's about keeping her safe from infection and germs as well as trying to build up her strength.

I noticed on the patient white-board in the room that someone wrote Day 50 under "target discharge date."  I'll do the math for you, that's July 3rd.  Can you imagine spending 58 days in one room!  Before we only clocked 30.  Since I wasn't here this morning I didn't know the origin of this message but upon just checking with Tom I learned that Annie put it up there.  Things can get confusing when you tag team.

The hazards of meditation

Day 3: While I might get daffy after two nights on duty, Tom stoically takes double shifts routinely and even had a three-nighter.  He's our MVP but as of last night he was almost MIA.

Tom took up meditation in preparation for Annie's hospitalization and he has kept it up every day without fail.  Last night a nurse friend came and gave him a break so he went out to meditate.  He quieted himself on his favorite bench and soon heard a rustling sound.  Being the good meditator he is, he acknowledged the sound but breathed through it.  Again more rustling and more breathing.  At some point it got the best of him and he opened his eyes to discover ... a skunk ten inches away from him.  He had been so silent it hadn't noticed him but then Tom flinched, the skunk raised it's tail ... but luckily it's stinker was pointed in another direction and Tom was able to move slowly away.

Fortunately we have a new indoor option for naps and quiet time so we'll be safe from the dangerous creatures stalking Duarte.  Well all except for cranky Annie.  Now I too would be cranky if I hadn't really eaten for eleven days (she has lost about eight pounds) but I think the TPN might have given her a little boost as in the late afternoon she moved to her chair by the window and managed to do a few of her recommended treatment activities and catch up on some emails.  By dinner time she was actually interested in some food and in the end managed to keep down five spoonfuls of broth and a noodle.  She'll get TPN again tonight and hopefully continue to build her confidence with food.

Nap Pods

Day 2: Like a starving castaway obsesses about food, I'm obsessing about napping and, if I win the lottery, I'm donating a dozen of these lovelies to the hospital.

I drool over the promises on the website, "the ideal energy enhancing environment," "allows individuals to boost their productivity while helping maintain a healthy lifestyle," and "the elevation of the feet relaxes the muscles of the lower back."  Yes, yes and yes!

This is what happens after two nights in a row on duty; and I had help both those nights!  It is still a scary time for Annie and she wants Mom or Dad when the pain sets in.  So Tom and I have embraced our inner homeless person and have taken to sleeping in our cars, on benches and, today, I saw a tree and a patch of grass so I settled right in.  There was a breeze, there were birds chirping, all was good.  Then I got the call, Annie was in distress and wanted Mom.  To me this makes us even and I'm no longer going to feel guilty about the whole food episode yesterday.

Annie is, of course, napping.  A lovely morphine sleep due to her afternoon head pain and nausea (I wanted to point out that she throws up with or without food but figured that was in bad taste).  She had a nice morning though, a shower and bed change, quiet reading by the window, and having her nails filed (not suppose to cut them and risk bleeding).  I've also noticed that she always manages to be asleep when the hospital teacher comes by.  Suspicious.

Viking Annie

Day 1 (99 bottles of beer on the wall to go): When Annie had her first transplant there was a tiny bag of cloudy yellow liquid containing her stem cells (from the umbilical cord) hanging from the pole.  I was flabbergasted to see the picture of what she got this time - the large bag of red above.  And her donor gave more than one bag!  Now I'm thinking her donor is some massive descendant of a Viking warrior.

When Annie began having her considerable pain yesterday it started in her legs and moved down and then across her arms - all the largest spaces for bone marrow.  The nurse hadn't seen such a reaction, yet  questioned was it possible the stem cells were having an effect that quickly.  Annie kept saying she felt like she was ballooning up - like the incredible hulk I imagined.

She awoke from her morphine-laced slumber yesterday evening pain-free and she went on to have a routine night.  Today has been uneventful until I encouraged her to have a little to eat (it had gone so well back with the chips) and her body responded by dramatically tossing back the effort.  Now she is furious at me and I'm kind of skulking around the room while she shoots me dirty looks.  She'll go on TPN tomorrow and we'll wait a bit before attempting solid food again.

Nasty surprise

Day 0:  Well the stem cells made it and started dripping in about 3 AM.

When she had her first transplant we were warned how bad the next two weeks would be but none of that came to be.  Since she had received her own stem cells, stored at birth, and since she was the first to have that, everyone was pleasantly surprised how well things went.  That is not the case this time.

Today has been horrible.  Acute pain moving from one place to another.  She's on morphine and we've had to up the dose.  Not having been through this part before we're in a bit of shock and regrouping as to how we'll manage two weeks of this.  For the kids who communicate with Annie things may be on hold for a while.

There is little to be done but endure this.  The hospital staff is working to manage the symptoms best they can.  This is the body's reaction to having an onslaught of something unfamiliar pouring in.  The loving prayers and support are felt and we continue to appreciate them.

Mystery Man

Day -1: Somewhere abroad a 30-year-old man donated his stem cells this morning for a person he knows nothing about.  All we know is he is ABO compatible, 11/12 matched including DPB1, with A locus micromismatched.

Since then his cells have been making the trip in a cooler carried by a courier on foot, car and plane.  The number of cells were counted at the international facility and there were enough for her size in the first of two bags he donated.  The second bag will be saved, if not needed right away, and frozen in case the engraftment doesn't work.  The cells will be re-counted here and then she'll get them over three hours in the wee hours of the morning.

This is a good time for prayers for safe passage and a happy landing in Annie's body.

Soap

Day -2: With the heavy chemo further in the rear view mirror Annie has started requesting any snack food that we can't get from the hospital's extensive collection.  We gladly comply but really it does seem she goes out of her way....  This is her snacking while watching a show, while she is watched by a nurse through that window.  There are rows of monitors on that pole as well as another and the nurse watches her and computer readouts for the first sign of reaction from her ATG.  This happens six hours a day from 10 AM - 4 PM.  Tomorrow is the last day of that.  She usually sleeps through the first two hours since she's busy keeping us awake at night.

Today has been a week in the hospital and we've begun to find our place in our new community.  We start sharing stories as do others with us.  We are now officially part of the soap operas playing out on our floor.  There was the patient who was discharged just in time to make it to prom, the math troubles of a staff person's child (I'm a magnet for math trouble stories), the ups and downs of the families in our neighboring rooms, and even budding romances.  Why just last night Annie and her visiting night nurse were up and giggling at 2:40 AM about the nurse's potential new flame.  Life goes on.

Round and round we go

With her final chemo last night and half way through ATG she was able to hold down some food today and her energy improved.  We are very grateful for that but there seems to be a steady stream of things that pop up to worry about.  A couple days ago we learned that the test for MRSA all patients get on entry came back positive.  Now everyone has to wear yellow gowns around her and another antibiotic is added to her soup. Then I noticed a red streak near one port incision that could indicate infection so we adopted that worry. Also a cough came up last night that required an X-ray but that came back clean.  Now the cough is back.  Then there was the low blood pressure today that could have meant a trip to ICU but luckily didn't.  Now a slight heart murmur.  This is an exercise in being able to see the forest through the trees!

Count down to count up

Day -4: That's how time is measured with bone marrow transplants. The days of destruction before the stem cells get dripped in are minus days. The day the cells are given is Day 0 and then success is measured by benchmarks going to day 100.  Annie was at day -8 on Monday when treatment began so 108 days total although that doesn't mean all is over then, it's just a milestone to reach.

Today ATG began. This is the fourth time she has had it. It's the nasty thing I mentioned. And to have it on top of chemo, it's all just a nightmare, but with nice people around. To revisit the joys of ATG just go back in the blog to March, 2012.  Tonight is the last dose of major chemo then three more days of ATG.  There is nothing easy about killing off a system.

As hard as it is we find moments to joke and we played a little Scrabble today.  The view from the floor to ceiling window is of the mountains and a lot of sky. We could see the lightening yesterday. We also sense all the lovely prayers and thoughts :)

Group Project

We're in the thick of it now.  Annie gets a dose of chemo at noon and another at 10 PM.  She sleeps a lot and shuffles to the bathroom every two hours.  She hasn't eaten for two days.  Just before each chemo session there has been a little window where we can engage her but mostly she's subdued.

As Annie's immune system gets killed-off her body becomes completely dependent on others sharing some of their blood until, hopefully, her donor's cells can repopulate her body. The fact that she has become a living "group project" is an overwhelming thought.  Her blood and platelet donors provide the building blocks and she, in turn, becomes a biological mosaic of her community.

To that end, the donor center at City of Hope in Duarte, California has asked anyone able to donate blood or platelets for Annie to contact them at 626-471-7171 and to say it's for "Annie."  The criteria for eligibility can be found at this link Donor Eligibility (or the web address below).  There is no way the donations Tom and I make can ever fully repay those she has taken out of the system and we are indebted to those who have helped share this burden.

City of Hope is an amazing place filled with people doing extraordinary things.  If you come out to donate be sure to walk the gardens and sculpture paths that flow between the 21st century research facilities.  We are fortunate to live near by as most people must upend their lives, all over the world, and move into bungalows on the campus in order to avail themselves of this top facility.  We have gotten to know a surprising number of people in our town whose lives have been restored to them by the people of this complex.  Blood donors are an indispensable part of that process and we can't do enough to thank these unsung heroes
.
http://www.cityofhope.org/patient_care/medical-facilities/blood-donor-center/Pages/donation-qualifications.aspx

Oh What a Night

Shock and awe began last night and Annie responded by having to get up for the bathroom and to throw up every two hours.  Luckily we have a friend who is a night nurse (as well as a former babysitter and student) who has graciously offered to help with night duty on her off days.  She comforted and aided Annie through the night so I could try and rest.

Annie has three more nights of the main chemo doses then other different nasties then some light chemo  after the transplant. So we have a ways to go with this phase.  As always the nurses and staff are doing everything they can to minimize the side-effects.

Will

I don't mean "will" as in strength of character or last will and testament.  I mean it as in William.  Today we learned there is a young man on the floor who, like Annie, enjoys playing the ukulele.  Could it be that she was only up from 4-5 AM with a bloody nose or that she has entered the "barfy" stage but kept down one pistachio, one piece of mango, one cashew, one peanut butter pretzel and five sips of water .... that improved her mood?  Not sure but something got our formerly morose girl to do her physical therapy, practice her ukulele, and to go to a little patient gathering before which she wanted us to find her matching headband and sort out her cowlicks.  In fact she is now 24 minutes late for "curfew."  We'll take every little blessing we can get, chemo starts tonight.

Chapter One, Page One

Tom did not have the restful experience I did for the first shift.  There were check-in procedures we didn't expect and they didn't get into bed until 11, then a procedure set off a bloody nose, then there was a problem with an early morning transfusion, then Annie got chills, then two machines malfunctioned, then radiation time (she had to be strapped to the wall and she looked so sick that the picture is too disturbing to post), then a wait for a wheelchair, then violent chills, then high fevers that continue, then several antibiotics and lots of checking on her.

Getting all the events of his past 16 hours compacted into 15 minutes was so overwhelming that I had to ask for a break before even starting to give him a break!  All I could think was, with such a terrible start I just wanted to turn to the last page of the story and see how it ended.

Annie has felt miserable all day, hasn't eaten or had more than a few sips of water.  She has been groggy and barely able to communicate.  When I explained Tom would be arriving shortly for the night she was shocked to discover it was still Monday.  She thought it was already Wednesday.  She asked if every day was going to be this long.  Definitely not how the first day was supposed to go.

Rocketman

We just dropped off Annie and Tom.  In the dark, outside the deserted building, she made a grand show of "her last breadth of fresh air."  She also pointed out the significance of the double sliding doors closing behind her as she entered the futuristic lobby.  For her last transplant we referred to the hospital as "the hotel."  This time we've dubbed it "the space station."  We talked about how this must be similar to what astronauts feel when they head off to spend months on the space station.

Getting the first night off duty, I get to come home and relax.  In some ways that is my most overarching feeling.  Excepting her hospital stays, it has been seven very long years trying to keep her safe on literally an hourly basis.  There is a degree of peace that comes with handing her care over to a medical team.  This has not been the same feeling for Katherine who had to come home to the realization that the sibling she has shared a room with almost since Annie's birth is not there.

The Cut Off

Here's Annie with her former pig-tails and her current short hairstyle.  Since she doesn't think she'll want a wig, we'll donate her long hair to Locks of Love (http://www.locksoflove.org) where they'll use it to create hairpieces for disadvantaged children who lose their hair for a variety of reasons.

Annie is having to adjust to the port they inserted as well as having short hair.  Her transplant has only been a future idea to her until now.  At moments she has needed a little coaching to refocus her attention on her blessings but she gets back in the groove pretty quickly.

A big part of that comes from the support she gets from her community of classmates and friends.  While the adults in her world provided her moral support before, now her generation has really stepped in.  Through email, FaceTime and Instagram they have found a way to support her and keep her feeling connected.  It is remarkable to witness as these 12-year-olds take ownership of this experience and find ways to make the best of it.  We are grateful to be part of a community where that type of thing happens.

Jokester

Annie had her surgery this morning.  Tom kept me posted via text messages throughout the morning.  Something to the effect of, "Done, still asleep," "Awake, still groggy," "Heading home."  After that last one I asked how Annie was doing, then how Tom was doing.  It sounded like Tom was a little worn down so I was trying to send back supportive messages.  After a bit of this I get another text explaining that Tom had not been texting me, he had gone off to get the car, and it was Annie tricking me the entire time.  Thus I'm guessing she is doing OK.  Tomorrow she'll go back to the hospital to have her dressing changed and then it's hair cut time.

Her hair will fall out due to the chemo and radiation.  In the process of killing her stem cells all other fast growing cells will also get wiped out.  When she was four this made no sense to her so she refused to let us cut her hair.  Later she was very cross when long pieces of hair were stuck all over her and the bed.  Since she remembers that she agreed to the cut this time.  We'll save her long hair in case she decides she would like a wig made from it.  At this point she doesn't think she wants one, as was the case last time.  We'll get a short, stylish cut tomorrow since it will still be a week or so before it falls out. Once that starts she'll have the short cut buzzed by her sister.  While it all sounds unpleasant from the outside it's part of trying to have fun with what we can for us.  Will post the new hair-do tomorrow.

Smile to smile

These last ten days had several twists and turns but worked out for the most part.  Annie had a spat of bloody noses that caused her to leave events midstream.  It became clear she wouldn't be able to attend her class trip to Astrocamp.  While it was a tough decision for her, she bounced back and we had a memorable day at The Getty museum.  The next day Tom took her to Disneyland.  She and Katherine set up a tent in her room and had a sleepover to round out Familycamp.

Yesterday was her last day of school and it was filled with parties and good cheer.  The sign above is from the door to her English classroom.  The smiles of yesterday turned into fixing her smile today at the dentist.  She had one baby tooth that was going to create problems if not removed.  So she started the day with a platelet transfusion then to the dentist then back to the hospital for a doctor's appointment.  We've determined that her new donor is also international.  The stem cells aren't scheduled to arrive until after midnight a week from next Monday.  It is interesting to think that across the world there is a 30-year-old man willing to share his stem cells with someone he doesn't know.  After two years, if both parties are willing, we'll be able to contact him.

Annie is about to have a pre-bedtime snack as she can't eat again until tomorrow afternoon.  Her surgery to insert a Hickman is tomorrow at 9.  She'll get to the hospital at 7:30 for platelets again.  The procedure is described in my 3/13/12 post.  Will write again when she's out of recovery.  We are grateful for all the prayers and warm wishes, it is impossible to be sad with so much love and support!