Cautiously and gratefully entering the holidays

Late, late, late in many ways including posting an update!  Annie had her appointment almost two weeks ago and, while her counts had drifted down some, they basically remained in the normal range and her doctor was only positive.  She also has had to manage dry skin here and there but this is on the best case scenario of GVHD so we're just very grateful on that front so far.

We've been fundamentally changed by this experience and I can't imagine we'll ever rest easy again but, on the flip side, we've learned to be just fine not resting easy.  With thoughtful advice from "team Annie" we requested her immunizations be spread out over time so she only had two shots last visit.  That will continue with two each month until she has received all seven due by this age.

Annie moves forward mostly unconcerned by all this.  Instead she was worried about her first experience with final exams and juggling her end-of-year events.

Thank you for all the support and prayers in 2013 and before.  We couldn't have made it this far alone.
Next appointment January 13.  Hope your holidays are filled with blessings!

Well, George, we've knocked the bastard off!

As of Monday, Annie's ascent to normal blood counts was complete.  And, like Sir Edmund, she was not alone in her expedition.  On this momentous occasion she had the support of over 60 seventh graders who raised $7,600 for the hospital that gave her back her life.  Her classmate A.J., who thought up and organized the fundraiser called "Hoops for Hope," was able to join Annie and present the donation.  Both students got a VIP tour of the facility and a better understanding of how their group's donation would help bring this research hospital one step closer to curing some of the major health threats of their time.

Annie has been blessed by so many special people every step of her journey and our gratitude is boundless.  One particularly poignant moment of the day came when Annie returned, for the first time, to the hospital floor where she lived for over a month.  She received hug after hug from her former nurses as she showed her classmate around the floor.  As we head out she turned to me and said, "you know it's really hard being back here."  I pursed my lips and nodded and then she continued, "because I love it here but I know I can't come back."  It's not just any medical facility that earns that response.

Now that this summit has been reached there is plenty to do for her to get back in the game.  In fact next visit she gets to have her first round of newborn immunizations for the third time in her life.  We'll update then on 12/12.

Approaching normal

Our lives, especially our emotions, have been driven by lab results for so long.  While blood draw days were usually filled with apprehension, once the report was presented, and the results assimilated, there was a period of acceptance and hope that something would change before the next test.

Blood tests don't really have that power over us any more.  Their relative stability and upward trend have provided a sense of confidence and calm.  Yesterday's results were no different.  All normal, with hemoglobin getting ever more close at 11.6.  For the first time we looked at a chart that is part of most "normal" pediatric appointments - where the child falls on a height and weight distribution.  Here too Annie is starting below the curve but, with two pounds added since the last appointment, she's making progress.

Like with the growth chart, approaching normal just means replacing our unusual challenges with more normal ones.  However a silver lining is that we are just so happy to have those challenges.

Next blood draw/blog post now moved out to a month!

Step by step

Annie had another positive appointment yesterday.  All blood counts are normal except for her hemoglobin and that went up from 10.0 to 10.6.  Normal for that will begin at 12.2.  Her kidney functions have all stayed normal so now we don't need to see the nephrologist any more.  Her visits have been extended to every three weeks and she can get a flu shot.  The rest of her immunizations are scheduled for November.  This is an exciting procedure were a group of nurses surround her and all stick her at once.  She has done it once before and it does seem to be the way to go although it looks absurd.  Annie also gained a pound which is much needed.  She has a full plate of activities and goes merrily through her day which has helped build back her appetite.  We feel like a family of wood-peckers because we "knock on wood" all day long for the miracle of each normal day she gets.  Update in three weeks.

Home run

While it sure seemed like we had a perfect storm of bad luck with Annie's illness and all the dominoes that fell from there, today continued our happy progression of good luck.  First was the news that her kidney ultrasound from today showed all was well there.  Next we learned of continued progress with the blood counts.   Whites and platelets still percolating in the normal range and hemoglobin stepping up again to get to 10.0 (normal starts at 12.2).  Her kidney markers that were causing concern dropped almost by half and put her solidly in the normal range.  Unexpected great news.  And finally we learned that her follow-up engraphment test came back with 100% engraphment.  She is now entirely someone else immunologically speaking...weird, weird thought.  This is not to be taken lightly as many aplastic patients never reach this point and some can unfortunately slip backwards.

Annie chugs steadily through her days without pause and has a nice sprinkling of hair coming in.  Tom takes a picture of her every few days so we can make a time-lapse movie of her hair coming in some day.  Life being what it is there are still things to work on.  She's super skinny but at least didn't lose weight between last visit and today's.  The doctor has noted that the road back to physical strength is a far longer one than the time it took for the body to weaken.  She also has very high ferritin levels due to all the blood transfusions.  However when she was last checked for iron overload a year ago the doctor was shocked by the lack of damage compared to what is usually seen.  Hopefully that will give her a leg up but we'll know better in a few weeks as she'll have a full iron panel done at the next appointment in two weeks.  Finally, she has a few rashes that have popped up.  No one is ringing any alarm bells yet but we're keeping an eye on them.  Still, compared to where we've been, we're feeling nothing but gratitude and awe.

The new kid

Annie made it back for the first day of school and I finally felt I could exhale.  While we have so much to celebrate, it has been hard to get excited because she has been "cured" before only to relapse a year later.  There are many things different about this time however it seemed best to just be thankful for each day.  This event, however, felt like crossing the finish line because it can never be undone.

I doubt there have been as many kids as excited to start school as Annie.  She had her backpack ready for weeks and her uniform set out days early.  Normally poky about getting to bed, she was like a jet engine getting ready for bed.  Similarly she was a child possessed in the morning doing her chores (and everyone else's) to get out as early as possible.

While the excitement will, I'm sure, wear off there are some interesting changes that I'm pretty excited about.  With Annie's years of low hemoglobin it has been hard to know if some of her struggles were her nature or her medical situation.  She would arrive home from school and shut down.  Evenings were straight uphill with us pushing all the way.  Annie's mood would erode as the hours passed and if I tried to help with homework I'd be met with harsh outbursts.  Tonight, however, she came home and plopped herself down at ... her desk.  Not the couch or her sister's room where the endless game of avoid what I have to do would begin.  She happily started her homework and when she had a question, I tentatively offered suggestions to which she said, "that's smart, thanks," and went back to work. All I could do was slowly and quietly back out of the room so as not to risk waking the bear who had apparently gone into hibernation.

So we'll keep our fingers crossed and keep up our last major medical task - watering Annie.  She needs to drink 1750 ml of water a day and that doesn't come naturally.  We set timers and measure out water bottles to stay on track.  The doctors lowered her immunosuppressive dose as well as removed another medication after her appointment Monday.  Hopefully this, combined with her additional water requirements, will help make progress on the kidney front.

I'll keep updating approximately every two weeks as we move through doctor's appointments this fall.  At some point I hope to move to a different blog where people can get an email if there is an update posted.  This is because there is still a significant part of this story to tell.  Who is the mystery man with stem cells that produce improved homework behavior?  We of course want to share all those details with Annie's super support team but we have to wait two years!  So I'll figure that out before we hopefully can move on to an un-blogworthy routine.

Day 100!

     This is Tom writing. Today is Day 100, a significant milestone in a Bone Marrow Transplant. It represents two different things. First, like any milestone it is a chance to reflect on the past (e.g. "I just turned 40 and still have my hair... good."). For us, this reflection is almost 100% positive. Prior to the transplant, we had "the consultation", a meeting with our doctor where she laid out all of the incredibly scary things that could happen. Essentially none of them did happen. Yes, there were hurdles along the way (hurdles which now seem like bumps). However, given what could have gone wrong, we're incredibly blessed that things went so well. Second, Day 100 represents a change in the rules for the future. Gone are the masks (though we still do have to be careful around sick people). Gone or much relaxed are many of the rules Annie has been living under. To celebrate we went out to a favorite restaurant to celebrate (see the picture above). Soon you'll see Annie at many of her favorite haunts.
     Our we completely out of the woods yet? No. Annie will still be on fairly heavy-duty medication for a full year. She'll still have many rules to follow (such as staying out of the sun). Plus, no new puppies for us for a while. Plus, there's still some chances of bad things happening, though those chances diminish every day. However, at this milestone we are definitely cheering!

10 bottles of beer on the wall...

Day 90: 10 days to go.  Annie's summer of seclusion is about to come to an end and today her doctor gave the go-ahead for her to at least begin school on August 28th - a mere six days after Day 100.  The doctor stressed that this is not the norm and that very few of the pediatric patients will be resuming school on time.  Annie's relatively smooth recovery so far is thanks in great extent to all those who came before her and the medical professionals that meticulously refined their craft from each patient's experience.  We know some of those patients and we are indebted to their struggles which were studied and learned from to help give kids like Annie a smoother ride.

Today was Annie's first needle poke in three months - now that her Hickman has been removed.  She handled it like a champ and, for the first time in seven years, did not sit on my lap or hold my hand to have it done. Annie's white and platelet counts stayed in the normal range and her hemoglobin took a step up to 9.4 from 9.0.  This is a happy development and hopefully means she won't need any more transfusions.   Her creatinine level however is elevated so she will add another specialist to her arsenal and is scheduled to see a nephrologist in a couple weeks to tend to her kidneys.  Until then we'll stay even more vigilant about keeping up her water consumption.  Already a timer goes off every 30 minutes for her to drink 2 oz of water all day long but we'll redouble our efforts and hope for improvement by our next appointment in two weeks.

We'll plan to post on Day 100 when we hope to take Annie out into the big world to celebrate.

Rolling Along

Day 86: Still hanging out at home without event, well except that Annie now rolls everywhere.  Next doctor's appointment Monday, will update after that.

Free to be

Day 73:  Annie had her Hickman removed yesterday.  It was a big psychological boost as it's hard to feel like you're getting better when you still have tubes sticking out of your body.  Additionally it will free her up for carefree showers and the possibility of swimming.  Thankfully it will free us up from the daily care the tubes required.

Her blood counts continue to be positive; platelets and whites in the normal range and hemoglobin holding at 9.0.  While this is still below the normal range of 11.5-15.5, 9.0 doesn't make her too lethargic or moody (she has been as low as 5.0 but she was very unpleasant to be around).  Her latest project to stay engaged inside our home has been the construction of a Lego village.  Here she is with today's creation - a cruise ship.  So while her body may have been stuck at home, her mind has wondered free and wild.  Next appointment in two weeks so we'll post then.

Back in the saddle

Day 59:  It has been a relatively calm few weeks.  Annie's platelet and white counts continue to be in the normal range.  Apparently her hemoglobin count could take up to a year to reach its full potential and even then it may not be as robust as the other two lines.  Currently it is at 9.0.  However after seven years of low platelets and all the restrictions that came with that (no bike riding...), Annie is thrilled to be cruising the neighborhood on her bike, at dusk (she has to stay out of the sun for a year).  Of course we discovered that her bike was too small, and she has to wear a mask, but no matter, it is pure joy for her.  She also seems to happily move through her days at home with a variety of visitors coming to play games, share hobbies and help her catch up on school work.  She gets tired of her bald look but luckily doesn't dwell. There are adjustments we make between doctor visits in response to any imbalances in her chemistry panels (sodium too low, potassium too high...) and while we seem to be out of the acute GVHD period there are still some things we're watching in terms of chronic GVHD.  She even had her first bloody nose in months but it stopped after a short while like most people's.  After bike riding, her next big goal is to get her Hickman out so she can swim, move more freely, and not require daily and weekly care plus special wrapping to take a shower.  While this means she'll need to go back to being poked for blood tests, she's so used to it that it's an easy trade off for her.  The doctor gave the OK to schedule this surgery and hopefully it will happen in the next couple weeks.  So I'll aim to update then, July 25th.  As usual we are grateful for all the prayers, support and good thoughts that have helped us all get to this point as well as we could hope.

Patience

Day 38: Another good appointment.  Her platelets passed 150,000 which puts her in the normal range for the first time in seven years.  Hemoglobin went down to 10.0 but we're hoping it will rebound at some point before requiring a transfusion.  Whites are holding pretty steady (they bounce around for everyone).  Since Annie will be immunosuppressed for the next year, even though her counts may get strong she is still at greater risk for infections and disease so she has to be extra careful in that arena.

Her kidney function markers improved enough that we can try taking her off the IV pole again Sunday night.  Even better, most of her other markers are stable enough to enable her to only have to go to the hospital for blood draws only once per week.  She has also been able to go off a few medications so we are down to three plus a magnesium supplement.

As the medical tasks become less acute Annie has begun to think about life beyond health milestones.  She wants her prior body strength back, now.  She would like to have her long hair back, now.  She would like to go out to shops, restaurants, classes and play, now.  Luckily these moments pass quickly as we try to keep her busy so she doesn't dwell.

Our next goal is to get her Hickman port removed.  Usually this happens after Day 100 but her doctor was willing to revisit the topic in a month.  Since we are hoping nothing eventful happens before then I will not plan to post again until Thursday, July 11th.

Report Card

Day 34: It's report card season but grades weren't ready when we had our appointment today.  We learned her blood counts are still progressing well but they didn't have the engraftment results from the biopsy.  They did however have information about cellularity.  Back in April when she had her last bone marrow biopsy her bone marrow had 15% cellularity.  That means it was 15% full of stem cells making blood cells and 85% empty, thus why it's called aplastic anemia (empty of blood).  Her biopsy from last Thursday revealed that she now has 80% cellularity.  That was excellent news for this point in the process.  What remained to be known was what % of those cells were her donor's DNA and what % her old, flawed DNA.  We were told we'd hear by Wednesday.  Late afternoon, however, we received an email of her engraftment report and it showed that her bone marrow is now 99.66% her donor's DNA and 0.34% her DNA.  This too was excellent news for day 34 and the expectation is that it will eventually go to 100%.

Since the news came after today's appointment we'll have to wait until Thursday's appointment to better understand how this impacts things from here.  We still have issues to deal with and she was put back on her IV pole for nights today as her kidney numbers went up again.  So there are still hurdles to cross but the engraftment report was the biggest and now we just want to be careful to not mess things up and we're grateful for all the hard work, prayers, help and good luck so far.  We'll report after Thursday afternoon's appointment but it's definitely a cause for celebration in the mean time.

Thank You!

Day 28: I've felt a lot of things for the first time as a result of Annie's illness but these past few days there have been some new feelings.  Where we used to have to constantly warn Annie to stop spinning around or flopping onto the hard floor or tell her to use nose spray every hour (all to prevent the black and blues and bleeding her low platelets couldn't control) now I catch myself and stop.  Her platelet count today was 131,000; almost normal.  For us this is like a blind person getting their sight back.  It's like waking up from a nightmare long after you'd given up ever waking up from it.

Her white and red cells were also in normal ranges.  The reds, however, could be due to her transfusion last Friday from a "designated donor."  This leads me to our thanks.

Annie's and my schools share the motto "Actions not Words" and that spirit was in top form yesterday when her school held a blood and bone marrow registry drive which ended up exceeding their goals.  I have often wished the other people at City of Hope could have the same support as us and yesterday they did.  Those gifts of blood will extend and save lives of individuals as well as bring another day together for loved ones.  When Annie gets a transfusion I look long and hard at the "designated donor" sign and think about the time it took that person to drive out, sit through the questions, get poked, lay there while the blood is removed or sit even longer while the platelets are, then they have to take it slow, forgo that workout or glass of wine all usually in complete anonymity.  It's an overwhelming expression of the motto we hold so dear.

Thursday Annie has her bone marrow biopsy, her eighth and hopefully her last.  It will be used to see if the engraftment was successful.  The doctors are hoping to find that 95% or more of her bone marrow is that of her donor.  Eventually they want that to be 100%.  We won't know the results until the start of next week so we'll update then.

Rover

Day 26: This is rover.  We've been discouraged from getting a pet all these years because of Annie being immunosuppressed so I think we tend to anthropomorphize things a lot.  Rover carries Annie's IV fluids and pump and Annie seems to like wheeling rover around, especially when we're trying to sleep.  The nurse that helped us set it up says this seems to be the way health care is moving to keep costs down.  Have more of the routine treatments done at home.  It has worked out better than we though, especially because the pole is smaller and we don't have those awful noisy pumps that BEEP (I think I have PTSD from those...I hear them in my head).  Rover just sort of makes this chirping sound as he pushes the air along.

Since we're settling in to something of a routine I'll wait to update again until after her doctor's appointment Tuesday because otherwise (hopefully) I'll just be writing a running commentary on how many board games Annie beat me in!

Ahhhhh

Day 25: This is our home pharmacy.  On the upper right is Annie's special mask.  It gets dated and is good for one month.  It also gets kept in its own bag.  She wears this when she goes out, which at this point is only to go to the hospital.  Below that is a yellow paper listing all the things that could go wrong and require us to call the hospital.  To the left is a list of her medications and when she takes them.  Below it all is the pile of daily meds.  Shocking really but they are mostly to protect various organs and to fend off GVHD.  So far our only GVHD issue seems to be nausea.  For the most part we are controlling it with that blue-lidded medication but as it starts to wear off Annie gets queasy as she is right now.  So we have to wait until she can take it again so she can keep down her evening medicine and do her mouth care.

Annie hates mouth care.  She has to swish one liquid for 15 seconds and then suck on another pill for 20 minutes.  She does this four times a day as she has since she entered the hospital.  It's kind of the bane of our existence at the moment.  Oh what a coincidence I just got interrupted to go argue about mouth care.

Anyways all that aside it was a very pleasant day.  She played around the house and we could manage all her affairs while also tending to other things.  We ordered a new pump for her evening fluids and Tom spent a lot of time learning how it works.  It is also nice not to stress about wondering what her blood counts will be every day.  We'll have to wait until Tuesday afternoon for that when she goes in for her next appointment.

Nothing is easy

Day 24: Here's Annie taking her first steps outside in over a month.  She was excited but it was a long day and it's not over yet.  They wanted to keep her on hydration at night so we have to set up the pumps at home.  However it's 10 PM and we have a nurse at our house trying to figure out how to set up some new type of IV pump that doesn't need a pole.  From the sound of things this will take a while as the nurse and Tom are reading the instruction manual to try and figure it out.

Anyways Annie's counts improved again except the hemoglobin which dropped to where she needed a transfusion today.  That extended everything by six hours.  As that was happening we had to finish packing the room and continue with her constant hydration, food, mouth care, medicine and physical therapy requirements.  Then, when reviewing all the medicines going home with us, I noticed they gave her the wrong form of her anti-nausea medicine.  It was the type that dissolves and that makes her throw up - she only likes the type you swallow.  This led to phone calls, having her try to swallow them anyways,  her spitting it up, more phone calls, visits to the pharmacy, calls to the insurance company....finally got what we needed and could head home.  Some friends gathered on the lawn to welcome her home but they had to deal with all the false starts so we were generous sharing our frustration.

Of course it's wonderful having Annie home but it's a little like bringing a baby home the first night.  You're exhausted and excited and then overwhelmed and up all night.  So on that note I'm off to help get the beeping machines set up!

Day 23

Day 23: This picture is of Day 23 eight years ago.  This was the moment we arrived home after her first transplant.  I am truly amazed we're going home on Day 24 this time since the procedure was much more complicated not being her own cells.  Good thing we didn't know then what was in store for us.  I've often used the analogy that it has been like walking on a tightrope and it works as long as you just keep looking forward and not down.  But it's more than not looking down.  We learned that we had to find a way to enjoy the time in spite of the hardships as it's not like we'd get those years back.

Late last night Annie and I snuck off the ward and took the elevator to the top floor and enjoyed the view of the lights sparkling across the San Gabriel Valley.  It was as special and happy moment as I could have had with a healthy child in an optimal situation.  Well it was special until, despite her protests and warnings, I made Annie go to our favorite spot, which was behind a closed door, that she told me not to open, but that I did anyways, and then tripped an alarm, that then made us have to cut our nice moment short, as we fled the scene.

Annie's ANC and platelets were still improving today although her hemoglobin dropped.  We are still battling nausea and she had to be back on IV today since she didn't make her liquids quota (1,800 mL/day) yesterday.  She has been drinking up a storm today to try and not have to go home with a pole and pumps.  We'll see if she can convince the doctors tomorrow.

Meanwhile back in Ithaca

Day 22: Odysseus might have had to deal with his home being overrun with his wife's suitors but we found our home overrun with gophers.  Big mounds have been popping up all over our yard this past month but today we got the report that our trusty no-pesticide, gopher-guy has the upper hand.  This is good news because we're still on track to bring Annie home on Friday and she's supposed to steer clear of fresh dirt among the other gazillion things we learned about in our one-hour debriefing today.  Annie's counts also continued their epic journey and ANC and platelets continued to progress while hemoglobin stood still, which is better than dropping.

We also had some hands-on training with a doll to review how to care for Annie's port.  The blue disk on the left side of the doll is the one opening through which this entire process occurred.  The device to the right is a safety clamp that protects the line from being pulled out by mistake.  The red and blue ends are her double lumens through which things go in and blood can come out.  There is regular care required of the site so the nurse provided training.  I asked Annie to videotape the training however we just ended up with a video of the two of us arguing.  It went something like this...

(irritated) Mom, let me do it.
(irritated) No, I'm learning it.
Mom, I know how to do it.
Fine but I have to do it.
Mom, give me the tape, I've seen this a hundred times.
The nurse is teaching me, you're taking the video.
Here Mom like this...

It just goes on and on like that the whole time.  I can't imagine what the nurse was thinking.

Make way for ducklings

Day 21: Big day in our little pond.  The GCSF pushed Annie's ANC to 2.1 and her platelets keep going up.  The hemoglobin hasn't caught on yet so she'll probably get a transfusion in a day or so but that is to be expected.  The normal ANC count meant Annie could leave the room and attend group today.  Group is when the kids on the floor, who are well enough, get together in a special room and bond.  All 18 patient rooms are full and, unusually, the majority are transplant patients versus the usual cancer-treatment patients.  Group was basically Annie and a bunch of teen-aged boys.  There happen to be a number of musicians on the floor so they apparently had a jam session.  She's past curfew again so I haven't gotten the full scoop yet.

When any of us leave the room, Annie included, this is our uniform.  It is also what everyone who comes in the room must wear.  We call it our duckling uniform.  I happen to be doing a ninja duck impression.

We also learned today that our duckling will be migrating back home on Friday!  So now we're all in a flutter trying to get our house-hospital ready, getting trained to care for Annie at home and packing up.  As you can see from the background of the picture we turned our room into a playground so it will take some time to pack it up!

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.

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.