Steps along the road to recovery–Day 45

• I’ve just been reading back over the past entries.  It’s been nearly six weeks (June 22-Day 6 post transplant) since I felt up to writing anything here.  It’s definitely a sign of progress that I feel up to writing again.
• The last week has given me welcome days of slow, steady progress: walking more, less dizziness, vastly improved appetite, somewhat improved sleeping, better concentration.  It feels like we have spent huge amounts of time at the clinic as the team has fine tuned my various meds and IV hydration, but it seems like we now have a handle on blood pressure, electrolytes, graft versus host disease, etc.  The nature of the process is that all of this can go south on me in a hurry, particularly if an infection or some other complication crops up, but I am grateful that I have been able to stay out of the hospital so far.
• I got another lumbar puncture (spinal tap) a few days ago.  (Because the leukemia had spread to my cerebral-spinal fluid prior to transplant, my treatment protocol calls for four post transplant lumbar punctures, with intrathecal chemo, to ensure that the CSF stays clear of any remnant leukemia.)  This most recent LP was the quickest and least painful of the six or so that I’d previously received, and we got the welcome news that my CSF sample remains clear of leukemia — another step in the right direction.
• Another highlight of the past few days has been the visit of our friends Kevin and Cornelia.  It’s been wonderful to see them, share a few meals, and catch up on things.  As with all of your expressions of support and encouragement, I am strengthened.
• As I look toward the days and weeks ahead, I’m hopeful that that the recovery trend of the past few days will continue smoothly.  The next big scheduled event will be my day 56 bone marrow biopsy (likely to occur on/about August 11), which should give us a sense of how my new stem cells and the dasatinib (oral chemo) are handling the bit of leukemia that was still in my system on day 28.

Day +38: Reading and walking and back on chemo

Dear Friends,

Roger seems better this evening.  It’s not that a particular part of him is all of a sudden well or that he feels good anywhere at all.  But I see improvement in that he is back to reading his books (this comes after a low moment last week when he asked me to return all but ten or so of his library books).       

The steroid Prednisone is likely responsible for Roger’s modestly increased energy.  The onc told us that many patients set to cleaning the house after their first dose of Prednisone, while others become moody or aggressive (friends here call it the “anti-social” drug).   He has yet to experience any of these urges/side effects, but we did walk the few blocks between the apt. and the clinic today.  The walk was a challenge, and we made liberal use of rest spots along the way, but it felt like a significant accomplishment.

The Prednisone has also eased modestly the GI symptoms that have plagued Roger for so many weeks.  I’m therefore more optimistic that the liters of extra IV fluids and electrolytes we infuse every day will counter his dehydration.  I believe that within another 4-5 days, we’ll be permitted to scale back the home IV infusions.  Until then, our home pump, will continue to run for all but a few hours of the day.  

Because managing Roger’s blood pressure continues to be a problem, we’ll be back at the hospital on Friday to consult with the nephrologist.  Roger will also have a chest scan to ensure that none of the extra fluid he gets is pooling in his lungs.    

The only other key development this week was that Roger started back on his oral chemo (Sprycel/Dasatinib) to prevent the leukemia-causing mutation from growing.   The chemo, along with IV magnesium infusions, have given Roger some intense bone pain, but he is coping.  Roger will start another cycle of lumbar punctures with intrathecal chemo (methotrexate alternating with ara-C) into the cerebral-spinal fluid next week.

We’re hoping to have a quiet weekend and plan to spend only a short time in the clinic each day.  

Your support has been tremendous, and we are grateful to each one of you.

Much love,

Lisa, Roger, Amelia and Isabel

Day + 35: Graft vs. Host Disease; Italian cord unit dominates

Dear Friends,

• The endoscopy and colonscopy went smoothly on Friday.  I was with the doctors for the procedure and therefore had the benefit of their on the spot assessment, which the biopsies later confirmed.  He has a moderate case of Graft vs. Host Disease (GVHD) of the GI system (colon and esophagus).  We are relieved to have a definitive diagnosis, and Roger started Prednisone therapy today (both systemic and topical).  Because of Prednisone’s potentially nasty side effects when used over the long term (it suppresses an already suppressed immune system, destroys muscle, and can cause diabetes), the oncs want to start to taper him off the drug in a week.  To manage Roger’s dehydration in the meantime, we are increasing the amount of IV hydration we do here at home via the Hickman line — for now, we’ll give him IV hydration, electrolytes, and antibiotics for 18 hours of the day.   We’re optimistic that the combination of IV therapy and steroids will help him feel better within days.
• The long days in the clinic’s infusion room have continued.  On Saturday Roger received a human immunoglobulin infusion aimed at boosting his infection-fighting antibodies.  Roger reacted to the infusion, but the medical team said he had to have the full dose.  So they gave him a large amount of demerol and benedryl through the day to control the most unpleasant side effects.   We hope that he won’t need to go through this procedure for another 3-4 weeks.   Today’s clinic infusion was a heavy dose of magnesium, which caused quite a bit of bone pain.  At times it seems as though every treatment Roger receives causes some sort of reaction or side effect;  he is truly worn out.   
• The results of the bone marrow chimerism analysis, which was run from the recent bone marrow aspiration sample, are now back.  Roger is 100% donor cells!  The cord blood unit from the Italian male baby has prevailed, and there is no evidence of the stem cells from the cord unit from the NY female baby.  The onc says that the progress of the stem cells and Roger’s engraftment has been completely normal so far:  The stem cells engrafted very early for cord blood, and it is normal for one unit of cells to dominate and for the other unit to disappear.   Although we’ve long been fond of Italy as a result of the great skiing and climbing trips we’ve made there over the years, we now feel a deep attachment to the place and gratitude toward the Italian family that gave Roger his new cells.  
• As we’ve mentioned before, relapse is a big concern for Ph+ ALL patients, so we’re counting on the Italian stem cells to control the disease (through the “graft vs. leukemia” effect).  The next test of how well Roger’s new cells are performing will be at the Day 56 bone marrow biopsy.  In general, however, the presence of GVHD suggests that the graft vs. leukemia process is also at play.  So we consider the fact that the donor cells are attacking Roger’s tissue through GVHD of the GI system a sign that they are strong and will take on any emerging disease as well.  
• Roger is reading your messages and they are helping him through these tough days.  He hopes to be well enough to write to you soon.  

Much love,

Lisa, Roger, Amelia and Isabel

Day +32: Results of Post-Transplant Bone Marrow Biopsy

Dear Friends,

• The molecular analysis of Roger’s marrow shows that the leukemia-causing chromosomal mutation is still present, but in much lower levels than it had been in the past.  Although we had hoped that the test would show that the disease is completely undetectable at the molecular level, we are grateful that the transplant process cleared out as much of the disease as it did.  The oncs told us that this is the result they had expected (while acknowledging that it could have been better).  It is not a bad result, particularly given the aggressive nature of Philadelphia positive ALL in general and the the rapid progression of Roger’s disease since his diagnosis last November.
• In light of the test results, Roger will need to get back on oral chemo to control the disease, and the oncs will resume the cycle of infusing chemo into his cerebral-spinal fluid (via the lumbar punctures) as soon as they believe he can tolerate it (or maybe even sooner).   We will also hope that the new stem cells will do their part to attack the disease through the process known as graft vs. leukemia.
• Roger’s physical condition worsened a bit on Wednesday, so we were kept at the clinic until just before they closed the doors for the night (a much better option than the hospital admission our onc had offered).   Yesterday was much the same — a very long day at the clinic which ended with an ok to go home for the night.  Roger continues to receive liters of fluids every day, both at the clinic and here at home, but we’re not quite caught up.  So, the oncs’ goal for today (Friday) and the weekend is to determine whether Roger is suffering from graft vs. host disease (GVHD), in which the new stem cells attack a particular organ (or organs) in his body.  Based on his symptoms, they believe he has GVHD of the GI system and will do an endoscopy and modified colonoscopy (with biopsies) today to confirm their suspicions.  If this proves to be the case, they will start to treat him with the steroid prednisone.   Because Roger has lost quite a bit of weight (the edema Roger mentioned earlier is no longer a problem), the team wants to sort this out immediately.
• I’ll write again soon.  Thanks for all that you’re doing to help us get through this.

With love,
Lisa, Roger, Amelia and Isabel

Day +30: Pulling through a rough patch

• It’s been a rough couple of weeks, but Roger is stable.  He had become increasingly weak and sick at the end of his stay in the hospital and in the week following his discharge, so we spent the majority of this past weekend, as well as Monday and Tuesday, in the outpatient clinic where he could be monitored closely.  We are grateful that we have not yet had to go back to the hospital.
• Roger’s med team has been working to address several problems, including low blood pressure (and its side effects) and dehydration.  He got red blood cells on Sunday and Monday and also got a unit of platlets to prevent bleeding.   In addition to the IV hydration that we do at home, Roger got extra high-speed infusions of liters of fluids over the past few days at the clinic.  
• As of Tuesday afternoon, Roger was still experiencing dramatic drops in blood pressure every time he stands up.  The docs have taken him off all blood pressure medication and hope that his blood pressure will stabilize shortly.   Today a nephrologist at the University of Washington Hospital will assess Roger and determine which (if any) of the four blood pressure medications that he had been on should be restarted. 
• The bone marrow biopsy went smoothly yesterday.  We’ll have the results at the end of the week.  Although we are hopeful that there will be no evidence of the leukemia-causing mutation in his system, the oncs told us last Friday that Roger may need to start back on his oral chemo soon.  
• The bright spot in our week was that a good friend/colleague from our Consulate Peshawar days came to visit.  It felt great to talk about Afghanistan and Pakistan and other things unrelated to cancer.  
• Your support has been a tremendous source of strength throughout this process, and particularly during the rough spells.  Thank you for keeping Roger in your thoughts.  I still feel optimistic every morning that he is about to turn the corner and get beyond some of the more debilitating side-effects he experiences and that he’ll be back to writing soon.

With love,

Lisa, Roger, Amelia and Isabel

Day +25: Adjusting to life outside the hospital

Dear friends,

• Our first few days at home have been peaceful and uneventful.  We have made one or two trips to the outpatient clinic each day, and the doctors tell us that Roger’s persistent side effects and fatigue are typical for a patient who has been through his treatment protocol (four days of total body irradiation, heavy chemo, double-cord blood transplant, ect.).  They also said that unlike his past experiences with chemo, he is not likely to feel better in a few weeks time.  It was their gentle way of reminding us that the recovery will be long and slow and that we must not expect too much in the near term.
• In the coming days, Roger will get approximately 8 hours of IV therapy per day.  Because his IV infusion pump is portable (it fits in a small back pack), he will not be confined to the apt. during the infusions.  The doctors have urged him to start trying to eat a small bit of solid food, but acknowledge that this is easier said than done given his side effects.
• We’ll make brief visits to the clinic both Sat. and Sunday, and next week’s schedule is already full.  On Tues, Roger will have his first post-transplant bone marrow biopsy, which will give us a preliminary sense of whether and/or how much of the leukemia-causing mutation is lingering.  
• The girls had another great week.  Iszy (now known simply as “I” to her Hutch School/apt. building pals) has seen more of Seattle and its beaches than I suspect I ever will because the Hutch School camp, which runs from 10 until 2 each day, takes the kids to a different park or lake each day.   Amelia just completed a week long camp that focused on art from different parts of the world and drumming.  Amelia has decided to accompany Grandma Marjorie back to NY for a few weeks, so on Tues, the two of them and one guitar will fly East.  Isabel has mixed feelings about her sister’s departure.  She says that although she’ll miss Amelia’s guitar playing, she’ll get by for a few weeks and may host a friend or two for a sleep over while Amelia is away.      
• Thank you for your support for Roger.  We need it and are grateful that you all have been here for us.

With love,

Lisa and all

Discharged from Hospital!

We’re home!  

• Following 31 days of inpatient treatment, Roger was discharged from the hospital on July 8th.  We’ll be spending a good bit of every day from now on at the outpatient clinic where the docs will keep a close watch on his healing, look for signs of graft vs. host disease, and monitor his blood counts to ensure that they  keep moving in the right direction.  But we’re cleared to handle IV hydration and medication infusions here at home (via the Hickman catheter), and this will cut significantly the time we must spend in the clinic.  
• We feel relieved to be back in our apt with the girls and my Mom.  I’m sure that being home will help Roger recover his strength faster.  As Amelia observed last night, he has come a long way, but we’ve got a long way to go.   
• Thank you for keeping Roger in your thoughts.  It gives us all strength to know that we have friends and family with us.

Day +20: Cautious Optimism

Dear Friends,

• Roger’s white blood cell and neutrophil counts have grown steadily over the past few days.  In addition, the docs have largely controlled Roger’s blood pressure (with a somewhat complex cocktail of drugs), have converted all but three medications from IV to oral, and seem pleased with Roger’s progress.  
• Things could change at any moment, and we’re on the look out for signs of graft vs. host disease (indications that the new stem cells are fighting Roger’s body).  But if complications do not develop and the upward trend in blood counts continues, I can imagine that the doctors may release us within the next week. 
• I’d like to say that the improved blood counts have made Roger feel better, but this is not yet the case.  The TBI+chemo+transplant, along with all of the meds he must take, have taken a toll.  He is again forcing himself to walk and eat (liquids) and is doing everything within his power to get stronger.   
• We appreciate so much your support and good wishes.  I sense that Roger is about to turn another corner and that he will feel up to writing again soon.    

Signs of engraftment?

Hi all,

• We had the good news today (16 days after the transplant) that Roger is starting to produce small numbers of white blood cells and neutrophils (the kind of WBCs most important for fighting infection).  This is the first indication we’ve had that the new stem cells are starting to function in Roger’s marrow and that engraftment may, therefore, be occurring.  Because Roger has been feeling progressively worse over the past two weeks, this good news was a welcome relief. 
• The medication and TBI-induced side effects persist.  The most annoying of these is called Hand and Foot syndrome, which has made his hands and feet quite sore and walking a real chore.  To address this, the docs have taken Roger off the immunosuppressant drug cyclosporin and substituted tacrolimus in its place.  We should know within 3-5 days whether this change will relieve some of the discomfort.  The team is also continuing to try to identify and treat the causes of his continued elevated blood pressure.  They also switched Roger’s pain medication (again) from IV Dilaudid to oral oxycontin, in an effort to decrease the drowsiness associated with the dilaudid.    
• All in all, we’re feeling hopeful that the healing has started.