Day 61 - 2012, We Bid You Farewell

Great news! Dan's second biopsy came back negative for leukemia cells - no cancer to be found! We are thrilled by the "negative" results  and are finally able to see a light at the end of this 100 day tunnel.  The next hurdle is one last biopsy here around day 80 before the home stretch and long-awaited transcontinental flight back home.  We are so ready.

Our clinic visit this week was uneventful.  The doctor dubbed Dan her most boring patient!  The GVHD rash is managed with the UV light treatment, cream and steroids.  We hang fluids twice per day and Dan follows his rigorous pill schedule, swallowing a cocktail of medication every 2 hours, adding up to at least 20 pills every day.  He has to eat every hour or so to keep up with his appetite (steroid side effect) and spends about an hour per day walking, stretching (yep, Dan does yoga), or climbing stairs to build the muscle that's deteriorated (steroids, again) the last few weeks.  I have become quite familiar with the variety of uses for bleach and find myself sterilizing countertops, remote controls, cell phones, light switches, door handles, fridge handles, microwave handles, and any other handles I can find at least once per day.  I've been expanding my cooking skills a great deal and continue to introduce Dan to a variety of vegetables that he relentlessly turns down.  Alas, I am not giving up.

Dan's immune system is still very immature and not equipped to fight the various germs it encounters, but he can't live in a bubble and we get out as much as we can. Once again, I envision similarities to parenthood as we have our own version of a "diaper bag" we can't leave home without.  We pack snacks, medication, IVs, tissues, chap stick, hand sanitizer, and sanitizing wipes before we step out the door and we make sure we're home in time for an afternoon nap.  We won't have to be quite so cautious forever, but Dan and his new immune system are still getting acquainted.  Our nurse put it like this - Dan and his new blood are like two young siblings in a sandbox.  They argue and throw sand when they're little, inflicting some scrapes, bumps and bruises, but eventually they learn to get along and become best friends.  Right now, the old Dan is still there but with new, foreign, blood running through him.  The "arguing" is flares of GVHD, managed by steroids and other immunosuppressant drugs that keep the new blood from wreaking too much havoc (think fistfuls of sand throwing - and hitting - and hair pulling).  It's a delicate balance between suppressing the new immune system while also allowing it to settle in, hence the 100 day stay and millions of side effects, complications, and issues to manage.  After a time, usually 6 months to a year, the new and the old will live in harmony, then Dan won't need drugs to suppress the new immune system because it will be his.  Dan joked that he and his new marrow will be chumming around at family picnics together in no time.  

The new year starts this week and we couldn't be more excited to say goodbye to 2012 and welcome 2013 with open arms.  We feel more hopeful than ever and know that we've been blessed to get this far.  We don't take a single moment for granted, especially when surrounded by many sad and tragic stories right here.  Cancer touches the very young, the very old, and every one in between and we see it every day.  We see the sadness and we've experienced the fear.  We don't worry about little things because we've been given the perspective that little things just don't matter.  We laugh as much as we can, we hug, we cuddle and we say "I love you" every chance we get.  And when all of this is behind us, when leukemia and "that one Christmas we spent in Seattle" is a faint memory, we'll continue to live this way.  We'll remember what we saw here, the joy, the sadness, the loss, the inspiration, and the love.

So, while I sort of hate you, 2012, you weren't all bad.  At each experience this year, I managed to find some silver lining to remember.  I'll remember how I loved my husband more deeply and how I fully committed to his care.  I'll remember how the most loving, dedicated family supported me and encouraged me to face each day.  I'll also remember my lesson in humility when I graciously accepted the gifts of so many. I'll remember how blessed I was with countless friends, old and new, who lifted me up at every hurdle.  And I'll always, always remember how I found joy from all of you during the hardest year of my life.          

2013, we can't wait to meet you!

Hanna

Day 50 - Joys at Halfway

Here we are, halfway between day zero and 100 and things couldn't be better.  We just got home from our weekly clinic visit and it was the smoothest one yet.  The rash is clearing up since the PUVA treatment (basically a tanning bed - Dan wants a lifelong prescription), the energy is coming back, appetite is full-swing, and spirits are high.  We're going out and doing something every day and working hard to keep Dan healthy.  We had a great visit with Patty, Dan's mom. We showed her around the city, the clinic, and enjoyed some good old conversation.  She spoiled us with way too many Christmas presents, but we aren't complaining! We rang in Dan's 32nd birthday at a local Indian restaurant, which also marked his first dining out experience post-transplant.  We were happy to share that milestone with Patty.  The next routine biopsy is next Wednesday, the day after Christmas, so pray results continue to be clear of leukemia and things keep moving in the right direction!

"December 19, 2012 Day +50, halfway there!"

We woke up Friday to the terrible news of the Sandy Hook tragedy.  Our hearts broke as the story unfolded and we learned the number of children and adults killed at the hands of a ruthless gunman.  It is impossible to comprehend the pain of the affected families and the incredible loss they must feel.  We, along with millions of Americans, prayed for the families and the souls of the victims at Mass on Sunday.  As I reflected, the popular saying "God only gives you what you can handle" came to mind.  To those who have said this to me, thank you for thinking I am "handling this" well; however, there are so many days I wish I could say "I can't handle this anymore" to make it stop, but I know it's not that easy.

We believe that in difficult times, God gives us the strength to face our fears and our grief through the grace of others - our family, our friends, and many we've never met.  We believe we "handle it" because of the outpouring of love, support and prayer we receive each and every day.  We stay strong and "handle this" because we feel loved and because we have purpose, because we are at the best center for this disease and because we have faith.  The only thing we can do during a difficult time is support each other.  We can pray for strength, cherish our loved ones and celebrate little joys wherever we find them.  A little joy is a thoughtful card in the mail, a pleasant conversation with a stranger, or a casual walk on a nice day.  Sometimes we have to get creative to find joy, but we find it.  And we cherish it. And we celebrate it.  So in a time when so many are getting creative to find little joys, please take a minute and pray that we continue to find ours, those who've lost loved ones can begin to find theirs, and truly appreciate yours, rejoicing in them as we grow ever closer to Christmas day.        

Hope you have a merry Christmas full of JOY,

Hanna

Day 42 - Some New Marrow's Debut

I am making my official return to the blog after a couple months away and out of commission in the hospital feeling pretty crummy.  So glad Hanna very beautifully kept everybody posted on the happenings out here in Seattle.  The last 10 days have seen nothing but great progress as I continue to eat better (thanks mostly to Hanna cooking some amazing meals), exercise more and feel better overall.  It is such a wonderful blessing to be in our own Seattle apartment which we have home-ified and Christmas-ified quite festively.  It makes for a better environment to strengthen and become myself more and more everyday. 

Last week we received the good news that the first biopsy showed good results and was negative for leukemia!  We sighed in relief and have a chance now to put those thoughts/fears aside for a few weeks.  The results of my spinal tap were also negative, a wonderful word to keep hearing.  So basically, our full-time job is to manage my pill regimen (more difficult than it sounds) and continue to get stronger.  The gut GVHD is completely cleared up and we continue to monitor and treat a GVHD rash with steroid cream and prednisone.  I've had a series of skin biopsies to diagnose it, increased the prednisone to treat it, and consulted with GVHD specialists who watch closely to keep the outbreak as mild as possible.  Our team assures us that most patients develop GVHD and we can expect it to wax and wane throughout my recovery.  The prednisone works wonders on the rash but is not without adverse side effects.  The balancing act continues between managing the GVHD and medication side effects, but, all in all, I'm doing really well.    

Hanna and I have been enjoying Seattle as much as possible, despite the pretty constant mist - guess that's the Pacific Northwest for ya.  The market and downtown areas are decorated for Christmas which makes everything significantly more jolly.  The Seattle Cancer Care Alliance continues to impress us with their staff, efficiency, and care for their patients and families.  They had a Christmas party for all of the patients on Saturday with hot chocolate, cookies, Santa, a string quartet performing the classics, and a gift for each patient and caregiver.  It was a really nice event that put smiles on many faces, including our own (see below).

Never too old for a picture with Santa - we spared his lap, though

The highlight of this week is my mom's arrival.  She is flying in on Wednesday and staying with us until Sunday.  We are excited to spend my birthday with her, show her the clinic, see some of Seattle, and just spend some nice down time.  We're really looking forward to some good mom hugs, too. 

The next few weeks will be an Advent season like we have never had before, but something about it feels so appropriate and comforting.  This is a time of waiting and preparing for the birth of Christ.  We did our fair share of waiting and preparing for my own new birth with my new cells.  So this time of anticipation and hope has taken on all new meaning this season.  My next bone marrow biopsy is scheduled for day 56 which happens to fall on Christmas day.  They will probably move it by a day or two but there is something inspiring about sharing our own personal moment of anticipation and hope with the culmination of hope that is Christmas day.  This will be a very special Christmas for Hanna and me, as well as all of our amazing friends and family who have supported us, lifted us, and joined us in such an amazing way.  We are so lucky to have so many who have walked every step along with us.  This Advent and Christmas will be one to cherish, one that will change our forever, and one that is inspiring us to know, without doubt, that

ALL Will be Well



"It is the beautiful task of Advent to awaken in all of us memories of goodness and thus to open doors of hope."

Day 32- the Advent of a new man

We have been quite busy the last few weeks so I apologize for the lack of information on Dan's progress.  He promises me he will make his post-transplant blogging debut soon, but I wanted to share the latest first.  Dan responded very well to GVHD treatment and his symptoms cleared up within hours of his first dose of steroids.  He was discharged from the hospital on day 21 to continue treatment at home.  It was an emotional exit as we closed the door to one chapter of our journey and opened the door to the next.  Dan hadn't set foot outside his hospital room in over two weeks and hadn't smelled fresh, albeit rainy, air in almost four. We loaded up with prescriptions and medical supplies galore and off we went.


 

I liken our first night to bringing home a brand new baby.  I imagine that, while you are excited to have your baby home, there is probably some anxiety with the realization that you are 100% responsible for its well-being.  By the time we got home Dan was due for his evening meds so I nervously rummaged through a pile of bottles.  It was impossible to sort them out in my head so I  became overwhelmed and almost regretted consenting to Dan's discharge.  Needless to say, neither of us slept much that night as our heads spun with "what ifs" and a complicated medication schedule.  Groggy and anxious, we headed to the clinic our first day home to meet with the "yellow team" doctors, nurse, and dietitian.  I spent some time creating a spreadsheet to log Dan's medications, IV hydration, temperature, food/drink, and exercise.  Everyone remarked positively about Dan's progress so we went home from an overwhelming day feeling a little more confident and a lot less anxious.  The first few days Dan spent much of his time relaxing and taking it easy while making slow, steady gains in eating, drinking, and exercising to rebuild his strength.

 

We had a blessed Thanksgiving with my brother, Colin and sister-in-law/high school friend, Kathleen who flew to the Pacific Northwest from Alabama. We shared lots of great meals, took some nice walks, drank seasonal Starbucks treats, and enjoyed quality down-time we'd all been craving.  When they left on Tuesday, Dan was eating and drinking about 75% of his normal amount and walking almost three miles a day.  The sun peeked out a few times so we even got to enjoy many of Seattle's best tourist sites! We are so grateful to "the Alabama Gablers" for spending a special Thanksgiving with us that we will cherish forever.     

 

So here we are on day 32 and things are going as well as can be.  Dan takes medication about every three hours adding up to more than 25 pills a day, in addition to liquid medication, IV hydration, and our newest addition, steroid cream.  Some skin rash GVHD popped up so we're applying a cream three times per day.  Between picking up prescriptions, having bandage changes, rashes, questions, in addition to regularly scheduled appointments, we have been back and forth to the clinic at least once every day.  It really is a full time job for both Dan as a patient and me as a caregiver, but that's why we're here.  We have taken a break from our "normal" life to make this our full-time gig, and so far, so good.  We've officially completed one third of our stay here and we're encouraged about the next two thirds.

 

As I mentioned on facebook yesterday, Dan had a routine bone marrow biopsy to determine the percentage of Dan's marrow that is his versus his donor's.  He also had the first of four routine spinal taps with chemo to keep any disease from developing in his spinal fluid.  We won't have results until at least Monday so I will do my best to paraphrase results as soon as we get them.  As always, we're anxious (not worried) about what pathology will find, but we are enjoying the weekend and keeping the "what ifs" out of our minds.  We are all decorated for Christmas and look forward to the start of the Advent season tomorrow, which marks the prayerful beginning of the preparation for Jesus' birth.  It will certainly be a different kind of Christmas, but we have many blessings to share since Dan's new "birth" just 32 days ago. 

 

Hope you all have a Christmasy weekend-

 

Hanna   

 



Day 18 - Expect the Unexpected

The past few days have been stressful, tough, and full of anxiety as we face our first bout with the unexpected.  About a week ago Dan started having diarrhea, a very common (and expected) side effect from transplant treatment.  After it continued for days, he tested positive for a bacteria called C-Diff, another common consequence from extended antibiotics.  Dan started a new series of antibiotics that were meant to clear up the bug and his diarrhea; however, quite the opposite occurred.  The volume continued to increase to a concerning level so doctors started mentioning the dreaded phrase - graft versus host disease (GVHD).  In short, GVHD happens when donor cells attack the recipient and begin to kill cells they don't recognize.  Dan is on medication to help the cells work together, but often there is a battle between donor and recipient that result in some, sometimes very serious, complications.  Yesterday, Dan had an EGD procedure where a camera examined the linings of his digestive tract.  Results confirmed moderate GVHD so steroid treatment started right away.  We're upset that we are facing an unexpected complication, but are grateful doctors caught it early and started treatment right away.  GVHD is a very common complication that is successfully treated in many cases.  Please continue to pray that Dan responds well to standard treatment and "the big d" (as the Lyons family has dubbed it) clears up over the next few days.

In other news, and probably worth mentioning first, Dan has reached a white blood count of 500! He has to stay over 500 for three days in a row to officially officially be engrafted, but we are on day two and optimistic.  He is feeling so much better overall and is currently enjoying a milkshake in his chair watching Notre Dame on their way to 11-0.  Dan is seeing a physical therapist to rebuild his strength and teach us the right way to exercise post-transplant.  The PT quickly learned Dan's competitive spirit when he insisted on more reps, steps and stretches than he was asked.  His mucositis cleared up and he's had a normal temperature for days.  The IV nutrition is gone and there are fewer and fewer bags hanging on his pump every day.  Basically, if it weren't for the GVHD he would be on his way out of here.

We've been feeling the love from all of you through your cards, emails, and facebook posts.  Every day, but especially on the hardest ones, it's great to smile for a few moments when reading the words of family and friends.  My mom surprised us with 90 countdown bags labeled by day and filled with items from our family.  Each bag has a note, comic, picture, or prayer to pick us up and give us a smile.  We love opening the bag each day and guessing who sent each item (something tells me my dad is responsible for the wishbone from family dinner).  The pile is already shrinking as we make our way to 100!

much love and big hugs - and don't forget to pray that the big d goes away so we can go home and spend Thanksgiving with Colin and Kathleen!

H

  

Day 13-Great Expectations

Suffice it to say the last 10 days have been difficult.  The adrenaline wore off and the side effects kicked in, leaving Dan unable to talk, swallow, or even stay awake for very long.  I guess everything just gets harder the longer it goes on.  From a medical standpoint, everything Dan has presented has been expected.  Every day we rattled off our gripes and described his pain and the doctor assured us that she expected all of these to happen so we find comfort every day in that word.  As long as the doctor expected Dan to spike a fever of 101, stop eating, have headaches, diarrhea, vomiting, mouth sores, stomach pains, dry skin and extreme exhaustion I'm okay with it? I think I have to be.  As awful as it is to see Dan this way, the team is treating him with compassion and troubleshooting a million ways to make this whole experience less awful.

I spend my days here rubbing Dan's back, filling his ice packs and trying to find comforting words of encouragement to get us both through it.  Sure enough, we got through it - the worst of it anyway - and on day 11 Dan perked up a bit and began to get some relief all around.  He sat up a little more, used his mouth suction a little less, gave his pain pump a break and was able to talk a tad.  He's still got the low-grade fever, still fending off mucositis and a slew of other ailments, but we're catching more and more glimpses of our guy every day.  I say "we" because my mom is in town! She flew in last Thursday and has been my doting caregiver (who knew I needed one?), cleaning our laundry, cooking us meals, buying us groceries and spending some quality down time with me at the apartment.  We've explored campus, shared some wine, and we plan to head to Pike's Market tomorrow for some original Starbucks.  We couldn't have known it when she booked her flight, but the timing is perfect and I couldn't be happier that she's here.

We got exciting news today that Dan is beginning to engraft, meaning white blood cells are showing up in his blood stream.  He has 80 today and the magic number is 500, official engraftment.  We expect talk of discharge to our Seattle home once Dan nears that magic number, can take his medications by mouth again, and eat enough to satisfy his nutrition.  He is likely feeling better today because his brand new white blood cells are busy inside curing what ails him and doing what they're meant to. Yippee! Again, this is exactly as the doctors would expect things to happen and he is right on track.  He is expected to feel better and grow stronger each day as his white blood cells develop and rid him of the misery from these last 2 weeks. I say it's about time.

My birthday was yesterday and we did some shopping, ordered Chinese, and opened cards at the hospital with Dan.  As weird or different or sad or depressing this birthday was, it also served as a reminder that I am loved.  Thank you to so many who reached out and sent cards, called, texted, facebooked (yes, that can be a verb), and prayed for me in a special way.  I didn't expect to spend my 28th birthday in the hospital, but I see the little blessings that my mom could be here, I had more cards than ever to open, Dan started to feel better, and we're moving in the right direction.  I look forward to spending my 29th birthday with healthy Dan and I expect this all to be behind us.

Onward and forward from here on out.  The worst is behind us.  The cells are coming in and Dan is doing just as expected.  Let's find comfort in that word and continue to pray for ALL to be well.

              

Day 4

Today is day 4 post transplant and Dan is hanging in there.  The last few days have been a "coming down" of sorts from the excitement of the infusion and a reality check that this is going to be hard.  The morning after his cells were infused the side effects began to show themselves, but we were high on adrenaline from the night before.  Each day Dan has experienced a slow decline in strength and we are learning about the most notorious side effect - mucositis.  I hate mucositis.  It is a very painful thinning and inflammation of the mucosal linings in the mouth through the digestive tract and right down through the other end.  As you can imagine, it is becoming difficult to eat, swallow, and talk.  Dan can't support his own nutrition now through eating so he's hooked up to some IV nutrition and hydration.  This is totally normal and even expected with the treatment he has had.  Dan's nurse hooked him up with a PCA pump with a personal morphine supply and a button to push whenever he needs some relief.  As usual, Dan is impressing the doctors and nurses tackling at least 3 walks per day, sitting up out of his bed, and rinsing his mouth out more than they ask.  He's also simply being Dan, which is making our room a pleasant place to be.  We've made friends with our nurses and are passing the time watching movies and, of course now that it's the weekend, football.

I learned the hard way what happens when you don't eat or sleep right for a week straight - you catch a cold and get banned from the transplant floor.  I had to make myself scarce for a few days and leave my husband in the hands of the nurses; no offense, but I bet I can get him to rinse his mouth and take more walks than they can! I pouted for a bit but was convinced that I had to go.  With the moral support of my caregivers, my mom and sister, I rested at home, bought some multivitatmins, drank a gallon of orange juice, and whipped myself back into shape pretty quickly.  I've been sleeping at home now and making sure to keep myself healthy so I can be the best caregiver I can be.

Things are getting harder but we still continue to look forward to the engraftment and life with new marrow.  I think the next 10 days or so may be a blur of naps, walks, rinses, and morphine for Dan, but he'll get through it and so will I.  We're really looking forward to a visit from my mom next week to help pass the time and rejuvenate our spirits!

Thank you, as always, for Keeping up with the Lyons.