Sunday, December 30, 2012

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!


Wednesday, December 19, 2012

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,


Monday, December 10, 2012

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."

Saturday, December 1, 2012

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-

Saturday, November 17, 2012

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!



Monday, November 12, 2012

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.


Saturday, November 3, 2012

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.

Wednesday, October 31, 2012

Day 1

He did it!  Today is day 1, which brought along with it relief, excitement, and joy for both of us and some nasty side effects for Dan.  The chemo and radiation from last week are finally catching up to him and he woke up with a pounding headache, vomiting, a sore mouth, and no appetite.  Luckily, between some great medications and pretty good coaxing from yours truly, he's eating enough to satisfy the team for now and keeping up with his schedule. He's resting a little more today but is doing a great job taking walks and moving around.  What a guy :)
So now we begin the journey of 100 days until we are homebound for the east coast.  Dan will get much sicker before he gets better because he has no immune system right now to help his body run normally.  His donor's cells are wandering through his marrow and will eventually figure out how and where they fit.  The chemo/radiation killed what existing cells he had, leaving Dan in a compromised state.  The donor cells usually take up their new residence in about 14 days when we'll see his blood counts start to rise (engraftment).  He will then begin to feel better and better each day.  Until then, Dan has to do a good job of letting his team know how he's doing and they'll treat him as best they can.  They have lots of ways to make him comfortable and have been wonderful already.   

Last night was beautiful and special and one that we will remember forever.  We got to actually see all of our family from Camp Hill to Pittsburgh to Chicago and San Fransisco and share in the amazing experience.  Technology is amazing.  Everyone sang "happy birthday" to Dan as the cells infused.  There wasn't a dry eye on either side of the camera! Here are some pictures of the big night. 

Our Camp Hill family making a celebratory toast
Having a moment - the stem cells are in the bag!

 Thanks for all the prayers and well-wishes yesterday.  We are so blessed - hugs from Seattle!


Sunday, October 28, 2012

"Come Monday"

"Come Monday, it'll be alright."  As soon as the first few bars played at the Jimmy Buffett concert last week Dan and I had an "aha" moment.  Our eyes welled up and I'm sure we got some weird looks, but it certainly brought about some emotions in us both.  Pretty soon, everything will be alright and we are ready.

We are here at the University of Washington Medical Center getting acquainted with the transplant unit and settling in for about 3 weeks.  Dan had 3 days of total body radiation this week that he tolerated pretty well until Thursday morning when he started getting some chest pain.  Long story short, after hours in the emergency room, tens of tests with negative results (thank god), we landed ourselves at the hospital a day early.  He had some pretty scary blood pressures and heart rates so it was just as well.  Everything was back to normal during the night Thursday and we were right back on track Friday for chemo.  Dan got two doses of chemo on Friday and Saturday and is taking today to rest and gear up for the big day on Tuesday.  Turns out his stem cells will arrive too late tomorrow night so they will infuse them on Tuesday during the day.  His cells will still "come Monday" but his official transplant day is now October 30th.  We were kinda bummed at first to wait another day, but feel like the ball is already rolling and we're on our way.  Please think of us in an extra special way on Tuesday - tomorrow we'll be resting; although prayers always welcome!

Welcome to bone marrow transplant 101:  Dan is having an allogenic stem cell transplant aka bone marrow transplant from an unrelated donor.  The only known information about his donor is that she is 21 years old.  The donor's stem cells will be infused through Dan's central line - the same way he gets chemo, etc. now.  The infusion takes anywhere from 2-12 hours and will take place right in his hospital room, me by his side.  The medical team will keep an eye on him and frequently take his vitals, but it should be very similar to the many blood transfusions he's had before.  Dan is also on an immuno-suppresant drug that prevents him from rejecting the donor's cells.  After the stem cell infusion, we wait for the cells to "engraft", in other words, for Dan to accept the donor's cells.  This process takes anywhere from about 10-21 days.  During that time, he will experience significant side effects from chemo/radiation and lack of blood cells such as mouth sores, nausea, vomiting, fatigue, etc.  Once engraftment takes place, he will start to feel better and gain back some strength and energy.  He can be discharged from the hospital once his blood counts start to improve and he is eating, drinking and walking about the halls, hopefully in about 3 weeks. 

It is hard to describe how I feel about this day finally being here.  Dan and I have been married now for 2 1/2 years, all of which Dan has had cancer.  He took chemo therapy pills on our wedding night and every single day until his relapse.  We packed his pills on our Costa Rica honeymoon, lugged them camping to the Fo, on spring break adventures, beach vacations, and countless weekend getaways.  Dan taught freshman Econ at GW after having IV chemo and a spinal tap.  We celebrated our second anniversary over cafeteria dinner at Georgetown Hospital.  He has always handled whatever side effects showed up with grace and sincere positivity.  We have never let cancer get in the way of life, in the way of family time, taking adventures, or making memories.  We live with cancer.  But now it is time for cancer to stop.  No more packing pills, no more Ensure shakes, no more staying home on Thursday night to take Methotrexate pills.  Time for Dan to finish school and time for us to plan our family.  We have so many plans and cancer is not one of them.  So I guess I'm feeling a lot of emotions about the transplant.  It is a day I hoped never to see, but I am more than excited to kick cancer out of my life for good.  I am scared of seeing Danny sick, tired, and maybe depressed.  I am overwhelmed about the long-term care that we face for years to come.  I am sad that the person I love so much has to endure such pain to get rid of this disease.  But I am grateful for modern medicine and this chance for a cure.  I am excited to start a new chapter in our marriage and I am hopeful that this is it.  We are almost there.  Our countdown can finally begin and our new life is here.

I will try and update the blog at least once a week with Danny's progress.  Please kick up the prayers and continue to send well-wises and cards.  We are making our room a little homier with some cards already.  Dan is doing well and ready for the big day.  He is still rocking his signature grin; though, maybe partially due to Notre Dame's big win again last night.  Thanks for sharing this journey with us.

 ALL will be well!




Friday, October 19, 2012

ALLmost There

We have been in Seattle for over two weeks now and are starting to get used to the Seattle mist (fall has finally arrived here).  We have found out that true Seattleites never carry umbrellas so we scrapped them in an attempt to fit in.  We rented a car and explored the area much more which has been lots of fun and made for good adventures.  Between exploring waterfalls, finding new restaurants, and obsessively watching Game of Thrones and the Tudors, I had many tests, exams, and appointments in preparation for the transplant.  Everything has been going well and I have been meeting all the necessary requirements (despite all the havoc that chemo and a few college parties has wreaked on my liver, it's still in great shape!) .  The only surprise was a pretty horrible and extremely itchy rash from a drug allergy.  It covered my arms, chest and back but we figured out the culprit and it is all disappearing nicely.  This afternoon Hanna and I will meet with the doctors and nurses one last time to go over all of the tests from the last few weeks and officially consent to the long awaited transplant. 

Next week I will have three days of outpatient total body radiation and then two days of inpatient high dose chemo, followed by a day of rest and then the first day of the rest of my life, a new immune system, and the beginning of a cure.  I have known this day to be necessary ever since my relapse in March and have been hoping for it ever since.  I am fearful but mostly hopeful and joyous.  The selfless donation of a 21 year old girl somewhere is giving me the opportunity to restart my body and continue my life.  I don't say "restart" my life because it has definitely never stopped.  Hanna and I have been living and loving life through every step of this most recent bout.  We have been sad, cried, and, at times, danced for joy (literally), but life didn't stop.  I continue to be inspired by the love, dedication, and spirit of Hanna, our families, friends and the many that have gone from strangers to partners in this fight.  We will remember this time forever and I have no doubt it will impact the way we live every single day.

So, the countdown is on and we are so ready to dive in and come out on the other end with a cure.  The next few months are going to be very challenging but we know that every day will be one step closer to coming home and one step closer to our cure and getting back to normal.   The thoughts, prayers, and well wishes from everyone truly help us through the tough days and give us strength when we need it.  As of this evening, the transplant will be officially to our ears.  We are going into this last round swinging, with renewed energy and uplifted spirit!

Much love, thanks for journeying with us.  I know that....

ALL Will Be Well

"All we have to decide is what to do with the time that is given us"

Friday, October 12, 2012

Déjà Vu

Good morning from our new, temporary home.  It's Friday afternoon on the east coast and our family and friends back home are probably gearing up for a beautiful fall weekend.  We are also looking forward to a break from appointments and a free weekend to sight-see and take advantage of the rain drought in the Pacific Northwest. Dan and I have yet to feel a drop in this "rainy" city and are beginning to believe its dreary weather reputation is nothing more than a ruse!

We have been here almost two weeks and we apologize for the lack of posts.  Our first week here was a rush of appointments, intimidating doctor consults, and deja vu as we followed the exact same schedule as our July visit.  They really have the system down to a science - we are back on the yellow team with the same set of nurses, social worker, nutritionist, etc. as our first visit.  The doctors rotate each month and aren't associated with a team color, but the other team members remain with you for the duration of your stay.  Dan had a million tests/procedures to make sure he's fit enough to handle the transplant, including a lung function test, a heart test, a dental appointment, spinal tap, various blood tests and even a psychological exam.  The most nerve-racking and important test in our first week was the final bone marrow biopsy to confirm remission.  Our doctor let us know in less than 24 hours that results were good, making Dan officially a transplant patient.  We felt a weight lifted from our shoulders because we had made it past the block that was consuming our thoughts since the August relapse.  Until hearing those words, we didn't know if we'd ever have the chance at a transplant, and we know that so many people don't.  Needless to say, we were more than relieved and overjoyed to be given the opportunity.  Our deja vu is over as we enter uncharted territory. 

My grad school roommate and dear friend, Lisa and her husband Ryan visited us this week.  They are a huge blessing and great company, support, fun, and provided a nice distraction while we wait and wait (and wait) for the transplant.  Some of the highlights included sight-seeing at Alki beach, a ferry ride, and a second wedding anniversary dinner celebration for a beautiful couple.  Lisa and Ryan rented a car and were able to help us move from the temporary housing to our permanent apartment when we got the call on Monday.  We can't help but think this is God's way of walking at our side.  The timing could not have been more perfect, and we are blessed to have such wonderful people to call friends.  Thanks, Larsons!

The tentative transplant date is October 29th with chemo and radiation (conditioning) beginning sometime around the 23rd.  It is undecided if Dan will be admitted for the conditioning or not.  He will definitely begin his hospital stay for the transplant and is expected to be there for 3-4 weeks.  After that, he'll have almost daily visits to the clinic for the next 70 days or so.  More info on that to come.  The transplant, of course, brings with it a new set of fears and the risks are overwhelming.  We know we are in the best hands with experts who can give Dan a cure.

We took some classes this week to educate us about what to expect, how to keep things clean for severely immuno-suppressed patients, how and what to offer patients with a variety of nutritional needs, and how to emotionally support a post-transplant person.  While we are scared and anxious, we felt comforted and strengthened by the room full of people that are in our shoes.  It's easy to feel like you're the only one sometimes and that you're alone in your struggles.  When I looked around at the different people from all over the country, going through exactly what I'm going through, I realized that I'm not alone.  We aren't alone.  There were spouses, siblings, and parents with their children learning how to take care of their "patient" - they're loved one.  Everyone in that room so desperately wants what I want, a cure for their Dan.  I feel up to the challenge and will do whatever I can to help my patient get through this. 

Keep the love coming to our new address:
525 Minor Avenue North, Apt. 101
Seattle, Washington 98109


Friday, September 28, 2012

Back Where We Started

What'd you get for 54 days on the east coast after earth-shattering news that your cancer has, yet again, relapsed and your plans for a cure must be postponed?  You cash in 23 days in the hospital (for Dan), 23 days on the O'Connell's couch (for me),  8 days of chemo, 3 biopsies, and 2 nights in a Georgetown hotel monitoring precarious temperatures fearing infection (Even with no immune system Dan managed to fend off an infection, my hero.  We actually enjoyed somewhat of a vacation complete with room service and movies!)   When not partaking in the aforementioned activities, we spent countless days and nights with family and friends, lifting our spirits, eating right, laughing, crying, WAITING, and making plans to get back to where we started.

So, here we are, back where we started. Since March and the first relapse, we've been planning for Sunday. We knew Dan needed a transplant, that there would be chemo, biopsies, risks of infection and ultimately, re-location for treatment.  We didn't know there would be another relapse with subsequent chemo, biopsies, infections, and a move back in with our parents.  However, all of that brought us to today.  It brought us to this remission, this final remission, and a chance to hear that word "cure".  Dan gained back every pound of the 15 he lost, he looks great, he feels great, and he's more ready than ever to handle the beating he's about to take.  We're completely and utterly traumatized by our last experience in Seattle, but are entering this with restored strength and renewed hope.

We're flying out Sunday, the 30th from Harrisburg and land in Seattle just in time for some Sunday evening football (luckily the Eagles are the night game).  We'll settle into the temporary housing until our first appointment on Tuesday, October 2nd.  We'll get our work-up schedule with various tests, classes, meetings, a biopsy, and spinal tap leading to the tentative transplant date - October 23rd.  I think once we have good results of the biopsy out there we'll finally relax a little, knowing that the transplant is officially a go.  Until then we'll be holding our breaths in fear that the cancer will come back. As much as we'd like the transplant to be tomorrow, we understand that the process is complex and we are trusting the experts to take care of the timing.  All we can take care of is Dan, making sure he goes into the transplant as strong, healthy, and mentally prepared as possible.  So that's what I do.

We are on the waiting list for the permanent housing and will send out that address as soon as we have it.  We are sure to be lonely and anxious the first several weeks, so we'd love to hear from all of you.  We love hearing "normal" things and catching up on the happenings from home, so please send notes our way!  For now it's best to send things to Patty Lyons at 527 Fairway Drive, Camp Hill, PA 17011.  She'll send our mail to our temporary address so as not to anger the postal service with a 4th address change in 2 months.

Signing off for the last time in PA.  Looking forward to writing the next post from Seattle! 

Thursday, September 13, 2012

Strength Restored, Hope Renewed

We're teaming up on this post from our usual spot on 2 Bles at Georgetown with some chemo and fluids dripping from my pump.  A lot has been going on since our last entry, but finally we can share that ALL is well and there is good news all around.  My last visit in the hospital was cut short after the doctors confirmed I didn't actually have an infection, so I went home just in time for my brother-in-law, Tyson's wedding to his beautiful bride, Christy.  The whole fever thing was a result of chemo and neutropenia (the low white blood cell count and compromised immune system) and my body working extra hard to get back to normal.

We've been doing a lot of waiting these days - for results, for phone calls, for plans.  Last time we wrote, there were two biopsies and a whole lot of anxiety between us and a phone call to Seattle docs to get back on the transplant schedule.  The first remission results came from a teary-eyed doctor Broome to us, our moms, nurse-turned-friend, Dawn and friend-turned-doctor, Jimmy. There wasn't a dry eye in the room as we shared hugs to celebrate.  I can't even describe the relief and sense of hope that resulted. We suddenly had appetites and enjoyed a dinner together on campus.  Coincidentally (I believe), my fever broke and I was discharged the next day.  I tried to convince Dr. Broome and Jimmy it was a stress-induced fever, but they politely disagreed.   We came back to DC on Tuesday for a follow-up biopsy to see how my marrow was producing cells and make sure it learned a thing or two from the most recent chemo sesh.  Everything continued to look great so we got in touch with Fred Hutch in Seattle to get the ball rolling once again.  They contacted my donor and set up a tentative schedule, which will include some more tests, another biopsy, spinal tap and radiation.  More information TBD, so stay tuned!  The tentative transplant date is October 18th and we couldn't be more excited.

The highlight of going home earlier than expected was going to Tyson and Christy's wedding. It was amazing and inspiring to spend the day with family and friends and to celebrate a beautiful sacrament.  It meant so much to be there and had as much positive effect as any bag of chemo.  I thank Tyson and Christy for pulling some last minute strings to get me to the reception.  Our parents have been so accommodating letting us stay in their homes during this transition.  I hit the golf course with my father-in-law Bob, even convincing him to ride in a cart (amazing what the cancer card can get you).  We had a great time, though I am pretty sure I doubled his score.  I gained some weight back, likely thanks to my mother-in-law Wanda's exquisite shrimp scampi and other restaurant quality entrees, as well as an outing to Friendly's with my mom, Patty and her continuous smorgasbord of snacks.  We have also been spending lots of quality time with our siblings and niece and nephews.

Looking back it almost seems like our 'setback' has been a blessing because it provided us with all of these memories and rejuvenating times with our families.  I wouldn't trade being at Tyson's wedding, holding the youngins in our family, being the first 'non-parent' to meet Faith Mariel O'Connell, watching Hanna's friendship grow with the hospitable O'Connell clan, and feeling the constant love, support, and prayers from far and wide.  It inspires us and strengthens us.

I am finishing up some "chemo lite" that ends tomorrow and should hold me over until the transplant in October.  We'll spend the next few weeks getting my strength up and making plans to re-locate once again.  We're on the waiting list for housing and are expecting phone calls and schedules from our transplant team at the Hutch.  The thought of moving again is overwhelming, but we're so ready for this change and, ultimately, a cure.  We are looking forward to taking big steps, always knowing that ...

ALL Will Be Well

"Faith and hope lead us to love and in the end all will be love"
--Julian of Norwich

Friday, August 24, 2012

Better Safe than Sepsis

It's me again, sharing the last two weeks' chaotic experiences in our world.  I'm writing to you from my usual spot next to Danny's hospital bed as he sleeps to the sound of his trusty pump running a variety of antibiotics and fluids.  Why are we back in Georgetown Hospital, you ask?

Two Mondays ago we heard the news that the chemo regimen in Seattle wasn't working and that we'd have to explore other options to get Dan's leukemia back into remission.  We met with our doctor out there who was, shall I say, no Dr. Broome, and filled us with fear, sadness, and PANIC.  After a brief phone call with Dr. Broome, my sister, and my mom (the usual suspects), Dan and I packed our apartment and we took the red-eye home to Camp Hill.  In a mere 12 hours, we were home and greeted by our smiling moms in the Harrisburg airport.  We were exhausted, traumatized, upset, and worried, but instantly knew we made the right decision in coming home.  After some rest and family time, two days later we were back at Georgetown meeting with our familiar team of doctors and nurses who gave us hope and offered a reasonable regimen to fight off the cancer.  

The chemo lasted 5 days and is a type that treats leukemia differently than previous therapies.  His leukemia has become resistant to "standard" treatment and has outsmarted, in typical Dan fashion, the usual chemo therapies.  He slept a lot those days and experienced some of the nausea, vomiting, and other unpleasant side-effects we so commonly associate with chemo.  The wonderful nurses took care of Dan and made sure that both of us were as comfortable as could be in this disruptive place.  Did I mention we sublet our apartment?  Our friend's cousin is taking care of our place while we are away so Dan and I were left homeless for our short stay in DC.  Luke and Meghan O'Connell so graciously offered me their home on campus in Georgetown, so I was able to get a good night's sleep and fresh cup of coffee every morning just a few steps away from the hospital.  We were also around to see sweet little Faith Mariel O'Connell in her first hours of life and congratulate Luke and Meg on their second child.  The hem-onc unit is right next door to labor and delivery! Little ones lift the spirit and spending time with 2 year old Clare and baby Faith rejuvenated our hope every day :)

Dr. Broome gave us the okay to head home to Camp Hill on Tuesday and we spent a day and a half enjoying my parents' empty house.  The Gabler clan was on vacation at the beach so Dan and I relaxed utilizing the tivo, blender, refrigerator, one big bed for the both of us and all things a home has to offer.  As is the drill when going home with a compromised immune system, Dan diligently took his temperature and closely monitored himself for any possible signs of infection.  Sadly, yesterday morning Dan developed a low grade fever and some chills, so we hopped in the car back to Georgetown where we now sit.  We are waiting to hear if Dan has an infection, but in the meantime he is being treated with antibiotics.  We didn't want to come back to Georgetown so soon, but as my witty husband said yesterday, "better safe than sepsis" - SO TRUE.  The last thing we need is another weekend in the ICU.  We're glad we're here.  The biopsy will still happen today and we will still get the results Tuesday. 

We aren't looking at this as a set-back, just a shorter "vacation" than we expected.  Go figure, you get infections when your immune system is shot.  We would have liked to avoid this, but Dan is in good hands and we'll put this behind us just as we've done so many times before.  We're nervous and anxious about the biopsy today, about the results coming Tuesday, and this brewing infection, but we continue to believe that a transplant is in our future.  School starts back next week and I won't be joining my friends and colleagues, but I am so blessed and fortunate to be able to take the time off to take care of my Dan.  There is no place I'd rather be than right by his (bed)side.   

Monday, August 6, 2012

A Word from the Wife

I'm taking over this blog entry to share the latest updates from our escapades in Seattle so far.  Believe it or not, we're starting our fifth week here and I wish I could say the time has flown.

Let me bring you up to speed.  We spent our first few days getting acquainted with the transplant team, the doctors, nurses, social workers, pulmonologists, cardiologists, and many patients and caregivers living in the SCCA house.  Our world was shattered when, on our 6th day here, we were interrupted in radiology for an unscheduled meeting with our doctor on the transplant team.  He shared with us that the routine biopsy they performed 3 days earlier showed 17% leukemia cells and that his cancer had, once again, relapsed.  This made Dan ineligible for his transplant and is postponed until the leukemia is in remission.

The last 4 weeks have been a whirlwind.  We were shuffled to general oncology with a new team and a new plan.  Dan was put on a chemo regimen immediately that has been consuming much of our time.  We've been enjoying ourselves as much as we can, catching a mariners game, taking walks, playing games, eating at interesting and fun restaurants, watching 5 seasons of Friday Night Lights, and becoming coffee connoisseurs at the never-lacking coffee shops around here (it really is true).  We moved into the long-term housing and have settled into our 1-bedroom apartment.  Since chemo has begun to effect Dan, we've been laying low at home cherishing our time together and I've been stepping up to my caregiver duties.  Through trial and error and a few sleepless nights, we've mastered a successful combination of home remedies and medicine that settle his restless legs, relieve his aching bones/joints, and soothe his nausea.  I've also become an expert smoothie-maker so Dan gets all the nutrition he needs and doesn't lose weight. Dan has been through this so many times and he's pretty good at just dealing with feeling "chemo-y" as he says, and I admire him for that.

Today we got some more bad news.  The biopsy from Friday showed that the leukemia is resisting chemo.  Unfortunately, he has developed some immunities to therapy because he has had them before, so we are consulting with doctors tomorrow about how to proceed.  SCCA has the top transplant center, which is why we came here 4 weeks ago.  Since the relapse and Dan is being treated for leukemia again, we are looking into a center in Houston (MD Anderson) or possibly coming home to participate in a clinical trial or a new cocktail of drugs he hasn't had.  We are far from home and rely so much on our family and friends for strength, so coming home sounds amazing to us right now.  We'd love to find a trial somewhere close to home or have treatment at Georgetown to get Dan ready for the transplant. But, we are prepared to go anywhere.

We don't know what lies ahead and we are devastated by this news.  We're exhausted from this lifestyle of waiting, hoping, and praying, but we know that we have to muster up the strength to keep on keeping on because the road ahead is long.  I love Dan with everything, and through sickness and in health I will love him and cherish him.  Yes, this is not the 2 years I had expected when I married him, but I wouldn't trade it for anything.  We have spent virtually every second together since we got here, and we've fallen more in love every day.  He's the most amazing man I've ever known, and I am so blessed to be his wife.

Thanks for your continued positive words of encouragement, faith, hope, and love.  As Dan has said so many times on here, we are leaning on all of you to help us stay strong.

ALL will (still) be well,


Monday, July 2, 2012

ALL matched up

A week or so ago, Hanna and I came home to an overnight letter from Seattle Cancer Care Alliance (SCCA).  We tore it open and were so pumped to read that Be The Match had found SEVERAL perfect matches for my bone marrow.  This was such a huge relief and an important hurdle to clear before we are able to move on to the transplant in Seattle.  We reread the letter about a dozen times to be sure that we were reading the right thing.  I knew that it was likely to find a match, but it was a good feeling to actually read the words.  It is pretty remarkable to think that somebody's decision to have that mouth swab and get on the registry is leading to a life-saving opportunity for me.  I am very grateful for that person's decision and the decision of so many who have supported me through this by registering and encouraging others to register. 

The other benefit of finding a match rather quickly is that they were able to cancel the "while we wait" chemo treatment that I was scheduled to get at Georgetown.  Instead of having another week of chemo here and two weeks in recovery, we will be heading to Seattle sooner than we thought and starting the transplant process.  The date of our first meeting out there is July 11th so we will be flying out and  settling in on the 9th.  It is just quite overwhelming to think that one week from today we will be getting on a plane to head west for four months and that the next time I am back on the east coast I will have new marrow and be that much closer to a final cure and the end of all this craziness.  I assure you there will be quite the party!  The most overwhelming part before we go is arranging all of the insurance, housing, and flights and the mounds of paperwork that go along with it. It has been a pretty big headache with phone tag and nobody really being able to answer questions, but, I guess, in a way it has been a distraction from dwelling too much on the transplant.  It is hard to wrap my head around what the next four months will be like, but I am so comforted to know that Hanna will be by my side and will be my teammate for every step of those four months......definitely makes the whole ordeal less scary. 

The first three weeks in Seattle will be filled with tests to make sure that I am healthy enough to go through with the transplant......EKG's, pulmonary tests, bloods tests, biopsies and that kind of thing.  This is all stuff I have been through before (pretty sure I could give myself a biopsy at this point) so I am not too worried.  I won't have any chemo so I will be pretty strong which will give Hanna and I an opportunity to check out the city a little bit and enjoy ourselves.  I am going to suggest climbing Mt Ranier to the docs but I have a bad feeling about what their answer may be.  At the end of July, I will receive 3 days of total body radiation which destroys all of my bone marrow.  This leads up to the transplant which should be about August 2nd or 3rd.  Its pretty amazing that the donor/my new best buddy will donate the marrow which will be flown to Seattle and infused into me all in the same day.  The transplant itself is a pretty painless procedure and is done through the central line already placed in my chest (like a regular blood transfusion).  I won't feel much and I will be able to hang out in the room with Hanna while it is happening.  After that, I will be in the hospital about 3 weeks for some chemo and close monitoring to see how my body accepts the new marrow.  Once my body begins to reproduce new marrow on its own, I will be discharged with daily outpatient visits while I recover and grow stronger.  If all goes according to plan, we should be back on the east coast sometime in early to mid November....just in time for what will be a very meaningful and true to its name Thanksgiving. 

I know that was a lot of info but I just wanted everyone to know the general plan so that we can feel like we're going through every step together even though we are so far away.  We know that we will not be alone and that truly makes it so much easier to step into this battle and be confident that...

ALL Will Be Well

"We make a living by what we get, but we make a life by what we give."

Thursday, June 14, 2012

Back From Sunny Seattle

Hanna and I just returned from Seattle yesterday and are still in recovery mode after a quick journey from coast to coast and back.  I was discharged from Georgetown after a week of chemo on Friday and then on Sunday we headed to the Evergreen State for our Monday consultation and tours of the Fred Hutchinson Cancer Center which is a part of the Seattle Cancer Care Alliance (SCCA).  After a smooth flight we rented a brand new red Ford Fusion to cart ourselves around Seattle.  We were impressed with the SCCA house lodging, which is a part of the Cancer Center and an apartment complex for patients and caregivers.  It has a  zen garden, media room, library, common lounges and each apartment has a small kitchen.  The people were great and it was a perfect place to get some good rest before a very long day on Monday. 

Monday started very positively when we met an older gentleman on the shuttle who was back for his 7 year follow up after his bone marrow transplant.  He had great things to say about the center and the whole transplant process.  This guy really was inspiring and helped fill us with all sorts of good positive vibes.  The clinic is an extremely efficient and well-oiled machine that cranks out transplants like crazy.  Our first appointment was with Dr. Paul Martin for our initial consultation.  He is a brilliant doc who has been working in bone marrow transplants for over 35 years; however, he did not have the warmest bedside manner.  He was definitely a statistics guy and spent the first good hour dwelling on the percentages associated with transplants and going into way too much detail about the technical aspects of what exactly takes place.  He didn't give us any information that was new; it was just his matter-of-fact way of talking about numbers that was extremely overwhelming and very depressing.  After a whirlwind of numbers and details, he told us about all the wonderful benefits of having the transplant in Seattle.  This place has been doing transplants since they were invented and all of the doctors and nurses focus 100% of their time on the care of transplant patients.  The whole building is designed to give people who need marrow transplants the best shot possible.  After a tough start to the day, Dr. Martin echoed a thought that we have had since the beginning of this whole journey.  He said, "For you, percentages do not matter.  You will either be 0% or 100% and there is no reason that you will not be the 100%".  We're hanging onto that.

After meeting with the doctor, we met with a financial representative who was wonderful and will help us through the mountain of insurance paperwork and everything along with relocating.  Then a nurse gave us a tour of the clinic which included a library, cafeteria, many lounges, a kitchen stocked with food and drinks for patients receiving treatments, and a business office where you can use computers, printers, fax machines and whatever else you might need while you are there.  Around every corner was another person welcoming us and making us feel like we would be taken care of and loved during our time there.  It is inspiring and hopeful to know that our care will be so comprehensive and that there truly is a building full of people that will help us through every step.  Knowing that all of the patients there were going through similar treatment gave me a new sense of hope that we'll all be fighting this together.

Having enough cancer talk for the day, Hanna and I were ready to explore Seattle a bit before heading back to the airport to catch the red eye back to DC.  Developing our habit for beating the odds, we had a beautiful, clear, and sunny day to check out the city.  We walked around Pike Place Market with drinks from the first ever Starbucks, ate kabobs while catching some sun in a beautiful park overlooking the water, and took the touristy trip to the top of the Space Needle.....which was extra amazing because of the clear day.  We had great views of Mt. Rainer, the entire city, and all of the distant mountain ranges.  The last stroke of luck for the day came at the airport when we got moved into the exit row for the long flight home which translated into actually being able to sleep all of the way.

For now the search is underway for a suitable bone marrow donor.  Being of northern European descent is an advantage since the matches are tied to ethnicity, but it is still like trying to find a needle in a haystack.  It is so important to have a massive pool of potential donors so that everybody that needs a match can be paired.  If you have not joined the marrow registry yet, it is really simple and can be a lifesaving choice (I can't stress that enough).  My match finding process should take 4 to 6 weeks and, in the meantime, we will be back in DC waiting and continuing to get chemo at Georgetown to keep me in remission.  If a good match is found, we could be headed out for the 3 to 4 month process sometime in July.

This whole situation continues to be terrifying, overwhelming, and exhausting; yet, at the same time, it has affirmed the power of prayer, the importance of hope, and the amazing force of love in this life.  The love of my beautiful wife, my family, my friends, and complete strangers continue to force out and overpower the sadness and fear when they try to creep in.  It gives me hope and makes it clear that my success will be 100% and that.......

ALL Will Be Well

"Say you were standing with one foot in the oven and one foot in an ice bucket.  According to the percentage people, you should be perfectly comfortable."

“Love is the foolishness of men, and the wisdom of God.”

Thursday, June 7, 2012

A Bedside Update from Georgetown

Since I last wrote we have been speaking with people from the University of Washington and the Fred Hutchinson Cancer Center out in Seattle to make plans for moving forward.  The first step is to head out there for a consultation.  My amazing bride Hanna and I are leaving on Sunday for a quick one day meeting where we will meet everybody in Seattle and get a better picture of what will happen next and where we will be spending 3 or 4 months.  We are really excited because it will make this whole next leg much more real (that and we will get to see the first Starbucks and maybe toss a fish or two around the market).  We will meet with doctors, nurses, financial representatives, the donor search team, and take tours of the outpatient and inpatient centers as well as the long term housing options that are affiliated with the hospital.  It will put us in a much better place toward knowing what we are about to step into. 

In the meantime, Dr. Broome, as well as the docs out in Seattle, want to make sure that my leukemia stays in remission so I have been admitted at Georgetown all week getting another round of chemo.  This is more preventative than anything but it is the same regimen of drugs that I received last month here at Georgetown.  The timing of our permanent trip out to Seattle depends on how quickly an unrelated donor can be found from the bone marrow registry and how quickly everything gets set for us out in Seattle.  After we get back from our consult, I'll recover for a week or two from this chemo followed by at least one more round here at Georgetown.  Ideally, after that next round of chemo, things will be ready in Seattle and we will be able to head out sometime in July.  It feels good to know that all these balls are rolling and that we are getting closer to a final step and a FINAL CURE.  Until then, patience, prayer, perseverance, and positivity is the name of the game.  The odds are slim of being a marrow match with somebody so the system runs best for everybody if there are tons of people registered to be donors.  It really saves lives and is not much of an ordeal for the donor.  If you haven't, I encourage everybody to look into getting typed so your name gets on the registry (it's a simple cotton swab on your mouth - totally painless).  The registry is the resource that helps save people's lives all over the world.  How cool would it be if my situation helped save someone's life who needs a transplant just like me?  Get more information about becoming a donor at Be the Match Registry here:

I can't say enough about the support system that has helped Hanna and I through every step in the last 3 years of my battle with leukemia.  Since June 8, 2009 when I first got the news, our support has never wavered.  We've had visitors, meals, cards, phone calls, and a massive amount of love sent our way.  These are the things that make the day to day manageable and inspiring.  A huge thanks to my cousin Vikki who has organized a fundraiser that will help us with our expenses as this battle heads west to Seattle.  Her support and the generosity of everybody who has donated is overwhelming, and we are forever grateful.

Well, my day at the hospital is passing along with excessive amounts of the game show network and crossword puzzles so I guess I better get back to this episode of Lingo!  I will be discharged tomorrow and then off to Seattle on Sunday!  Much love, God bless, the fight goes on and......

ALL Will Be Well

“Abide in peace, banish cares, take no account of all that happens, and you will serve God according to His good pleasure and rest in Him.”

Tuesday, May 29, 2012

Cocktails and Remission

First of all, Happy Memorial Day to everybody.  It was a beautiful weekend and I hope everybody got to spend it with family and friends, but, most of all, we should all take time to remember the heroism of those soldiers who were never able to come home.  We owe them a debt of gratitude that can never live up to their sacrifices.  Thank you to all who serve and have served in the armed forces.

So, I will start with some great news.  On Friday, Dr. Broome let us know that the chemo worked amazingly and that my cancer is back in remission....where it belongs.  This was a piece of great news because it was a fear that I would never be able to return to remission.  When leukemia relapses after an initial remission, it is much more difficult to get into a second remission because the leukemia cells develop immunities to the chemo and are often difficult to kill.  So, the first round of chemo worked and my cancer is officially gone and out of my system.  The unfortunate thing is that there is an extreme likelihood that since I relapsed once, I would relapse again without further treatment.  This is why they can't just let me go even though all the cancer is gone.  The best bet for a long term cure is a bone marrow transplant.  The remission was critical, though, because a transplant will not be successful unless the leukemia is in remission.  This means that we can finally look toward the next big step, which is getting the transplant at the Fred Hutchinson Center in  Seattle.....I have already broken out my 1995 Pearl Jam/Nirvana mix tape in preparation!  The transplant center should be contacting us this week to set up a consult in the near future where Hanna and I will fly out  and make a plan for this 100 day process. I will likely receive another round of chemo here at Georgetown to make sure I stay in remission while the Seattle people find a donor and set things up.  The news of achieving this remission was a fantastic way to start the weekend and was the best we could have hoped for after only one round of chemo.

On another happy note, four of our amazing friends organized a happy hour fundraiser to help Hanna and I with many of the extra bills and expenses that this ordeal has brought.  Justin, Alison, Trisha, and Jodi went way beyond expectations with Cocktails for a Cause.  It was a happy hour at a local bar where so many of our family and friends were able to gather and support us financially, emotionally, and just with good company.  It was overwhelming and inspiring to be surrounded by such love and goodness and we cannot begin to thank the  four of them and everybody else who attended or supported the event.  It was yet another reminder of our extreme blessings and the strength that time with loved ones provides. 

Hanna and I were also able to make it home to Pennsylvania this weekend which was healing in its normalcy.  We visited with our family and friends, swam in the neighbor's pool, barbequed, watched sports, and just enjoyed being home for the long weekend.  It was the most active I have been since recovering from the infection I had and, for the most part, I was able to hang in there and be myself and almost forget about all of this cancer nonsense for a few days. 

Now we are waiting to hear from the Fred Hutchinson Center to plan the next steps of this journey.  The past week has inspired us with the continuing outpouring of love and energized us to face what is next.  Thanks you for the love and prayers.....they are what keep us going and make us certain that...

ALL Will Be Well

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival."

Wednesday, May 23, 2012

A Trip to the ICU

It has been a very eventful month since my last blog.  Cycle II took about 5 days with tons of chemo, but caused minimal side effects other than fatigue and more hair loss.  I was sent home to recover until a biopsy a few weeks later after my body had time to recover.  On May 3rd, I had a regular check-in with Dr. Broome and went home, only to go right back because I had a temperature of 101.5 (I’m instructed to call and head to the hospital if its over 100.5).  I was pretty bummed that I had to be admitted, but not worried (I needed a break from the hospital meatloaf).  This “neutropenic fever” happened twice before and meant spending 4-5 days in the hospital on antibiotics.  That evening, I got extreme chills that I was unable to shake even with a zillion heated blankets. Quickly, there were about a dozen nurses and doctors surrounding the bed.  My blood pressure fell drastically, my heart rate climbed dangerously, and my temperature spiked to over 105 degrees.  The medical team acted quickly, but they remained calm and reassured us that I was going to be fine.  Our friends Dr. “Jimmy” McCloskey and Mary Ellen, who work at Georgetown, both happened to be there visiting with us at the time and sprung into action with the rest of the team.  They were so helpful and added to our peace of mind.  Luke happened to stop by for a visit and was able to stay with Hanna.  It made everything much less scary to be surrounded by our friends during those horrible moments.

Later that evening, I was transferred to the ICU where they gave me medication to increase my blood pressure.  I spent Friday-Monday there and found out that my infection was “sepsis” (bacteria in the blood) and I had experienced septic shock. Shana, my mom, and Hanna’s parents came for the weekend to support us and made everything feel much more manageable. I spent another week on the "regular unit" with familiar nurses, doctors, techs, food service people, and ministers, who all seem like family at this point.  I was much more comfortable and things were less tense.  Hanna went back to work and visited me each day after school.  My blood counts recovered and I was fighting the infection like it was Apollo Creed so they sent me home on IV antibiotics for another 10 days.  After a few rough nights hanging the drugs at 3 am, we learned how to care for the infection at home and spent over 100 hours of the next week hooked up to the IV.  The antibiotics seem to make me extremely tired (not to mention recovery from the infection) so I've been sleeping and resting a lot.  I've also been enjoying Books 2 and 3 of the Hunger Games on my new Kindle as well as copious amounts of daytime television and an emotional over-investment, with little payoff, in the Phils, Sixers, and Flyers.

That pretty much brings us to yesterday when I had a bone marrow biopsy to see how effective the first round of chemo has been.  Since I can't have a transplant until the cancer is in remission, the results of this biopsy are crucial.  Dr. Broome said the marrow looked clear and promising, but we won't have the official results until later this week.  Please say a few extra prayers that the results come back as remission so we can make plans to head to the west coast in a few weeks.  We are planning to re-locate to Seattle, Washington for about 100 days to have the bone marrow transplant at the Fred Hutchinson cancer center.  They specialize in transplants for ALL and have some of the best success rates and most experience in the country....a nurse told us that the Princess of Saudi Arabia had a transplant there so it must not be too shabby.  We are very blessed to be able to consider this option and look forward to taking this next step on the journey to a cure.

I know I have said it before, but I have to mention again that everyone's thoughts, prayers, and kind words and gestures have truly inspired us to put all our effort into this fight.  Not gonna lie, this has been the scariest leg of the race so far, sometimes leaving me to wonder how I am going to get through this. But those moments are overshadowed by moments of hope, inspiration, and love brought on by the kindness and love of everyone on this journey.  With the help of our medical team, our strong faith, and the outpouring of support from family and friends (and friends of friends we don't even know), we know that we can do this.  and we WILL do this. And no matter what......

ALL Will Be Well!

"Hope is a good thing, maybe the best of things.  And no good thing ever dies."

Saturday, April 21, 2012

Psyching up for Cycle II

Here is the latest: I have been at home for the last two weeks being sick in the comfort of my own home. After the first week of chemo, I was scheduled to recover for a couple weeks but they were pleased with the way that my body was holding up so they let me go home on Holy Saturday. It was so beautiful to be out of the hospital for Easter Weekend. My mom and brother came down and most of Hanna's family was able to come down and we had an amazing and blessed Easter in DC. Luke offered his place in Georgetown and we were able to eat, pray and hang out together as a family. It was wonderful to go home at the end of the day and lay down in my own bed. So, since then, I have been laying low at our apartment as my blood counts and body have been recovering. I have remained mostly symptom free and keep myself infection free and out of the hosptial. Hanna and I have tried to stay somewhat normal and made a trip to see Hunger Games and dinner with my mom, aunt and cousins. It has been so much better for my mental state to be home with my beautiful wife doing everyday things. I have lost a little weight but my appetite has stayed pretty normal so I think that is just the chemo taking its toll on my body.

The worst part was having to shave my head again. I was starting to lose my hair so we decided to preempt it and shave it before it started getting everywhere. The upside was that, at the barbershop, there happened to be a woman that overheard my story and she shared her own battle with cancer and how she knew exactly what I was going through and promised to keep me in her prayers. She gave me strength at a particularly low point. It amazes me how good people are and how, when you need it most, someone is there to pick you up. So, now I am a baldy but I keep telling myself that it is just one step closer to entering that Vin Diesel look-a-like competition.

I have been back to the hospital a couple times to have my blood checked and, as expected, I have pretty much lost all of my immunity which means no fresh fruits and vegetables (so, basically, my normal diet) and Purell everywhere I go. But, it has seemed to work since I have stayed relatively healthy the last few weeks.

I will be re-admitted on Monday to start Cycle II of the first part of this chemo regimen. It will be a little easier since I already know the routine and some of the nurses and techs but I am pretty sure the 'corner pocket' is not a guarantee. I will only be receiving chemo for 3 or 4 days so hopefully they will let me come home again to recover but they can't make any promises about that so it is just a wait and see for now.

We have received so many cards, messages, and emails. They always come at the right time and we can't thank everybody enough for your thoughtfulness and kindness. It is very meaningful give us continued strength in tough times.

Keep the prayers coming and ALL Will Be Well,


"God created shadows to better emphasize the light"
--Pope John XXIII

Wednesday, April 4, 2012

The First Steps Toward Healing

So I have now settled into my corner suite (they keep calling it the corner pocket) here at Georgetown. We checked in on Monday and underwent a lot of testing and preparation. I had a central line put into my upper chest so they can draw blood and give medicine easily without having to prick me. It is convenient for that, but just a pain to have something that is constantly an invasive reminder of all this nonsense. I had a bone marrow biopsy to get a baseline of the current state of the disease so that they can compare this to my marrow in a few weeks. These are never fun but, since I was actually staying in the hospital, they gave me two doses of morphine and one dose of dilaudid so I was pretty loopy and in a different universe by the time they actually did it, which I greatly appreciated......I'm sure I was the source of a few good laughs, particulary some air smooches I was sending to Hanna with a dozen other people in the room. Then they started pumping me with fluids and getting my body ready for chemo, which started on Tuesday. The first 3 days I am getting this drug that is given every twelve hours for 3 days for 2 hours at a time. So this will be thru Friday. To go with that, they have to give another drug that protects my bladder because this particular chemo is harsh on the bladder. I appreciate their looking out for my future urinary habits, but it has kept us pretty tethered to the room since it runs for 24 hours straight. The doctors, nurses, cleaners, cafeteria workers, interns, and everybody have also been amazingly nice and helpful. They also have a smile on their faces and are willing to do anything for us.

Life has brought us to this point and we have to just fight away, keep praying, keep planning our future, keep laughing, and staying strong. I will most likely be admitted here for about a month and we are of the mindset that the best way to stay positive and strong is to take it day by day, so that is our current approach. My mom and Hanna's family are going to come down this weekend and hopefully have a normal Easter dinner. My good friend Luke and his family live on campus at Georgetown and have offered their place so we will have a place to hang out and eat and I think they are going to let me go for a few hours from the hospital so that should be nice. Other than that, we have had a few visitors and are going to have many more to share the time with over the next few weeks.

I have no words to describe the outpouring of love from family and friends that has been evident over the last week. It amazes, inspires, and motivates me to think of all these amazing people praying for me, thinking about me and battling with me. It keeps us strong, keeps us smiling, and helps trememdously with this fight. I am in awe at the loving spirit of those around me. Hanna, my beautiful and amazing wife, blows me away with her support, her hugs, her smiles, her attitude, and her love. She is at my side through all of this and I can't imagine not having her. She keeps me strong and we handle all of this as a team. I love her more all the time (for example, she brought me reeces pieces and coffee today). Our families have also been walking this terrifying walk with us and we all help each other which makes it more bearable. It is a blessing to know there are many who we can lean on.

So, that is what has been happening. I am anticipating that we will fall into a bit of a routine at the hospital and with the chemo and it will become the new normal. The side effects should kick in more and more over the next couple weeks, but those are hurdles we are ready for and will handle when they happen.

Keep praying for the success of these helps and is very reassuring. Thank you for reading this and being a part of helping us kick cancer to the curb.

God bless, much love, and

ALL Will be Well

"This is a mountain we hoped we'd never have to climb; but it's not Everest and it can be surmounted" -- Dr. Broome

Friday, March 30, 2012

In Need of Prayers

This is the post that I hoped I would never have to write. I received a phone call on Tuesday afternoon from Dr. Broome saying that my leukemia has returned and that I have relapsed. The wind was taken out of me and I could not speak nor would I know what to say. Dr. Broome was very sympathetic and tried to remain positive. Basically, the next step is to be admitted to Georgetown Hospital for up to 6 weeks to receive highly intense chemotherapy that will hopefully put my cancer back into remission. After that, I will briefly recover and then head to Hershey, PA to receive a bone marrow transplant. This is going to be a long, terrifying journey but one that we must take. I promise to continue to put 100% of body, mind, soul, and faith into this journey and I ask that everybody doing this promises to do the same with me. We can beat this and we can get through this.

I am not going to write too much now but I will write next week from Georgetown. Please pray for the success of this treatment. Please pray for Hanna, who is my strength and amazes me with every word she speaks. She is my rock and I love her forever. Please pray for our familes and friends. With all this prayer and love flowing, we will fight this fight and win this fight. I am struggling to find good words right now so I am just going to leave it at this for the moment. I plan to lean on family and friends just like I did before so thank you for being there to help. I love you all and,

ALL Will Be Well,

"Love Never Fails"