"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!



Love,
Hanna 


     

   

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 happening.......music 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"

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

xo,
Hanna

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! 

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

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.   

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,

Hanna