Day 18 - Expect the Unexpected

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

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

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

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

H

  

Day 13-Great Expectations

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

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

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

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

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

              

Day 4

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

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

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

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