Alan’s health update 7-12-2010

Nothing to report, as healing and strengthening continue unabated; I’ll have a more substantial post in a week or so.  I’ve mostly been thinking about my dear friend Dennis McLean, whose birthday was yesterday but who passed away suddenly from heart problems last November.  All who knew him miss him.

Alan’s health update 7-2-2010

I apologize/am happy that these updates are coming fewer and further between.  That’s a good thing! A lot of my symptoms are generally improved, and I have many good days in a row.  Most frequent complaints are leg pain and general muscle weakness, the latter from my use of prednisone, which is what has really done a great  job on my other symptoms, such as GI tract problems.

The main thing that throws me for a loop is that I’ll get a little cocky, thinking I don’t have to go back to the clinic for a number of days, and then bingo, I get a phone call of some undesired blood chemistry results and have to have extra tests or visits or saline infusions.  Still, the setbacks have been limited, and more than offset by the chance to have more exercise and visitors, and just plain being at home instead of being at the hospital, where I have not been since Father’s Day.

It’s been a pleasure having Jay and Rachel in the house since they moved up from Oakland one week ago.  They really spark up the conversation around here! They’ve been active, especially with apartment hunting and Rachel’s job-hunting. Plus their presence has allowed Susan to get away from the house more, and even get downtown to work twice last week.

Prospects look good for getting up to Lake Stevens for our regular Hatlen family Sundays this summer. We love getting together with the extended family.

We also love getting your comments to the blog posts; thanks for all of your support and encouragement!

Family at Lake Stevens in 2009

Alan’s health update 6-26-2010

Alan here, with help from Susan. It’s been almost a week since our last post, and in this case no news is definitely good news!  I was released from University Med Center on Fathers Day.  After a slow day on Monday, every day has been very pleasant for the most part.  I started  taking Prednisone and two other steroids last week to battle Graft vs. Host Disease (GVHD) in my gut (essentially diarrhea), and it has been totally successful.  Enough so that after just 7 days I’m starting the slow process of weaning off of Prednisone. 

I am in very good spirits, because every day that passes comfortably is a day closer to a final successful outcome.  So far, all of the problems that have cropped up have responded to treatment even better than we expected:

(1) My disease progressed from MDS to an agressive kind of leukemia, but one round of chemo treatment beat back the leukemic blasts;

(2) An Aspergillus mold infection took hold in my lungs, but the medication got it under control in time for the transplant;

(3) The transplant regimen was tough, but by Day +28 the donor’s cells were 100% engrafted and my blood counts have been coming up on their own.

(4)  Gastro-intestinal GVHD appeared 10 days ago, but is under control thanks to Prednisone.

The latest hurdle is that my blood-sugar level is too high (250 instead of the desired range of 62-125), and so now I’ve learned to prick myself before each meal to test the glucose level in my blood, and Susan is coordinating my diet to include protein with frequent meals and to keep track of carbohydrate servings.  As the Prednisone dosage is reduced, hopefully this problem will take care of itself.

We’ve had some beautiful, sunny, warm-but-not-too-hot days, and have enjoyed neighborhood walks with a number of friends. This acts as a real tonic.

Two other superb tonics: our kids.  Yesterday Jay and Rachel arrived from Oakland and they will be staying with us for a month or two until they find an apartment.  Rachel is already having some success job hunting, and Jay starts UW law school in September.  And today we were lucky enough to finally meet the parents of Brian’s girlfriend Kolby, who are visiting from Palo Alto.  We had a delightful sunshiny BBQ dinner on the rooftop deck of Brian and Kolby’s apartment overlooking Lake Union.  It was a quintessential summer afternoon in Seattle.

Meeting the Merilos

Alan’s health update 6-20-2010

Happy Father’s Day!  We’re thinking of our fathers (and our sons) today, thankful for the way our fathers raised us and for the way our sons have turned out to be such fine young men.  We love them all. 

After four nights at the hospital, Alan’s back at home this afternoon.  He’s been diagnosed with acute graft-versus-host disease (GVHD), a complication that affects 80 percent of stem-cell transplant patients with unrelated donors.  It can involve the skin, the liver and/or intestinal tract.  Alan’s is “Gut GVHD.”  He’s getting steroids, the standard treatment – a high dose of Prednisone and two topical steroids that coat his gut when he swallows them.   No fun.

Alan with his dad and little Brian in 1985

Alan with little Jay in 1986

Baby Susan with her dad in 1954

Alan’s health update 6-17-2010

First, Happy Birthday today, Brian!

Second, we celebrated our 33rd wedding anniversary last Saturday with a walk in the Japanese Garden at the UW arboretum. The plantings were beautiful, the koi fish were out in force, and there were about a dozen turtles sunning on the rocks in the big central pond. We appreciated this wedding anniversary more than any before. When we said “I do … in sickness and in health, for better or worse …” so many years ago, of course we didn’t understand what that would be like. But things just get better and better, regardless of health. We’re taking one day at a time, and treasuring every one.

Now for the FANTASTIC news you’ve all been waiting for:

Late last night, the medical team showed me the results of Monday’s bone marrow biopsy and it was even better than we hoped. The pathology shows no sign of leukemia at all, by microscope or by flow cytometry. And Alan’s chimerism is 100% — meaning that his bone marrow and peripheral blood are now 100% the donor’s. So the donor’s stem cells have successfully engrafted and all of Alan’s diseased stem cells have been crowded out by the donor’s. ALSO, we learned that yesterday’s chest CT scan showed further resolution of the Aspergillosis in his lung.  ALL GOOD NEWS, and a great birthday present for Brian!  Twenty-six years ago today, he was born early in the morning on Father’s Day.  That was Alan’s favorite Father’s Day ever!

Did you notice I said “late last night”?  Yes, Alan’s back at UW Med Center as of 12:30am so they can get the blood levels of his medications straightened out and evaluate his “gut” Graft-Versus-Host Disease (GVHD). After being a champion eater for so long, Alan’s appetite is gone and when his diarrhea wasn’t letting up and he was running a low-grade fever I called the clinic and was advised to take him to the hospital.  He’ll be getting IV hydration and this morning the G-I doctors will use endoscopy to check his gut from both ends.

Celebrating our 33rd!

Just kids!

Alan’s health update 6-10-2010

Alan’s big fat lower lip is starting to settle down and is almost kissable again. His appetite is fine and once the mouth sores are gone he’ll be back to a regular diet. His lower legs aren’t as swollen as they had been and so his weight is back  to normal.

Best of all, Alan’s blood counts are continuing on an upward trajectory. He has daily blood draws at the SCCA clinic and as recommended by my mentor (Diane R.) I faithfully chart his Hematocrit, White Blood, Neutrophils, and Platelets. With no transfusions since May 30 and June 1, the rising blood counts are an excellent indication that his donor’s stem cells are engrafting as they should. That’ll be confirmed by Monday afternoon’s bone marrow aspiration, where they’ll check the “chimerism” (the ratio of Alan’s original stem cells to his donor’s).

Although he’s still battling fatigue, we manage to get out for short walks two or three times a day, and today had a lovely walk along Lake Washington down at Magnuson Park. Alan’s B-Positive attitude had been flagging in the past week or two, but like his blood counts it’s on the rise.

Magnuson Park is one of our favorite flat walks, with plenty of benches for viewing Lk Washington and the Cascades

Public art called "Swords Into Ploughshares" - Fins from decommissioned Navy submarines from the 1960s are arranged to look like a pod of Orca whales

Alan’s health update 6-6-2010

After 13 days at UW Medical Center, Alan was sent home today. Hooray! He hasn’t had a fever for close to a week, and the bacterial infection that caused the fever has been identified and treated. It seems to have started with a bad mucositis infection that left his lower lip ugly, swollen and scabbed over. That’s why the photo we’re sharing this time is a rear view.

Alan won't miss walking with an IV pole now that he's back home.

Alan’s neutrophils were up as high as .640  a few days ago, but have gone back to .410 the past two days. The doctors say this kind of variation is expected, and the counts are likely to jump back up again over the next few days.  The platelet count has continued to go up on its own, which is a good sign about engraftment of the donor’s stem cells.  The medical team is keeping a close eye on Alan’s blood counts, with daily blood draws at the out-patient clinic.

Many thanks to my sister and brother-in-law, Barb and Roger, who cleaned our house this morning in preparation for Alan’s homecoming.  And to everyone who’s been sending good wishes for Alan’s recovery.  It takes a village!

Alan’s health update 6-1-2010

Good news! Alan’s counts are starting to inch up! His white blood cells have gone from 0 to 0.13 to 0.17 in the last 48 hours, and his neutrophils have gone from 0 to .020 to .070.  Yay!

Not to be a party pooper but to put things in perspective, the normal range for white blood cells is 4.3 to 10, and for neutrophils it’s 1.8 to 7.0. We’re expecting the daily blood draws to show a continued rise in Alan’s numbers over the next several weeks.

Little Alan is ready to party!

Alan’s health update 5-30-2010

Nobody said this would be easy. Alan’s still locked up in leukemia-jail at the UW, probably until his blood counts start coming up. In the meantime, he’s been hit by plagues experienced by many (most?) stem-cell transplant recipients: fevers, mouthsores that require a liquid diet, skin rashes that just don’t quit, a terribly swollen and now scabby lower lip, puffy cheeks and throat, low hematocrit and platelet levels that have required transfusions every few days, leg pain that has been diminishing the last three days, and a 20-pound weight gain this week due to fluids.

Alan is a rock-steady patient, always thankful to his caregivers and almost always willing to choke down high-calorie, high-protein shakes made with Haagen-Dasz ice cream, Greek yogurt, whole milk, protein powder, etc. His goal is 2500-2900 calories and 135 grams of protein per day. The protein is supposed to strengthen his vascular system, which has become more porous in the past few weeks and is allowing fluid to leak out into the surround tissue, causing swelling. I’ve become an expert on the calorie and protein counts of various things available from the hospital kitchen and mix up 4 milkshakes for him during the day.

The expert medical team tells us every day that Alan is doing great, so we’re just trying to chillax (chill and relax) and wait for his white blood cell and neutrophil counts to rebound in the coming days.  That’ll mean that our wonderful donor’s stem-cells are beginning to engraft and settle into their new surroundings.

Breakfast of Champions

Today we said good-bye to Alan’s sister, who helped out here for 8 days.  Tomorrow is Memorial Day and we’ll pause and think of all those who died in service to our country. And those who continue to serve, too.  Thank you!

Alan’s health update 5-25-2010

Susan here.  It was good while it lasted, but this afternoon Alan was readmitted to the hospital because of low blood counts and a fever, with mouth sores and leg pain thrown in for good measure. It’s typical for transplant patients to spend time in the hospital, and at least there they can keep him comfortable and keep a watchful eye as he faces a difficult phase of recovery before his donor’s stem cells begin to engraft in the coming weeks. 

The good news is that Alan’s sister, Vicki, arrived from Virginia on Saturday evening.  My sister, Barb, and her family picked Vicki up at the airport and delivered her safely, along with homemade cookies, a meatloaf, salmon (thanks, Craig), toothpaste, and a magazine.  Within three hours of her arrival, “Saint Vicki” had made a grocery list, gone shopping, and was busy doing dishes and bleaching the countertops with her brand-new Playtex rubber gloves. She’s also learned to operate Alan’s ambulatory IV pump, attended the home-care and food-safety classes at SCCA, rubbed Alan’s aching legs first thing in the morning, and generally been good company!

Alan has really appreciated all of your thoughtful notes, funny cards, and other kind gestures.  Thanks for keeping us in your thoughts.

Vicki pitches in