Monday, September 14, 2009

One Year Later....

Hard to believe we have all come through the first year of this journey!

Donovan is still breathing with borrowed lungs,and each breath continues to amaze. There have been bumps and hurdles, each challenging, each overcome a day at a time.

Life isn't perfect, we have traded a fatal illness for a chronic one, as explained when we first checked out lung transplant as an option last May, (not realizing how soon we'd qualify)...but perfect or not, it is life, and life is good!

Since I last blogged, Donovan has completed a summer as a camp counsellor at Candle lake. What a great opportunity this was. He was able to gain confidence and strength while building into the lives of kids and young adults. While he didn't rest as much he could have, I'm sure he wouldn't have changed a thing! He formed great bonds with friends, and had a million memorable moments. We are so happy for him! He even took up a new sport, skim-boarding!

The summer, however, left Donovan with a lingering cough, which didn't respond to 2 rounds of oral antibiotics. A CT scan at the end of August revealed pneumonia in his left lung. This didn't show up on X-ray weeks earlier, so I hope we caught it before it becomes big trouble. We are on our 3rd week of IV to treat this pest...and it is slowly responding, but the drugs have laid donovan quite low...little appetite, fatigue, the usual reaction to super-strong drugs. A follow-up check in a few weeks will hopefully prove the bug gone. A side note...his lung function two weeks ago, a whopping 95%!!! yay!!!

A whole year...another birthday, Donovan now a man of 21! What can be said, except a heart-felt thank-you, for prayers, for friendship, for the hands that helped and the hearts that cared. We couldn't have done it alone...

While we face another year, each day is lived with the realization that it would not have been possible without the gift that gave him life...and each day, whether good or not so good, is one more we would not have had without that gift. I can't at this point imagine how we would have coped had lungs not become available that day, one year ago. So glad I don't need to dwell on that possibility.

I have learned so to live in this moment, take it and embrace it, it is a moment I won't have again...and this makes each day with Donovan is a good one...whether we are in the midst of medical issues, or kicking back on a beach.

Once again we head into fall. New schedules crowd the calendar squares, and fat tomatoes are turning a lovely crimson in my garden box. The slightest hint of gold etches trees in the park. Darkness falls a few minutes earlier each night, even thought the warmth of summer thankfully lingers on. Fall is a season of transition, marked by glorious colors and a new rhythm as life picks up and carries on after the lull of summer. It beckons us to slow down, breathe a little deeper and feast on what is freely given to enjoy all around.

Fall will always be, for us, a season of miracles...although our second year of transplant awaits,an open door into the unknown, for today we remember a gift, freely given, one that has seen Donovan through, and made believers of many.

May each of you remember the everyday miracles in your life, whatever they may be...just as we give thanks for this day, and all those leading up to it. And to our donor family, who no doubt mark this day with heavy hearts, we pray for comfort, and for them to know a little of the joy they have given others.

Brimming with gratitude,


Saturday, March 14, 2009


Okay, a collective deep breath! Turns out, it's only a cold! A narrow escape from U of A hospital yesterday. Donovan slept almost around the clock, slept most of the trip to Edmonton, then awoke feeling soooo much better, and looking tons better too, I might add, despite our early appointment time. The main thing was his throat being much less sore, so he could actually do his "blows". The pulmonary function tests indicated that his lungs were still fine, 90% in fact, down only 1% from last time.

On checking in with x-ray, they were able to do his CT scan at the same time, instead of having to wait till his 1 pm appointment, so that was a bonus. His CT was again improved, but that nasty little fungus isn't all gone. So the inhalation treatments continue, but we can handle that, for now. The drug takes 15 or so mins. to complete, and is irritating on the throat. The dr. says that at this point, 3 months after the start of treatment, it is difficult to say what is fungus on the pictures, and what is scarring from the infection. Even though there will be scarring, the "proof is in the pudding" when the breathing tests show Donovan's lungs to still be 90%, while fighting a cold!!! I think we can live with that!

As for Donovan's incredible "Shrinking" act....losing 1-2 lbs./week, they took him off one drug, and want to wait and see....there is a drug he could take to stimulate his appetite, but they are reluctant to start it yet. So, we'll keep an eye on the scale, and keep passing the plate to Donovan, who celebrated yesterday's great appointment with a Double Whopper! Hopefully this will turn around for him, and the numbers will go up!

We're 'kicked out' for 6 weeks if we're back before then, it's strictly for "cuddling" reasons...our adorable little Elijah, and of course, his parents!!!

We made our way to Katie's house after visiting with the docs, and attended a baby shower at her church. Elijah tolerated all the passing around until the very end, when he displayed his great lung capacity for one and all to hear!!! A little overtired, I think. He's grown some since we last saw him, but sure hasn't outgrown the ability to charm one and all! We also had the pleasure of meeting lots of Katie's inlaws, and realizing just how loved they and their baby are!

Well, off to Leduc (Katie's) for more Nana-time, and also to the mall to shop with Amy. The weekend goes entirely too fast...we hit the road for home tomorrow.

Enjoy our wonderful break in weather...surely spring is coming, and thank-you for your prayers and part in our narrow escape from hospital!


Thursday, March 12, 2009

Life on a Tightrope...

Walking a tightrope is sometimes how I feel what life is like post-transplant....and on days like today, it gets a little scary.....

Donovan began to complain of a sore throat on Tuesday. Yesterday was better, today he is definitely sick. The most concerning part of this is the colored mucus he is coughing up from his lungs, and the pain on coughing. His throat is much more sore. Good thing we have an appointment with the docs in Edmonton tomorrow. This is our first illness (other than the fungus) since transplant, and the unknown is always intimidating and anxiety provoking.

So, we are packing up and heading out. We can expect a bronchoscopy, a CT scan, bloodwork, pulmonary function tests, etc. etc. We can also expect a hospital stay and IV drugs for a couple of weeks if this is a bacterial infection....I hope not, but I'm being realistic.

I would ask you to please pray that this infection is only viral, that it responds quickly, and does no damage to Donovan's precious lungs!!!

We also have a baby shower for our new little Elijah, tomorrow night at Katie's church. I sincerely hope we are able to attend (Amy & I anyway...)

I will update here as we figure out what the plan is. Laurier has begun yr. 2 of his journeyman's (carpentry) course this week, so is up to his eyeballs with schoolwork for the next 2 months. He is coming with us, but has to be back is never dull it seems.

Thank you all for your love & support,


Thursday, February 26, 2009

Buds and Blossoms

It's been a while since I sat to chronicle the happenings in our life. And there are a few things to mention...

First of all, Donovan has been well, and we are always happy to mention that. He's been working hard since his checkup two weeks ago...exercising, taking his meds and eating!!! The only trial he has experienced has been his weight loss. His blood sugars tend to trend downward rather drastically after his morning exercise session and we think that his metabolism is revving too high, burning far too many calories and resulting in weight loss. He can't seem to keep up with his body's need for fuel to be stored for later...just the opposite of my problem!!! He has lost a few pounds since the IV treatment of his fungus and the effect it had on his we'd like to see this turn around. We are awaiting an appointment with a diabetic specialist and will hopefully sort this out.

And...we are very happy to announce we are now grandparents to Elijah Kurtis Drader, son of our daughter Katie and her husband Kurtis, born February 18,2009 at 6:10 pm, weighing in at 7lbs 9oz. He is off the charts on the cuteness scale but we are a little biased. He has a full head of dark brown hair, and large eyes, wide open from birth as if to say, "what's all the fuss about?" There was a little floor-pacing on the part of a certain Grandma during the whole birthing process...which was over 24 hrs. from start to finish, but he arrived none the worse for wear, which is more than can be said for that certain grandparent. What an exhausting process!

Katie & Kurtis took their little boy home less than a day after birth, and he's been ruling the roost since. They're both a little on the tired side, but did manage to go to church just 3 days later, so I think they're doing all right. Elijah's arrival gives us one very good reason to make the trek to Edmonton a little more frequently!!! What a tremendous blessing, for which we are so thankful. Uncle Donovan was on hand, camera flashing constantly to take in the first hours of the little guy's life. We managed to get in a few days of cuddling before having to return home for less exciting things like work and school. Thank goodness once again for the technology of Skype, which will hopefully keep us closely connected between in-the-flesh visits! We have another appointment with the transplant docs on March 10, so we hope to make a few days visit and take in some baby cuddling again.

This has certainly been a season of extreme emotions for us. Marveling at baby Elijah's perfect fingers and tiny toes, his round, pink cheeks, the velvet of his newborn skin with its intoxicating scent brings home the knowledge that he is God's masterpeice, as are we all.

The tears flow freely with gratitude that Donovan is alive to meet his little nephew and see the circle of life complete in this next generation. Our double-lung miracle will be revisited each time a milestone occurs in our lives, the welcoming of a new family member, the blowing out of next birthday's candles, greeting each season in its turn...for these things we utter a prayer of thanksgiving and realize the sanctity and preciousness of life, the privilege of an unbroken family tree, gratitude for a new little bud.

Winter is blowing hard once again just outside the front door tonite. Perhaps this is its last frosty breath, one final foray into the -30 range. We welcome early mornings now with a dim glow of daylight instead of the pitch black that makes cold so much colder. Supper is eaten before the sun winks below the horizon in a scarlet blaze...the lengthening daytime gives us all a little more energy, time to plan for a summer we will try to make the most of...bikerides by the river, fishing (for sure!),watching buds blossom in our flowerbeds,and lots of walks through the park with our faithful Scout!

We are dreaming of summer to come on this cold, cold day, but grateful never-the-less for these hours, these days and weeks together, for the miracle of new life, for the miracle of each breath!

Wishing summer in your heart this winter night,


Wednesday, February 11, 2009

In and Out!

Donovan's first clinic visit as an out-of-province visiting patient was everything we hoped for and more...

Laurier took him yesterday to Edmonton, and they had a CT scan bright and early at 7:30 a.m., followed by bloodwork and then the docs. Well, Donovan's lungs continue to rock! His FEV1 was 91%!!! Fantastic! He reprots that he did have a higher blow, (93%) but he couldn't repeat it. During the test, the patient sits in a little booth, kind of looks like a gondola booth, and then blows into a device that is hooked to a computer. It takes all kinds of measurements, and they print out the most consistent one. Anyway, his new breathers are doing their job, and we look forward to even higher scores. They can improve up to 3 years after transplant if all goes well, and it will, right?

His CT scan showed improvement as well, not total irradication of the fungus yet, but we'll take improvement. He has to do another month of inhaled treatment for it, but hey, its not IV and its not done in that is good news as well.

The best part of today was being kicked out for a whole entire calendar month! Freedom from all things medical in Edmonton!!! hallelujah! And no offense docs, but we won't miss you a bit!!! The only reason we'll head west in the next while is to make Donny an uncle and me a Grandma!

The snow is softly falling leaving a field of diamonds glinting in the moonlight as I sit here tonight in my cozy kitchen. A candles flickers softly. I can hear the cat padding down the hall, and Stephen is strumming his guitar downstairs, preferring that to his homework assignment, it would seem. I glance at the clock, counting the hours until I'll hear Laurier's car, the crunch of it's tires in our driveway, and my heart will be filled as I see Donovan's lanky figure toting the suitcase that was packed for a longer stay in Edmonton, just in case, crossing the threshold of home.

Spring is coming, bringing with it the promise of new life. We have come through fall and winter's grip is slowly loosening its hold. Each season in its turn brings challenges and happiness.

Truly, "to everything there is a season, and a time for every purpose under heaven."

I wish you all the peace of knowing God through each season in your life, and thank you for seeing us through the harshness of ours, and celebrating Donovan's new life.



Monday, February 2, 2009

Home is where you hang your heart...

We are home!!! I can't believe it...even though the evidence (many boxes of meds, suitcases in need of unpacking, dire fatigue and "car lag") are all around. Though we know the journey continues, it seems as though we have climbed a mountain, and at this point are gazing at the breath-taking view from the summit. And that view is what we call home. The place we come to hang our hearts.

We arrived home late last night. Donovan traveled with friends Brendan and Chantal (thank you guys!) and dropped them in S'toon and continued on here. I travelled with friends Connie & Randy (thank-you, thank-you) who graciously allowed me to pack the back of their van to maximum capacity with all of our belongings and Scout! When it comes to packing a vehicle, they have skills! We left melting temps in Edmonton for the icy and frostbitten land of Sask. I must admit, the only thing I miss about Alberta at this point is the balmy weather of the last week or so. Hopefully it blows in here in the next few days...I'm not acclimatized to -30 anymore!

Donovan spent today hooking up his computer, and finally moving into the room I re-decorated for him before Christmas, at some points despairing he would ever see it again! He's fillng a couple cabinets with his meds and supplies, figuring out a workable schedule for treatments and the fitness regime he must follow to keep the new lungs in tip-top shape. He already put a few miles on the treadmill, so he's off to a good start. He also surprised Stephen, who was in bed when he got home last night, and up and out the door before Donovan was up this morning, with a trip home from school. Now doesn't that warm the heart?

Not one to waste time, I worked a half day at preschool today, and as usual my cup was filled to the brim with joy courtesy of 20 charming 4 and 5-year old and their wonderful parents, to say nothing of my awesome co-workers. May you all enjoy your jobs as I do mine!

We are home! It feels so good to write those words, and to snuggle into my familiar bed, next to my familiar husband...knowing all is right with our world.

May God Bless all of your homes with harmony, and your hearts with peace!


Wednesday, January 28, 2009

Homeward Bound (don't jinx it, says Donovan)

HEAR YE HEAR YE!, Loyal Readers and Friends, (picture the town crier with a parchment scroll in hand, calling out in a loud voice to all the townspeople)....

Some very exciting news....Yes, it looks like the next few days will be spent packing up! We were absolutely shocked and delighted at the last clinic visit when Dr. Lien asked so casually...."Well, would you like to go home for a few days?" What!!! Like to ? Love to!!! We were under the impression that this would be home until at least March, but a clearer x-ray does wonders for the doctors' death-like grip on patients, it would seem!

So, going home is a little more complicated than merely gathering boxes and packing up suitcases...we have to ensure we have all meds well stocked, emergency numbers documented, all the t's crossed and I's dotted. Feels a little like that new parent syndrome spoken of when we first sprung Donovan from hospital post-transplant.

The plan is for Laurier to come down on Friday with friends in van to carry back some of the larger items....the dog & kennel, Donovan's 24" Imac, and of course my suitcase...Donovan & hopefully a good friend will drive his Shadow back and I'll go with Laurier & our friends on Sunday.

I anticipate working at preschool the following week and then coming back with Donovan on the 9th for a CT scan and some other tests the next day, and hopefully home again on the 11th. Life will be spent making frequent trips for checkups in Edmonton for the first year post-transplant, hopefully weaning down to 3 or 4 times a year as time goes on and problems prove few and far between. We have to get used to the uncertainty of not knowing if a checkup will mean a few days or weeks in hospital pending results of blood-work, scans, pulmonary function tests etc which are reviewed at each check-up. We will only be told at our clinic visit when they will want to see us next, could be weeks, could be days.

We are so thankful for the support from friends, family, all the prayers, generosity, good wishes and just the knowledge that we have not travelled this road alone. It has been a long four and a half months, full of mountain peaks and valleys.... but God has provided all that we need and more. We look forward to a joyous home-coming and lots of making up for lost time.

Can't wait to see you next week in PA!



A Note from Donovan....,

Hey all, So this is it! The time has finally arrived. Isn't weird how at a time like this you look back and think "well that wasn't that long ago?" But at the time of waiting each day seems like forever. So the next few packing/waiting days are going to seem like forever and a day, plus the drive! AHHH. It's gonna be the longest drive of my life! Hopefully life at HOME HOME won't be too daunting with all the new meds and routine that has to be done exactly the same time everyday (no more late late nights or late late sleep ins!).
Looking back it seems like when I dreamed of having my transplant , it wouldn't have been nearly this soon or dramatic, I always thought mid late twenties, you know because of the ever looming "average lifespan of 36 1/2" for an average CFer and my CF was much more aggressive than most. But none of us (we CFers) are average as I found out, everyone here had a different story and experience to tell. but nevertheless "it" timed itself very well. I also didn't know how much work it would be after! I always had this picture of going under for surgery waking up a little rehab and off you go, brand new! But as we got to know the "routine" it seems that I am just as busy if not even more with daily 'treatments". But breathing easier makes it worth it, Because now every day is a new opportunity for something great.

Thank you all for your faithful prayer and support

"who has two new lungs and a smile?"

This guy : )