Victoria Day Update- 100 Day Bone Marrow Analysis

Well, the hundred day marrow examination has finally been completed. We waited with anticipation and fingers crossed for this test. We just received the results a couple of days ago. The news was good. We were told that my marrow is identical to that of my donor's marrow. In the bone marrow aspirate analysis the lab compares a sample of my old marrow, the donor's marrow and my "new" marrow. The the ultimate goal of the stem cell transplant has been realized - to have my marrow completely replaced by the donor's stem cells.

As my marrow is still "young" and not mature, I still have to take precautions to protect myself in crowds and to be careful about what I eat. For the first year after transplant there are a number of restrictions on my activities. I have to avoid dust and moulds which means I can't vacuum or dig in the garden (I'm lobbying to have the ban on vacuuming extended for life!). Camping and tenting are on the restricted list so Kevin may have to break down and take the girls and I on a holiday with running water! (rivers don't qualify!) I am no longer required to be within an hour of the Bone Marrow Clinic at the Foothills Hospital. I will have to return to the clinic for regular blood tests and to be monitored for Graft vs Host disease. To this point my symptoms have been minimal and the effects on my eyes and lungs have been well controlled with medication.

After my marrow has had a chance to

mature I will require re-immunization with various childhood vaccines. These will be scheduled at one and two years post transplant.

Life is gradually returning to normal. Having been spoiled by all of the delicious meals that friends delivered to the house, the girls are appreciating how much time and thought went into those gifts. Meals have been somewhat less elaborate since we resumed cooking for ourselves. Erin and Ali have decided that Kevin, the "FFF" (Full -Figure-Father) doesn't need quite as many desserts as he was regularly enjoying over the past seven months. They have been suggesting that he has had more than his share of "comfort food" and that his profile is looking a little "over-comforted"!

Looking back over the past 7 months, we feel fortunate to have gone through this experience with so much support and help from so many friends. We truly could not have managed without the positive energy directed to us by so many people, near and far. This outcome is a reflection of the strength of all of you in 'our village'.

Sincerest thanks,

Sara, Kevin, Erin, Alison, and Mona

Mother's Day Update

(Belated Edition)

Mother's Day is kind of a dynamic celebration around our house. I claim that everyday is Mother's

Day - with the unparalleled pampering that I have perpetually provided for Sara and my Mom. (They seem to report a slightly different interpretation of my efforts!)

I am endeavouring to peck out a few sentences to update those of you who have been wondering about Sara's progress. (I am hoping to get it posted before Father's day)

Sara has been at home in recent weeks with occasional trips to the hospital for blood tests.

The extensive array of pills and medications that she has been required to take in order to prevent rejection of the new Stem Cells has been gradually decreasing. With a decrease in medications she has also had a decrease in side effects like nausea and fatigue. She has been able to get out for walks with Mom and other friends when the weather has been favourable.

She is presently undergoing a series of follow up examinations and tests to compare her present condition to her pre-treatment status. She requires chest X-rays and pulmonary function tests to evaluate the condition of her lungs, and consults with ophthalmologic, dental and cardiac specialists prior to scheduling a bone marrow biopsy later this month.

So far, Sara's progress has been steady and positive. (but not quite fast enough for Sara's liking) She has not required re-admission to the hospital since the Stem Cell transplant. Her appetite has been returning and while some of her favourite foods don't appeal to her because of the effects of the medications on her taste buds, she is eating regularly in an effort to regain some of the weight that she has lost. (chocolate doesn't appeal to her - which has placed the responsibility for consuming entire boxes of Purdy's squarely on my mid-drift) Her blood counts tend to fluctuate a little but have been trending in the right direction over the past few weeks.

As some of you have recently commented, the blog entries have been a little sparse lately.

I consider that a positive development as we have been plodding along resuming the rhythm

of our old daily routines with nothing particularly exciting or out of the ordinary to report.

Erin is playing field hockey with her high school team and Ali has joined a roller hockey league.

Sara, Mom and I are off running around trying to take in as many games as we can.

We will update the blog again in a few weeks when Sara has had another bone marrow biopsy and we have had an opportunity to review the results with the Doctors.

In the meantime we have appreciated all of the positive thoughts and good wishes that have been coming our way.

Cheers

Kevin for Sara, Erin , Ali and Mona

EASTER UPDATE

Spring Greetings!

In this age of information overload we have been conscientiously endeavouring not to overwhelm you with too many updates on Sara's progress since her Stem Cell Transplant.

(Translation : I have been too disorganized

to apply my "4 word per minute" typing prowess to posting a blog entry for almost 2 months !)

Sara has been home from the hospital for about 5 weeks.

She has traded in the IV pole, hung with multiple bags of medication, that she wheeled around at the hospital, for a shopping bag full of pills. She has pills to regulate every type of bodily function that you can think of and a few you have probably never even heard of.

Sara returns to the Foothills Hospital outpatient Transplant Clinic a couple of times a week to have her blood counts and medication levels monitored. The Doctors and Nurses at the clinic manage the side effects of all of the drugs that Sara is required to take to minimize the severity of her body's attempt to reject the new Stem Cells. This "Graft vs Host" reaction has manifested itself as swelling around Sara's eyes, mild rashes on her skin, intermittent nausea and a persistent sense of fatigue. (That being said - she still has more energy than I have ever had!)

Despite the fatigue, Sara has been taking advantage of the recent spring weather

to get out for walks around the neighbourhood and trips to the Farmers Market with friends. With Erin and Ali being out of school on spring break, Sara was able to convince the staff at the Transplant Clinic to allow us to all go to Canmore for a couple of days. They had advised Sara that she was to stay within an hour of the hospital for the first few months after the transplant but she has been progressing well and her blood counts have been reasonably stable.

The real reason for the trip to Canmore was to determine if we could still fend for ourselves. For the past 6 months a parade of delicious dinners have been materializing on our front step. These incredible meals, left by friends and neighbours, have been invaluable in helping us through this challenge.

There has been, however, a very real concern that none of us would remember how to cook anymore. Fortunately, we were able to scrape together enough collective culinary memory between the four of us to concoct a couple of meals. (Sara can't eat at restaurants and since we didn't have the foresight to bring my Mom along we actually had to prepare something on our own !)

Suffice to say that the menu wasn't of the quality that we have become accustomed to with others cooking for us - but we did manage to keep from starving.

Over the next six weeks the Doctors hope to be able to decrease the number of medications that Sara is required to take. Over that same time period it is hoped that Sara's body will be able to generate a normal number of blood cells to help make her less susceptible to infection. With a reduction in drugs and an increase in her blood counts the Doctors anticipate that Sara will start to regain strength, appetite and stamina.

The success of the Stem Cell Transplant in eliminating the leukemia will be assessed with a bone marrow biopsy that is normally done about a hundred days after the transplant (likely sometime in mid-May).

Until then, we continue to enjoy having Sara at home and are all learning the

value of patience in recognizing and appreciating small improvements in her condition.

There has been a host of friends who have been helping Sara get back and forth from the hospital to appointments and helping run daily errands to whom we are sincerely grateful.

We all hope that the frequency of these visits will be significantly

reduced with time.

We wish everyone a Happy Easter weekend and look forward to the coming Spring.

Cheers

Kevin for Sara, Ali Erin and Mona

Family Day:

Advice for Husbands

If your wife tends to think that your sense of humor is a little lame to start with - don’t expect her to think that you are a whole lot funnier after:

A) she has been cooped up in a hospital room being treated to a steady diet of chemo drugs, steroids, anti-nausea agents, narcotics and immunosuppressant medications

and

B) you are her primary source of “entertainment” for a prolonged period of time

I am tending to blame Sara’s lack of appreciation for my sense of humor over the past few days on all of the medications she is receiving - but Erin and Ali have graciously pointed out that they also think that my humor is lame - and they aren’t taking any medications.

My Advice – have sons!

Sara’s Progress

Sara’s condition is progressing as expected. The next couple of weeks will likely be the roughest part of the treatment to date. She will experience the combined side effects of the radiation and chemo drugs and her blood counts will drop significantly before the new stem cells can establish themselves. The negative side effects will continue over the next 2 weeks before her blood counts start to recover. There is going to be a lot of ‘waiting and seeing’ in the next few months. Graft vs Host disease will likely start to develop to some degree after her counts start to return. It is around the three month post transplant point that she will have another bone marrow aspirate done to reexamine the new marrow and determine the success of the transplant in eliminating the production of cancerous cells.

Eating is not an activity that is going to have much appeal for a while and the laps around the hallways of Unit 57, which she has been doing regularly, will likely be a little slower and less frequent.

This part of the program isn’t exactly a picnic but Sara considers herself fortunate to have the opportunity to undertake this transplant therapy because in most parts of the world it isn’t even available. Without it, the probability for long term success in treating this type of leukemia is limited.

One of the factors that make this treatment possible is the availability of blood products and transfusions to support Sara, and others like her, during the critical period when they are not producing enough blood cells to sustain themselves independently. Sara has begun receiving transfusions to replace the platelets that have been destroyed by this last round of chemo.

With that in mind, Joy ( seen below volunteering with Erin at Nov. blood donor clinic) has put together the following information regarding opportunities to help ensure that blood is in good supply, whether it is required for use in leukemia patients, motor vehicle accident victims or friends and neighbors requiring a host of other medical treatments.

Blood donor clinic Feb. 20

Did you know that Canadians can give blood every 56 days?

Did you know that one of every two Canadians is eligible to give blood?

People Who Love Sara helped pack a blood donor clinic in north-west Calgary back in November.

Those people are eligible to give again at a Canadian Blood Services clinic to be held this Saturday, Feb. 20 at Foothills Alliance Church, 333 Edgepark Boulevard, N.W.

While the clinic can accommodate some walk-in donors, organizers prefer donations-by-appointment.

To make an appointment, please call 1-888- 2-Donate.

If that clinic doesn’t work for you, check out the Canadian Blood Services website at www.blood.ca.

Click on “CLINICS”, enter your address and a time frame when you could give and you will find a list of clinics planned for Calgary.

Other dates and places include:

Feb. 25 – G. Diefenbaker High School

March 4 – Deerfoot S Atrium

March 11 – SAIT

March 13 – Cardel Place

These are clinics planned for the northwest. Others are held throughout Calgary EVERY DAY.

Thanks for your e-mails, thoughts and prayers.

Kevin

Birthday Week

Monday, Feb 8th, we packed up a "Birthday Picnic", complete with cake, that had been generously prepared and delivered to our house by friends, and celebrated Alison's 14th birthday in Sara's hospital room.

The Nurses on Unit 57 refer to the date of a patient's Stem Cell Transplant as their "New Birthday".
We will be marking Feb 10th on our calendars as "Sara's New Birthday". I suspect that I might have to bake a couple of birthday cakes around this time next year as neither Ali nor Sara are very good at sharing cake!

The transplant went well. The transplant nurses commented that the bag of
donor cells was large and the lab report indicated that the concentration of stem cells in the sample was high.

We are not given any information about the donor's country of residence but the nurses speculate that because the cells arrived late they likely travelled a long distance -

probably from somewhere in Europe.

The transplant took place a day later than originally planned but Ali decided that it was worth the wait since Sara's donor had supplied a big,"chubby" bag of cells rather

than a skinny, little, low concentration donation.

The donor stem cells were transfused into Sara's bloodstream and will circulate throughout her body eventually migrating to her bone marrow where they will take over the function of her old stem cells which were destroyed by the chemo and radiation. ( I'm probably not going to make any points by referring to her stem

cells as "old" - so substitute "original" in that last statement )

The next couple of weeks will be spent managing the side effects of the chemo, steroids and immunosuppressant medications and controlling infection until the new stem cells can establish themselves and start differentiating into the variety of blood cells that Sara will require to re-establish healthy circulatory and immune systems.

Her spirits are good and despite being heavily medicated she was up doing laps around the unit an hour after the transplant.

The Olympics may provide a bit of a distraction to help pass the time during Sara's recovery phase. We will watch to see if she has any sudden urges to cheer

for Sweden or Germany that might give us a hint as to where her new stem cells came from!

Greetings from Unit 57

Today was a busy day for Sara.

I chronicled the days' events on our laptop at the hospital - twice.

Without my trusty sidekicks, Erin and Ali to help me transfer the text to the blog I have managed to lose both accounts of the festivities somewhere in the bowels of my computer or out there in cyberspace.

So here is the late night Coles Notes version:

- Sara tolerated the Total Body Irradiation that she received today very well

-the Stem Cell Transplant was scheduled for Feb 9th

-we were advised today that harvesting an adequate quantity of stem cells from the donor and making flight courier connections was taking a little longer than anticipated so the cells are not scheduled to arrive in Calgary until around 11:00 PM Feb 9th

-once the cells arrive they need to be prepared for transplant

-therefore, the actual transplant will not be undertaken until

the morning of Feb 10th

Sara is managing the side effects of the treatments well and is resting relatively comfortably.

She will continue receiving steroids, immunosuppressants and anti nausea medications throughout the day tomorrow in preparation for the transplant Feb 10th

We will provide you with a little more comprehensive update if the girls can retrieve it from wherever I sent it to !?!

Thanks for all of the e-mails expressing support for Sara and the rest of the family

Yours, forever technologically challenged

Kevin

(I included this photo to see if anyone was actually reading the text or just looking at the pictures - Sara in Morocco May 2008 )

Adventures In Chemo

Just a quick note to let folks know what is up with Sara this week.

To this point she has completed four

consecutive days of chemotherapy and has tolerated the treatment very well. She has spent some long days at the hospital but has been able to come home overnight and return to the hospital in the morning.

Tomorrow she will commence therapy with a couple of medications that have the potential to create side effects requiring closer monitoring. She will stay in hospital overnight tomorrow and remain there for the next few weeks.

She is progressing well and the treatment timeline is going according to schedule.

We appreciate all of the good wishes and positive thoughts that have been directed our way.

" The glass is half full - and the chemo is half empty ! "

Happy Valentine's with Heartfelt Thanks

Time Flies !

A month has already passed since our last update . (I type really slowly.)

It has been a busy month with a host of friends shuttling Sara back and forth between home and the hospital.

Preparation for the Stem Cell Transplant entails a battery of tests and consultations with a host of specialists, from ophthalmologists, to psychologists to dentists.

Sara wound up spending a little more time in hospital in early January dealing with

complications of the last round of chemotherapy than we had all hoped.

Fortunately, in the past couple of weeks, she has recovered to the point that she has been able to attend some of the girls ringette games and even return to a few more active endeavours - like a family badminton tournament. (This was a full body contact event complete with penalties for slashing , charging and unsportswoman like conduct.)

February 2nd Sara returns to hospital to commence a week of chemotherapy to prepare her for her transplant. February 8th, she will be subject to total body radiation therapy in an attempt to eliminate any remnants of her own immune system. An IV bag of donor stem cells will arrive from an undisclosed location on February 9th. (we are given no information about the donor or their country of origin other than the doctor's indication that the donor is a good match and is donating the stem cells at a facility that the Foothills Hospital has a good working relationship with)

The Stem Cells will be transfused into Sara over a period of 20 to 30 minutes. During that time there will be a team of doctors on hand to manage any immediate reaction to the transplanted cells. Sara will be receiving an extensive protocol of medications to help control the side effects of her body's attempts to reject the new Stem Cells. Over the following couple of weeks those Stem Cells will be establishing a new immune system in Sara's body. They will attack and destroy any remaining cancer cells and the components of the bone marrow that were producing the leukemic cells.

Unfortunately, they will also attack other organs that they consider foreign.

The goal of treatment is to minimize the damage to Sara's system until the new immune system has established itself and no longer considers her organs to be foreign.

Ok - enough of my lame attempts to explain this process. If theTransplant Doctors get a hold of this they will likely have me charged with gross incompetence in my description

of their work.

I will sign off on this update now (as I am still reeling from the comments made by an unnamed web mistress who suggested that she needed a snack and a nap to get through my

last blog entry!)

We haven't come up with a better way to express our gratitude than we have at the end of every other blog entry but it is the continued support from so many people, in so many ways

that have helped us stay positive throughout the course of the past four months.

Our sincerest, and most heartfelt thanks go out to all of those of you who we haven't been able to adequately thank on an individual basis.

Take care

Kevin (for Sara, Erin, Ali and Grandma Mona)

Season's Greetings!

Belated Christmas Update

(This is the blog entry that we planned to post a week ago but never quite got around to sending)

The past couple of weeks I have enjoyed some 'days off' from chemotherapy and the hospital routine. My blood counts recovered well after the last round, restoring my immunity and enabling me to 'live like normal'. I have been able to attend a couple of ringette games, walk around the neighbourhood and resume selected domestic activities. (I enjoy baking but I am sure cleaning up the mess, vacuuming or doing windows would be bad for my bone marrow!)

My Doctors decided to start me on another round of chemo just before Christmas. If I was partial to conspiracy theories I might suspect Kevin and the girls of persuading the Docs to order another round of chemo before Christmas so that I wouldn't feel like eating as many of the terrific Christmas goodies that we've been receiving - leaving more for them.

This year in an effort to save Kevin "mall shopping trauma" and because I already have enough ladders, vacuums, strainers, laundry baskets, and shovels, I suggested he leave the responsibility for coming up with a Christmas gift for me to the girls. (I do have to admit , however , that the ladder I received for Christmas a few years ago came in handy this year. As I couldn't have a 'real' tree, because of my compromised immunity, the girls elected to decorate the ladder instead of getting an artificial tree).

Kevin did brave the dollar store and presented everyone in the family with "Wild Kingdom Headgear" - very practical accessories that can brighten up any ensemble and ensure that you are not wearing the same thing as anyone else at your next party.

Erin and Ali treated me to some lovely gifts but the nicest 'surprise' under our ladder was news that a stem cell transplant donor had been located and confirmed. If my recovery from this latest round of chemo continues as anticipated, the transplant will be scheduled for early February. I will return to the hospital the week prior to the transplant for seven days of intensive chemo and a course of full body irradiation. The intent is to completely eradicate any remnants of my own immune system to minimize rejection of the donor's stem cells. The donor's stem cells will be harvested in a clinic in their home country (we aren't told where that is) and flown to Calgary in an IV bag. When I have completed my pre - transplant chemo and radiation the cells will be transfused into my IV. The two weeks following the transplant are spent in hospital managing all of the side effects arising from the transplant. We are given no information about the donor except that the transplant team has indicated that they are a good match for my immune system profile.

While the prospect of what lies ahead in the short term is a little daunting, the philosophy of "taking it a day at a time" has brought us 3 months down this road with good progress and positive results from the therapy undertaken so far. Having found a donor opens the way for the next step in the journey to recovery. (and having to do windows again!)

Happy New Year

We will endeavour to post this New Year's Update sometime before Valentine' s Day!

We have enjoyed a relaxed holiday at home between Christmas and NewYear. I have had to return to the hospital every couple of days to follow my blood counts and receive transfusions but have been able to spend evenings at home.

It has proven impossible to adequately recognize and "Thank" all of those who have supported us over the past few months. The cards and e-mails of encouragement, prayers and positive thoughts have truly been uplifting and inspiring. All kinds of people have come forward to chauffeur, feed, decorate, donate, co-ordinate and just generally look after us.

We feel blessed and genuinely grateful for all efforts, large and small, that have been made on our behalf.

We look forward to 2010 and wish everyone who is helping and us along this path - good health , time with family and safe adventures in the year to come.

Sara, Kevin, Erin, Ali and Mona

Keep smiling!