Countdown

It is official! We are making plans for a Bone Marrow Transplant at Johns Hopkins in Baltimore, MD. The actual date has yet to be finalized but we are planning on getting started by the first week of June, possibly sooner. We have been in contact with the doctor and other Hopkins staff to make all the necessary arrangements.

Communication with the hospital has been smooth and easy. It is all the other arrangements that generate stress and anxiety as we get closer to June. We are planning on moving the whole family out for the two months that I will be at Hopkins. Kelly and the girls will be staying with friends in Elkton, MD, about an hour away from Baltimore. Kelly will be with me as often as she can, but it is important for her to be with the girls so that their summer is as normal as possible.

Summers off are easy for a teacher, but a nurse does not share the same luxury of vacation time (at least not as much). Kelly is having to take unpaid leave from work for at least two months which leaves us with some financial needs. God is already providing for some of those needs through the generosity and creativity of friends and family. Our good friends Curt and Emily hosted a weekend of photography sessions and donated the fees they received to help us cover our summer expenses. Other friends have donated money to The Brian Porteous Donation Fund that is set up at the Whatcom Educational Credit Union. WECU will accept donations at any branch or through the mail to WECU, PO Box 9750, Bellingham, WA 98227-9750.

Please do not misunderstand us. Many of you have asked us if you can support us financially and the account gives you an opportunity to do so. More important to us than money are your kind words, your thoughts, and your prayers as you have followed us and continue with us through this process.

I am still relying on blood transfusions about every two weeks to sustain me. At first it was frustrating but now I see it as more of a means to and end. If the transplant works, not only will transfusions be a thing of the past but so will the laundry list of medications. I feel like a car that needs to completely fill the engine with oil and water every time I stop for gas. As my body uses up the previous transfusion, my energy begins to drag and I feel tired which does not mesh well with a full work schedule and early mornings.

With a busy schedule, it is easy to lose a Godly perspective. I am guilty of forgetting that it is only through Christ I am saved, only by God's grace that I exist, and only by God's blessings that I have an amazing wife, two wonderful daughters, a loving family, and friends that love me closer than brothers. I need to find time for God to speak to me through a hectic schedule, chronic fatigue, and consuming preparation and planning. Only then can I reclaim the peace of mind that God promises amidst the most difficult of circumstances.

Thank you again for your prayers and your thoughts.

Grace Enough for Today

My greatest fear was that we would come back empty handed...that the doctor would simply say, "You are doing all you can do." Family and friends offering to bend over backwards to make everything possible would be left with praying that a bunch of horse size pills will somehow start working and I would just bounce back. There was a moment a couple nights before the appointment where I was mentally preparing myself to be disappointed that I would not be a candidate for any other treatments.

The results of the appointment could not be more distant from my worst fears. In fact, the doctor surprised us with a treatment that since my original diagnosis in April of 1999, we no longer considered an option. That's right folks...Bone Marrow Transplant! In 1999, that was the first treatment option if I had a matched related donor which made Kari (my sister) the only potential candidate. She was tested and considered close but not a "match" so we went a different route. The risks were still to high with non-related matched donors and on we moved.

So here we are 12 years later and this doctor who has seen more patients with Aplastic Anemia that anyone in the country tells us that not only would Kari's bone marrow work, but both my Mom, Dad, or my daughters could be potential donors (obviously not ideal if avoidable). Advances in the transplantation process allow for a close (but not perfect) related match to take in Aplastic patients with the dangers of Graft vs. Host disease reduced to less than 10%. Kari would have to be retested but she would be the most likely donor.

The procedure is still lengthy and risky, but what amazed us the most is that the word CURE became a part of the conversation for the first time in 12 years. A successful Bone Marrow Transplant would CURE the Aplastic Anemia as well as the PNH disease which caused my hospitalization in November. Essentially, my own stem cells would be wiped clean and replaced with new cells from the donor, replacing the disease and dysfunction with them. The doctor quoted cure rates conservatively at 70% and realistically closer to 80%.

The procedure and recovery would take 60 days. Thirty of those days would be spent at the Hopkins facility in Baltimore where the transplant as well as pre and post treatment would take place. The next 30 days would be spent in Baltimore but with daily outpatient visits for treatment and follow-up. With no complications, I would be able to return home after the 60 days.

Here come the questions...What about timing?...What about Kelly?...What about the girls?...What about money?...Our heads were (a still are a bit) spinning! Spending the last part of our spring break in a small valley in the Canadian Rockies, we are beginning to chew on little bites at a time, like God is only feeding our brains with enough to swallow but not too much to choke on. Grace enough for today!

We are about 95% sure that we are going to move forward with this, with the 5% being the simple fact that we have not yet contacted Hopkins and told them we are a go. We have faith that questions will be answered, time lines will be set, contingencies will be accounted for, and we will move forward. We are at peace with the decision to go through with this and we maintain our faith and hope in God's great plan for our lives.

Once again, your prayers were heard, your thoughts were felt, and God continues to hold this fragile body in the palm of his hand.