November 27, 2006

Well this is an update with mixed news. First, the good news then the news that is a setback, but certainly not a deal breaker. I wish I would only have good news for you but life just isn’t always that way. We live in a broken world and stuff breaks.

The good news: Dr Mauro from OHSU called last week and indicated that the initial results of the bone marrow biopsy revealed the best possible situation. The leukemia has been reduced by the chemotherapy to a very, very low level. The marrow shows remnants left by the chemotherapy, but no newly forming leukemia cells. That is great news because it means that there will not be any more conditioning chemotherapy needed if the stem cell transplant is done in the near future. I’m at the best place possible to ensure the best chance at success with a transplant.

The not so good news: I just received a call from Kelli who is the donor coordinator at OHSU. Kelli just received news from the British Bone Marrow Registry that the donor, who was activated and ready to give me his stem cells, is “no longer eligible to be a donor”. This is a standard message that is used when the perspective donor has shown to have a medical reason to be disqualified. It is also the message that is used when the donor has decided not to continue for personal reasons. In other words, it is the message for any and all reasons given, but the fact remains that I need a new donor.

The good news is that I have another perspective donor with the exact same match as the first donor. This donor has undergone much of the testing necessary, but more immune system testing is needed. There are also two other donors who have completed less testing but also appear to be great matches too. Kelli is now actively pursuing them as potential donors too. Because of the withdrawal of my original donor I will not be going into the hospital this Friday to begin the transplant process. The earliest date a transplant can be started with another donor will be sometime in late December (if all things align perfectly).

As mentioned above, my recent chemotherapy was successful in placing my leukemia into full remission. Now it is a race for time. Unless a new donor is qualified and a transplant date is set very soon, I may need to have another round of conditioning chemotherapy. Chemotherapy will be necessary only if the leukemia rises to a level above 5% in the marrow. The leukemia will come back at some time and the longer the time, the greater the chance that it will be above the acceptable level in the marrow for a transplant. Extra chemotherapy is not my first choice for a Christmas present.

Apparently the first donor wasn’t the right one. Please pray that God leads us to the right one soon, if that is His will.

November 21, 2006

Well it doesn’t seem like it but today is the 194th day of dealing with my leukemia since the blast crisis began last May. In a lot of ways it has been life changing. I have not been able to work routinely, my physical and mental health has gone up and down with the varying treatments and my dependency on God’s grace, joy and strength has been deepened immensely.

Thank you so much for going on the journey with me. Your prayers, supportive comments, visits and/or cards have really lifted me.

Since my chemotherapy 3 weeks ago, my blood counts are coming back up and the leukemia is seemingly in remission. The leukemia being in remission is crucial to getting the stem cell transplant. Yesterday I had another bone marrow biopsy that will confirm remission and keep the clock ticking for my transplant.

If everything continues to go well, I will be checking into OHSU on December 2nd to prepare with chemotherapy and full body irradiation for the stem cell transplant. I will receive the donor stem cells on December 8th. These dates have been confirmed and were scheduled because December 7th is the first date available at the stem cell collection facility where the donor lives (I think he is in Great Brittan somewhere).

It is interesting that a courier will be waiting at the collection facility to hand carry the stem cells in a small cooler by taxi, on various airplanes and by another taxi in Portland. He will deliver the cooler directly into the doctor’s hands at OHSU. Flights, backup flights and alternate routes have been setup before hand in ensure that the stem cells make the trip in a timely fashion. There is a 24 hour time limit from when the stem cells leave the donor until they must be transfused into me.

Every doctor visit Barbara and I find out more about what to expect and what the transplant process will require me will go through. The first 100 days (or more) after the transplant are critical. I will be in the hospital at least 28 days and probably more. After I’m out of the hospital I will be going to OHSU from 3-6 days a week for the next few months to receive anti-rejection and other medications. Each transplant recipient reacts differently to the transplant process and there are only some wide guidelines for recovery because of such varied reactions.

I know that you are very busy and this is a busy time of the year. However, I am hoping you will continue to pray for me. God has been very close to me during this journey and I’m confident your prayers have contributed to His closeness. Thank you again.

I hope you all have a great Thanksgiving this year and that the relationships with your family and friends are the best ever.

November 12, 2006

This has certainly been a long journey. Since we drove back from California to be admitted last May it has been 184 days. Thank you for going along with me. Your support and prayers have helped make it bearable.

On November 5th my temperature had slowly risen to 102.4 so it was off to the hospital again. I have been admitted at Sunnyside oncology since the 5th and am going to be released today. In the hospital my temperature stayed around 102 to 104+ from the 5th till the 9th. By taking blood cultures the docs found that I had contracted a common strain of strep bacteria. After a few days of IV antibiotics the fever broke and the strep was gone. I will be finishing the IVs at home so Barbara and I will be taught proper PICC care and how to do the IVs before we can leave today.

My white blood counts are starting to climb. That is such a relief. I have had an ANC of 0 for many days. In the past 4 days it has risen to 396. Since the counts are rising, my sore mouth has gotten so much better and it is such a blessing to be able to chew and swallow without pain.

Now what? So now it is trying to stay healthy to keep the stem cell transplant on schedule. I will need to make up some labs and tests that were scheduled last week and complete other tests scheduled next week. Like a marathon runner my focus is set on race day, for me race day is transplant day, which is 12/1 or 12/2.

I have found that is best for Barbara and I to intimately learn what the individual steps are as I go through them. If we start dwelling on how much is left to be done, then we are overwhelmed. The mantra of take one day at a time has been one we have adopted for this process.

God has been so gracious to me through this. Again, I’m going home and have been home since chemo. The kind of chemo I had usually leaves people in the hospital for weeks. Since I don’t know much about the different medical processes, I rely on the nursing staff to give me what they normally see. They are the ones who are surprised to see me in the relatively good condition I’m in. ONLY GOD

November 3, 2006

Well, I’m pretty sure that I’m at my Nadir (lowest blood counts of this phase of chemo). I’ve been getting platelet transfusions every 2-3 days and red blood transfusions every 4-5 days since I left the hospital.

Hopefully transfusions will go away soon as I’ve been using injections of Neupogen and Procrit to jump start my marrow. The low counts have caused mouth sores and a real lack of energy. I’ve gone from couch potato to bed potato. Having the stem cell transplant date settled has been huge for me. I feel like I’ve gone from being on eternal hold to being able to see the end of the process. The transplant is an ominous concept but it is the best treatment short of a miracle healing by God.

The big news is that my stem cell transplant date has been firmed up. Unless something big changes the dates, I will be going into OHSU the Monday following Thanksgiving to start a regime of chemo and full body irradiation to prepare me for the transplant. My donor will be getting prepared that week also. The collection of stem cells from the donor and infusion of those cells into me will be around December 2-4. Barbara and I both are approaching this transplant completely relying on God to get us through it.

My emailing ability will be limited for the next 5 or so days. The CPU fan in the laptop failed and it is going in for repair. The laptop is my primary computer so I’ll be “off line” for a bit.

Thanks again for all of your prayers. This has been a long journey; a journey that I wouldn’t have ever chosen, but it has been rich with spiritual growth and relational benefit. I thank God for his grace and mercy. I also thank Him for all of you.