Thursday, October 27, 2011

Remembering Kathy

Today has been incredibly hectic, not unlike the last few. But as I stress over this or that, hurry here or there, set alarms as reminders, and do all the other things that have made up my crazy day, my mind and heart are never far from the memory of my friend Kathy.

Today is the anniversary of Kathy's bone marrow transplant. Hers never grafted and she was sent home to die. In three weeks, she was gone.

Sometimes I forget how lucky I really am. I become absorbed with the details of my life and fail to see the big picture. That I have cheated death. That I live when many don't. I made it through, no matter how difficult it has been and continues to be. Kathy is a good example of a good person who had something really bad happen to them. She should be here too.

When I met Kathy, she was diagnosed with leukemia the next week. Her search for a donor was very complicated and finally a less than perfect match was selected. We fundraised when her insurance money for donor search was depleted. She left for Seattle within two months of meeting her. The third month she was transplanted. The fourth month she waited. The fifth month she knew it had failed. The sixth month she was gone.

What an impact she made on me, even long before I knew of my own leukemia. I had never even heard of a stem cell transplant until she needed one. I watched her be incredibly brave, strong, and selfless. I watched her hope, dream, and accept. She went before me before I knew I would go there. But never have I had the grace that Kathy had.

Thanks, Kathy. I miss you.

Saturday, October 22, 2011

My Donor Wants to Know Me

Last March 6 marked the second anniversary of my bone marrow transplant. In addition to being a reason to celebrate being alive, it also meant that my donor and I could seek out information on the other. If the donor is in the United States, contact is allowed at the one year anniversary point. Because my donor is in Germany, international donors must wait two years.

So right on the date I received a letter from the Unrelated Donor Coordinator at Seattle Cancer Care that my donor had requested my information. That was pretty cool. Not only that he hadn't forgotten, but that it was he who took the initiative and clearly was anxious to do so. Well, as excited and flattered as I was, the letter (simply requiring my authorization to release my information to him) has been sitting in a special place ever since.

I finally completed the form, which includes things like address, phone number, age, and marital status and mailed it back to the Coordinator. From there I really don't know what happens, other than that my information goes back to my now twenty year old donor.

I am nervous, for so many reasons. What if he wanted to save a child's life? What if he is insulted I waited so long to return the form? What if he thinks I am 100% better? Will he be hurt I didn't seek him out? What if the truth isn't the fantasy he went through the donation process for? I am so very worried he will be disappointed.

Another wait and see.

Thursday, October 20, 2011

Fire Safety, Part II

Many of you may remember when John Paul, the microwave, and a Cup O'Noodles had an encounter, shortly after his first grade class had studied Fire Safety. If you remember it, you are probably laughing, or at least smiling, at the memory. Well, Brennan is now in first grade, and just finished his Fire Safety unit......

The picture simply doesn't do justice to the black right eye and the gouge next to it. Suffice it to say that when one practices "Stop, Drop and Roll", including the new instructions to use one's hands to cover the eyes, nose, and mouth to avoid smoke inhalation and irritation,that one cannot see where one is rolling. Ouch.

Both my boys have done me proud with their emergency preparedness. And I am tickled to have two "Stop, Drop, and Roll" memories and stories to tell.

John Paul was just jealous of my taking Brennan's picture and insisted that I take a silly one of him too.

I hope this made you smile.

Monday, October 17, 2011

Fall Sports

I seem to forget how busy Fall can be. Back to school and nightly homework are the basics. Then add on the boys' sports, and it is insane! Both John Paul and Brennan are playing soccer and flag football. Between them there is at least one practice every day after school and there are at least three games on Saturdays. Inevitably one game is at the same time as the other sport's game and simply can't be played.

It definitely takes two parents and two taxis to get everyone where they need to be. During the week Craig handles John Paul's soccer practices as he is also their coach. The rest are up to me and it is exhausting, even if I felt well. Saturdays are a bit manic but it always gets done.

Here is a picture from John Paul's football team's pose for the photographer doing the formal pictures. (Yes, it's a bit of a cheat. But we ordered pics too.)He is third from the left on the bottom row.

It remains to be seen which child will continue in which sport(s). But I remain amazed at how serious it all gets, even at the six and eight year old levels. Brennan seems to be the more aggresive on the field, really without any fear for what comes next.... John Paul is a good support player, assisting in plays but keeping away from direct conflict. Huh, sounds like their personalities off the field too!

Friday, October 14, 2011

Still In Remission!

I recently completed a number of oncology lab tests and I continue to dodge the proverbial bullet! The test that looks for the presence of the Philadelphia chromosone, the "marker" for the type of leukemia I had, came back with the prayed for "NONE DETECTED". Hooray!

I survived another week of waiting for the test results. And I made it another three months of waiting between repeating the lab test. Oh happy day!

Thursday, October 13, 2011

Immunology: One Step Forward, Two Steps Back

Previously I blogged about the good news I received from my CD4 test, which measures your T-cell count, which is basically the strength of your immune system. I finally had moved up and out, if you will, from being the equivalent of having AIDS. My number had risen enough that while I was still nowhere near the normal range, I at least did not have the same threat level.

Unfortunately, I have lost half my gain, and am now just a bit above the critical 200mark, at 243. Obviously this was not good news but most important is to learn whether I am trending down or if it was just a one-time loss or perhaps even a fluke. So I repeat the CD4 next week and I am nervous, to say the least, for the results.

My immune system is monitored by an Infectious Disease doctor. He determines what preventative medications I require and how to treat infections, be it bacterial, fungal, or viral, as they arise. When your immune system is compromised, it is so much easier to acquire an infection, thus all the effort to isolate from those that may be contagious. In an immunocompromised patient, the body simply can't fight the infection on its own. Sometimes the infection can even be life-threatening.

Although rather benign on the severity scale, but awful to battle anyways, are the thrush and C diff recurring infections that I have had. I would just assume not have either ever again, but the Infectious Didease doctor designs a plan to both prevent and treat. So it is somehwat routine now, albeit unpleasant.

I hope my layperson explanation of what all these immune sytem topics are and mean has helped answer some of the questions I regularly get. I'll keep you posted when I get my new test results. Pray for no downward trend!

Tuesday, October 11, 2011

Back to School

Yes, we did send the boys back to school this Fall..... On August 31, Brennan started the first grade and John Paul began the third. It was incredible to be healthy and to enjoy the traditional back to school moments. Here are some snaps from the yard and the car, heading to school. There is also one of both boys wanting us to leave already!

Our family is blessed that the boys have returned to All Saints for another year. The support from the school and the school community have carried us through many days. Quite literally, we wouldn't have made it through without them. I am also fortunate to have been "adopted" as a project by several parent friends who simply won't let me give up.

Today we are about six weeks into the school year and the boys have settled back into the school routine and are doing well. They are also both playing soccer and flag football. Our after school hours are filled with homework and various sport practices. A little family time finishes the evening just as it is bedtime. Saturdays are spent going from one game to another. I am relishing the routine, the mundane, and the simple continuity that I mostly can participate in. It is what I have been waiting for.

We are proud of both boys and are pleased to know that they are each doing their personal best.