Leukemia Awareness Week


This may just be a Facebook thing, but I thought I would post it on my blog. It's timely at our house. John just finished his sixth and final round of chemotherapy. He had a very tough weekend (the effects are cumulative). We will repeat CT Scans on February 22 to get actual measurements, but it appears John will only get a partial remission. The nodes have greatly reduced, but they are not gone. Still, a partial remission is something to be thankful for. Several of my CLL friends have stayed in partial remission for years.

Patients with stubborn lymph nodes are often challenging to treat effectively. I'm quite sure there won't be a day of the rest of our lives that we don't check out his neck for signs of progression. When the remission ends, we will have to explore other treatment options. Dr. Flinn has already mentioned stem cell transplant if he comes out of remission quickly. And there are new treatments being developed. We all hope for less toxic options and A CURE.

If you want to register as a bone marrow (stem cell) donor, go here:

BE A MATCH!

The first thing I did after John was diagnosed with CLL was to register as a marrow donor. I would love to get that phone call telling me I was someone's match.

Because of my involvement in CLL online communities, I have read lots of patient and caregiver stories. I have learned how individually patients progress and respond to treatment. And I have lost CLL friends. That part is hard. It's hard because you become attached and it's also hard because it's a harsh reminder that this disease is not curable.

I'm tired this morning. Watching John go through all of this is emotionally depleting for me. There is so little I can do other than just be here. Sometimes I feel very strong and other times I feel like I just want to curl up in a little ball under the covers. There are times you just want to say, "God, please don't make us go through this. Just make it go away. I know You can." But that isn't always God's plan and I know that.

John had a rough weekend. But for some patients with more advanced CLL, every day is rough. I know this won't be our last battle and there will be many challenges to face in the future. But I'm thankful John is done receiving chemo for a while and will hopefully begin to feel better and stronger from this day forward ... for a long time and for as long as God allows. Diagnosis or no diagnosis, we are all in His hands. And the good thing is, there is no better place to be.

Thank you for all the prayers, love, support, and for reading my ramblings.

Comments

John Wagner said…
Beautifully said. Those of us that share similar experiences can certainly relate. I pray that John will experience a wonderful, long "intermission." More importantly, that he soon regains his strength and feels well. I really believe being the caretaker is harder than being the patient. I have often said I am glad I have it and not Cheryl. Following your blog and sharing experiences on the support site, I know you are among the very top caregivers with whom I have become acquainted. God bless.
Shari said…
You have no idea what those words meant to me this morning, John. With tears in my eyes...thank you.

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