I finally got my FISH analysis results from the big appointment with Dr. Byrd last Jan. According to his recommendations, I should be heading off for a stem cell transplant in the next little while since it showed I do indeed have the 17p deletion. I'll meet with the local guy to discuss it in the fall. Allogeneic SCT's aren't offered in this state. I'd have to relocate to a willing victim's home for several months, most likely with my sister Julie in Utah. Jordan's patience and courage are definitely an example to me, but there are other considerations. Right now, it's all we can do to cope with Jordan's too-soon journey to what feels like a very distant land.
5/7/09: I decided some time ago that there will be no SCT for this CLL (chronic lymphocytic leukemia).
We made a trip to WA in June, visiting with Dan's brother and sisters, and Ethan and Missy, and families. Bittersweet...we had wanted to go much earlier, for other reasons. Still and all, we're grateful to have been there. Family relationships are worth traveling, writing, phoning, emailing, and doing whatever it takes (maybe even forgiving and overlooking), to preserve! (In most circumstances, that is.)
Better than a visit from St. Nick, was last week's visit from Julie, Liz, and adorable nieces, Erin and Lily.
10 comments:
I am so sorry to hear of Ethan and Missy's loss. I have never had to experience to loss of a baby, but I am sure that it is difficult. Please know that our family thinks of you often and that your family is in our prayers and in our hearts. You are so strong to face the trials you are experiencing.
Alma 36:3
...whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day.
Hang in there. :)
Love to you and your family.
Bonnie,
It seems like you took two steps forward and one step back. Thats still progress though. Congratulations to Briana, I hope this will be a good experience for her. Our most sincere condolences to Missy and Ethan. I know you will find the inner strength and comfort you need to make your decisions in the next few months, until then- smell the flowers and enjoy the warmth! With love, Louise
Cindy! Ah, thanks for sharing Alma 36:3. It hits the mark! I visited your blog, even stole Abraham Washburn's link from you. I shall return!...often.
Louise, I will indeed smell the flowers, petunias to be exact. I'm relieved, I thought you were going to tell me to smell the coffee! :)
Bonnie I think you should smell whatever helps. A certain mutual friend of ours finds Magic Markers particularly uplifting on a stressfilled day!! Give my condolonces to Missy and Ethan and my best wishes to Brianna. She has the empathy to bring to nursing for certain. Bless you in your "contemplations" and know you are all still in our family prayers.
Meadowbee,
There is one thing for sure - - you are in the thick of the trials of life. I know that days are difficult, but I am grateful to see that you are exercising patience with God and finding comfort in the people you love and the small daily blessings (watermelon juice sounds lovely.) Three cheers for Brianna for moving forward. She is beautiful.
You are both in my thoughts and often in my prayers.
"Stem cell" is a term that carries with it an air of hope. I will hope AND pray.
Love,
Michaela
Hello, Bonnie (better known to some of us as Meadowbee),
I am so sorry to hear about Emma. I know Ethan, Missy & the rest of you are taking comfort in your Heavenly Father's love.
You are all still in my prayers.
This is wonderful news about Brianna. She sounds like a remarkable young lady. She & you are all blessed to have each other.
I know I am taking no liberties by bringing the love & care of all the Porchupines to your family. We miss you & hope & pray for the best for all of you.
Sandy (aka Curelom from Nauvoo)
I am here if you ever want to send an email. I lost your email address and it just seems inadequate to send a pm to me. I won't ask you for results as you asked us not to do so.
I think it is great that Brianna is working towards her CNA. I have a cousin who did that and now works at a nursing home. It is very physically demanding work. She has so much respect for elders and I think that makes her ideal for the job.
I love the picture of Brianna and the little girl. So very sweet!
Your friend from the forums, Barb(Abby76)
Bonnie,
Still thinking of you three. Not sure why you need a SCT Bonnie but I am praying for your health.
Michelle from rhabdo kids
(Diego's Mom)
Thank you, kind posting friends! Becky, you've left me wondering who this Magic Marker-sniffing mutual friend is (could it be Louise?). Michaela, Sandy, Barb, ah for the carefree days on that big, wide Porch of ours! Will I ever be meadowbee again? Time will tell.
Michelle, how sweet of you to drop by. My prayers are with your little Diego! He is such a valiant fighter!
The stem cell transplant would be to treat the CLL I was diagnosed with in 3/06. I'm leaning more away from it than toward it at this point. Time better start telling me something soon, I guess. I am still doing well physically. No treatment since 8/07.
Interesting to know.
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