Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
I know everyone says not to focus on one number, just the trends, so I waited a week to post this. Tonys platelets have dropped every lab since last Monday, they were 51, then 43 Wed, then 37 Friday, now 23. We are terrified as to why. We are day +25. His Heme is stable, but his whites dropped too (although they said 1 week after nupogen shots were stopped, this is expected to drop about 50% from discharge)
So many thoughts are running thru my mind.... Is his graft now failing or late graft failure, is this the aml disease recurrence, is this SFPR(secondary failure platelet recovery)? All of these are very very bad!
I actually think I am going to throw up or pass out from panic. Tony, who has always been a total rock thru this all, is shaken too. I'm not sure how to handle all this stress! It's been an unbelievably grueling and torturous 30 months, not sure how much more I can take.
So many thoughts are running thru my mind.... Is his graft now failing or late graft failure, is this the aml disease recurrence, is this SFPR(secondary failure platelet recovery)? All of these are very very bad!
I actually think I am going to throw up or pass out from panic. Tony, who has always been a total rock thru this all, is shaken too. I'm not sure how to handle all this stress! It's been an unbelievably grueling and torturous 30 months, not sure how much more I can take.
Thinking of you and Tony and praying real hard that everything is good.
Karen
We are all thinking of your family, praying for Tony's health. I hope all is well.
Big hugs,
Monique
We Finally met with Tonys doctor today, she has been presenting at a conference since last Wed. His platelet counts have come back up a bit since the last weeks steady drop. The rest of his counts are good, stable. WBC 3.8, heme 11.9 and plate 40. After waiting 2 painful hours in the clinic to see her, she came in and said Fridays prelim bone marrow results are good. We're still waiting on chimerism and cytogenetics to come back. We are day +34 and she says Tonys doing wonderful, explained this is not uncommon for the platelets to rise and fall at least once or even twice after transplant. So told us to be prepared bc it may happen around day 60 too, they don't know why. She gave us clear and to head home for the weekends since we are a out 53 miles away (chicago traffic = 1 hour off times but 2-3 hours during rush hours) she has set us up w a local doc should an emergency arise while were home, he will have all Tonys records.
I've spent some time today reading the marrow report and everything looks great as far as I can understand it, and she confirmed.
I can't tell you all enough how much strength your support continues to give me and Tony. We know this path is going to have it's "speed bumps" and will continue to try to do the best we can for what is directly in front of us. For now we will focus of the next 30 days, and spending as much time w izzy as possible!
I have some catching up to do with all of you and the new posts on DS, looking fwd to hopefully being able to help help others heading into transplant, now that we know a little more then we did before. Praying donor chimerism for tony and clear cytogenetics when the results come in
Xo
Lea
I am so so so happy to hear this news! I have been checking constantly for your update. You know I'll be praying for further positive results. What a blessing to be allowed to be at home. As I've said before, I believe God purpose for saving Tony is to be a shining example for others who face the highs and lows of Aml. YOU BOTH arean inspiration to me!
May almighty God continue to bless you, Tony and Izzy
Julie
Love all the support and much needed prayers
Xo
Thank you for the update... Such great news and also great that you get to go home and see Izzy on the weekends.
My daughter in law went to build a bear workshop today with my grand daughter and they built a "daddy" bear. My son recorded "daddy loves you and I'll see you soon" on a voice box that they installed in the bear. Everytime she hugs it she will hear her daddy's voice. Not sure if there is a build a bear store near you but I thought it was a great idea for the little ones.
Take care, I will continue to pray for Tony.
Karen
I am so very glad to hear the good news! I have been checking daily to find out how Tony was doing. I know all too well how stressful the waiting game can be. Why do doctors need vacations anyway? :) I did not realize you are near Chicago. We are in Wisconsin, and one of the places that we could have ended up for transplant was Milwaukee. We now know that we will be going to University of Minnesota, which is much closer really. We are in the northwest part of the state, so it's about 90 minutes to Minneapolis. I will continue to pray for Tony. I have no doubt that he will do very well.
Jacki
Enjoy every moment with that special child and try to relax as much as possible.
xoxo
Monique
I am so happy for ALL THREE OF YOU!! I think Tony's good results will make you relax a bit when you see counts go up and down. The bone marrow environment has to get used to its new quarry. That's all. Give it time and it will not disappoint you.
Cliff
Lora
Debbie