Hi Lori,

Lovely to hear from you and whats happening :)

All the encouragement I can give you is that your posts and your Son's positive approach to his treatment encourages us all on a daily basis. Just remember we are all here to listen when you have a moment and you are helping all of us as well

So great that he is only "bored" LMAO

xxxx

Prayers. I know anxious. Zantac is my newest friend

I meant zanax

Hi Lori,

Thank you so much for the update on Keir! Those bloody platelets (pun intended)!!! As you know, they are the bain of my existence. AS Aussiemum said, a boring recovery is good :-). 50 days is huge-half way there!!!!

My family continues to pray for yours.

Julie

Lori,
So happy to hear Keir is doing so well. Oh my those pesky platelets!!!! Vince had issues with them too (especially the first few months after his last chemo). Up down up down like a roller-coaster. They have finally leveled off over a year after his last treatment. Sending good vibes your way for tomorrow's clinic visit!

:) Julie

Hi Lori, I'm happy to see this positive update on Keir. As far as your anxiety, try to trust the doctors. If they're not concerned, try to relax and breathe. It really sounds like everything is going as planned, and I have faith Keir is well on his way toward cure. I hope clinic went well.

When I see a lab report that looks worrisome to me, but Sal's docs don't seem concerned, I ask lots of questions so that I'm better able to understand why. I think we all become experts in blood chemistry. This medical knowledge of AML and treatments has given me, personally, a great deal of peace. I have no control over AML, but it's not a mystery to me any longer, and it can be cured. I know how all the different chemos that Sal has had are supposed to work, and I've been learning more and more about radiation treatments (for Sal's upcoming conditioning regimen). This helps me cope. But it can be anxiety provoking for others. Everyone's different. Ultimately, we must trust our doctors.

xoxo
Monique

Oh Lori

Anxiety, how it drives me mad literally. If Keir is getting bored you know he's getter stronger. I had the opposite concerns with my platelets, prior to diagnosis I was attending a haematologist for a number of years for a high platelet count and even though BMBs were performed no condition was ever diagnosed. When I was dx they hospital told be that the aml was no way related to my previous symptoms but it did not stop me worrying . After transplant everyone told me that my platelets would bounce around for a good few months to years. Not for me on day 13 they were 60 on day 28 170 I hit 530 at one stage the panic I felt that this was starting all over again even though I was assured all was well the panic was still there.

So try to stay calm, pop some happy pills and enjoy these good days with Keir

Majella

Hello Lori, my friend! Fancy meeting you here! ;)

Because of all the restrictions involved, AML/transplant recovery can be tedious. Everything about recovery seems like it's at a snail's pace...but slow and steady wins the race, as they say. An "uneventful" day can be a blessing...it's all in the way you look at things. Exercise is wonderful, but make sure Keir is keeping his mind active, too.

Remember not to feed your anxieties with the "what ifs" and "what could have beens". It is what it is...and it CAN be even better in so many ways. One day at a time, my friend. :)

~~Kim

an update: Keir's platelets have fallen more though the rest of his numbers are relatively stable and he feels very well. The doctor says fluconazole, a drug he's on, may be responsible and is taking him off. He's gained weight and is okay otherwise, but I am a nervous wreck.

http://www.dailystrength.org/c/Acute_Myelogenous_Leukemia_AML/forum/16735616-heparin-induced-thrombocytopenia

Lori,

Oh how a loathe those fickle platelets. I have provided a link to one potential cause that may need to be considered. My med team tests fir this as it can come on after extended exposure to heparin. Just a thought. Praying for your family and especially keir continued progression to day 100

Blessings

Julie

Visit to clinic today and platelets still down a bit, which really discouraged me , though the drop was slight - from 82 to 79. The doctor reviewed Keir's situation carefully and given his general well being (which is excellent) his other numbers (all good) and his bloodwork differential (nothing suspicious showing up) still feels all is well except that a medication or something is messing with the platelets. He was very compassionate about my anxiety and tried hard to reassure me. He said that while no doctor can never say "never" , a recurrence was way way down on his list of thoughts about this. Still, please pray that next week brings better platelet numbers. Keir's wbc was 5.5, Hgb 11.6, and hct 33.5. He feels well, and has gained weight. But I am a mom and thus a wreck. Keir will remain off the fluconazole for now to see if that helps.

Lori,

I am sorry that Keirs platelet are not cooperating. I'm am grateful the physician was empathetic and reassuring. I know, even with this, fear creeps in. I promise to pray for Keir as always and for peace fir you.

God bless you

Julie

Hi Lori, I'm glad Keir is gaining strength and is feeling well. As mentioned in my post, I am now back home and continue to be monitored here instead of Melbourne and am feeling stronger every day. However like you, I was getting anxious in the last couple of weeks prior to coming home about my levels, especially the platelets. They had peaked to 136 when they suddenly dropped to 99 at the next count! Doctors assured me no concern as my immune system was still new and was still finding its way. They see this happen all the time and are not concerned. In fact the platelets kept dropping by small amounts each visit prior to coming home. It was 10 days before they set up an appointment for me with my haem/onc at home and those blood draws a couple of days ago showed platelets at 190 - yay! I guess we need to trust in our med team - they know their stuff. My other counts good - neuts 3.0, hb 126. As my doc said, keep doing what you are doing as it's going great - when it's time to worry we'll let you know and it's definitely not now :)

Tas -- thanks for giving your experiences with the numbers -- I am sure Keir and Lori will be encouraged by it. I am not convinced that the machines that spit out these numbers are always calibrated right. I would not trust or worry about any one reading. And, in some cases (like mine) stability of the numbers were as important as the values. It was a couple years before my platelets got much about 90. Not sure why but they have increase over the past three readings (I am over 4 years since my last chemo). But I am still not up to the low point of the normal range. But that's OK, I plan on living another 20 years or so ... after all, I will only be 90. -- dave

Thank you all for your encouragement. Keir feels well, has gained weight, is eating well and exercising, no fevers or pain, and his other numbers are good. The differential shows only normal cells. This is largely why the doctor is not too concerned.

But I am scared. Please pray that the decline halts as soon as possible. I am pretty exhausted and for some reason, this feels like a little more than I can handle. The doctor, a thorough and careful man with much experience, (his name is Tulio Rodriguez) was trying very hard to reassure me and was very compassionate. I just need as much encouragement as you all can muster. I feel a bit at the end of my rope with the whole process. I also feel guilty because I know Keir has had a relatively easy time with this - he feels good, is eating well, exercises an hour a day, has had no infections, etc. I so want my son to get his life back, he has been incredibly patient and uncomplaining and brave. I don't know what is causing this issue but I am so fearful and need to calm down. I know if the doctor thought it was relapse related he would order a bmb. He explained patiently why he felt it was not. So I guess the problem is more mine than medical. But please keep us in prayer.