Lori,

My family prayers for Kier everyday-I know you'll have favorable results tomorrow!!!!

Blessings and Peace!

Julie

Lori -- his feeling great is the best sign you could have. We are all praying for you and him, and I am sure that things will go well tomorrow and Keir will be ready for the next step. Thanks for keeping us up on everything. I am sure you will be feeling much better tomorrow, but your apprehension is understandable. Take care and stay as distracted as you can be -- dave

With you tomorrow Lori. I expect good news!!!

The results were good - still in remission! Thank you all again. I was a dreadful wreck inside, but was able to keep functional, again, due to all the help and advice from all of you, and your prayers.

On Wed. we meet with the transplant team. It looks like that is the way things are leaning - find a good match and go with that rather than hope chemo alone does the trick. However, on Thursday, Keir (and I) re-enter Rush for his first consolidation treatment. They indicated it would be 5 days if all was fine (in terms of needing supportive care) but might be a few more, depending.

Elizabeth Glaser (founder of the Pediatric AIDS Foundation) wrote a book called "In the Absence of Angels." She spoke about the difficulty when she and her children were first found to be HIV positive, how angels to help them were noticeably absent. I have been so blessed by all the support on this board - I found it by sheer "luck" (I don't really believe that but I did stumble on it) at a time when I felt as awful as I've ever felt in my life. I can never thank you all enough.

I am elated to hear this news of Kier! So happy for you both and I have a great expectation that Kier will sail through his consolidation treatment. I hope you both celebrate tonight and then have a peaceful night's sleep....you deserve it!
God is good.
--Tina

Thank you Tina, and my whole family is praying for Jay daily.

Hi Lori, such good news and so glad that Keir has done so well with the first round.

Keep doing all that you are doing, as everything you did helped him the first round so it will help the second round.

The cycle is about the same for the consolidation. From our experience mum was in hospital for 5 days (for the chemo) and then sent home. She had to go back to hospital every second day to check blood work and if she needed a bag of blood or platelets.

When her blood bottomed out about day 10 she was very careful doing everything.... for mum she went back into hospital on about day 15 as she just knew she needed hospital support. Our situation was a little different as she wasn't staying at her home she was staying in hospital accommodation, she thinks if she was in her own home she may not have had to go back in.

Her blood numbers started to rise again about day 21ish and once it was above the magic 1 number for neophils she was sent home again for the 2 week break before consolidation 2.

Just remember to keep up the bubble, lots of water, low bacteria food, walking, cleanliness and they will get you to take his temperature 4 times a day, if it gets to the point they tell you make sure you get back to the hospital asap even through emergency just tell them you are neutropenia and a patient of the ward :)

All the best for round 1 consolidation. xx

one word. YES!!! YES!!!! YES!!!

Trust the team. The plan will be the right one.

I am sooooooo freaking happy. Ok, that's more than one word.

Ed

It is time to give thanks. We have all been praying for Keir. Let's give God the credit for all good things.

Things are going well, but do not take anything for granted. I do not want to worry you -- Keir is going to do OK --- but I had more problems with consolidation than I did with induction. Just do not take any chances -- get him to wear his mask when outside of his room, and then there is all of the food rules and for sure keeping everything wiped down and staying away from people. Will be in touch -- dave

Congratulations on the clean biopsy, that is such a relief! Sounds like there is a solid plan forming, that always helps with decreasing the anxiety. A good many of us had fevers when our counts dropped because of the consolidation chemo. Most often for me it was because of neutropenia and not because of infection. Praying for a match to be found soon and all goes well. Thank you for the update.
Take Care,
Suzanne

Amen Dave- Give God the glory!!!

Just an update: We met with the transplant doctor and nurse coordinator. They explained that due to the FLT3 TKD Keir was considered at higher risk of relapse if he went chemo only and that a bmt was his best chance of a cure. They went over all the risks - which were overwhelming - but they were straightforward and not discouraging at all. My daughter Isannah was tested today to see if she is a match; we should know in a week.

Tomorrow Keir (and I ) go back to Rush for the first round of his consolidation chemo. If Isannah is a match, this may be his only round, otherwise they will do it until a match is found. Keir gained almost six pounds during his 2 and a half weeks at home and feels great - he jogged a short ways today (as a runner, he missed that as much as anything).

As some of you know, I'm still driving myself nuts over the statistics I read earlier and am working - hard - on dealing with that. (by the way, I found out something interesting - one of the reasons so many German donors are found is that German employers are very encouraging and supportive of signing up to be a donor - they give time off and extra pay, etc. What a great idea! ) Keir is nervous about the consolidation chemo and possible side effects, but is prepared to do the "bubble" very carefully. I'm hoping it all goes very well. Thanks again to all of you for your support - I am praying for each of you daily.

Lori -- thank you for your prayers and we are praying for you and Keir as well. Keir can understand this -- it is not a sprint -- it is a marathon -- get ready for it and don't even think about it being "over." Then never told me how long my chemo was going to take, and the first night I asked the push nurse (that's what I called her, my drug pusher -- they push some red stuff in with the other IV stuff). Anyway, she said "unt uh, don't you even think about that ... that will take care of itself." And it did, here I am four years later. Just take it one day at a time and thank God for the fact that Keir is feeling so good. I sure would not ever think about running between my chemo treatments, so he is doing a whole lot better than I did. But that can be too good if he gets tempted to take chances -- so keep up the good work ... you are doing great! -- dave

sounds like you guys are doing everything possilble.

Good luck with the BM matching :)

xx

My husband is FLT-TKD too. We went with chemo only, because that is what the doctors recommended (he is NPM1 positive too maybe that was the deciding factor). There are so many variations of the disease it is so confusing. We just had to give up some control and give it to the doctors. I'm a control freak, but it was actually comforting letting the doctors decide this. They treat this day after day and know a lot more than I do. He was the only one on the ward with aml who did not get a transplant. The one aml patient we keep in touch with is doing great after her transplant (she had it last October). Keir will do great too. Best of luck.
:) Julie