That his wonderful news that he is at 100%. Thats the one that counts, not the weekly or bi-weekly blood tests. I hope to get the same news today. Prayers to you both.

Dave J.

Keir is now about day 77. His platelets are back up in the 90s, his wbc after falling is back to a better level, and his other counts are not bad. I'd like them to be a little closer to normal but the doctor seems happy. Keir feels good, physically and is pushing the exercise - about four miles a day (combination of walking & stationary bike depending on weather), doing light hand weights, some tai chi and other exercise. Trying to keep busy and he is staying positive. His appetite is better -he weighs more than he has as an adult, ever (!) but no fluid, it's just lack of his normal activity (he was a runner before all this). Insomnia a bit of a challenge but we are trying various things.

I am struggling (still) with anxiety. Bone marrow biopsy comes with the 100 day post transplant period and I am scared, of course, but every story of a post transplant relapse makes me nutty as well. I just want my child to have his life back and it has been 9 months since he's done anything in a public place non medical; it's really hard to watch this when it is your child.

So please keep praying for his recovery, his counts, and his ability to get back to living!

Hi Lori,

Thank you for your updates on Keir, I am so glad that he is continuing to do well!

Now we need to talk a bit about you! I have to say, I laughed so much at your 4/27 post re: grabbing the therapist's lapels etc!!! I can still barely see through my tears of laughter and empathy! I have two teenagers at home and I won't begin to go through all the issues there (insert crying, stressed mom emoticon here). Seriously, though, I am looking into practicing mindfulness to alleviate stress. I think that's the only thing that can work and I do recommend it. I just need to learn how to do it regularly...

xoxo
Monique

Thank you all for the encouragement,support, prayers, and suggestions. Tomorrow is "clinic day' again and so of course my anxiety is building. It is necessary but very tough to do this twice a week, plus the daily stuff. The isolation is wearing on all of us but Keir is really beginning to struggle with it. If any of you would like to FB message him (I checked with him and its okay), his name is Keir Challinor and he could use some encouragement generally human contact, even if it's cyber! He is shy and just kind of finding it such a struggle to feel connected to people, which breaks my "mom" heart, of course. Monique, the therapists mean well - they really do - but they are absolutely hopeless! In addition to the cliched "And how does that make you feel?" nonsense, do they honestly believe that decorating a surgical mask with funny pipe cleaners is going to make a just-turned-30 year old young man who's life was blown up by AML feel better? If so, I think they are the ones who need therapy! Maybe I'm just being cynical at this point. I don't mean to sound ungrateful, there is only so much they can do - but sometimes doing nothing is better than doing dumb things.

Keir's numbers had improved somewhat Thursday; I was particularly happy that his platelets were holding in the 90s and that his ANC had finally come up again to 1.5 after a few weeks of being down. But I have got to get it through my head (it may take a stake, like a vampire) that these numbers are going to bounce for a while. The insomnia may be a result of some of the medications - I swear, we've tried everything short of having actual clouds for Keir to lie upon while an angelic choir sings him to sleep and he STILL lies awake until 3 a.m. That is an annoyance, not a serious problem, but it's kind of another reminder that our lives have changed in almost every way imaginable and kind of frustrating. Low level and we spend a LOT of time reminding ourselves of what we have to be grateful for, believe me. A couple of people have asked about respite options - there are none via any official routes because our income is too high to qualify, and I have struck out in terms of getting any family/friends/ etc. to help most of the time.. One thing this whole illness has made me realize is how "atomized" most of us are - in a crisis we are shockingly alone and it's not good. The cyber community has become extremely important to me and there are a few people in particular who have saved my life (and i don't use that phrase hyperbolically) but as I've mentioned to one member here, I wish i could just drop by and have some tea and/or wine with each of you once in a while!

I have a couple of specific prayer requests for those who pray: Please pray his numbers continue to get better, and that his bone marrow biopsy - scheduled late this month - is clean. Keir will be at Day 100 in about 3 weeks - hard to believe - and he wants his life back SO badly. He does not complain; he has been amazing. But I can see his depression deepening and his loneliness getting entrenched as he watches his friends move on with their lives as he sits alone in his grandparents' house month after month. He is so grateful to his donor, for this second chance. But he is unemployed, has had only four visits from friends since October, and just feels at a loss as to how to rebuild a life, I think....wish I could take you all with to the clinic visit tomorrow. I shall in spirit. Thank you all and you are all - each of you - in my prayers.

Lori

You and Keir have my prayers for stable counts and a clean BMB. What a blessing to be 100% donor. Isolation is so hard. Although I spent 10 months away from the public I had my husband and three daughters plus I teleworked full time so I had tons sometimes too much) of cyber contact.

I cannot imagine battling this at Keir's age when life is at it's prime. Nor can I imagine being the Mother of a patient-so heart wrenching. For Keir's insomnia has he tried sleep aids? I continue to use restoril and love it. I wake up alert and not groggy. Just curious if he's tried any-they certainly help me as I have always struggled with sleep.

Julie

Lori,

Keir will also move on from this disease and be just like his mates. He will be a better person with more love for you than ever for all you have done for him.

My prayers as always for you both

Majella

As always you and Keir are in my daily prayers (as is everyone in this group). I hope you are doing better and that all news is encouraging.

As I would always tell my husband "one day closer to full recovery".

Sending you a hug!
Colleen