Prayers sent for stable numbers for your son. I'm very sorry for your situation, i told my wife when i first found out i had aml, just thank god it's me and not our boys. It has to be very very hard. If he is feeling really good it is for a reason, he is doing good. I know it is easy for me to say but try not to worry about stuff you can't control. take care of yourself, i'm sure your son doesnt like seeing mom all worked up.

Lori,

I am so sorry to hear about your Mother. I hope she it's okay. I so agree with mtnbyker. My first question when I was diagnosed was is it hereditary, thinking of my three precious daughters. I pray for their health daily. Please know I am praying for your family, especially Keirs counts. We all are so fixated on our labs and during this critical first 100 days, you are all the more focused and on edge. Also S ending up prayers for peace for you Lori.
May God bless you,

Julie

Hi Lori,

Hope Keir's numbers were more stable today. Please keep in mind that his body is hard at work rebuilding his system so those numbers will fluctuate, it truly is a miraculous process. As you said, his doctors are not concerned. I am sure they see this all the time. He is feeling well and every day you are another day into his recovery and futher away from diagnosis and the transplant.

Sorry to hear about your mom, I hope she is okay. As always you and Keir are in my thoughts and prayers. We are all on this journey together.

Sending you hugs!
Colleen

I'm sure you know this hymn, it always helps me when life is overwhelming. Prayers to you.
Trish

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heavn and home,
When Jesus is my portion? My constant Friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
Refrain:
I sing because Im happy, I sing because Im free,
For His eye is on the sparrow, and I know He watches me.
Let not your heart be troubled, His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

Praying for great results today Lori.

Julie

I wanted to update by saying that Keir's platelets came up by 8, which is good (not high but a nice small bounce), his wbc came down a bit but his doctor was not worried as it's not in risky levels and the other numbers were decently stable. They are doing another chimerism test now to see how much of his blood is donor origin and i would truly appreciate prayers that it is 100% again. I am having a rough time and had a bit of a psychological collapse, for lack of a better phrase. The stress after eight months of caregiving solo has been very rough. I am thinking of you all and grateful for all of you.

Great news on the platelets Lori! I can relate 100% to the wear and tear of being a caregiver sending you prayers of strength and constant hope and positivity!
We had off to UOf C today to get their own bone marrow sample and the microscan as anticipate starting reinduction tomorrow. It's hard to put into words how I feel but I know every single one of you knows especially you Laurie being a caretaker
Please pray that this medical team does everything they can to cure this beast in my husband once and for all

Lori,

So glad Keirs counts are up and stable!!!! As I've stated before, going through this as the caregiver to your son must be daunting. You have both weathered all the twists and turns so well. I'm praying for great test results and a respite for you.

May God bless you

Julie

Thank you all, and for the prayers, thank you very very much. Keir feels so well that it is encouraging but the numbers are driving me - possibly literally - crazy. I was, I want to say, extremely grateful to God and to all who prayed, that his platelets came up. Still low but UP. It would be a true answer to prayer if his second chimerism test were also very good. For Keir, of course, but also to give e a tiny bit of breathing space. I have got to figure out a way to get a small break soon. I apparently looked ghastly enough yesterday that several different staff members told me I should contact the psych dept at Loyola for help. Alas, I am already on many meds and so forth - eight months of this nonstop and mostly alone have taken their toll. I didn't realize it showed in the way it obviously does, though (I must have looked as though I crawled out of a grave!). I am so thankful to all who have reached out to me; you know who you are, too long a list to mention here but some of you have shown Keir and I such love and such patience to his basket case mom that I can never really repay you but want you to know that even if I forget sometimes to tell you, you are in my heart always.

Lori,

Any update on Keir's chimerism test results? Praying for great results.

Julie

T&P that the chimera test is 100% donor.

I hope your mother has a quick recovery.

The bouncing numbers during the first few months drove me batty. CMV drugs suppressed counts, I was spared the bactrium due to an allergy, but the GVHD when it hit - we had a minor freak out over the drops until my NP was like normal normal normal - we've been waiting for it to hit.

the caregiving burn out is normal. please take care of yourself. You aren't any good to anyone if you burn out. No one really gets how hard 24 hour caregiver role is until you've done it.

Does the hospital/county have any options for respite care to give you a break? Social work office might have a some options. Family or anyone through a local support group or church that is healthy that could stay with him (and your mum if she needs it) for at least an afternoon so you could take some time for yourself to relax/shop/spa afternoon/nap/breath? Some time to destress take a few moments to recharge yourself?

I think my DH only made it through my stuff as he switched off with my sister once we got to transplant. (He'd done 95% of all of the chemo stuff for year plus prior to transplant) After we got through the first 2/3 weeks post transplant (she got some time to recover from being the donor) He went back to work and she babysat me during the work day. He took over once he got home and had me for weekends. He was allowed the normalcy of going to work.

Lori -- we are all praying for you and for Keir. I appreciate all of the people on this forum and how they respond to calls for help. Let us never underestimate the power of prayer. We will keep praying that all of the tests turn out well. Try to take care of yourself. -- dave

No updates yet. I would hope that if the chimerism results were a problem they would have called as they would need to schedule a bmb. I am desperately hoping no news is good news.

I am exhausted, and not in great shape so if I do not write that is why, Keir is okay as far as I know and exercising more.

Prayers MUCH appreciated and needed

Keir's chimerism results were good - "100%" . HUGE relief. I came home and kind of collapsed. The stress from this is cumulative in a way that is really not good. Some of his other counts are rather low, such as his WBC; doctor suspects medication (and Keir, like most post transplant patients, takes fistfuls of the stuff) . However, please pray that his counts stabilize and rise closer to normal. We go back to clinic tomorrow. I am fighting major PTSD from all of this (I am on meds, but personally have not found talking therapy helpful. The clinic has a therapist come around but they say things like "be gentle to yourself." I know she means well, this young therapist, but it's all I can do to restrain myself from doing one of two things:
1. Grab her by her lapels and ask her what the heck those nonsensical phrases actually mean or
2. grab my date book and ask when I can put her down for taking my mom grocery shopping (warning her to be very careful as she's a fall risk), or which day I can pencil her in for staying with Keir so I can get this much vaunted "break" they all tell me I must get.

Anyway, sorry to rave! I AM so relieved and grateful that his chimerism test was good; it was a direct answer to prayer and I celebrated by having my first post diagnosis haircut. What I a really looking forward to is KEIR needing one! He is still totally bad since February and hoping things grow soon. Other than the insomnia that continues to plague him (even Ambien didn't help) he feels quite good and the other primary concern I have is that some of his numbers are low and I obsess over numbers despite some very wise people here warning me that it is not a good thing to do.

Tomorrow is "Clinic Day." We still are going twice a week if all is well, occasionally three times. Just waking in that building is beginning to raise my anxiety level; this illness is quite the PTSD trigger. We've been walking outside quite a bit but I see rain is forecast for much of the upcoming week so that will be unfortunate. This has been the coldest spring I can remember! And May is next week. At least there is no snow.

May I ask for continued prayers for Keir, for his healing and that his counts would improve? Thank all of you for your support and please know you are all my thoughts and prayers. Healing and peace to all!

Lori -- you can be sure we will all be praying for Keir and you -- I feel confident that all will go well and that things will continue to progress. Hang in there -- you are a great care giver and a great inspiration to everyone on this forum. Take care -- dave