I feel for you Lori. I know exactly what you mean and went through the same anxiety which continues to this day although much less severe.

The only thing that I can tell you from my experience that might help is that when I was at 100 days my doctor was in no rush to do a BMB. They finally scheduled one on about day 130 after I kept asking. She said it was just to confirm what they already knew. So my takeaway is that they can tell a lot from the bloodwork and the trends they see. You're at a very good center with very experienced doctors. If there was something to be concerned about they would have told you. Expect the BMB to be routine and come back clean. No reason to expect anything but good news. Good luck and take care.

Lori,

Such great news that Keir is near the 100 day mark, what a blessing from God. My Hickman was in for over ten months which is unusual that he did not have any issues with the port. I agree with Lou, if there was anything to be concerned about. The lab trends would bide concerning. My team says they don't focus on the numbers but rather the trend. As you know, my platelets have been crazy dinner dx14 months ago. I have my monthly labs on Wednesday and I'm a little nervous although I know almighty God is in control. Last month my platelets were the highest they've been 99. Well see what they say. I'm praying for Keir and you as always

We will all continue to pray for Keir and you. I am sure that things will go well, but it is good that they are making sure that all is well and not just taking it for granted. I to not think that I had another BMB after my last chemo. They said they could tell by the stability of the blood numbers -- not the actual numbers themselves. For me this is both low WBC and Platelets, but it has not had any effect on me -- the numbers are stable and actually consistently rising the last three checks (which is over 18 months). Seems to me that the total treatment must have killed or disabled the mutant stem cells or there would be some negative indications by now. Take care and please keep us up -- dave

Hi Lori, please say 'Happy 100 Days' to Keir from me as I will also join him on that milestone on Friday :) I have been fortunate in that my clinic visits have been fortnightly since my early return home from the transplant centre. Still get the anxiety with blood draws but at least the time between is spent living my new normal. My mother is holding a 100 day party for me on Sunday (similar to one she held for me nearly 50 years ago as is the Korean custom) so I can celebrate with close family and friends who have helped me on my journey and to pig out on the 'forbidden' foods I have been missing like crazy! I had a bmb when I left Melbourne transplant centre to return home and they said I would not need another at my 100 days if my bloods stayed at acceptable levels. I met with the head of my transplant team a couple of weeks ago on his quarterly trip to Hobart and he said he really doesn't feel he need to see me again until my 1 year anniversary at which time he still wouldn't push me into a bmb unless my levels warranted a 'look'. Silly as it sounds, the fact that he felt happy to leave seeing me till 1 year post transplant made me feel sooooo good as if he had faith I had a long term future. Lori, you have been an exceptional caretaker and mum to Keir but now it's time to celebrate a great milestone and allow yourself some hope - I have no doubt that Keir and I will be sharing some more seriously long term milestones :)

I cant begin to say i know how you feel because i don't. Going thru this for myself is not a good experience, i can't imagine watching one of my children go through it. I've always said parents with sick children must be the strongest people on this planet. It breaks my heart to see it. I pray for you and kier on a daily basis.

I'm in agreement witht others, the bmb is only giving you a more accurate account of the what the blood work is already telling you. The only reason i continue to have them is for the clinical trail i am participating in. Otherwise i wouldnt have had another one until the one year mark.

It sounds that Kier is doing great. No reason to think that the biopsy will be anything but good. Hopefully he can start to do the things that he enjoys and see friends, and generally start to live a normal life again. Thats what i'm hoping and praying for.

Dave J

Thank you all so much for your support. Keir's latest numbers were pretty stable - hct and hgb dropped a small amount, platelets and wbc stayed essentially the same and Keir still is well. Thursday is the big day. Please keep him in prayer and I will update you all. If all goes well, he gets discharged from this aspect of the clinic ("high dose") and goes once a week to regular check ups for a while. Keir's doctor said that they expect the biopsy will confirm what they are seeing in the bloodwork. "Mom" is a wreck anyway : )

Lori,

Best wishes to Keir on this milestone. Here's my two cents work once the bloods are good all is well . I have hit 21 months post transplant and have never had a BMB since before transplant. My centre says if the numbers are good we leave you alone.

Prayers
Majella

Hey Lori. Don't read too much into Loyola wanting a bone marrow biopsy at 100 days--University of Chicago required me to have one as well. Although I haven't had one in years, I did have a couple bone marrow biopsies post transplant. Each doctor is different. At a certain point, they also left me alone, taking into account only my CBCs. As you know, I've been praying for Keir. I hope you guys are planning a big celebration for him on Friday! :) God bless!

Lori,

I don't really need to tell you my opinion, because you know it. Certain tests, like a BMB at day 100, are simply protocol. Keir's doctors already know his marrow will be ine. I KNOW HIS MARROW WILL BE FINE!!!!!! As you know, after 32 months of healthy survival after BMB, my doctor has no plans to ever look again, unless there is some ominous change in my numbers, which she seriously doubts will ever happen. You should look at Keir's upcoming BMB not as a cause of anxiety, but a cause for celebration as Keir passes this milestone (rite of passage) will absolutely FLYING COLORS. Trust me. Put on your tap shoes.

Cliff

Thank you all for your support and kind words to me. Keir's doctor does not expect any surprises with the results, but my mind immediately goes to the "Well, no one ever expects surprises!" place; this is something I am kind of stuck on and am going to have to just push through. Your support is invaluable. Thank you all and I wish I could take all of you with tomorrow as a cheering section. Majella, I hope you are feeling better; you were on my mind a lot yesterday, and you are all in my daily prayers.

Hoping today went smoothly and for perfect & clean results
Also for Keir to take start taking his life back and for you to rest and feel more at ease

Fingers and toes crossed for clean biopsy results! I'm confident, Lori!

Lori

I sure hope everything went well on Friday and that Keir is doing good. My 33 year old son was dx on 3/24/14 with MDS and AML and will also be under going a SCT when a donor is found.

Thank you all. Keir continues to feel well. We have not heard anything yet re: biopsy results so I continue to be a wreck. His appointment is at 2:30 tomorrow at the regular clinic. I am hoping desperately that by now, SOMEONE will have had a look at the biopsy material taken and if blasts were seen, would have paged the doctor or otherwise notified us. Been since Thursday. Anyway, all prayers most welcome,and Worried mom, welcome to the group and please know we are here for you.

Lori,

Sho happy Keir has surpassed this major milestone. I know the bmb will bee clean, praying that it be so

Julie