Lori,

Everything will be GOOD. Just focus on that. Have Keir get his head shaved. It was liberating and I no longer saw hair on my pillow. Things are going as expected. Do not listen to the negative people. Listen to us. We love you and Keir.

Cliff

Someone (a very dear male friend) told me that my now 1/4 inch of hair (soon to be lost again in the transplant process) is a #2 buzz cut. Who knew? I agree. Shave his head. It really helped me, and even though I have baby fine hair and hardly any hair on my body, it IS growing back. So it's a temporary thing, and in the meantime I have had a heck of a lot of fun with hats and scarves. Not just for looks. Your head does kinda get cold!

Shoshone

Thank you - I will encourage him to shave and get rid of that shedding hair and will try very hard to focus on the positive. The doctors came in and said that they are 99% sure they'll have the results tomorrow, both a relief and scary to us - everyone knows how that feels, I am sure.

His counts are still very low and fatigue is an issue but he is doing very well, from all other signs. Thank you again for the encouragement. It is a true help, and greatly appreciated. Keeping you all in my thoughts and prayers. Hoping to have good news to share tomorrow.

Lori,

Agreed! Keir's hair will grow back. Promise. He'll just be saving a few months of haircut bills. It was a heady feeling when I had my first post-transplant haircut. It was a triumph and meant that I was well again. There is a lot of symbolism in all of the things we go through, and ridding ourselves of those symbols as we move along the transplant road is liberating to say the least. It provides tangible evidence of healing.

I cannot believe that it has been 2 years since my transplant. Time flies whether or not one is having fun! Treatment is no bowl of cherries, but the return to good health is an absolute BLAST! As Keir continues on with his treatment, he will begin to understand what I mean. He needs to visualize those AML cells getting decimated, like the insects in the Raid commercial. They will meet their doom, while Keir will soar into the state of great health that he deserves and that you will absolutely relish. My parents are 90 years old, but when I give them my good bone marrow reports they dance like a bunch of teenagers. They have weathered the low points with me, but have rejoiced in the good parts. AML is not 100% bad (just 99.999%), The .001% good is what Keir will learn about love. I was 58 year old with grown children when this happened to me. The love that I have received from family and friends (including the best friends in the world who write for this website) and have tried to return, is love the depth of which I never could have previously imagined. That love is worth a dose or two of chemotherapy. Honest!

Love,

Cliff

I agree about the shaving. I shaved it off when it started really falling. I remember being very scared about it, I asked my niece to be with me and make me laugh.
But then it was really not bad at all.
Now, two years later, I will soon need to get my first haircut, my hair is past my shoulders.

And the waiting is the hardest part...keep busy, distract yourself and him. And I also identify with dealing with those with doom-face or doom-tone. I only wanted positive people around me. Not those who looked at me in pity, or spoke directly or indirectly about how terrible it is.
It's been almost two years, and hey, it's all been uphill!

Good luck, keep us posted
Abby

Lori,

So sorry you are having to wait. I am spoiled, all my results have come back in 24 hours but that is because the pathology lab is just a few floors down and all work for this floor is given priority one. I get my cbc usually in 45 minutes. For an under impatient person like me this is a huge blessing. Waiting is so hard. I continue to pray for keir.

I agree with the group about shaving. When dx I had blonde hair too the middle of my back. My daughter's all have hair like mine and I wanted the event to be positive. So I arranged to donate to locks of
love who provide wigs for children with cancer. So in my room we had a head shaving paying. To donate my hair had to be in a pony task so each of my girls got to take a turn cutting my pony tail off. Then day had his head shaved and kept it shave until my hair came back.I have not had hair shorter than shoulder since I was a young child. Now it is two inches long and a very hideous brown. Im sure my natural color, I just hadn't seen it since I was 16 :-)

I know in my heart keirs results are going to come back clean. Like cliff says visualize the raid cloud. I love it

Blessings
Julie

Reading this thread I thought I would share some of my reflections on hair loss. I was thinking about hair loss during chemo as something that can be seen as a kind of initiation into the sacred, much like the way Buddhists and Catholic monks do. Kind of like a purification once the chemo has removed all the leukemia from our bodies. Shaving one's head is profoundly liberating and a neat experience, even though it's also a bit sad at the same time too. I'm still not sure if we shed our old lives at the same time or if we just renew our lives - must be unique to everyone. Renewing our lives is a nice thought, creating space for the next phase.

Isn't it great to have a place you can just check in? You sound like things are going great :) Congrats. Neg heads are people that don't know the journey - it's NOT a death sentence, sorry!!!

Hi Lori. I know you're on pins and needles and we all know how that feels. Keir is a strong young man and will come through this fine. I know it's hard to hear, but if the BMB shows he's not quite at 0% blasts it's OK. They'll get him down to zero. As I told you before the type, cytogenics and genetics only give them a roadmap for a treatment plan. Whatever it is, it is - they can deal with anything.

As for the hair, I would suggest it but don't insist. Many people told me to shave my head. After a while it started to get annoying. I just didn't want to, I don't know why. I guess I figured not all of it would fall out and wanted to keep what I could. Of course it eventually all fell out (and grew back very nicely I might add) but at least I didn't help it along.

You're doing all you can. You're getting him the best possible care, giving him enormous emotional support, putting your own life on hold. One can ask for no more than you've done already and will continue to do to see this through. Hang in there, the next step is just around the corner.

Julia,

I do agree. It is kind of a right of passage. My neighbors mother is a beast cancer survivor and the first time he say my bald head he stated. I love to see bald chemo heads because it means we are still here fighting hard. Shaving my head was cathartic for me and was onemore reminder to align my priorities with God rather than the world.

Bless you
Julia

It will also give him a lot of clout and status when he pushes his IV machine around the hospital floor with his mask on. I really hated it when mine started growing back. Hang in, things are going to be OK -- we are all praying for you -- dave

Lori, you have to ride out the storm to get to the calm waters, the storm WILL PASS and you WILL find calm waters, it just takes time....Sending Strength Thru Prayer....Billy

Thank you all for the prayers, thoughts, ideas and encouragement. Yesterday was hard as Keir got a fever (101.5). So a chest xray, blood draw from arm, urine test, etc. and hooked back up to the IV for the first time in about five days for antibiotics. Fever is down.

Sitting in this tiny room waiting for these results is just so wretchedly grueling. He is feeling better today - sitting up at his computer, eating breakfast - which is good. He felt lousy yesterday. I've prayed until I felt God must be beyond irritated with me. So we sit and wait....

Lori,
Don't worry about God getting irrated at you. I've actually been yelling at him lately, and thankfully I know he loves us more than enough to forgive all.

Thinking of you and praying for excellent results from Keir's biopsy this morning.
--Tina

Thank you Tarheelchick and Jay remains in my prayers several times a day. I hope they get good options outlined today; I know people here have given some great ideas.

Keir's marrow biopsy was negative, so we are very relieved and grateful for that. He feels lousy today (fever, fatigue, so far no known infection but is on antibiotics and being monitored closely) and now, as you all know better than I do, we do a lot more waiting - his counts need to come up and another biopsy to check the growing marrow is okay. Being of the Tribe of Excessive Worriers, I have a question: Is there a good chance the next biopsy will be clean in two weeks? Is it often that there is a relapse that fast? Or does it all depend on too many variables to generalize at all?

As always, thank you and please know what an enormous blessing you all are.

Lori,

that is an AMAZING sign. THe chemo is working. It is UNLIKELY that it would show up in two weeks. I have a strong feeling Keir is on a really GOOD path. Now. Please be calm. The next weeks waiting for counts to come up will not be FUN for Keir. It can get miserable, but we all dealt with it. It MIGHT NOT, but it can be rough. It was for me. HOWEVER, knowing the blasts and disease have been cleared should be your trojan horse of strength. IT IS AMAZING AND WONDERFUL NEWS.

Ed