← Return to My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

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@leilab1

Hi Lori,
Thank you for sharing your valuable insight. His neutrophils were 30 on Thursday, August 24 but have more than doubled today Friday and are now at 70. It's a glimmer of hope and we continue our prayers for this upward trend. We will have the opportunity to see him this weekend but I'm preparing myself for the worst. Is there one thing that someone might have said to encourage you through that difficult time? I spend most of my days in tears for him.

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Replies to "Hi Lori, Thank you for sharing your valuable insight. His neutrophils were 30 on Thursday, August..."

It’s very encouraging with your son’s neutrophils climbing. His all important new white blood cells are ramping up. They’re the disease fighters in the body. It may not take care of his yeast infection…still need the meds for that. But his strength may start returning which will work along side the meds to help him to start feeling some improvement. Right now, he’s going through an incredibly arduous time.

Like your son, I had so many people telling me, “I was going to get through this, or feel better soon”…you know, things said to comfort and pacify sick people. Honestly, even though I trusted my transplant team with my life and they’d ‘seen it all’, when they would tell me that I was going to feel better soon, I’d just smile but inwardly roll my eyes. Unless a person goes through this themselves it’s impossible to convey how low you can feel. But my team was was right. I turned that corner and things started improving. Our bodies are built to heal and they’re capable of overcoming great odds.

My mental turning point was about 1.5 months post transplant. I had to go to the lab for bloodwork and wasn’t having my best day. I’d tried my best to be presentable for public viewing. ☺️ But after my months of chemo for the AML and excitement with then BMT, I looked a little rough around the edges.
A woman across from me in the waiting room started talking to me, commenting on my shoes. She was about my age of 65 at the time and looked fit, with a healthy glow of having been in the sun. I felt deflated thinking “will I ever be well again? She asked me if I had a allo-transplant. I said yes. She looked at me and said, “Oh, you’re gonna be great! I’m here for my 2 year followup and you’ll be surprised how good you’ll feel!” The guy next to her said, “No kidding? I’m here for my 5th anniversary check up!” Then we all chatted until I got called in for my appt.
Honestly, my husband and I looked at each other and for the first time, we were filled with hope! It was a validation to all the words my fabulous team kept telling me! When I heard it from someone who actually walked that walk…it had a huge impact. That’s why I’m here on Connect and also mentoring for my local cancer clinic, helping patients who are dealing with AML and/or heading to transplant. Seeing or talking to someone who has survived and is thriving is worth its weight in gold.

We have several other members in the forum who have also had allogenic transplants. I’d like to introduce you to a few of them… @alive who recently celebrated her 7th rebirthday, @kt2013 who hit a 10 year milestone, @edb1123 who is coming up on 3 years and I just celebrated year 4. We’ve all gotten a second chance at life but it wasn’t without work on our part.

As a mom, I know this is terribly difficult to watch because you feel so helpless and I know as parents we try to be all stoic and brave. It’s ok to let your son know you’re concerned and feeling emotion. Your son will look sick and tired…think the worst case of flu you nursed him through. So just take cues from him. He may not feel like talking. He’s exhausted and not feeling well. But your presence there will be encouraging for him.
How far away is the transplant center for you? Does your son have a full time caregiver with him?