John and Andy,


Thank you both for keeping us all updated as you travel through this journey. Your honesty and candidness will certainly help others. No one wants to hear a candy coded version. Knowing that warriors like your selves along with others who have gone before have gone through the SCT process and been cured gives us all hope and provides inspiration.

I'm praising almighty God for his healing and for giving us the amazing medical innovation that makes this miracle possible! !

Blessings
Julie

Hello,

Day +25 update from us. We have hit some bumps in the road unfortunately. Friday blood results confirmed our fears that our eosinophils were trending up. WBC are up to 6.4, but eosinophils at 2.2 or 35% of our WBC. Doctors are conferring. Testing will likely occur on Monday to include IL-5, chimerism and possibly an early bone marrow biopsy. First step is to see if the cells are my cells or the donor. By this time, myeloid cells, of which eosinophils are one, should be 100% donor. Lymphocytes will almost certainly be mixed chimerism, but that is to be expected. The possibilities are as follows, in order of scariest to least scary. 1. a relapse of disease showing no donor cells. 2. a "relapse" showing donor cells via secondary or regulatory issue apart from the marrow. 3. eosinophilia associated with GVHD 4. reactive eosinophilia

Please keep us in your prayers that we are not seeing either #1 or #2 happening.

John

John,

I will continue to keep you in my prayers as the next days arrive. To some degree, I can appreciate the position that you are in and like this whole process it is not one anyone would wish on anybody. Continue to keep faith brother and know when it is toughest and our world may seem out of our control that God is still in control.

Andy

Amen Andy, almighty God, the creator, our healer, our redeemer, THE GREATEST PHYSISIAN is in complete control. Praying for door#4.

Blessings
Julie

Hello everyone,

I had my Day +28 clinic today. The team still feels content with my progress, so I will continue to stay on a Monday and Thursday clinic follow-up. I guess it's weird to think what exactly does it mean for them to be content since each person's case is so unique.

I was suppose to have my "Day +30" bone marrow test tomorrow, but they ignored my request to be sedated so after raising enough stink about it, it was decided to move it to December 22nd so that my request could be accommodated. The research nurse over my protocol was okay with this delay, so at least I will get to be comfortable in what I consider an uncomfortable experience.

I prayed for you this morning, John. I hope all goes well for you at your appointments today.

Andy

John and Andy,

I have been looking at DS only sporadically. I guess that's what happens when you are over 4 years out from transplant. A bit selfish on my part, and I apologize.

I have you both in my prayers and am very optimistic on all counts.

Andy, you have to relax about the BMBs. There will be plenty at first. Maybe instead of sedation, you could have your wife there. I was sure my wife and children watched the process. It is truly interesting. Any discomfort I had (I was never sedated) washed away looking at the face of someone I love.

I think this will be a very merry Christmas for you and your family, as your bone marrow results will be spectacular!

Same goes for you John. It is so very possible that the eosinophil are reactive. Not long after my transplant, I had a transient eosinophilia, with numbers higher than yours. It all resolved. I also went through a period where my ANC could not be maintained and required Neulasta injections as an outpatient. That too ended after a brief period of anxiety. I am praying for you.

I was laughing when I read about your physical activity. During my consolidations, I used to do 4 to 7 miles with my daughter. After transplant, I was weak of course, but did 2 miles a day around the ward. I once got into a fight with an annoying physician who told me that I was walking so fast that I was going to bang into someone on his ward team. What was annoying was that his ward team was in a patient's room at the time, so I don't see how I could make contact with any of them.

Everything about the post-transplant period is scary. It is a new experience, and you realize that blood counts go up and down. Never hang on one day's numbers.

Praying for both you and Andy. I want both of you to enjoy Christmas and the New Year.

Cliff

Thank you all for the continued prayers. I thought the pre-transplant anxiety was the worst but I was wrong. My eosinophils were up to 4.7 yesterday, more than double since Friday, and now 51% of my blood. Platelets dropped from 220 to 138 in that 3 day period too. The doctors are talking relapse but need chimerism results (those were drawn yesterday) to confirm relapse. Getting a bone marrow biopsy tomorrow as well though I wasn't supposed to have another until day 90. There is still a chance these are donor eosinophils just confused in my marrow that is so used to producing eosinophils. Hoping that is the case though the on call doc yesterday didn't seem to think that was likely. Even if it is, it will be a long road to control and treat it.

All along they told me I didn't need to worry about relapse with this disease and a myeloablative conditioning... That this disease doesn't relapse and my biggest concern would be gvhd and infections. And here I am day +28 being told I am most likely relapsing. They already mentioned a second transplant, this time with radiation. My HES doc back east at NIH tells me not to panic and that there are options left but it is getting very scary. And all was going so well just a week ago. God is in control.

Love and prayers to all of you. Andy, please keep the positive updates coming! You give me much strength. It is great to hear from all the other survivors and family members on here too... Cliff, Dave, Julie, Lou, Tony, Keir, Jeremy, Scott, Lora, Brtwilight and so many others... I am sure I am forgetting others and I am so sorry. But know that all your own roller coaster stories give me and my family hope and strength.

John

John,
Sorry to hear of your setback and can totally understand what you're going through. Seems as though there is always something to combat. My platelets took a dive around day 60 and I also had to have a early BMB. YOU WILL GET THROUGH THIS!!!! You are young and can tolerate any treatment they throw at you. Prayers will be said as they are every morning for you and Andy. Everything comes in steps and this is just a step to clear before going to the next.

Scott,

So great to hear from you. The 60 day slump is discussed a ton on the LLS support group. See link below:

http://community.lls.org/topic/15696-4-days-to-admission-11-to-transplant/page-3?hl=%2Bday+%2Bslump#entry178957

John,

If a second transplant is necessary, then you will get through it. I know of many, even in my small state of Connecticut, who did just fine after a second transplant. I had total body radiation. They now give you Palifermin to decrease the risk of mouth sores. It works great, although it doesn't protect the throat. They used to play rock music for me during my treatments and I sang at "haute voix" as they say in French. It was not a horrible experience.

You will get through this because you are tough as nails (or you wouldn't be in the service). God is in control and God is good. You will SAIL through this. Set your sights on the horizon, not the floor. Before you know it, you will be fine. It has been a long time since I used this explanation, but I will now explain why you will be fine...BECAUSE I SAID SO!!!!

Be well. Be strong.

Cliff

John

Ditto to what Cliff said, praying for full donor chimerism my friend
Lea and Tony

John,

So sorry you are struggling so now, but as others say, keep the faith and look at the end goal. My brother had his second transplant in June, 11 months after the first that did not hold. He had chemo and radiation and he is older and not as physically fit as you, I am sure. He is 56. Right now, road seems to be headed in the right direction. The fluid on the lungs issue seems to be lessening. He sees docs tomorrow and will probably get a unit of blood. I say this because prior to the second transplant he was getting blood and platelets every week! Now just once in awhile he needs blood and docs say this is normal since his blood type changed.
Will keep you in prayers --- and keep us posted as you can. We are in the fight with you.
Brtwilight

Brtwilight,

Sounds good! My blood type also changed. I was O+ and now am B+. it is such a strange phenomenon.

It is nice to hear how your brother is doing, because, with God's help, he can be a good model for John.

John, I am praying for you.

John, I cant say much more than what has been said by many others, you are a rock physically and spiritually, you will get through this. I'm praying every day for your cure, and the cure for everyone. Rely on all that support you have with family and friends, and the lord will get you through. Keep us updated as best you can.
DaveJ

It sounds like you have a very rare leukemia with Increased eosinophils. You are so young and strong you will pull through this. We are praying for you . Blessings!

Julie