John & Julie,

Today is Day +17 for me and there is starting to be talk of me getting to go home on Monday. Lately, they have been switching my IV medicines to pill form adding a new one daily so that I can go. My mouth all and all has healed and looks much better than a few days ago, however, my taste buds are still pretty fried. My throat is still giving me some issues. Unfortunately, my med team says that's just something that can happen and since it is in the throat area, all that can really be done is wait for my body to heal it.

It's hard to believe that I've almost been in here a month already. Time really does fly when you feel like crap half of the time you are here. I am quite ready to be out of the hospital though. My sisters and girlfriend all came and spent Thanksgiving with me today. Although my eating options were limited which was a shame because at MDA Pediatrics, they cook a nice feast for patients and families, I enjoyed their company and I look forward to being able to go "home" now.

This process doesn't seem real at times and especially when I think back to all I've done to get where I am at now. I will continue to trust God as this moves forward and look forward to every moment ahead no matter how big or how small it may seem.

Happy Thanksgiving Everyone!

Andy

Happy thanksgiving to you Andy, and all of my friends on DS.
I'm glad you feeling better and maybe busting out of there soon!!! it's a slow process, but each day is a step in the right direction. Will you be moving to a place on campus for the 100 days?

My grandpa lives about 15 minutes North of MDA, so I will be staying there during my remaining 100 days.

Following both of your stories and progress. Hopefully, it will all be uphill and better from here on. Prayers are coming your way.

My brother after about 6 months has begun to drive and do a few normal activities --- movies tonight. It is so heartwarming. You will both get there too.

Happy thanksgiving guys and to all here. We all have a lot to be thankful for, and thanking you guys for your posts on your transplant journey. It will help lots of folks down the line. Just 2 years ago I spent Thanksgiving in the ICU with a fever and Christmas for the transplant. Glad you are going home soon Andy! Praying for you're guys cure.
Davej

Hi everyone! I had a mini haplo on May 13, 2015. Though I've hit a little snag with lowering chimerism, I've done pretty well and have resumed normal activity which includes tennis 2-3 times a week, walking 5 miles a day and travel. I've leaned to just do it. Hope everyone has a nun eventful holiday season ( including me)
I've also learned prayer is a powerful thing! Keep me and everyone here In your prayers.

Team,

I feel really bad that we haven't given an update because it has been eventful for us in a very good way.

First off though, Andy, I am very happy to hear of your progress. I think you had a worse bout of mucositis than I. I know mine wasn't fun and can't imagine dealing with the throat. Mine was mouth and much lower that caused problems. I really admire your courage through all of it, I really do. Well done, sir.

So, our update. Doctors came in on Thanksgiving and officially told us that we were free to go that day. What an amazing Thanksgiving gift from God. My doc, who also happens to be the attending for the month I was there, told us that we were doing great.

That was quite the reversal given that we were just hours away from being put on mega doses of steroids to fight what he though was a very bad instance of GVH. The rash that was over my entire body essentially completely resolved. Doctors think that it was likely a drug reaction or a cytokine storm from all my dying eosinophils and mast cells. Thank God we didn't start down that path.

Leaving on Thanksgiving was also very special since when we checked in on November 2nd, we set Thanksgiving as our goal for release. The docs scoffed and said that was very "aggressive", but we continued to believe it was possible and continued to pray for its outcome. Just one of a couple dozen prayers answered in a very overt way from God. It really has been amazing.

Yesterday, we had to report to the Infusion Treatment Area for outpatient care. The good news kept coming after our blood tests. WBC up to 4.2, ANC up to 2.2, AEC down to .19, hemoglobin up to 10.5 and platelets up to 198. Just amazing numbers. Met with the nurse, NP and attending doc, who happens to be the chair of BMT at Stanford. All of them talked with us and agreed we were doing so well we didn't need to come back in until Monday!

To celebrate, and since I was feeling pretty energized, we decided to go for a "long" walk. Did 3 miles all at once with some minor climbs and probably close to 4 miles overall. It felt good to start my training regime again.

We know this is a marathon, not a sprint, but it was nice to get in some early victories. We continue to watch closely for GVH. Also have to get another echocardiogram to see how my heart has handled all of this, but we are hopeful that all will be good news.

Andy, the waiting towards the end was especially nervewracking. Keep taking it day by day and we will continue to pray daily that you are out of there soon. You are doing great and I am thankful that we get to share this journey together.

Vr.
John

John,

What an amazing recovery-giving almighty God all the glory!

Blessings,

Julie

Welcome Annie to team Transplant 2015!

Andy,

Praying for parole tomorrow ;-)

Julie

How are you doing Andy? Mouth sores healing with the neutrophils?

John

Hello, everyone!

I've been pretty tired since being discharged so I haven't been on here.

I was let go Monday, November 30th. It has been a fairly trying experience for me thus far. My counts look good, great actually, but yet I feel so fatigued. I had my first ATC follow up with my NP and PharmD and everything I described they didn't seem taken aback as if they haven't heard that before.

I want to eat so much food so bad, however, my taste buds are still not back yet, I'm probably at 20% normal taste of what I was pre-transplant so that has been frustrating. I also can't just force a lot of food down since my body doesn't know how to handle normal portions at this point. I'll have to retrain it.

My throat and mouth are at a point where I can eat once more I just can't taste most of what I eat/drink. I have developed some dryness around my eyes which started just before Thanksgiving but was given some stuff to help keep them lubricated so that ought to at least cross that one off the list.

I in no way thought this would be easy journey but goodness it has been tougher than even I would have predicted. 2 months ago, with counts like I have now, I'd be bouncing off the walls.

12/1 Labs:
WBC: 10.9 (still easing down from my last neupogen which bumped me up to 30.6 lol)
RBC: 13.3
PLTS: 236

Right now, my team says they want me to eat when I can, but that they are more concerned with my fluid intake. I assume that's due to the body organs that run efficiently based on proper hydration. If my numbers stay stable, it sounds like I will get the weekend off from clinic so that I will finally get a couple days of hospital free rest in the truest sense of the word.

I'm sure I just overwhelmed some people but I want everyone to fully see that this experience can vary and that there really is no two paths alike.

How is everything going for you, John?

Andy

Andy,

Excellent to hear from you. We were praying that Monday was release day for you. Glad to hear.

Wow, your counts really do shoot up on the shots.

I totally hear you on the taste buds. Everything to me tastes weird, from a bit off to WAY off. I choke down what I can, but I am still 17 pounds or so off my check in weight. I guess I am maintaining at the moment, so that isn't bad.

I am always cold. Docs say it is combo of weight gain and hair loss. Either way, I guess I know how my grandmother always felt. I was always burning up...she was always freezing. :) I'm like an old man with the temperature.

Today was an off day for us outpatient wise. We went in on Monday. Counts were: WBC: 3.3, ANC: 1.4, AEC: .27, Hgb: 11.2, Plt: 198
Docs were fine with the slight drop. Hopefully everything but the eosinophils will be up tomorrow morning.

Been pushing myself to hike nearly everyday. Did a 4 miler on Sunday with 800 feet of elevation gain and another 4 miler today with a slightly smaller climb. I am definitely not in the shape I was before, but the mask probably exacerbates the situation. My resting heart rate is coming back down finally. It was in the upper 40s/lower 50s upon check in. Got up to upper 80s in hospital, upper 90s with fever, but down to around 60 now.

Still have some heart tests which we are anxious about. Stress echo on the 18th of December and then seeing the cardiologist in January.

Not happy to hear about how tired you are, but it makes me feel better. I get pretty beat in the early afternoon especially. I feel like I should have the energy I had before, but I know we are only on Day +21. Patience not my best virtue.

Keep charging transplant brother. One day at a time....

John

Sounds like things are going as they should for both of you. It will definitely take a while for your taste buds to recover, it took me a long while, 8 months or so before I really looked forward to eating anything, but I think that is the exception to the rule. John, I was always cold after the transplant also, mine was done in the winter of 13 and it was a hard winter in Michigan that year. I still am more sensitive to the cold than before, but I think that is more the cooling blankets they used on one of my fevers, that was probably the worst part of the whole experience for me. And I wouldn't worry too much on the echo, with that heart rate, it must be pumping pretty good. Andy your blood counts are exceptional. A good sign it would seem. Nice work to you both on the excellent updates.

Praying for both of you, your complete cure, and the cure for everyone.

Davej

I can also join the club of always feeling cold. Even at home, I have to use several blankets at night when my dad sleeps with no blankets. I guess finishing this out in the winter time is kind of just the luck of the draw, but sometimes it is what it is.

I finally get a day off tomorrow where I don't have to go into the clinic and my NP said that I will get the weekend off too. This is great news to me since I've in some shape or form been at MDA everyday since November 2nd.

I'm starting to eat knowing that I can't taste much beyond sweet foods. It's like my taste buds have a taste timer and beyond that I can't taste anything. I think overall I lost about 20 pounds from start to finish, so I'm working on getting that number up. I have some dryness around my eyes but otherwise no other complaints.

I understand that time and rest is what will heal these wounds, but as John mentioned earlier "patience isn't my best virtue." I don't feel that I am too hard on my body per say, although my girlfriend would disagree, but I've always been in tip top form more or less so this is very foreign territory to me.

Day +23 and counting!

Andy