Hi Andy. My 18yr old son had a haplo transplant on 9/28/15. So he is +8 days today. All in all, the transplant has been relatively uneventful so far in terms of side effects. Nothing major happening there. Our big issue, and is the potential of being a whopper, is they don't know if my Don got enough cells from his Dad. They had issues with the harvest, there was low cell concentration and then add to that they were a different blood type, so when it was all said and done, my son only got half what they were hoping to give him and have none on reserves. So they are waiting until day 30 and if he hasn't shown signs of engraftment, they will attempt a 2nd harvest from my husband, peripherally this time, and give our son a boost of stem cells and hope to God for the best. There were no other matches worldwide, so we kind of have all our eggs in the basket and it makes this momma VERY nervous.

Well day +8 just took a dive. The first week post transplant was pretty easy. But today, his counts finally bottomed out, mucousitis is bad, but still no sores to my knowledge, difficulty swallowing, nausea and vomiting are picking up again and transfusions have begun. None of this, is out of the ordinary. We just got lucky in that the first week was uneventful.

Andy,
I've been pretty quiet on the board lately but wanted to share with you and everyone else that we will likely go into transplant more or less together. I get admitted to Stanford Oct 19 for Bu-Cy conditioning and then have the unrelated donor (33yo male) transplant on the 27th. My July transplant was delayed in order to try an experimental drug, midostaurin, that has been very successful in patients like me with severe hypereosinophilia (it's also used on some types of AML). We finally got to start that last month but unfortunately it didn't work. I'm ready for transplant. Ready to get better.
My family has been praying for everyone on this board. We are so thankful to be part of the DS network.
John

Andy, My biggest struggle was appetite. If yours is good now, eat up, stock up before you start the chemo. And bring snacks from home. Hopefully your hospital food will be better than karmanos was. And use the mouthwash, the mouth sores can be really bad. Do your best to walk your laps no matter how tired (and you will be tired) you are. I'm not much of a TV watcher but you will get plenty of time to do that. Books and video games are good too. And some pictures from home to put up so I feels a little more at home there.

I remember that one of the chemo drugs was giving me hallucinations, thought was roof was leaking, looked like the ceiling was coming down at one point, so that can happen if you are on the same proto as I was.

Good luck, hoping and praying that it is an easy road for you. Let us know if you have any specific questions, and how you are doing if you can.

DaveJ

Andy,

I agree completely with Dave J. Eating is paramount. After my transplant, food was, sadly, repugnant. All I could eat were grapefruits, pasta with tomato sauce, and eggs. My first meal, a small fish fillet, took 1.5 hours to eat. So "stock up" by eating as much as you can in preparation. You will get through the ordeal. If a gezzer like me (was 58 at the time) can do it, you certainly can.

AML Momma,

Good attitude. The immediate post-transplant period is bad, but once your son's counts start to come up, he will fell so much better. The only time I needed narcotics was during the mucositis. As far as the blood type difference, I doubt it is a significant problem. I was type O + and now I am B+. I am praying for engraftment for Don. Even with fewer cells, the transplant should work. Just keep supporting him emotionally through all of this. That is the most important thing you and your family can do.

Cliff

Andy -

Adding to what everyone says about eating. I think everyone loses weight after transplant.
I had mine 13 months ago, from an unrelated donor 9/10 match.
One thing I found useful was when one of the nurses told me "you will go through a rough time, but know that it's uphill from there". It really helped me to know that no matter how lousy I feel, it's temporary.
I had really bad mucositis and barely ate and was on morphine, so a lot of that period is kinda foggy in my mind.

See what makes you feel better. Some people love having company. I was very selective on who I wanted with me, but I did want someone with me most of the time.
Some love TV, books, etc etc. Listen to your body and not less that that, listen to your emotional needs as well.

For me, the pre-transplant chemo wasn't that bad. The transplant itself is uneventful but moving. Physically the toughest was probably the 2 weeks or so after transplant. So looking back, it's manageable and not such a long time. But it's no fun.
I found I could only eat ice cream. So that's what I ate :-)
I had no patience for reading, and watched very little TV. I slept a lot and didn't walk enough.
I am now 13 months post, and back to working nearly full time from about 6 months ago. I feel well and am tremendously grateful. To the donor, my family, the staff. It takes so many people to support us through this, it's truly an incredible blessing.

Good luck!
Abby

John and Andy,
Know you both will be in my prayers. If my 56 year old brother can go through it twice, you too can make this journey.
Twilight aka Susan

,

Andy,
One thing that no one mentioned is the rebound eating, at least in my case, that occurred when my sense of taste came back. I really couldn't stop and gained more weight that I wanted to. I finally dieted it off and increased my exercise markedly. After transplant, eat whatever you can tolerate. Do what Abby did. If ice cream is all you can tolerate, go at it. I craved linguini. Everything sweet turned me off. Eggs were great.

As I always say, keep your eyes planted firmly on the horizon. Never look down at your feet, and certainly don't look behind you. This is the attitude that got me through the transplant and its aftermath and will now get me through major spine surgery. If you notice, what everyone is recommending is exercise and eating. Although mentioned, no one is emphasizing the mucositis the weakness, the inevitable fevers etc They all go with the program and it will be a distant memory soon. The annoyances of transplant are a rite of passage, in a way. We all went through them, and came out whole on the other side. Although I have been absent from DS for long periods, now that I am caught up, I have to tell you that I will be praying for an easy go of it (many just sail through). I look at all of the problems as "speed bumps." You will learn to navigate them all.

Cliff

Hi Andy. I'll repeat what others said, just to emphasize it: gain weight while you can! I'm normally 175 lbs, entered UCSD hospital mid January '13 at 204 lbs and thought it was too much to loose. Mid May I was clocked at 142 lbs just before it got better. So go for it.
Patience and focus on your healthy future. It always takes longer than you think it will, so be prepared mentally.
I had a rough ride and spent 7 weeks in the hospital. I wish I've asked for Valium or something towards the end to calm me down as I was getting claustrophobic last week or two. I actually felt quite well physically then, but they could not release me sooner due to medication I was on.
TV, video or books did not work for me. Audio books were the key to make time go by faster.
Walked hundreds of rounds around the ward, dragging IV pole along while listening to books or music.
Wish you all the best of luck!
boris

Thank you everyone for your insight! I met with the transplant team today and all we are waiting on is final insurance approval. I recently did my lung workup and that was the last thing they needed. After that, my sister will make the trip to be harvested (I think that's an eerie word to use).

Andy

I think everyone pretty much hit on everything. You will get through this.

Like Abby my son is just over 13 months post transplant and was told by his dr today that he looked great. He has been back to work for almost a year.

Hugs and prayers for you.

Karen

How are things going, Andy?

You are always in my prayers

Julie

Julie,

According to my schedule, I should already be transplanted. But, as I have learned, God's schedule is way better and more perfect than mine.

It seems like there is always something getting delayed or something that wasn't mentioned before is now mandatory prior to stem cell. I would get frustrated because my schedule was always getting messed up for this process. But, in several of my devotionals, I found that everything under MY plan was getting delayed, but God's plan was still right on schedule.

I've found more over this process than last year's how little control I have over this situation. I've been doing better about accepting that and trusting that God's in control and everything is happening just as it should. Sometimes, this is not always easy, but when I get flustered or aggrivated, I can always trace it back to getting upset because things aren't going how I planned them to go and believe it or not that calms me down knowing that someone much bigger than me is in control.

As of now, my sister will be brought in to begin the donation phase of the process this coming Tuesday. I was talked to about being admitted around November 2nd or 3rd. Much of that will depend on how the collection phase goes. Now, while this is a much later date than I had planned, I'm trusting that this is part of God's plan. I prayed quite often for rest and the ability to build back my strength outside of the hospital. If transplant began when I wanted it to, there is no way either of those would have had time to occur. But, with this extra time before my admission I'll get uninterrupted sleep and the ability to gain extra weight and weight that I loss back before transplant.

For me, I don't always see God in my situation as it occurs. But when I reflect on it once the chaos has settled, I can see more clearly that He was in my situation and was there to guide me.
This is response is longer than that which is typical of me, but it's something I became more aware of as of late that I just had to share!

Andy

Andy,

So, so awesome to hear from you and to know the "process" is moving forward. Your comment about having less control now verses when you went through consolidation, resonated with me because like you I had a defined schedule for my four consolidation treatments-30 days each. But almighty God had a completely different plan-I averaged 65 days between each session. Wow, when I asked God for patience, I had no idea what I was asking for :-).

I can honestly say, my faith, trust and reliance on God was so amplified during this time. There are times I crave more of that without the health crisis. God truly granted me the peace that passes all understanding.

I am so glad you shared your spiritual growth associated with the delay of SCT. I really believe God wants a personal relationship with us. One where HE is not distant and aloof but closer than a brother, the first ONE we turn to in crisis. Some of us need a near death experience to draw us in. "For ALL who are heavy laden, will be given rest" I am so glad to hear you have had the chance to rest, eat and rejuvenate physically and spiritually.

I can not empathize with prepping for SCT as I have not traveled that path but sharing this with you gives me so much hope and confidence that if that necessity presented itself, I could make it because of the warriors who've gone before.

Every week, during prayer requests at church and then again at my small group on Tuesdays, people ask how you and your sister are doing. How amazing that a congregation in Ogden, Utah would be lifting a guy in LA up in prayer-How awesome. I routinely ask fro prayer for all fighting the AML demon, especially those on DS because prayer matters.

I love it when you talk about the harvesting of your amazing 19 year sisters stem cells-it is a creepy term. My only potential match, my brother, recently completed chemo for stage 4 NHL. I tease him that he'd do anything to avoid that :-)

Maybe this delay is do you and John (coin LT) can go through this together My daughter God mother, is one of the best people I know and she is a stage 4 colon cancer survivor. When I got AML, she told me if she got cancer so she could help me through mine, it was ALL worth it. I truly believe most if not all of the questions we have (for God) will be utterly meaningless when we see HIM face to face in Heaven. Like why did I get AML?

Please know you are always in my prayers. I have some verses for you that have helped me so much. May almighty God continue to bless and equip you for the path ahead.

Psalm 139

'O LORD, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O LORD. For you created my inmost being; you knit me together in my mother's womb. your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.'

'But those who wait on the LORD Shall renew their strength; They shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.' (Isaiah 40:31)

Blessings,

Julie

Andy,

So much of what you say rings true. We are not on our schedule, but God's. All we get by trying to be on our schedule is heartache.

You are right, it is very tough to have the delays, but I think we both are getting better at giving control up to God.

I look forward to getting through this together. I get admitted on the 2nd of November per the current schedule. Let's do this thing!! I am thankful to God that we have our support teams, our donors, and now each other. God truly is faithful.

V.r
John