Day +11 post BMT

[evansmom]

Great news Jen!!! Woooowhooooo!

As far as home prep, we were told not to go overboard. Carpet cleaning was not necessary, just a thorough vacuuming, dusting and disinfecting of surfaces know to be germy like the bathroom fixtures and counter. We were even able to keep our dogs at home as they were non-shedding and bathed routinely. It's more the crowd avoidance and daily personal hygeine. Evan showered every day for the first 100 days, and I changed his bedding every 4 days. Ethan will be on a low bacterial diet so eating out will be off the books for a while. Canned and pre-packaged foods work well due to the strict food handling guidelines. If you have any old water damage or visible mold present, I'd get that professionally taken care of before discharge from the hospital.

Hope that helps!

[Jen B]

Thanks for the advice Nicole...

Day +31
WBC: 7.8
ANC: 4.5
Reds - we were transfused the beginning of this week so waiting still for them to kick in.

Still waiting for info on our latest CMV results.
Last Tuesday was "0"...we will see today.
HA - just got it - CMV still 0

got his peripheral blood report from his biopsy yesterday - NORMAL!!
"Normaocellular marrow with active trilineage hematopoiesis"!!!

Next week we will get the results of the biopsy which will tell us what the celularity of his marrow is!

Tonight is the first night of Channukah and I couldn't have asked for a better gift!

[evansmom]

Hi Jen!

Unbelievably great news! Congratulations, your boy has done amazing.

I'm assuming the cough and congestion have subsided?

Good work Ethan!

[Jen B]

Still here as he is having bladder issues and blood in his urine, but his numbers are looking great
WBC: 9.2
ANC: 8.0
Platelets: 208
Reds still slow in coming - dropping slowly today at 9.2. They transfuse when he gets to 8.4

Just waiting for some urine tests on BK virus and CMV in his urine. Blood tests came back negative.

Hanging in here!
Jen

[evansmom]

Hi Jen,

How is the bladder issue going, did Ethan test + for BK? I know that is a pretty common issue post BMT. I hope Ethan isn't bothered too much by this. His counts are lovely. Evan continued needing red cell transfusions until Oct. 30/08, which is 4 1/2 months post BMT. It took him quite a while to switch over to donor blood type, partly because he was having a red cell destruction problem caused by the prograf he was on.

Hopefully the team will be talking discharge soon.

Can't wait to hear more good news!

[Jen B]

Hey Nicole,
Can't tell you how excited I get to see you have posted.

Ethan's counts are still great.
Platelets 287
WBC: 8.9
ANC: 6.8

We had a 4 day stint on prednisone for his asthma and that helped a ton.

Last week tested negative for BK, but retesting again tomorrow as his bleeding hasn't gotten any better. In fact he has a bit more pain and we are seeing clots now. At the end of his urination, the blood is darker and more concentrated...very disconcerting. I am so worried.

Also he has been having diarrhea since Friday night. They have been testing since Saturday for C-Diff. So far 2 negatives. I really think it is more due to the fact that on the Dec. 9th they told me that Ethan could have cheese. We started out slowly 1 meal then 2. I maintained the lactaid. His stools seemed fine. By the 3rd day I was feeding him cheese whenever he wanted - almost 3 meals a day. I figured it was fine and the nutritionist said when I told her the only thing he seemed to want was Cheese pizza...she said, "good calories". So for over a week he as been eating cheese. He was bloated by the end and when the diarrhea started, I took him off cheese.
He has these nasty burps - really smell horrible - worse than his stools. I will talk to the doctor tomorrow again.

I am so homesick. Today is day +40. We have been here 50 days. Miss my older son an my husband. But glad we are here to deal with these things too.

Thanks also for the encouragement on the red cell transfusions. We found out that his CMV isn't Gancyclovere resistant - good news. He is now on maintenance. I am hoping that when that is over, his red count will go up.

Thanks for your post!

[evansmom]

Hi Jen,

All in all, things sound pretty good. How's the diarrhea? Do they routinely test to see if there is occult (not obvious to the naked eye) blood in his stool? They probably do. Is there any talk this could be a little GVH or do the docs think this is viral in nature?

I have no idea why his burps would smell like that, I'm stumped on that one.

[Jen B]

They have been taking stool samples. So far nothing.
The doctor is still talking release this week for us as there is nothing he thinks can't be taken care of as outpatient.

I think we are ready to be home now too.

[Jen B]

Home at last!
Got home on the 24th.
Ethan is attached to a backpack pump for IV hydration.
BK virus was found positive so he is on a few meds for that plus the hydration.

So great to be home.
Ethan's numbers are good - except his red still, but I know that may take a bit.

Hope you had a great Holiday and we all look forward to a great next year!
Jen

[evansmom]

Hi Jen!

What wonderful news! Ethan did a great job ~ you must be so proud of him!

Congratulations and welcome to the other side!

[Jen B]

It has been some time since I posted here.
I used to peruse the site often looking for information on what Ethan might be feeling that he might not be able to verbalize as he is so young. I was following Vera's post pretty closely, and stopped reading when I heard. Guess I just needed some time.

Ethan is doing pretty well. We got through well with very mild GVH - almost nothing. The 6th of April, he starting having pretty frequent diarrhea. We are dealing with that now. Just had a flexible sigmoidiscopy(?) last Wednesday.
Added prednisone and most recently Budesonide to his regime. We haven't been on much so that doesn't seem so bad. Hopefully it is manageable and mild gvh

Nicole, if you read this - hope you and Evan are well!
J

[squirrellypoo]

That's great news, Jen! Thanks for the update.

[Laura]

Jen, Glad to hear things are going well! I take Budesonide to gut GVHD too. It is great stuff and it works great for me. Keep us updated. Laura

[evansmom]

Hi Jen,

Thanks for the update on little Ethan. Hopefully he won't need to be on these meds for too long however, thank goodness these meds are available. Maybe by now, Ethans' diarrhea has subsided and he's feeling great.

We are doing well, thanks. It's quite fun to watch Evan grow and change. He's fast approaching 13 and in the throws of puberty! Nearly taller than me, deep voice. It's crazy! We go for his two year follow up at SickKids in June and we will be finding out what it takes to meet the man who saved Evan's life. I get shivers when I think about what meeting him will be like. I'll probably be a blubbering idiot, but I need to meet him and tell him how I feel about him.

Hoping Ethan's little bump in the road has levelled off!

Take care,

[Neil Cuadra]

Originally Posted by evansmom

We go for his two year follow up at SickKids in June and we will be finding out what it takes to meet the man who saved Evan's life. I get shivers when I think about what meeting him will be like. I'll probably be a blubbering idiot, but I need to meet him and tell him how I feel about him.

How exciting!

We're going to see a first meeting between a transplant recipient and unrelated donor later this week. Even thought it's not someone we already know, and we've seen a number of these donor-recipient meetings (including our own, meeting my wife's donor), it's still incredible every time. We make a point of congratulating, thanking, and (when we can get away with it) hugging donors for their great big hearts.

[evansmom]

Ah Neil,

It is exciting! I remembering seeing a BMT recipient/donor first meet on the news many years ago and being in tears watching the emotional connection between the two unfold, never thinking for one minute that we might be in that same situation down the road.

Without a doubt, this amazing man saved my son's life and I cannot wait to give a proper thank you.

Hope both you and Ruth are doing well, we may see you again this year in Washington! I'm pretty sure the kids and I will do another road trip this summer.

Take care,

[Laura]

Nicole,
Do you know which country your donor was from? I can't remember if you do or if at one time I knew and now forgot Sorry. Anyhow, that is wonderful that you are so close to meeting the wonderful person who saved your son's life. Did you have to wait two years because Canada has a two year waiting period or his country had that waiting period? Sadly, my donor comes from a country where I must wait five years. I wonder which country that is? I hope she will still want to meet after it being so long apart. Anyhow, that is awesome and can't wait to hear more details about it. Keep us posted.
Laura

[evansmom]

5 years? That's so long. I don't think I have ever heard of an anonymous period that long. Ugh!

We only know that he's in his 30's and lives in your great country. He was told that he donated to a 10 year old boy in Canada.

I've been told that SickKids dictates the 2 year wait.

[Laura]

Yes, I just found out recently the wait was 5 years. I was wondering because I had heard most waiting times were 1 year and since I was getting close I was wondering. I have never heard of a country being 5 years and they won't tell me which country she is from. But they did leak she is from Europe. So I wonder what country there has a five year wait list! It is so crazy long. I did write a thank you right during transplant. Then recently before I started work, I wrote another note to thank her and say my life was returning to normal (ie work, etc). But I haven't heard anything from her. So not sure if she doesn't know that she can write me or maybe she just doesn't want contact?

That is so exciting that soon you can meet! You must keep us updated.

Laura

[Jen B]

Ethan's donor is a 20 year old from Germany. We were just told it is a 2 year wait on our end. Can't wait to meet such a young man who thought beyond himself. I wish I had known about the effects of being on the registry when I was 20. I was clueless.

Just got out of the hospital. Ethan had a full colonoscopy. Our GI doc was amazing. The clear liquid diet they put Ethan on for 2 days was painful, especially since he was still on prednisone. Waiting for the biopsies, but it seems his GI tract looked very normal and healthy. They tested a 2nd time for C-Diff and got a positive. So at least we have something to work on - now on an antibiotic and reducing the steroids (yeay!).
Amazing how those steroids change how they look and the amount of food he eats!!
Thanks for the well wishes everyone!
jen

[Jen B]

+255 - amazing. I couldn't have visualized what this day would look like from day 0 - or from the beginning of this journey in Dec 2008.

Ethan is doing well and we are starting his med reduction. His counts aren't in a normal range yet, but hoping it is the immune suppressants that are keeping them down. The doc seems a bit concerned about his red counts, but as this disease seems to dictate patience, what choice do we have but wait to see what his body does when the meds are reduced. The docs are talking removing his line in the next 2 mos or so.

Starting to figure out what his kinder year will look like. It seems we will be holding him back this year. I hope he gets to a place where we can at least send him to preschool to get some social skills with kids his age. We have been isolated for so long.

Couldn't afford to attend the Bethesda event, but one year we will get out to there.

Nicole - I can't imagine what it is like to see your baby turning into a teen, especially after all he has braved.

What success and hope you all offer!
Thank you so much for being here!

[evansmom]

Hi Jen,

Glad to hear Ethan is doing well overall. I remember Evan's red cells were very slow to come in as well. I believe the delay was because Evan was O+ and his donor was A+ and from what I have read, that is one of the more difficult blood type transitions. Maybe it's the same case with Ethan?

Does Ethan still need red cell transfusions? Evan stopped needing red cells transfusions 4 months post BMT but didn't have a normal hemoglobin until 13-14 months post BMT.

It is magical to watch Evan grow and change - he's now taller than me!

It is my hope that sharing Evan's successful story will give other parents going through this reason to believe in a healthy future for their child.

Take care and best wishes.

[tserdogan]

Hi Jen,

My red cell is now 12.5.But i wait for this nearly ten months after the transplant.And i took red cell every ten day.i agree with Evonsmom O+ changinging to A+ is difficult.Stay Cool.My counts are not still in normal range,but i turn back to my job and live more carefully..

[Jen B]

Ethan is still doing great - we are at day +313, almost a year I can't believe it!
Our doctor is taking his Gengraf reduction VERY SLOWLY! A bit every 2 weeks or so. This last 2 weeks he decided not to reduce as Ethan has been showing rashy blotchy dry skin. The doctor doesn't seem to think it is GVH, but my gut tells me different. Ethan isn't too bothered by it, but it makes me antsy to see these transitory blotches go by on his face, back, stomach and arms. We have been using a topical steroidal cream, but today, there were too many places to put it so I just put him to sleep without. I will see where these rashes are in the morning.

We were instructed to keep Ethan home from school this year - his first Kinder year. I am home schooling and working a few hours a week in a friends office. My husband found a freelance job a few months ago after 10 months of unemployment. Crappy economy.

Nicole, did your donor ever write you a letter? Just curious. I sent a few off to our donor - hard to keep it so generic - no personal info so it ends up being a blubbering "thank you, thank you, thank you!" note.

Perusing your site, I saw that you went to Florida's Give Kids the World and DisneyWorld. I think we will be taking Ethan's MAW trip there too next year. Just hoping it is after he is off his immunesuppressants.

Thank you everyone for all your words of encouragement. I feel so fortunate I found this site when I did.

Jen

[evansmom]

Hi Jen!

Glad to hear Ethan is continuing to do well. The rashes may not be GVH. I remember Evan had exactly as you described - small pink to red blotchy dry skin patches. He only had them in his elbow creases and on his chin and they came and went with little rhyme or reason. We were thinking it may be GVH but it never amounted to anything and then just seemed to burn out. Maybe it was eczema, maybe GVH but in the grand scheme of all that could have gone wrong, very minor.

The day Evan had his transplant, we received a lovely anonymous card from his donor. We wrote him two letters, the first one shortly after the transplant day which he only received 3 months later and again at the one year anniversary, which he received almost right away. At the two year anniversary, once both parties signed release of info paper work, he sent us a beautiful email, very personal and emotional. Since then, we've emailed, facebooked and spoken on the phone. We were planning a trip in August to Tennessee to meet him but one of our dogs had to have unexpected surgery. We hope to get there this fall or winter.

As far as Give Kids the World/Disney with Make-A-Wish Foundation...absolutely INCREDIBLE. We had the time of our lives especially since we also chose to go once Evan was off his immune suppression med and back into life/school etc. Ethan will love love love it and so will you and your husband. The elderly volunteers at GKTW are soooo sweet to the children you won't have a dry eye watching them interact (I'm tearing up thinking of them). You all deserve an amazing vacation after all of this.

It is best to keep Ethan out of school until he's off the Gengraf completely but then it's fair game! Be warned: I continue to be very surprised at how often Evan comes down with a new viral illness that has him with fevers for a few days etc. He always kicks it on his own and this is how he is building a strong new immune system but my goodness, in the fall especially, it seems like every time I turn around, he's got something else! Schools are cesspools unfortunately!

Take care!