Day +11 post BMT

[Jen B]

Jeez - I finally remembered my password so I could post.
Guess I have had a bit on my mind.

I just wanted to post a bit here. I have a lotsa helping hands site that I have been keeping updated.

My 4 year old son is day +11 after transplant. He is really in good spirits and doing great. So well that I am worried that he isn't hitting the mile stones one reads about. He is still eating well and playing during the day. I don't want to jinx it and I know everyone's experience is different. I am sure you are all with me in hating the amount of patience and waiting this disease requires.

I am told that his counts should show engraftment in a few more days if indeed he is engrafting.

Thanks to everyone for posting to this site. I learn so much.

Here is to a great future for my little one!

[Neil Cuadra]

It's great to hear that your son is doing well and especially that he's in good spirits. You're right about the frustration of waiting but I'm sure your patience will pay off.

For those who don't know, Lotsa Helping Hands (http://www.lotsahelpinghands.com) is a site that lets you create your own online "community" of family and friends, keep everyone up to date on your family member's medical situation, and let volunteers coordinate the help they give you.

Please keep us posted, Jen.

[evansmom]

Hi Jen,

It's great to hear your little guy is doing well. The younger the child is in BMT, the better they seem to do as a general rule. My son Evan had his BMT 17 months ago and he engrafted on Day+26. That was a long wait and a very anxious time. All I could do was focus on keeping his isolated environment as germ-free as possible, at times even asking nurses to re-wash before entering as I hadn't seen them wash in the anteroom. I'm sure the nurses were irritated by me but with a child next door growing aspergillus, I had no problem being fussy. Just be very vigilant of who and what enters his room right now as he is very vulnerable.

Evan's Caringbridge site is below if you wish to refer to it at some point.

Best wishes for complete recovery for your son.

[Jen B]

Hey Nicole
Thanks for sending me the link to Evan's site.
Can you elaborate on the precautions you took?

We are in a private room. Staff come in with gloves and masks - someone to clean the room in the am, someone to log the machines we are using, the regular nursing staff (1 nurse and 1 nurse assistant), the food guys who drop off his meals...and me. Some days the Physical Therapist will come in, some days the psychologist or child life specialist will come in. No more than two in the room at a time (me +1), or (me+doctor+nurse).

Thanks Neal for clarifying on Lotsa Helping Hands. It has been a great resource for organizing our community in blood and platelet donations.
Our LHH site address is: http://www.lotsahelpinghands.com/c/609752/

I had the pleasure of meeting you at the UCLA AA meeting recently - thank you again for this site. It is a great resource for me to connect with others and learn from their experience.

Thanks
Jen

[evansmom]

Hi Jen,

I'm not sure about your son's room, but for Evan, he was moved to a Laminar air flow room on transplant day and stayed in there (with the exception of having to leave with a mask on and wrapped in clean sheets to have a CT scan and ultrasound) until engraftment day. Everyone who then entered the room had to do a 2 minute scrub in the anteroom, then put on a gown. All of Evan's belongings had to be wiped down with Virox before going in to the room and again any time an item hit the floor. No staff member was permitted to work if they were unwell, even with an insignificant dry cough. That was a strict rule.

I quickly became aware of the different nurses' practices. Most were extraordinarily cautious to the point I could relax around them while a few cut corners and broke rules. Nurses are not allowed to sit on the child's bed while in isolation and one of our nurses came in and went to sit on Evan's bed in the same gown that she had worn next door with the child who had an aspergillus skin/bladder infection (I knew this because I made a point of paying attention to everything going on around us - you have to). Of, course I stopped this nurse, told her to step out where she and I then went to her charge nurse. We never had this nurse again. I have never been one for confrontation, in fact I hate it, but I had to put my discomforts to the side because being Evan's advocate was number one.

The main thing is, in my opinion, keep the number of support staff coming in to a minimum. I was lucky because Evan was 11 and was not interested in child life. He was content with his handheld games, the laptop and the TV. Make sure everyone washes their hands thoroughly where you can see them and if you are uncertain, ask them to wash again or use the hand sanitizer that you hopefully have in the room.

Nosocomial (hospital acquired) infections are prevalent. We know this as we watch MRSA and VRE spread through wards (I am a nurse) despite best efforts to isolate and contain these bugs. So when the patient has neither an immune system nor neutrophils to ward off bacteria, viruses and most importantly, fungal invaders, as parents, we must demand srtict adherence to isolation protocols. It would only take one nurse/doctor/child life worker with dirty hands to mess everything up right now.

Just don't be afraid to offend. If you don't like what you see, speak up immediately. Engraftment is around the corner, and then everyone can relax (a little).

Please keep us posted with your son's progress when you can, we'll all be rooting for him here!

[squirrellypoo]

I'm glad to hear your son is doing so well! Don't sweat the engraftment process - after first few days where all the chemo changes every day and you get to follow the chart, the long wait for engraftment can feel really boring. But the counts will magically go from zero to stellar (and then back down again if they've got it all amplified by GCSF/Neupogen) out of the blue, so keep your spirits up.

And the transplant ward at King's was very similar to what Nicole described - the staff there only ever deal with transplant patients and don't think twice about all these procedures. Nor do they have any qualms about stopping visitors before they break the rules, either!

[Jen B]

Thanks for your input. I think they may be a bit more lax here. No one wears gowns as we are not in contact isolation, but all wash hands with soap/water or antibacterial foam and put on gloves and masks. We are in a positive pressure, hepafiltered room.

Ethan had a fever last night that after taking cultures and administering Tylenol, was gone in the morning. He has had a bit of a cough and stuffy nose, chills, and didn't eat today as well as he had been. But all in all, he seems to be holding up.

He has been on every antibiotic, antifungal and antiviral since the get go. I forgot to mention that we found out our donor was from Germany. The day we were to get our transplant, the Dr. let us know that he would rather wait until the next day since the cells came in so late in the evening. Our transplant day was moved one day out. When they put the cells in the centrifuge the next day to reduce them, the bags tore at the seams. This is not something that has ever happened before, they say. As you can imagine, we were pretty upset. The inside of the bags were sterile. Those sterile bags were put into other sterile bags, but when the inner bag broke, the cells were in contact with the outer part of the inner bag - which wasn't sterile. So they have been watching a culture of the cells since day 0, and have had Ethan on all kinds of preventative meds.

So far so good - the cultures are all negative. Day +13 almost over.

[Jen B]

any info about CMV would be helpful.
The doctor just let us know they found he has some cmv.
She says they caught it early, but I know this virus can be a huge issue too.
His replication is about 1000 (not sure what that means really yet).
Starting him on gancyclovere tonight which i understand may impede white cell growth too?
UGH

[evansmom]

Hi Jen,

The room Ethan is in sounds similar to Evan's and the fact that the staff are good about washing hands, wearing gloves and masks is very good. I think the gowns everyone wore (including me) until engraftment was really erring on the side of caution, but I thought it was a good idea as an extra ounce of prevention.

Wow, I can't believe that about the seems tearing on the bag of marrow. I've never heard of that before either. I'm sure if there was a problem with contamination that couldn't be covered with all the antibiotics etc., you would have seen fever etc. almost immediately after the transplant so I think that whole aspect is OK, thankfully.

Yes, CMV is a bugger of a virus in transplant. Was Ethan CMV positive going in? If not, was his donor CMV+? It's not as likely to become CMV positive from a + donor but it is possible. The very good news here is that the amount of CMV (copies) is very low at 1000. So they did catch it early and gancyclovir or Valcyte is very effective in knocking the copies back down towards zero. Valcyte can bring the white count down some but I don't think it will delay engraftment per se.

CMV is quite common in the post BMT days and the docs know exactly how to deal with this. Focus on the fact that it was caught early and it should be wiped out relatively easily.

These are difficult days that you are in. Just remember to take things one day at a time, it's such a cliche, but one that holds very true.

Stay strong,

[Jen B]

Nicole,
Ethan had a fever of 40.3 C at 2am this morning, but the fevers seem to go away after Tylenol and some ice bags and stay away during the day.

Ethan is CMV+, but our donor is CMV-. My family, we are all CMV+, and I wonder if I could have shed this to him in this very vulnerable hour.

They started Gancyclovere tonight and I am so very glad to hear that you think it wont stop his engraftment. His white count as of yesterday was only .3 Up from 0, but still so delicate. The doctor as of this morning had seemed to think that perhaps this .3 might show that he is starting to engraft. I was hoping that these fevers were just a product of that. I am so crushed really to hear this evening that there is a virus to fight when he has no immune system to fight it. They check CMV numbers every Monday and Thursday. Of course this Thursday is Thanksgiving so I may not know if the antiviral is working until next week.

This waiting game is really exhausting. Thank you for all of your suggestions and support. I can't tell you how much I appreciate it!

[Neil Cuadra]

His white count as of yesterday was only .3 Up from 0, but still so delicate.
That sentence jumped out at me. Those white cells must be from his new donated immune system, the sign of engraftment taking place. That's great news! Congratulations!

It took my wife until Day +17 to get her first measurable white cells, 0.3 just like Ethan. Look for that to gradually increase, giving Ethan increased protection each day.

Since Ethan is CMV positive, his donor's CMV status wasn't a factor. The combination that doctors worry about is a CMV- recipient and a CMV+ donor. Transplant doctors know to watch for cytomegalovirus infections, to catch them early and get an anti-viral treatment going. Let's hope the ganciclovir does its job quickly.

[evansmom]

Hi Jen,

Sorry to hear the fevers continue but I totally agree with Neil...the 0.3 WBC count is something to take note of. This is very likely the beginning of engraftment!

The ganciclovir will take care of the CMV so try not to waste you're (I'm sure) diminished energy worrying about that and please do not think for a moment that Ethan got the CMV from you. He didn't. It was laying dormant in his system and merely 'woke up' again in light of his absent immune system.

Here's hoping and praying the WBC count continues a nice slow and steady rise and that the good ol' neutrophils make their appearance ASAP.

Go Ethan GO!

[Jen B]

Ethan's white cells are up to .8 today! ANC is .3!
I hate to be one of those parents that asks for numbers every day, but I did this morning and I nearly jumped out of my skin with excitement.

The doctor didn't get to us in rounds until 5pm tonight, and she didn't even mention it. The two regular doctors would have told me first thing, but this newer doctor seems to be a bit more conservative. She is on rounds for the next 2 weeks, so I will be asking for numbers daily. If it were the other doctors, I wouldn't have to because they come in each morning and let me know his progress if it is worth mentioning.

Ethan is coughing and congested. It is really hard for him to eat. They are starting IV nutrients tonight. I worry most about fungal infections and pneumonia. They keep telling me his lungs are clear and his O2 is 100%, but it is hard to hear him coughing and sniffling. He is a bit lethargic too. They say it is a combination of the CMV and mucusitus. He has been pretty lucky in that he has only had one mouth sore.

Today he showed an all over body rash. It isn't raised and seems to come and go with fevers too. Could be GVH, but they aren't sure and aren't ready to start steroids as they also impede white cells?

Day +17 is almost over. Can't wait until this time next week - maybe he will be feeling alot better and we will have more positive signs of engraftment.

Thanks so much for your support!!!
Jen

[evansmom]

Hi Jen, That is great news about the white cells and anc! I don't blame you one bit for asking for the counts every day, that's why you're there and I thinks it's kind of silly for a doctor to hold out on such news. Every parent in that ward is living for counts as proof their child is recovering.

Did Ethan get methotrexate for GVH prevention on days 1, 3, 6 and 11 post BMT? And is he on cyclosporin IV or another immunosuppressant? Hopefully the rash he has is not GVH but they'll need to keep an eye on it.

Have his fevers subsided?

Can't wait to see the counts climb!!

[Jen B]

Yes he got methotresxate and is on Cyclosporine.

WBC is 1.2 today! ANC still .3
Really am happy about this upward trend!

He keeps breaking fevers and we will go for a CT scan to make sure it is nothing other than CMV and engraftment.

His rashes come and go but are not welts so don't seem like GVH yet.

Our biggest issue is the congestion and the endless coughing. We are trying Robitusson, but it doesn't seem to work. The best thing is benadryl, but that is really a pre-med for his anti-fungal. We are also using some albuterol. Today it doesn't seem to be helping enough.

Thanks again!

[evansmom]

That is a high wbc count for an anc still at 0.3...hmmm...with Ethan's coughing, are his eosinophils increased? That could support some kind of allergic response which could explain his coughing.

A CT is a good idea just to be thorough.

Have a good night.

[Jen B]

On 11/25 his eosinophil count was 0, WBC .2

11/26 eosinophil .9, WBC .4, ANC .2

11/27 eosinophil .1, WBC .8, ANC .3

11/28 eosinophil .3, WBC 1.2, ANC .3

Actually his neutrophil count is 28.5 so his ANC is 342

What do the eosinophils do?

[evansmom]

Hi Jen,

Eosinophils are produced in response to an infection or an allergen, such as a drug reaction. Ethan's rash could support some type of reaction, which also seems to be affecting his lungs. The day you said his eosinophils were 0.9 is the same day his rash appeared and he was coughing and congested. Was he sneezing too? Do his symptoms act like asthma?

0.9 eosinophils is high, so it's good that that number has come down, but I'm a bit confused. The WBC count is all the sub-types of white cells added up. For example, if someone had:

neutrophils 0.5
basophils 0.0
monocytes 0.1
lymphocytes 0.4
eosinphils 0.3

These all add up to a WBC count of 1.3. So if Ethan's eosinophils were 0.9 and his anc was 0.3, then his WBC count should have been at least 1.1, not 0.4. I am only bringing this to your attention in case they have mis-reported something to you. Maybe you meant 0.09?

If this keeps up, I would say Ethan is reacting to something and may need a dose or two of solucortef (or another steroid) to simmer things down.

Just my opinion of course, but something is going on that is leaving Ethan feeling yucky and they need to figure that out.

[Jen B]

Ethan is definitely having asthma symptoms, but my understanding is that the CMV is agitating his lungs and he does have a sinus infection confirmed today by a CT scan. No other secondary viruses or fungus so far. An ENT doctor is going to double check his sinuses tomorrow for fungus, but she doesn't expect there to be anything, just a precaution.

His counts were pretty much the same today as yesterday and the doctor is pleased with that.

His sleep is fitful with coughing and congestion, but benedryl sometimes helps. I try to get a dose at 3 and again as a pre-med at 9pm.

I will double check the counts tomorrow. Thanks for the suggestions!

[Jen B]

White Count today 1.5
ANC .6

Had to add new anti-viral as his CMV count jumped to 9,434.

It was down below 500 on Friday, but I guess the virus became desensitized to Gancyclovere?

It is so incredibly hard to watch him struggle with this infection - coughing all the time and no real relief until his white count goes up.

I guess the good news of course is that his WBC is going up - just very slowly.

[Jen B]

Today:
White Count 2.6
ANC .9

[evansmom]

Hi Jen,

Those are great counts! How are Ethan's platelets doing? It's still a bit early for those to come in, mind you.

Have they been able to settle his coughing and congestion some?

[Jen B]

Hi Nicole
Today is +23
Ethan's counts today were great
WBC: 3.2 today up from 2.6 yesterday
ANC: 1.2 up from .9 yesterday

Just waiting for those CMV numbers - probably get those tomorrow.
He is tired and still congested, but his color was good this morning.
Still coughing. We have a nasal spray on our list of to do's now. Only allowed to do that for 3 days than 4 days off. The asthma breathing treatment seems to help his coughing as well as the benadryl. We are also doing some saline nose rinses. The cough seems to get worse at 3pm and 3am. They still say it is upper respiratory and that his lungs sound good. His O2 is still pretty good - generally 95-100. His blood pressure and heart rate tend to be a bit high, but he is on some med for that too.

I thought it was odd, but his platelet count has been slowly climbing since last week. At first I thought it was a typo. It was 36 on Sat, 43 on Sun, 49 on Mon...today it was 61!

I thought platelets were the last to recover counts. We have gotten more red transfusions than platelets since his transplant. His reds seem to still drift down, but just not as fast as the first week after transplant.

He has been fever free for a few days, but just this evening broke another fever. They took cultures, but I am hoping it is an engraftment fever. I just feel like screaming and having a party every time I see his white count go up.

[evansmom]

Hi Jen,

Wow! Ethan is coming along great and he's got lots of neutrophils to protect him now!

Most people think that platelets come in last but I think that's because red cells live so much longer than platelets so it's deceiving.

Go Ethan go!

[Jen B]

Today WBC 3.4
ANC 1.9
He spiked a fever last night and just again now.
They are adding gancyclovere back into the mix just in case...nothing showing yet on the cultures though.

CMV counts just came in down from 9000 to 3414!

Just hoping it continues!
YEAY white blood cells!

Nicole,
We still have time until we are to go home, but I wonder what did you do to prepare your house for Evan's return?
Carpet cleaning and what else did your hospital suggest?
Thanks
j

[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]

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!