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 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]

Originally Posted by Jen B

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