Day +18

Well, folks.  We aren't going home tomorrow.

Honestly we had the feeling that it wasn't going to happen. The best scenario now is Wednesday.

Clara's ANC has been up hovering in the 500 range for the past few days. She hit 700 but then dropped down again and was again at 700 today. She also had a fever a few days ago which caused her to need to be back on antibiotics again. Fortunately nothing has grown from her blood cultures. I actually think that the fevers coincide with flair ups of her graft versus host disease. She gets red splotches on her face, back, and chest. They are significantly hotter than the rest of her body to the touch.

Each day they have been scaling back medications that she is getting. To go home we need a majority of her meds to be oral instead of IV (I am not really sure why they need this). They prefer to transition one med at a time to see if she has any reactivity to the oral version of the med so it takes time. We are also scaling back her TPN (the IV feeding source) to a 12 hour IV infusion. This requires a slow transition (I think so that it won't shock her liver/kidneys).

The goal with the TPN transition would be to give her full nutrition at night while giving us the chance to teach her to eat during the days. We could take the alternate route of the NG tube but that makes it harder to swallow and we want to give her the best scenario for learning to eat. Hopefully we can quickly transition to a baby that eats by herself without the TPN (the TPN does cause some issues with organs - we aren't made to get our nutrition by IV).

We are also being delayed because she has procedures that need to be done before we leave. Those procedures are an MRI/CT to observe the status of her fungal infection on her kidney (and anywhere else it may have spread) and to take a bone marrow aspirate to test her new bone marrow. Ideally the new bone marrow is 100% donor marrow but sometimes the host marrow still represents a significant fraction of the remaining marrow. This will help determine the chance of a relapse of the leukemia.

Clara has been mostly tired and irritable (as have her parents). She has had the worst diaper rash immaginable lately that we are treating with a variety of ointments. It has improved over the past few days but has to be very painful for her. It is also obvious that she is bored in her room and would love to be able to move around. She really perks up when we have visitors. I'm sure that she is as ready as we are to finally be home and hopefully stay there!

Day +14: ANC = 500!

Clara's labs showed an ANC of 500 this morning! The doctors say we
could be taking her home as early as Monday!!!!

I'm headed to bed and quite tired just thinking about all that must be
done before we bring her home. However, I had to let you all know.

Additionally, she is less cranky since the lasix really began working
last night. She has become much less bloated and feels much better.
She continues to have a healthy amount of GVH show up on her skin with
minor red splotches here and there that make her a bit uncomfortable.
She is still loosing her hair-although not to worry as it consistently
finds it's way to our mouths.

There is much to talk through with the staff, much to prepare for at
home, and much to accomplish at the hospital over the next very few
days. Please forgive me for posts lacking in detail or frequency in
the coming days although I will make my best effort to share the
coming events with you all.

It really is shocking that we are here. It was just a few days ago
that I feared so greatly for her life and now things seem so suddenly
perfect. I don't mean to be blind to the upcoming potential
challenges, but they so grately pale to what we have been through that
I hardly see them as worth even mentioning or contemplating.

I can't wait to bring my baby home. With all the bells and whistles
and song and noise I can muster.

Day +13: Hair Loss and GVH

Well, as pointed out by my father, we didn't post an update yesterday.

Not much is happening.  Clara has been a little bit on the fussy side which is difficult because she is not a fussy baby.  We know she isn't in pain.  We know she is doing better, because her ANC is 260! But she has only really been happy when her "friends" come to visit.  Those same nurses that make my day, make hers! Oh, and Daddy sure did make her laugh tonight before I left.

She has begun loosing her hair - which is EVERYWHERE!  The last time we went through chemo, she was at the age that she was loosing her newborn hair.  It had nothing to do with chemo. It was slow and fairly insignificant because her new hair grew in as her old hair fell out.  This time, we are all hacking up hairballs.  I'm not kidding.  Unfortunately for Clara, it is difficult because she doesn't know how to clear her throat or swallow or spit out a hair.  So, it starts a gag reflex and she ends up throwing up.

She is retaining a lot of fluid because the conditioning chemo makes her cells "leaky" and the fluid ends up sitting around in random tissues and not being flushed out through her bladder.  Fortunately, I can report that she just had a huge pee under Daddy's watch - which is such great news.  He says she was much happier and seemed to be much more comfortable.

We have heard from the attending that the "allergies" she was having last week seem to be Graft vs Host Disease.  She was hesitant to say it last week because it was so early (her counts hadn't even really come up and it had only been about a week since transplant).  But, her "rash" has changed patterns and it shows up regardless of a Benadryl dose or not.  They are still tweaking her immunosuppresant dose to make sure it keeps it from raging.  But, right now, it is a good amount of GVH and we are only putting topical steroids and hydrocortisone cream on her to keep it from being too uncomfortable as she rashes and her temperature at the rash spot increases.

I need to take advantage of my night off and go to sleep.  G'night!

Day +11: Engraftment

There is so much news!  And each bit of it has such MAJOR implications.  I will try my best to help you all understand the "so what does this mean??" part of it.

• White Blood Cell Count = 0.7 (up from 0.4 yesterday)
• Remember white cells fight infection. And while we didn't have an ANC, it was the only number we had to gauge if she was producing new cells.  If her white cell count continued the trend up, it meant she is producing those all important blood products to sustain life and fight infections!!! This morning we heard from the nurse that she had 0.7, but hadn't seen her full lab report yet.  BUT, we knew that if she is above 0.5, then we have an ANC!
• ANC = 190 (up from nothing yesterday)
• Remember ANC is Absolute Neutrophil Count.  Neutrophils are one of the types of white blood cells that fight infection.  The ANC is a number that we watch a lot and when it reaches 500 for 2-3 days in a row, she can go off isolation restrictions!  This means we can go for walks around the hospital and outside, etc!!!  Technically it means we can go home, but there are other criteria and logistics she has to meet and that have to be coordinated first.)
• Monocytes are another type of white blood cell which we are seeing in the lab report today.  I don't know much about them, but the attending told us this morning that WE KNOW SHE HAS ENGRAFTED because she is producing monocytes!!!!!!!!!

So, this is where we all take a break from the education and scream, dance, laugh, cry, sweat (yes I was almost doing all of those simultaneously during the doctors' rounds this morning), whatever you need to do to get let the joy of the moment of Day 11 engraftment take over your normal, mature, appropriately inhibited self!!!

Ok. So. Guess what else?

We are past the point of worrying about veno-occlusive disease (VOD).  Remember we had been watching her liver enzymes really since transplant.  We don't have to worry about that any more although her liver can still be an indicator for other things.  But this is one BIG thing that we can officially say we have avoided and for which we are "out of the woods!"

So, now begin a new phase of looking for Graft vs. Host Disease (GVHD).  We actually expect to see GVHD, and we actually want a little bit of it.  The Graft is the donor's marrow and Clara is the Host.  Just in case there is one single leukemic cell left behind in Clara's marrow, we want the donor's new immune system to kill it.  Of course, we don't want his immune system (which will be created by his marrow) to decide it doesn't like Clara and gets strong enough to try to kill all of her cells and officially her.  So, we keep an eye out for symptoms and we keep it under control.  They've gotten very good at treating GVHD.

Ok. So.  The BIGGEST NEWS THAT YOU HAVE ALL BEEN WAITING TO HEAR!

If everything goes well...
If her ANC continues to climb...
If her Graft vs. Host Disease arrises, as long as it doesn't become severe...
If she can tolerate some food by mouth...
If she can take many of her meds by mouth...
If she isn't having fevers...

We could go home in 10 days!

Enough said.  REJOICE!

Her white count is 0.7!!

This is up from 0.4 yesterday!! More info coming after we talk to the
attending today.

Day +10: Exciting News!

We have a new attending for the weekend who is very personable and engaging so the words he chooses are simply more exciting to hear than had they come from any of the attending doctors we have had on the BMT Unit thus far.

Even with that in mind, I cannot help but be excited by the conversation we just had:

• "If you were to ask what we would hope for Day 10 to look like, this is exactly it."
• "Yes, it is possible that this is engrafment."
• Her White Blood Cell Count is 0.4 (It could easily be "high" today and go back down to 0.1 tomorrow).
• She is holding on to her platelets and does not need a transfusion like she has the past ~4 days.
• She is a baby and got 8x the normal stem cell donation which truly can result in engraftment sooner than Day 18.
• She is feeling better (can't see mucositis in her mouth anymore although it doesn't mean it isn't in her throat and the rest of her GI tract).

We also discussed that there are still some things to work out: particularly the allergies causing her to rash and her fluid levels.  Rash can be one of the signs of graft vs host disease - so I am particularly glad to have confirmed (in my mind) what was causing her to rash over night (Dilaudid) and to find that Atarex (which is a non-drowsy anti-histimine) does better than Benadryl for Clara when she reacts to a drug.  She is almost rash free and itching much less.  I am going to continue giving her Atarex over the course of the day to help her get past the left overs of all her reactions and hope that we will see a marked improvement today.  If we can get the allergic rashes to stay away, we will be better able to detect potential graft vs. host disease rashes. 

She also doesn't seem to need the pain meds much at all.  I think most of her discomfort lately has been due to reacting to so many things and, if she really is recovering her white counts, then that means any pain she is/was having due to mucositis may actually be gone or gone soon.

Alan is on his way to the hospital for the day and night.  The whole family gets to be together for the weekend which is HUGELY exciting to me.  My baby is sleeping soundly.  It is the beginnings of what I hope will be a very very good day and weekend...and dare I say many days more?

Day +9

Very hard day for me.  Full of emotion.  No energy to really tell the story.

Good news is: there is nothing wrong with her heart.  It is actually in excellent shape.

Bad news is: we are still battling allergies.  She is constantly reacting to something or being medicated to stop the reaction. Plus she spiked a fever twice today.

Hope we can stop it soon - I'm starting to feel allergic just watching her and it hurts to see her so uncomfortable all the time.