Day +72: Medications

As an update (and so that I remember this in the future) of Clara's mediciations I am making this post. I can't imagine doing this without the NG. 17 oral meds would be impossible to accomplish. Ideally we will be off these before we decide to pull the NG for good.

Oral Meds:
Daily Early Morning & Evening (no food/meds 1 hour before or after):

• Prograf
• Voriconazole

Daily Morning & Night:

• Zantac
• Magnesium
• Sodium Bicarbonate
• Valacyclovir

Daily Afternoon:

• Magnesium
• Valacyclovir
• Multivitamin
• Folic Acid
• Amlodipine

Monday & Tuesday add to morning and night:

• Septra

IV Meds:
Every 8 hours (3 times daily):

• Mycophenolate mofetil (MMF)

Monday, Wednesday, and Friday:

• Amphotericin B

Day 64: Feeds and Food

Clara is doing great in the world of nutrition. For the longest time, I've been struggling to get enough food through her NG to at least keep her hydrated. And then she needs even more than that to get enough calories to grow. So she has been getting IV fluids at the hospital when I haven't given her enough formula to prevent dehydration.
However! Today I discovered that even though she was nauseous this morning, she was able to handle a LOT more formula during one of her feeds today. That means I could potentially start feeding her much more at each "meal" without not over filling her and causing her to throw up. So! She can finally start getting enough nutrition!!!!
On top of that. We finally saw the occupational feeding therapist yesterday (she is the supervisor for outpatients and inpatients). She encouraged me to stop trying to structure feeding times and routines. Rather expose Clara to food any time she is curious about what I am eating. As much food as frequently and fun as possible.
So, that same day, Clara was watching me drink my coffee from my travel mug. When I offered it to her, she immediately put it to her mouth and actually repeated it three times. Apparently coffee is a flavor that doesn't activate her gag reflex. Supposedly sweet flavors are more likely to do that -which made sense considering she keeps gagging on applesauce and bananas, and strong, salty, or bitter flavors are more interesting and less likely to activate the gag reflex.
I've had a lot of fun just giving her food. And she has amaze me at how much she is willing to let me put food in her mouth. And she loves trying to drink from cups, water bottles, and wine glasses :-). She even put a peach yogurt melt in her mouth and gummed on it until it was stuck to the roof of her mouth and I had to retrieve it.
So proud of her! Major progress on all accounts!

Day 62: GVHD and vomiting

We did find out today that Clara will continue to be on immuno-suppressants for a lot longer than we had ever expected or hoped. 

The bumps were definitely caused by GVHD as they significantly decreased with in a couple of days of increasing the dosage of her MMF.  Their best case scenario was 1 week.  Today, I was told we will stay at the 75% dosage for 3 more weeks and will probably stay on 50% for a long time after that (no specific number of weeks mentioned).  This is really disheartening as it means we will be giving IV meds at home for quite a while longer. 

Along with this news was the news that EBV (the virus that causes Mono) has gone from undetectable to 5,000 raw counts.  Don't worry about the 5,000 number unless you know enough to know what that means.  The point is that it had gone away, and Alan and I fear that as we are back on this higher dose of MMF, she won't be able to fight the EBV like she was apparently able to when we had tapered off to 25% of MMF just two weeks ago.  The longer she stays immunosuppressed the less able she is to fight things like EBV.

Additionally, we think the MMF is increasing her morning nausea.  She seemed to be getting better but is now consistently vomiting 1-2 times each morning.  She seems fine and then is all the sudden vomiting regardless of how much I have fed her via NG.  If she could only tell me she felt sick or that she was feeling full, it would be so much better.  Or if she could eat on her own and chose not to eat at that moment because she was feeling ill or full.  But until those days, we are having a really hard time getting her enough nutrition to keep her gaining weight.


That's the update for now folks.


Hope you are all doing well!  We are loving our days at home.  Thanks to Alan, I've actually gotten caught up on some doctor appointments for myself, and we made home cooked meals for most of the week last week.  Of course, those days resultantly wear us out!


Anyway, it's all progress.

Day 62: 30 days 'til 1 Year Old!

Our sweet Clara is growing up!  She turned 11 months old yesterday.  I can't believe I am supposed to be making birthday plans for her 1 YEAR old birthday.

Clara is getting stronger and stronger.  She is getting really dangerous as she gets more and more confident with standing and cruising.  She is officially cruising from one piece of furniture to the next as long as they are within reaching distance. 

She is also changing in the way that she observes what is happening around her.  She is discovering new things around her that I've never seen her pay attention to: like her Elephant and Giraffe prints above her changing table, the lightswitch in the hallway and the thermostat.

She is also getting very opinionated about what she wants and doesn't want.  She has learned to shake her head from side to side instead of constantly bobbing it up and down as if in agreement.  I realized she has been trying to shake me off if I am messing with her head when she doesn't want me to.  Or tonight when I was rubbing/massaging her foot, she shook it to make me stop.  She has only done it a handful of times, but has begun screaming in protest if we take away something she was enjoying or pushing things away if we give her the wrong item.

Nap time and bedtime are continuing to evolve.  We are trying to "give" her less in the way of rocking/walking her into drowsiness.  This has been our routine for so long that she clearly knows when it is time for sleep.  Sometimes she points at the door or whimpers in protest, but for the most part, if you picked the right time to put her to bed, she snuggles in and goes to bed within a few minutes.  She is usually awake when we set her down but very settled and ready for sleep.  Tonight was a slightly different story as she simply threw a temper tantrum for about 45 minutes.  She always calmed when Alan went in but didn't quite decide she'd go to bed for a while.  But we know she is aware it was bedtime.  It didn't come as a shock to her.  We know she can put herself to sleep because she sleeps through the night.  Tonight, she just didn't want to.  But Alan does a great job of going in to make sure she is okay, fixing her positioning if she needs it but then leaving without picking her up.  He does a much better job executing what I know is "best" as if that is anything.  I'd be so afraid she was hurting or not feeling well.  If I was putting her to bed, I'd most assuredly  pick her up for fear something big was wrong...as opposed to the simple: she is throwing a temper tantrum and doesn't want to go to bed.

Alan has uploaded several home videos from just before she was diagnosed through the present time.  Click on the Clara's Home Videos link on the right-hand side of the blog.

Just tortured her and she still loves me.

I just strapped Clara arms with a swaddling blanket, and Alan held her down while she screamed for 30 minutes as we forced a tube up her nose and changed the bandages over the entry point of her central IV line in her chest.

I was honestly sure she was going to reject me after being the source of such trauma. She quickly calmed to quick, quiet breaths once I picked her up and was laughing within 5 minutes -cheeks still damp with tears.

I hope she makes dramatic steps towards eating soon. No NG would make a significant difference in the frequency of such traumatic incidences.

MRI/CT Results and GVHD

Clara's scans looked great! Apparently, her brain and kidneys look the same and her lungs look better than a month ago. She had some fluid in the right lung before and there was some sign of compression that they thought was due to general anesthesia from earlier in the week. They didn't give me specifics, nor have I seen the scans, but they did say the lungs were better!

So! This means we do not have to go to the hospital tomorrow or Thursday ANYMORE! Only Monday, Wednesday, and Friday! Not sure for how long. Think it will probably be two months.

Unfortunately, the bumps on her skin are suspected to be GVHD. This is not really what we wanted to hear for many reasons, but mostly we are disappointed that it means we will have to continue to keep giving her IV meds at home for a long while. Just to clarify, the amount of GVHD is small and not worrisome to the doctors. Plus, the med they will continue giving her is fairly benign as far as toxicity to the body. But as long as we have to keep giving her immuno-suppressants, the longer she will be at risk for infection.

Day +53: Skin Bumps and Pulling up to Standing!

Clara has some odd bumps that we have been watching on her scalp, face and hands.  This morning, we discovered them all over her body - anywhere she has hair. Although if it is her newer skin, there are fewer bumps, and if it is her darker, chemo skin that she hasn't sloughed off, there seems to be more of them.  It seems to be dry skin but I'm so afraid it is viral.  We videotaped her and sent it to the attending on service at the hospital today so that we wouldn't have to expose her to the ER for a non-emergency situation.  He wasn't worried about it at all.  We will see what the doctors say when they see her tomorrow in person.

In other GREAT news, remember I said Clara is making great strides with her musical table?  Take a look!  This was the second time she has pulled to standing all by herself.  She has repeated it a couple of times since we taped this and is also making strides towards crawling today.  Lots of core body strength developing!

Great strides!

Clara is developing phenomenally.  Two posts ago, I mentioned several things that she is/has been doing lately. 

It has been really wonderful to see her develop since we have been home.  Even during transplant, you all saw the pictures of her standing on the bed/couch!  What I don't think we fully comprehend is how delayed these babies apparently get.  I have been told by the outpatient nurses a lot lately that she is just turning into a little girl!  When they start explaining how most babies that have gone through what she just did are 6-8 months behind developmentally and how they are very infant-like and how impressed they are that she has such a great suck on her pacifier.  It makes me realize how lucky we are that she is as strong as she is and has made it through this with relatively little delay.  She is incredibly social although she has a very sweet and shy disposition - unless you have just the right demeanor that sends the message "I'm a happy, non-scary person, and you shouldn't be afraid of me."  Then it is amazing how quickly she will become not just comfortable but engaging with people.  And not just people that she sees frequently...it could be the first time she's met them in some cases. 

She loves to nod at people with the biggest smile on her face.  Up and down.  Up and down.  Goes that little head as she agrees with whatever you say or ask of her.  At the end of last week, she learned how to shake her head from side to side in a "no" pattern.  I realized that we never say no around her.  Our world has been so full of not fun things that we had to stay positive and always say yes.  She has always been shown and told, "let's do this, shall we?"  So it wasn't surprising when she started nodding yes all the time!  But this no thing was shocking really.  I realized that she was just realizing she could rotate her head in a different way.  And when she would speed up the shake, you could tell she was process how the world spun in a different way.  It was great to see her then realize she could switch between the two.  Yes, no, no, yes, yeno, noes!  All with a silly grin on her face.
 
She has also begun cruising - it is just the beginning mind you but is developing fast.  Earlier this week she was standing, hanging on for dear life, tiring fairly quickly, being unable to lift one foot or the other while standing at the mirror, or on her musical table that I bought her a couple of weeks ago, and I would have to stay directly next to her with my hands constantly correcting her footing or supporting her torso should she accidentally let go.  Now, she leans towards the floor so that I will put her down standing next to the ottoman, couch, mirror or table.  She is getting better at playing with something in her hands and just semi leaning on the furniture.  She will stand there just hardly hanging on while shifting her weight from one side of her foot to the other or her heel to her toe and then from foot to foot.  She easily walks if she is holding onto our hands, but has not quite learned how to side step along a piece of furniture nor gained the confidence to move from one piece of furniture to the other.  She will attempt moving from the mirror to the musical table.  Not sure why that perpendicular move is less scary for her.  Probably because of the height of the table.

The best news of the day is that she ate some solid food today.  This is the second time in a couple of weeks where Alan offered her some toddler puffs and she actually gnawed on them until they dissolved and were swallowed!  Today he had been eating a salty cracker snack pak and she wanted one.  He stuck one against her lips, and when she actually started licking it he realized it was time to get out her food.  She did a great job!  I was asleep taking a nap and tried to get her to duplicate for me.  She didn't eat.  However, she was LOVING her bowl.  She would put her lips to the edge of the bowl and tip it so that it covered her face.  She hasn't been exposed to many bowls so I think she thought it was a giant Mommy and Daddy cup.  PLUS, there is a sippy cup we have been giving her for the past two weeks just trying to get her to play with it and rewarding her with praise if she touched it or especially if she put her mouth to it.  Today, she actually let me put the spout in her mouth and move it around while making silly noises as it rubbed against her gums.  I was so very proud.

These are massive strides, and I really hope we will have her eating even a little bit in the next couple of weeks.

Gone.

It is as my best friend begins her new life as a mother...
that I realize I am truly no longer breastfeeding Clara.

It is a sad moment.

Something took it from us.

It wasn't my decision.  It wasn't hers.

But all the sudden (so it feels) it is over.
And I mourn the loss of something that once was ...

pain...a different, simple, physical pain.
routine...a duty, essential, responsible task.
bonding...a beloved, indulgent, private moment.

Gone.

MRI/CT in progress

I've just left Clara at the hospital and have come home for breakfast and coffee. She is having her scans now.
Poor thing threw up 3 times this morning with a completely empty stomach. She had diarrhea with each vomiting. She hadn't thrown up the past few mornings which was really a significant sign to me that she was doing better. I guess it can't be that easy.
I am so glad I posted the update the other day because now I can tell you the official plan from the doctors assuming her scan is clear. They do expect it to be clear and I imagine we will hear the results of her scan by noonish today.
Item 1: no more micafungin. That is the daily IV med we give her at home.
Item 2: ampho 3x/week until she is 3 months post engraftment (approximately 2 months from now)
This means that on Tuesday, when her 3x/day MMF goes away, we will no longer be giving IV meds at home!!!
Her kidney looks like it is under stress as well and coming off some of these drugs should help with that over the course of a month.
Hoping to get good news today. Saw a tearful mother of an infant in the waiting room today. I don't want to be that mother again. I felt so deeply sad for her.

Day +48: Getting into a routine

Things are beginning to slacken up.

Routine:
For the first 2 and a half weeks, I was so busy charting, giving meds, prepping for whatever came next, getting us to and from the hospital for her daily anti-fungal med, etc, that it seemed impossible to keep up.  No matter how well I charted, something always got in the way and threw the whole thing off.  In the past few days, I haven't had to chart at all.  I know what med is coming when.  We have a standard timeslot at the hospital and all our meds are coordinated around it.

Fewer Meds:
We are 7 days away from not having to give Clara her MMF (1 of the 2 immuno-suppressants which is given at 7am, 3pm and 11pm).  The MMF dose has slowly been lowered since we have been home.  Instead of running over 2 hours, we are now giving it over 30 minutes which allows a little bit more flexibility when we are in transit and that Alan doesn't have to stay up quite so late at night.

That means that on Tuesday of next week, we will only be giving her one IV med (micafungin-an anti-fungal) at home which is given once a day at whatever time is convenient.

PLUS, and this is the most exciting news.  We are anticipating scaling back on the ampho (the dangerous anti-fungal which has to be given at the hospital).  What I don't think we told you all (for fear that they weren't really sure or weren't telling us the whole truth) is that Clara's fungal infection seems to be gone!  She had an MRI and CT a few days before we were discharged from the SCT Unit and they couldn't see the aspergillus. Because they scans can't show everything, and there could still be some residual infection, they are slowly decreasing the frequency of treatment and number of medicines instead of cutting them cold turkey.  Upon discharge, we moved to 5 days a week for 4 weeks.  We are ending that 4th week on Friday at which point Clara is having another MRI and CT to see if the infection still looks like it is gone.  If all looks good, we move to ampho only 3 days a week (I think for a total of 4 weeks)!  We will be spending more days at home than we do at the hospital!  They haven't told us if we would move to once a week after that, or if they will just stop us at that point.  Next, they would slowly have us stop giving her the remaining IV med at home.

So, once the MMF is gone (next Tuesday), and the ampho (at least a month away), and the micafungin (don't know when), Clara will no longer be on IV therapy....and her central line can come out!  I know this sounds likd a lot of steps and a long way away, but I can actually see these things happening.  And there was such a long period where this never seemed possible or part of any kind of near future.

Numbers and other important measurements:
Clara is doing remarkably well in her recovery.

Since her engraftment, Clara's platelet count took off.  There is a not well understood correlation between platelets over 100,000 by day 100 and overall survival.  Clara has been well over that number since before we were discharged.

Her ANC continues to be well within the normal range.  She still has a suppressed immune system.  So, while the counts are there, they aren't necessarily doing their job well because we won't let it.  But, the important thing is the production of these cells.

GVHD (Graft vs Host Disease) has not been an issue for Clara.  This is great because it means her donor cells aren't rejecting her body.  Plus, GVHD puts you at greater risk for infection.

Clara did have some sort of virus that reared its head last week and hasn't completely gone away.  Her eyes turned yellow as her bilirubin levels skyrocketed in a 24 hour period and all of her liver enzymes were up.  This was a story in an of itself as the Doctor didn't even see the bumps on her hands or the yellowed complexion or eyes.  And when the labs came back validating my concerns, he had a new-found respect for my judgment.  She seems to be fighting it on her own and they aren't really sure what "it" is.  Her creatinine is also a little bit elevated which is associated with her kidneys.  They are just watching it to see which direction it trends.  Additionally, she has reactivated EBV which is the virus that causes mono.  It is possible that she will need treatment for this which will make her further immunosuppressed over the next 2 years.  Not quite what we'd like to hear at this point, but for now we are also watching the disease level and her immuno-globulin levels to see if she can fight it on her own without treatment.

Clara had a bone marrow aspirate on Day +28 which was negative for leukemia and showed that her marrow and peripheral blood system was primarily from the donor.  Both of these results are what we expected but no-less exciting.  She had another aspirate done today and we will know the results in about a week.

I am sorry this post is so delayed in coming.  It includes a lot of technical talk and will be over the heads and interests of many.  But it is also long overdue in letting you know the status of her disease and recovery.

Now, I can concentrate on my next post including fun stuff like: Clara is cruising, walking (while holding my hands), is getting very strong, loves peek-a-boo, sleeps in her own bed through the night (12-13 hrs) without any crying while Daddy sings to her for 3 minutes and then puts her in bed, bonded with Mimi (my mom) while she was in town a little over a week ago and so now has less separation anxiety, sits on the floor for alone playtime while I get things done around the house, wears her hospital mask like a champ, understands the words: walk, stand up, snuggles, kisses, night night, come to me, uses her pacifier as a security object but is also seeming to bond with a toy doll from my cousin Christine...and others.

But for now, I must go to bed as we have an early appointment at the hospital tomorrow!

Goodnight!