Day +128: Oh how time passes

Hello everyone. We obviously haven't been keeping up too much with the blog lately. Instead we've been trying to focus on life at home with a 1 year old and trying to be as "normal" as possible. We will try to keep folks updated, because we know a lot of you have an interest in Clara's story.

First of all, her disease status currently looks to be in a good situation. On her latest chimerism reports she is 99% donor throughout her marrow and blood which is an excellent place to be at this point. This test is +/-3% so this is nearly perfect. She hasn't had any infections and has been slowly weaned off of her anti-fungal medications. She is no longer receiving IV therapies (except for monthly immunoglobulins) and will hopefully have the central line removed soon. The hold-ups on removing her central line are 1) the doctors want to scan her again to make sure the fungal infection didn't come back after we stopped the last IV anti-fungal medicine and 2) they are worried about blood access because her veins are small and they currently need labs once a week. The first concern will be addressed on June 6 when she has a MRI/CT to check the status of her previously infected areas. If everything looks fine, the vascular access team will determine if she can handle pokes once a week. Removing the central line significantly reduces risk for infection and will allow us to go more than 20 mins away from the hospital!

We, of course, are not completely out of the water yet. Clara is still very immunosuppressed and can't go into buildings or have visitors. She has to wear a mask going into and out of the hospital still. And, of course, we are eager for the 2-year mark at which point she has a much lower risk of leukemia relapse (a long time off!). Hopefully her immunosuppressant drugs will be weaned sooner rather than later to also help reduce the risk of infection. The doctors have been "in discussion" on being more robust regarding the rate and amount at which we are weaning.

Clara has actually started growing a bit! She is still pretty low on the growth charts but is ~8kg (~17.6 lbs) now. She is also starting to make progress in eating. She will now voluntarily chew on things (crackers, eggo waffle, banana) and recently had success drinking from a cup and a sippy cup. Here is a post Brooke made on facebook today about her eating milestones:

Clara stole my grilled cheese sandwich!!! :-( ... :-)

She was across the room from me when I sat down on the chaise to eat it. Made a bee line for me (crawling) and stood up to assumedly get to me. She had been snuggly all day.

I offered her a lick as I try to always do and she went at it with a sucking bite. So I hefted her onto my lap. She took it from me and gummed at it -progressively licking off the butter and the oozing cheese. Fortunately the cheese acted as a glue to keep the bread from breaking off into pieces she didn't actually want in her mouth (and that she wouldn't be able coordinate to swallow). But it wasn't too much cheese to cause a choking hazard of its own.

After having had a phone conversation with OT only a couple hours before, I knew she needed some water which she trusts and loves to help her organize the crumbs that were bound to accumulate in her mouth into a swallow before it got too big. Lately the crackers she has been gumming have stayed in her mouth and not actually been swallowed.

She went back and forth between the water and sandwich. Like a normal kid. Slowly working the sandwich into a more and more soggy sandwich. Of course it is breaking off into crumbs and bits and, for the first time ever, she noticed the crumbs and bits on her fingers and put them INTO her mouth. And she didn't spit them back out. They were the size of what she was scared of yesterday. Yesterday!

It was amazing. I was so proud. She always has these leaps of progress after I have a conversation with OT. We are getting there!!!

Finally, I would like to close with a belated "thank you" that so many of you are deserving. We have found our lives to be too busy to remember to thank you every kind word and generous act over the past months but every one of them was seriously appreciated. Those of you who sent clothes for Clara were the sole providers of Clara's attire for most of her treatment as we never had a chance to shop for her. Those of you who sent gift cards allowed us to run across the street to the nice grocery instead of spending more time away from Clara. Those who sent cards kept us reminded that there were others thinking and praying for us to help us pull through. There were many other gifts including food (mmm...mm... all gone), a pillow (still in her bed), stuffed animals (two of her favorite toys), books (which she really is starting to enjoy), a quilt (which she still sleeps with), a king cake (happy Mardi Gras!), and many other tokens of love that I am sure to be forgetting as I sit here late at night many months later. Thank you all for the love and support and I hope that we can all look back at this in amazement as she continues to improve and lives a long happy life knowing that so many people care for her!

Happy 1st Birthday, Clara!

Clara had an incredible day today.

It started early as she heard Grandma and Grandpa Boyle getting up for the day.  She was anxious to open her presents!  She knew it was her birthday!  (Not really - but she was happy to see those exciting people were still here and that she got to play in her pile of new clothes that Mommy bought yesterday!)
 
Grandpa made a donut run while Mommy and Daddy prepped the coffee to adjust to an extra early morning.  We got to sit around quite a bit because Grandma is much more entertaining than we are.  She can raise her eyebrows over and over.  It makes Clara laugh each and every time!

After a morning full of opening presents, showing off her index finger in response to "How old are you Clara?  Are you 1?",  and giving kisses and clapping upon request, she decided to take an unusual morning nap - twice.

We all gathered ourselves together by noon and headed to Shoreline Park in Mountain View.  Clara loves to be outside and our goal was to keep her outdoors as much as possible for her birthday with as little sun exposure as possible (it can cause inflammation and Graft vs Host Disease).  Mommy and Daddy ate lunch at the cafe and we all walked around to see the water, geese, baby goslings, ducks and their baby ducklings, and a lot of kids hooting and hollaring on the playground.

We then moved onto a county park in the redwood groves where Clara would NOT stop kicking her legs in excitement on the trail.  It was like she was saying, THIS IS WHAT I WANTED FOR MY BIRTHDAY!  It was quite a scenic drive out there, and she loved being out on the trail.

By the time we got home, she'd been awake for 6+ hours and was a bit overtired.  We attempted video streaming the rest of the evening so family and friends could see her live, but she was a bit fussy until we sat at the dinner table.  She loves being in the Bumbo on the table during dinner, but I'm afraid it was a bit odd for the spectators.

She did make continued, significant progress today in the world of drinking and eating!  She took several gulps from my water bottle when we got back from our adventures.  At dinner, I put a spoon to her mouth that had some broth from our white bean chili on it.  By the third offering, she turned towards the spoon, leaned in, and opened her mouth!  She's going to be eating in no time!

Happy Birthday, Clara!  We are so very proud of you!

Growing up all of a sudden!

Clara got the memo that she is turning 1 year old tomorrow! And so now she is:

• smacking kisses upon request
• clapping and saying "hey!"
• verbalizing "hi!"
• waves three different ways
• walks around the room at a ferocious pace while holding onto at least one hand and whatever else is within reach
• almost crawling
• points at the skateboard (go figure) in a book
• points in general, which looks like "I'm 1!"
• cares more about laughing at Grandma's eyebrows or Grandpa's monkey face than she cares about Mommy and Daddy

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.