New MRD Results

Today we got the results of Clara's MRD from the round two of chemotherapy. If you remember, this is a measure of the amount of leukemic cells versus non-leukemic cells in her bone marrow. An ideal number is 0% (or as they can measure it would be < 0.01%).  After the previous round of chemo we were had bad news about MRD (as it being low is one of the best prognostic indicators).

Her results today are pretty good: 0.21% MRD. This is not remission and not the optimal scenario for stem cell transplant. However, we will be moving forward to transplant within the next few weeks without another round of induction chemo.

Disturbingly, we also discovered that the original MRD measurement which we though was 12% was actually a mistake on the part of our attending and it should have been 0.12%. This error came up with a new reporting method that they are using (it sounds as if they get a spreadsheet back and the new report provides a % while the older method did not. The attendings inappropriately assumed that they had to shift two decimal places (ignoring the % that was already there). Luckily the value difference wouldn't have changed the treatment.

As I said these results have the doctors wanting to start transplant as soon as possible. We have two matched donors now and will be transplanting based on their availability. We also have to wait for Clara's white cell counts to recover a bit before the preparatory chemotherapy because that significantly reduces the risk of infection during the time where she has no immune system. We are looking at probably 2-3 weeks until transplant.

Mimi's Visit

I haven't had a chance to talk about my mother's visits much on the blog.  I have taken for granted that she knows how much it meant to me to have her here and for Clara to get to spend some time with her.  It is difficult to thank someone for such a gift as what she has given to me.  I'm not always so great with words and, in this situation, I have less time to sculpt what I want to say.

To my mother, I want to say thank you.

My mother is quite eloquent with her words and posted on her blog the most beautiful and difficult descriptions of what she witnessed while she was here this month.  I'd like to share it with all of you.

Great News from Stem Cell Team today!

10 of 11 donors requested from the National Marrow Donor Registry agreed to have their blood tested further to confirm a typing match.  The first 2 are in and are perfect 10/10 matches! They are also a match for other important criteria that normally people don't get to be picky about.  We are still bringing in the other 8 for back ups should a donor not be physically stable enough to donate or the timing of the donation doesn't work with their personal schedule, etc.

Now we just need her to be in remission from this last round of chemo and we can head to transplant!!!  


The fastest we would be in the Transplant Unit is 3 weeks...that's assuming we get Clara's marrow results back tomorrow and she is in remission - which we don't expect.  But, we'll keep you posted!

Aspirate and Biopsy Done

 The procedure went well.  Apparently they went in through one of the 5 sites from last week.  I'm not sure if that will make her more or less uncomfortable.  Regardless, I am keeping her medicated today.  She has been sleeping since the procedure, and I hope will continue to sleep through the night.  We will see.

Both Dr. Lakayo and Dr. Dahl were with her for the procedure - I wasn't expecting that.  They said there was more marrow than last week but they are still not expecting it to be enough.  Dr. Lakayo apologized for putting her through this but that we want to know as soon as possible and that we want to keep pushing the stem cell team to move as fast as possible.  Supposedly they are moving very fast, but we want to give them every reason to continue to do so.

Her counts are still stagnant; so, who knows if they will be up next week.  I don't think they even have her tentatively booked for another procedure at this point.

Right now, we are waiting to hear the aspirate and biopsy results, plus the results from the 3 donor specimens, plus whether or not Alan or I are a mismatch to her HLA type.  I hope we will get the results for all of these things by the end of the week but wouldn't be surprised if it takes until Monday at the earliest.

Discomfort Last Night

Last night was much harder than I anticipated.  Clara woke up at midnight and 3:30am and was acting similar to two nights ago where she was just really agitated...not just fussy.  There was something obviously wrong but I didn't really know what.  Her 3:30am waking was after crying in her sleep and then waking herself up with her outcry.

It turns out her temperature is up (which is what happened two nights ago).  It isn't quite a fever - but it still has me worried.

PICTURES!

Just cause you like to see them and I like to show her off!

My current favorite picture with Clara sleeping next to her prayer pillow.  A gift from a friend of a friend of my mom's.

Simply ridiculously cute in her brand new bumbo.

Since this picture was taken, she's learned how to consistently knock the toy OFF the tray.  Mommy says, "uh oh!" and puts it back on the tray and says "there it is!"  Can't believe she is learning cause and effect already!

Too much fun and she is asleep with her toys again!

Snuggles with Mimi in the hospital atrium.

An unfortunate picture of the side of my face but a gorgeous one of my daughter.  She has had a few nights where she needed to be near me to sleep well.  This is a perfect example of how she likes to have her hand on my face while she sleeps.

She LOVES the lady bugs on one of her new dresses from her Grandma. They are both fun to look at and eat!

See loves those toes!

Teehee!

Today, she decided her new favorite sleeping position is with her hand over her eyes.  I'd probably learn how to block the light from the door too!  All those silly nurse visits!

One of the nurses gave Clara this mobile.  Absolutely fabulous!  By Tiny Love.

The BEST picture from Mimi's visit!

Clara shopping for PICC appropriate clothing now that she is in Size 6 month clothing!

Clara showing obvious comfort.  She was overstuffed from her overnight feeds and I moved her to my pillow to stretch out her belly.  She was much more comfortable after about an hour of laying there.  Only problem was that she threw up 20 minutes later after I gave her some of her meds.

This girl has got some fine motor skills!

Tired, but...tada!

Bone Marrow

So one thing we haven't posted an update about is Clara's bone marrow and whether or not we are headed to transplant yet.

Last Tuesday, Clara had a bone marrow aspirate and biopsy.  It took until yesterday for them to tell us that the marrow sample from last week's procedure wasn't sufficient to determine her MRD (minimal residual disease).  As such, they tentatively rescheduled her for another aspirate and biopsy for tomorrow (Wednesday) assuming her white blood cell counts had recovered enough that they would expect enough bone marrow to be able to get a good sample.

This morning, they let us know that while Clara's counts HAVE NOT recovered, Dr. Dahl (the head AML dude at Packard) wants to take a look anyway.  While we hate to have her undergo another procedure (general anesthesia is always a dangerous things, plus last week they had to attempt a biopsy in two places on one hip and three on the other...she was so bruised and is still healing), we also want to know as soooooon as possible, if there are leukemic cells in her marrow.

Alan and I were finally tested today to see if we can undergo a Natural Killer Cells (NKC) procedure at St. Jude Children's Hospital.  IF Clara is not in remission after this last round of chemo, NKC is another treatment that they are trying instead of chemo once we are at this stage of treatment.  I don't completely understand the process, so you would have to bug Alan for a blog post on that one.  But, basically, if Alan or I are a MISmatch in our HLA typing, our cells could be a treatment plan for her instead of chemo and before bone marrow transplant. 

The goal is for her to be in complete remission (or as close to it as possible) before we go to bone marrow transplant. 

We did hear from the stem cell transplant team that they have (3?) specimens from potential donors that have arrived at Stanford.  We will have to wait 3-4 days to find out if they are a perfect 10 of 10 match like we anticipate.  Nothing but perfect for our Clara Bug!

So!  Keep the thoughts and prayers coming!  Clara's procedure is at 7:30am PST.  We had a PERFECT night's sleep last night and I am anticipating the same tonight.  A concoction of benadryl and dilaudid are ensuring that. 

Thanks to all for your continued support. 

Fussy

While yesterday was a fabulous day for me because of the support of my husband, the past five days have not been ideal for Clara.  She has had wonderful periods of play and she is continuing to prove herself to be a tough (handles pain like a champ and does her best to self soothe instead of crying fitfully) and gentle (loves smiles, kisses, indulging the staff with her undivided attention when they talk to her, good-natured, and easy to please) little girl. What is frustrating is that she has been particularly fussy - which is just so unlike her.  She isn't a complainer and is always easily distracted.

She had a horrible night last night, only able to fall asleep in my arms, at the breast or in bed with me.  I finally had to call Alan at 6am to relieve me as I had only gotten about 2-4 hours of not so good sleep.  I couldn't have made it today without his help and don't have words for how to thank him.  He was our "watch dog" this morning as the nurse shift change took place.  Clara and I kept sleeping while he answered any questions they had or acknowledged whatever they felt like they needed to communicate until she and I both woke up at around 11. 

She threw up her NG tube 45 minutes later - which explained the extreme discomfort she seemed to be having in her bloated belly.  She got to be free of the NG for about 5 hours before they had to put it back in for the night.  Our nurse today, Heather, asked if I'd like to pre-medicate Clara before the process of stuffing a tube up her nose and down her throat.  (She didn't quite phrase it that way.)  I had never been asked that before, and only today realized how helpful that might be before putting her through such trauma.  We gave her Benadryl (since she was probably feeling some tummy discomfort today anyway and since she had not had a good nap all day, it would make her drowsy).  It was the FIRST time in 5 days that Clara has not fussed when put into bed.

She slept soundly while Alan and I went to get pizza at our favorite local place - Applewood Pizza - and didn't wake until the moment we walked back into the unit 2 hours later.  We had discussed at dinner that she may still be having some pain and that if she still seemed fussy tonight, we would give her some dilaudid.  Lo and behold, she was fussy and dilaudid worked.  She is now soundly sleeping and there are no anticipated entrances into the room until 2:30am when the nurse will have to refill Clara's feed bag.

Here's to a good night's sleep for all of us.

A Fabulous Day!

We have just had what I would call an incredible day!

Since it has been such a long time since my last update and I am always long winded anyway, I thought I'd post a series of shorter posts chronicled by topic and use this post as a bulleted version of the important stuff and a link source to the more detailed post.

• Clara gained weight!
• We've started solid foods.
• I had a shower, fancy coffee, a donut, and freshly laundered clothing!

Simple Pleasures

It is amazing what new things become very important simple pleasures of life when you become a mother.  As a mother of a hospitalized child, one such pleasure has become more infrequent and so much more treasured:

a shower.

Today, I got a shower.  And my husband brought me my other daily guilty pleasure: a cup of coffee. Normally, it is drip coffee brewed in the patient kitchen at the hospital or brought to me on my morning breakfast tray from the hospital.  Today, it was a white chocolate mocha from Starbucks accompanied by an old-fashioned donut and a kiss from my husband...and clean laundry.  Such a wonderful start to my day.

Solid Foods

Before Clara got sick, my biggest worry (as noted in my last blog post prior to her diagnosis) was having to introduce solids.  It was a sign that my "newborn" - become "infant" - become "baby" was growing up.  I wouldn't have even claimed that breastfeeding is the most wonderful thing in the world - although it is now something I cherish. I just didn't want her to grow up and move past the breastfeeding stage.  Plus, breastfeeding is free, and virtually mess free since Clara wasn't a spitter upper.

Now, here we are.  She is 6 months old and I can't hold out any longer.  The bigger problem?  I can hardly get her to eat at the breast, she has a tube stuck in her nose to force feed her, and I am supposed to be introducing solids!?!?  I can't even find the time to play with her most days because she is either nauseous or tired or attached to her IV (which makes it hard to have tummy time or encourage her to sit up or roll over around this IV line).

Fortunately, she is continuing to advance developmentally - particularly with her fine motor skills. When she pulled off the breast the other day and tried to instead grab my nipple and put it in her mouth, I knew she was more than ready to start solids.

So that is one of our new daily dilemmas - is she in a good enough mood and feeling up to "playing"? AND should we spend this one lone period working on gross motor skills or solid foods?

We tend to alternate days.  One day it is rice cereal and the next it is playtime.  Since today was focused on family fun, we will do solids tomorrow!

Clara Gained Weight!

The biggest news is that Clara has gained weight!  She is now 6.314 kg = 13 lbs and 14.5 oz! 

And for once, it doesn't seem to be fluid overload of her tissues.  Granted, her weight can greatly fluctuate dependent upon whether or not she has just had one of her massive pees or poops or has one yet to come, but this is the most she has weighed since her admittance. 

To give you an understanding of the significance: Clara's weight has fluctuated right around 6 kg which was roughly 50th percentile when she was admitted at 4 months old.  But now that she is 6 months old, 6 kg puts her in the 0th(!) percentile. Her appetite has fluctuated severely over the course of our being here and after her PICU visit and this last round of chemo she had to re-learn how to breastfeed.  Even when she seems like she is eating really well, it only lasts for a day or two - and still isn't close to the number of ounces she is supposed to have in a day.  Even more important, she needs even more calories than a well baby to be able to repair her body from the chemo. 

So this was HUGE news of success after two months of feeding her at the breast, through her NG tube, continuous feeds from a pump through her NG tube at night, AND having introduced solids last week (which are unfortunately not enough to count as caloric intake yet) all in an effort to help her gain weight. 

WE (and she) DID IT!

$1,154,192.76

Wow, folks! I just checked our insurance portal and we just passed the million dollar mark. I thought that this would be a good time to post how thankful we are to have such a good insurance policy (and I know some were concerned about the cost). As long as everything goes as we think that it is going to go, we will only owe $250 at the end of this. I feel for those in similar situations having to figure out how to deal with the financial burden on top of the already emotionally tiring situation.

On the eating front

Clara has been having some trouble with her eating. She has been mostly on an NG tube and was getting scheduled feeds of Brooke's milk.  Unfortunately though Brooke's frozen supply ran short this week and the doctors wanted to add formula into the mix to help her get the calories that she needs. The big concern is that Clara has to burn a lot of calories just dealing with the effects of the chemo, not to mention her caloric need to sustain regular growth.

So the night that they started the formula, she was already a little swollen again (this is what sent us to the PICU last time). She continued to get more fluid overloaded that night and the next day she looked particularly hefty. Of course, we didn't want to keep feeding her because she looked like her stomach was going to pop. She seemed really uncomfortable and was laying down with her belly arched out all day. Until finally she peed. She peed ~120grams in about 10 minutes. That is 2% of her body weight, which for your typical 150lb person is 3lbs of pee (this is really an unrealistic extrapolation).

Right around this time they decided to take out her NG and see if she could continue to gain weight without the forced feeds. Of course, she lost some weight from the fluid overload and also lost some weight because she needed to remember how to breast feed. She also was about 12 hours late yesterday for her red blood cell transfusion so she ended up sleeping all day without eating. All in all she lost about .1kg over 2 days so the doctors want to put her back on the NG tonight. Brooke is upset over this (even though she knows it is necessary) because feeding is one of the few things that she and Clara have control over.

Finally on the feeding story, Clara is ready to start solid foods. Her throat and mouth are mostly recovered from the last round of chemo so swallowing should be less painful now. We were hoping to do it without the NG tube, but will have to deal with that discomfort still. Hopefully we will have a post soon with her first attempt.

And finally, a picture from right now as I type this out in the atrium of the hospital! Brooke and Debbie (Brooke's mom) are looking at the camera, but Clara is smiling at her daddy!

Changes

It's hard to post after such a long silence.  And I know that there are so so very many of you who are anxiously awaiting a new post.  And from what I hear...you want one with pictures!  We have been taking pictures...knowing that I would one day soon get back onto the computer and be able to update you on what has happened recently.  It's been so long now that I have a hard time knowing what to say or how to introduce it.  And I'm so very tired that it's hard to know what I want to tell you first - much less organize my thoughts into paragraphs comprised of complete, well thought out sentences.  Instead, here you are, getting a very rambling, stream-of-consciousness post about how I don't know what to say.  What you don't see are the extreme pauses as I try to figure out what I am trying to say....

I think that's enough about that.

For now, what you really care about - pictures of Clara (and a few captions to help update you about the significance of each snapshot).

Just a funny moment with her telephone mustachio.

Fell asleep playing with her two favorite toys.

Another angle.

Her favorite sleeping position since she was a newborn with her bunny thumbie. This was the first time that she slept like this since the PICU.

We frequently take walks and show Clara the flowers in the atrium in the center of the hospital.

The halls in the hospital have all sorts of art. This is a multicolored "ribbon" made out of 1000 paper cranes.

A flower from what we call the "Clara" tree given her middle name. It has these big violet flowers that have been blooming since we got here.

Sitting with mommy after having her arm IV disconnected for the first time and wearing a new outfit courtesy of Mimi (Brooke's mom)

Sleeping baby wearing an outfit from dear friends Nick & Katherine Goodman and being protected from grabbing her lines with a burp cloth from Godmother Kelli Davis.

A Little Good News

We got some good news today. The news is that Clara has a lot of 10/10 potential matches from the initial search for a bone marrow match. She also had a lot of 6/6 matches in the cord blood bank. Those would be perfect matches (pending further testing and a more formal search). The doctor involved said that she hadn't seen that many matches on an initial screening before. So this means that they are very confident for a perfect match for Clara and actually think that they will be able to be picky and select for other favorable factors including an apparent preference to the donor being male and young.

I will be posting a more detailed post tomorrow with details from the conversation with the stem cell transplant group. Brooke also assures me that she will soon have some time to make some posts and include some newer pictures. In the meantime, I have included a picture of me taking Clara for a walk in the courtyard in the center of the hospital. She is wearing a dress made for her by one of Brooke's friends (who was a desk assistant in Brooke's dorm when Brooke was senior RA) who has started a company making baby clothes called "Katie Bug Designs".

Sleeping (and lack thereof)

Scenario for you parents: You have finally gotten your baby to fall asleep after a particularly restless night. You crawl into bed completely exhausted. Then, just as you have lost consciousness, someone walks in and wakes up your baby.

This happens every night. The best nights are those where it only happens twice.

The reason is that Clara has to have her vitals taken every four hours. This process includes temp (this is easy), O2/pulse (also pretty easy), and blood pressure... Blood pressure is loud and causes Clara to wake up. This is even more of a problem now that she isn't on any pain/nausea meds that make her sleepy. She is very easily woken by someone prodding at her.

So every four hours at night: 8pm, midnight, 4am - all when Clara should be asleep. Plus 10pm for chemo, 2am blood draw, and other various awakenings.

Saturday night was pretty close to our breaking point. Brooke is nearly crazy with the lack of more than four hours of continuous sleep. So we came up with our plan: we laid out a wonderful argument as to why taking blood pressure in the middle of the night was not helpful. The main point being that they wake her up and she starts to scream which causes wacky blood pressure readings.

So the next morning we start our negotiation process. We asked for more than we thought reasonable so that we could back down to just getting rid of blood pressure readings:

US: "Can we drop the midnight vitals?"
Doc: "Yep"

Wow, that was easy! Why didn't we do this a few weeks ago? On to a better nights sleep!