Today was Clara's first time at the park where were were able to let her loose. She decided what she did and where she played and what she touched. Alan and I weren't so sure we like this new life of getting dirty. Clean girls are much easier to...well, keep clean! But it was fabulous to watch her and I got some great pictures!
"raining" sand
"I'm touching." - what she says whenever she wants me to know that she knows this is something she can touch now but couldn't before.
Concentration as she fills her fists with sand...
...and realizes she can bury her shoe.
"What's this?" after uncovering a large piece of mulch.
The first time she's ever touched a playground step with her hands - to assist her tiny self up a big step.
Hanging from a bar while Daddy spots her.
Again, "I'm touching."
Clanging away on the playground chimes.
First time on the swing without it being thoroughly disinfected beforehand. And she had a significantly greater sense of ease holding on a swinging high from the get-go.
Rosalyn in the courtyard after our arrival home while Clara laid down in the grass and ran around in circles yelling touchdown!
I intended for this story to be included with my picture of Clara on the couch eating her (my) sandwich:
As we were walking up to La Baguette to order lunch, a little girl came running up to Clara. She wrapped her arm around her in a comforting, welcoming embrace and just looked at Clara and then Alan and I. I declared, "Wow, Clara! What a fast friend you have made!"
We stepped closer to the bakery and the little girl stepped away and back towards her mother. Yet, just as quickly, the little girl was running back to Clara's side and grabbed a hold of her free hand mirroring Alan's hold. She just stood there.
What most of you don't know is that Clara has had very few interactions with other children. She has had a couple of very sheltered playdates with boys at our house, who she has learned to dodge as a fist or push seems to be coming her way, or she has seen children from afar. Never has another child approached her and hugged or held her hand.
I looked at the little girl and asked her name. As best I could tell, she said, "Holding." Twice. Clara looked at me and said, "She's holding my hand." The girl touched the top of Clara's hat and then held her hand again. Clara, "She's touching my hat. She's looking for Clara. She's holding my hand."
We all stood there for a full minute or two. Alan and I were concentrating on pretending this was a normal and perfectly safe encounter as our hearts raced with panic. Why wasn't the mother verbally or physically calling the little girl away? What were we supposed to do?
But in that same moment, I felt God's hand. He had sent this little angel of a girl to welcome Clara to the world of touch and safety and friendship in what was a previously forbidden and dangerous world.
The girl rejoined her silently observing mother as quickly as she had approached. And, that was that.
It was a beautiful moment that put a smile on Clara's face, warmth in my heart, and us all one step closer to rejoining normal interaction with the rest of the world.
Trying on Halloween costumes at PotteryBarn Kids, among everything else in the store.
It was a fun day out and about and the girls fell fast asleep in the car
on the way home. We played in the yard with Rosalyn as Clara napped in
the parked car in our driveway for 2 hours. She's playing hard and
loving this new life of adventure!
You are totally right. What was I thinking - only one picture after a 10 month absence?
Let me beg your forgiveness by sharing pictures of Clara at the Stanford
Annual Bone Marrow Transplant Reunion this past weekend. She wasn't
invited last year because she was too recently out of transplant. And
this year she was only 1 of 2 pediatric patients that attended -
although apparently 25 RSVPed yes and there have been 250ish pediatric
transplants at Stanford since 1983.
This is what we call her "stinker face." :-)
She got a glitter tattoo of a sea horse! Oh my gosh its purple and blue!
She was given a choice of a white bow or a pink bow. Apparently, she will actually leave her bows in if she has one of each!
She was thrilled with "her party" and loved being outside. She was still under isolation restrictions but was given special permission to be in attendance without her mask despite the major construction happening at the hospital.
Remember all that concern about her weight gain and if she was eating enough? Ha! Look at that chub, will you?
This week has brought two of the most incredible gifts to our family!
On Tuesday, we were given contact information for Clara's donor and are waiting to hear back from him. The opportunity to get to know Clara's donor has absolutely filled my every thought. His donation was given quite a bit of publicity, so we know a fair bit about him since finding out his name - although we have not yet spoken with him. He is an incredible guy, and I pray our meeting is one that is as joyful for him as it is for us.
Yesterday, we found out that Clara's immune system is completely, fully, totally functional. ALL restrictions have been lifted.
She is no longer under isolation restrictions.
She does not have to wear a mask when going places
We do not have to avoid construction, or someone mowing the lawn.
She doesn't have to take ANY meds anymore.
She can play at the park, or go to a friend's house for a playdate.
She can eat anything she wants. Or as she says, "Can eat cereal....off floor?"
She can touch anything she wants - in fact, she can roll around in a pit of mud if she wants.
She can fly on a plane and meet all her aunts and uncles and cousins and great-grandparents - some of whom have only seen her when she was 5 weeks old, but most of them have actually never met her and none of whom have met Rosalyn.
The list is incredible and most of it is the kind of thing that we all take for granted - yet, they are huge for her. She is adapting quickly and understands much more than we realized about what was "dirty" before but that she is now allowed to do. And the smile on her face while she looks at me and says "I'm touching." (a flower) or "I'm standing in dirt." is just incredible.
I hope I can pick back up with blogging. I always did it out of necessity to keep you all abreast with Clara's treatment. But please know that no news is good news for us. In January 2013, she essentially reaches a milestone that puts relapse and other life events completely out of the picture. We will consider her cured although that word can't be used until January 2016.
There is so much I wish I could articulate. There just are no words for the joy we are feeling. Instead, I'll offer you this:
We thought it was about time to announce the new baby! We've been a little sleep deprived lately but will probably make a more detailed post shortly. Here she is: Rosalyn Elise weighing in at 7lbs 13oz and 20 inches long.
It has been way too long since I have posted, and I am so happy to say it is because life is so very normal now. I have started emailing Clara at an email address Alan set up for her a while back. I am marking milestones there now, telling her little stories about what she did that day or week, etc. It is my way of keeping a journal now, and it is nice to catalog the nuances of the day without sharing them with the public world.
Alan and I have discussed taking the blog down at some point and sharing it with her one day when she's older - IF she is interested. But for now, I still want to share big milestones with you in her medical developments and big life experiences/moments.
The biggest, most wonderful things have happened lately.
Clara is still having some mild Graft vs Host Disease that look like dry patches on skin and scaly, dry skin on her scalp. The doctors have decided they want that to completely go away before we taper her Prograf. When they first told us this a couple of visits ago (~7 weeks ago), it was really disheartening. We were hoping Clara would be without an NG for Thanksgiving and the baby's arrival. But the Doctor explained a little bit more that if we moved to fast, we would end up taking more steps back, and chronic GvHD would result in her having to take all of these multiple meds for much longer. Clara's GvHD is so minor that they thought we were probably looking at 2-3 months of staying where we are with her meds. They also told us that she is actually doing relatively well considering her high risk for GvHD - most kids are still quite immunosuppressed at this time with worse GvHD symptoms. That discussion helped us realize that 2-3 more months of an NG wasn't really that bad compared to what could end up being another year.
At our most recent visit, last Monday, we were on a high! We had discovered Saturday morning that Clara's NG had fallen out overnight. We were torn about putting it back in because she fell back asleep in our bed and we just couldn't bring ourselves to wake her up to torture her by replacing it. We debated about adjusting her meds schedule a bit so that she could sleep a little bit longer. When she did wake up, Alan decided (without telling me) that he would see if she would take her most critical med (the Prograf) by mouth. I thought he had just gone to change her diaper until he announced she had taken it! She didn't even fuss! So we decided we'd see if she'd take the rest of them and just replace the tube later if she didn't comply. Folks, not only did she take her meds, but by Saturday night, she nodded "yes" when I said it was time for meds and crawled right into Alan's lap to take them. So, our visit to the hospital on Monday - we were beaming with pride and loving seeing Clara's whole face! It no longer mattered that she was going to be on Prograf and all these other PO meds for a couple more months because Clara was happy to take them and, we didn't need the NG!
It was actually our first transitional visit because Clara's Oncology fellow saw her instead of the Bone Marrow Transplant nurse practitioner. After checking Clara physically and looking at her lab results, the fellow consulting the BMT attending to ask if Clara could stop taking one of the meds. The attending admitted there wasn't a strong argument for keeping it on her list of meds as it is normally only given for the first 100 days after transplant. This was the most incredible news! I was almost crying. It meant that instead of Clara having to take 9 meds spaced across 5 times throughout the day, she only has to take 6 meds split into 2 times a day. What an incredible gift to Clara! She was so compliant and now she was going to have to endure so much less! Plus, the med they were taking off (valacyclovir) was the largest of her meds; so, this was effectively reducing her total med volume by 2/3rds!
It has now been almost 9 months since Clara's transplant and almost 8 since she was discharged. Because the doctor's were lifting some of the restrictions on her isolation and taking away some of the meds, I dared to ask if she could go to the hospital for their annual Trick or Treat Trail throughout the hospital and if it was safe for her to go without her mask. The answer was yes! I was so excited for her to be able to enjoy it this year as she was too sick to even wear a costume of any kind last year. I wanted to show her off to the nurses who haven't seen her since she was 10 months old and have never seen her without an NG tube. She loves other kids and calls them "baby!" when she sees them. I just knew she would love all the excitement. We got to see several of our very favorite nurses, most of her doctors, her physical therapist, a fellow patient that is 4 months younger than Clara and diagnosed with leukemia at 2 months of age, lots of kids, and there was so much going on! All the units have tables set out in the hall of every floor and even the maintenance department sets up a haunted house. You should see the costumes the staff wear and even the parents are dressed up. It was a lot of commotion and a lot of fun to be a part of. It was also really scary for Alan and I as we have kept her completely away from ANYTHING REMOTELY crowded for almost her entire life. But, man, did she have fun. Alan put her down for a moment when two of the nurses had come out to see her. She wouldn't stop spinning. She got so many "oh how cute!"s from strangers. We got a couple of pictures, but this video is the best. I intended to take more pictures but keeping her safe and talking with whomever had come out of the unit to see her was quite exhausting. We stayed for about an hour and would have loved to have let her completely run around. The only time we really let her go free was when she decided to run down the hallway which happened to lead out to the car. It was perfect timing and her nurse practitioner and fellow were both running down the hall with her before we all said goodbye. I was so proud. I think we will put the costume on again this evening just because she seems to enjoy it so much.
