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.
It's been two weeks since our last appointment. Clara had her Hickman taken out, and we have loved watching her flourish. With that thing gone, she has only changed the slightest bit in her behaviors as a result - like sleeping on her tummy now without having to tuck her knees underneath her to protect herself from the clamps cutting into her belly. Really, she doesn't have a clue. But we would look at her and just FEEL that she was different. We've loved giving her a bath every night, and she LOVES taking them. It is always right after dinner and Daddy wipes the majority of dinner off her hands and face while I run the water. She comes tearing around the corner and immediately starts counting 1, 2, 3...weeeee! in anticipation of being put in. I have to remind her that we have to take of her clothes and diaper. She is more than happy to assist by stepping out of her pant legs and pulling her shirt off (recent developments in her abilities).
Yesterday, we took her into the hospital for her normal labs and check of her skin. We got lots of GREAT news.
Her weight is up from 7.75kg to 7.9.
Her length is - longer. Somewhere around 72-75cm. She hates this part and is quite a squirmer.
Her CBC is finally back into the "stellar" category. Her white count is up from 4.2 to 6.4, and her ANC is up from 1400 to 1900.
We asked the nurse practitioner to give us an updated projection of her treatment through the end of the year as our insurance is changing and at this point in time will not cover her care at Stanford past the end of the year. We believe there will be new options available by the end of October so aren't panicking yet. However, I wanted to know what the plans were for her immuno-suppressants and immunizations. The nurse practitioner said she would have a conversation with the doctors and let me know. Answer:
No. More. MMF!
This cuts out an entire month of my anticipated treatment plan for Clara. In fact, if everything continues the way we think it will, Clara will be done with her immuno-suppressants and all of her other meds the day after the baby is born. In 10 weeks, we are expecting a baby and a Clara without and NG or meds. INCREDIBLE!!!
We are planning to go into the hospital for an infusion of IVIG as Clara has remained borderline low for 2 weeks. The doctors want to move us to having appointments every 3 or 4 weeks and so have decided they might as well just give her an IVIG dose so that they don't have to keep bringing us in weekly to see if it does or doesn't dip below her transfusion threshold.
The Boyle household is awfully happy. Without MMF, Alan and I even got to go to bed together for the first time in as long as we can remember. And it was the first time Alan has been to bed before midnight since before she was diagnosed. Alan's parents have been in town this week, and Clara has thoroughly enjoyed tossing Daddy and I off to the side and playing with her newest favorite play things! :-)
Alan took Clara for a walk last Sunday and I drove to meet them at a county park. Clara is walking well enough now that we let her out of her stroller and let her walk around on a couple of cemented areas. Fortunately, she was excited enough by the fact that she could just walk and walk and walk in this expansive area, that she didn't start bending over to touch things (which is a no-no for her) until after we had been there for a while. Of course, most of the pictures are of her from behind. She was like a little Energizer Bunny. Going and going and going.
Look! I have my shoes on and I can walk OUTSIDE!
No-No, Clara. Stay out of the dirt!
See y'all later!
No, that is not a basketball in Mommy's shirt...that's my baby sister!
So that we will never forget and so that you all can see how tolerant and amazing our daughter is, I give you: Clara's last dressing change of her Hickman central IV line.
Looking a bit beaten up and worse for wear but VERY excited about this day! We were waiting for the Nurse Practitioner to come take a look at Clara's skin for her weekly appointment before heading downstairs to wait in yet another exam room in preparation for her Hickman removal procedure. It was a much more fun day for all involved because Daddy was with us! It made it much easier on Mommy and much more fun for Clara since she wasn't allowed to eat or drink until after her 12 noon procedure.
This is what Clara's Hickman looks like. The catheter (IV line) is actually in her heart and comes out of her subclavian artery in her neck and then in is tunneled just under the skin. It comes out on her chest just above her nipple where you see a little bluish circle called a biopatch with writing on it. The biopatch helps protect the open hole in her chest where the tube comes out. The biopatch and part of the tube are then covered by a square, transparent, shiny adhesive dressing. We then loop the catheter (because it is really too long for her little body) right back on top of the dressing and hold it in place there with the long piece of white foam tape. You can then see it runs down her torso between her nipples before it splits into 2 lines - one smaller and one larger in volume. At the point that it splits, we snap the lines into a stat-lock which has the butterfly-like wings coming off of it. This helps secure the line to her body and takes any impact or pulling that might happen on the line without pulling the IV out of her body. The two pieces hanging at the end have little blue caps that allow you to screw on syringes for infusion or for drawing blood. The blue caps also act as a mechanism for preventing blood to flow out. The blue caps had to be changed out for new ones twice a week. And just in case of possible failure of the blue caps, there are two white clamps just before the blue caps that clamp the line shut so that blood won't flow out. All of this has been attached to her torso since November of last year. Since you don't want water to creep just underneath the transparent dressing, we would have to cover ALL of this with GLAD Press and Seal Wrap if we wanted to bathe her. That was quite a hassle, and although it was an incredible discovery to learn that Press and Seal clings to skin so well, it was still a dangerous undertaking and a bit difficult on a moving squirming baby - even if she was fairly still. So glad to see this thing go now that it is really no longer needed. It was just in the way, a source of potential infection, prevented her from having a real bath, was no longer drawing blood dependably for her lab appointments, and required daily "flushing" of the line with heparin to prevent blood from clotting inside the catheter line. As of September 1, 2011 - Bye Bye Hickman!
Clara's procedure went well as far as we know. We did not get to speak with the surgeon after her procedure. In fact, when they called us to Recovery, we found Clara lying on her bed with one hand behind her head (the other still had an IV in the inner elbow) watching fish in an aquarium on TV while listening to classical music. The nurse had turned on exactly what she would have asked for. She didn't have a pacifier in her mouth or her bunny thumbie or Tutu snuggled next to her. She was completely chill and hardly even showed excitement when she saw Alan and I walking up. By the time I got to her bedside, she looked at me and made her fish mouth to tell me she was watching the fishes! I was astonished and exclaimed, "Fish! That's right, Bug! You are watching the fish!" I was quite near tears. At that moment, the nurse began removing Clara's IV. Clara tightened her eyes and turned her head towards me with a few whimpers and fusses - she didn't move otherwise. I was so impressed that she seemed to know it would be short-lived pain as the tape came off and a new pressure bandage applied.
I then realized, the only thing she would still be hooked up to at that point was the heart monitor, a blood pressure cuff on one calf, and an oxygen saturation sticker on her foot. I looked at the nurse to confirm she was okay with me picking her up and got a yes. She was unhooked from everything within a few seconds and all we were waiting for was a written note from a Dr. to let Clara go home. It was so amazing to know she was free. Clara took a graham cracker and began hungrily munching as we dressed her to go home.
We were required to wait 48 hours before giving Clara a tub bath which meant Saturday, September 3rd was Clara's first bath since she was 4 months old!
We cheated a little on Friday by putting the trusted GLAD Press and Seal over the teeny, tiny boo-boo on her chest. It completely sealed it from moisture and allowed Clara to get in the shower with Daddy! Alan's parents bathed him by putting him in the shower with his Dad, and it was something Alan always wanted to do with Clara. She has been standing tub side with great interest for about a month now watching the water flow from the faucet and shower head, and Alan would always create a little stream of water for her to touch with her outreached hand. She even seemed excited by any splashes she would get on her face. It was such a great treat to let her be able to get in WITH Daddy on Friday morning. Plus, we knew it would be a good transition just in case she had any apprehension for the tub bath on Saturday.
Saturday's bath with her brand new bath toys (and there are more coming in the mail) was so much fun! Alan demonstrated splashing once, and then we couldn't get her to stop. She loves the ducky squirting water on her torso and figured out how to stick the letters and numbers on the side of the tub by simple observation of us spelling her name on the side. It is also great fun to submerge the duck, frog, and cup.
Tonight's bath was initiated by Clara. She kept declaring bath as best she knew how "Da!" and nodding emphatically when I asked if she wanted to take a bath. I couldn't run the water fast enough and she was trying so hard to climb into the bathtub to join me as I got in. The best part of the bath tonight was when we discovered she LOVES to have water poured over her head and face. We had taken her NG out earlier today because we needed to switch to the other side. She was completely tube free and LOVING being in the water. "Gihn! Gihn!" She would say as soon as the water stopped pouring. She would slightly duck her head, close her eyes, open her mouth as wide as possible with her tongue sticking out and as big a smile as one can manage with your mouth wide open. It was so sad to end it after about half an hour as it got late and the water got cold. She was NOT okay with bath time being over, but we had to wind things down and allot time for a new NG placement, plus recovery time after that kind of trauma.
She handled it like a champ, and Alan and I discussed what a big girl she is. She is so used to the NG now that once it is in place, she completely forgets about it. We loved seeing her face for a few hours today and I am kicking myself for not having the camera capture the whole day and the bathtime. I was in the tub with her tonight and didn't even think about having Alan grab the camera. Hopefully only 3 more months and we will be done with ALL her tubes. Until then, we are thankful the NG can be there to make taking so many meds almost worry free.
Life is full of so many moments of progress and continual steps towards normalcy. We got the good news that because Clara's skin has looked so good for the past 3 weeks that we only have to go in for lab and clinic appointments every 2 weeks! That means Clara will only have to get poked in her arm every other week, it will be easier for this very pregnant lady, and Alan will only have to take off a morning every 2 weeks to help me get her to and through her appointments.
Thank you again to everyone. Your support during all of this has meant so much to us. We still struggle with frustrations and exhaustion and some depression as we continue with Clara's recovery - but we are in such a wonderful place right now and your support has helped carry us to where we are and get through what we have left over the next few months. I think we can handle a few more months of an NG tube....And then life should be completely normal as we welcome Baby Girl #2 to the family and enjoy an incredible Holiday Season as a happy, healthy family!
