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!
Throwing toys as far as she possibly can...by walking them as far as she can see before dropping them.
Likes to sing and dance. Favorite songs include: the ABCs, Baba Yetu, and The Itsy Bitsy Spider. Her dancing involves alternating between swaying side to side while lifting each foot underneath to rhythmically crouching. It can include rapid stomping/running in place.
If we say, "See ya later!" as she is walking out of the room or around a corner, she will walk back into our line of site and wave with a big smile.
She is now has her first attachment item(s). As of my birthday, August 9th, she began greeting us after periods of sleep with her bunny thumbie from Potterybarn that she has always had in her crib. This past week, her "Tutu" doll from my cousin (also a crib companion) has joined the ranks with Bunny. She must have both when entering, leaving or getting ready for bed. They are also both great when she needs consoling. We will be taking them to the hospital next week so that they are there to comfort her (not that she really needs it) when coming out of anesthesia after having her Hickman removed.
She likes to put her head on the floor and walk around herself. Just sort of spinning on her head.
She will often play on the floor and then just lie flat on her stomach for a few short seconds to rest. There is a home video of me doing this at 1 year. It was always a dream of Alan's that our child would exhibit such cuteness mid-play.
She bit me the other day and after my outburst showed her first realization that she had done something wrong. She then pulled my shirt back every way she knew how to look at the skin she had biten that I had initially revealed to check for broken skin. A little bit later, she put her teeth on me again 4 times. Each time, holding back a bite as I told her not to bite.
She sticks her finger in her mouth when she sees someone sleeping in a book or when reading "and the quite old Lady who is whispering 'hush'" in Goodnight Moon before bed.
She has begun confirming "are you hungry?" or "It's time for night-night." by walking to me and waving bye-bye to Daddy or the room.
Bedtime routine has now moved from the living room into her now completed nursery. We dress her and do her final meds and heparin flushing of her Hickman on her dresser/changer. We all read Goodnight Moon together. She gives me snuggles as we turn out the light. I say "Go see Daddy" as I hand her to him. She completely falls back and to her right anticipating the crook of his arm. Then immediately cranes her head back and to the left anticipating my kiss on her left temple as I say "Mommy loves you sweet girl. It's time for night-night. I'll see you in the morning." Alan says she has even begun moving into the position he usually shifts to just before placing her in bed - before he even gets to the second lullaby.
She loves the bathtub. Leave the door open and she will bee-line straight to the tubside and declare, "Weay!" for wet/water. We can't wait til we can actually put her in that bathtub on Tuesday next week.
She loves Wheel of Fortune and will clap before the audience when someone solves a puzzle and will repeat the letters called by yelling "A!" for every letter. She will also clap when the Jeopardy Daily Double pops up...before the audience claps. She will also clap just after or as a song is finished playing when we turn on music in the house.
Clara's current "words":
Daddy
Baby
It's ready!
It's a tent!
Hi
Bye
All done
Mmmm (when anticipating food that she wants)
Coffee
Uh-oh
Water
Shhh
Cereal
Banana
Yay
Words for which Clara has representative sounds/signs:
Clara's Hickman will be removed on Tuesday, August 30th. 1 year to the day after her first central line was placed and 1 day less than a year before her first dose of chemo that sent her to the PICU. (See the blog post from the very beginning.)
In other good news, her skin looks good today despite her taper of MMF yesterday. Hoping that continues. I also got an email from her nurse practitioner to wean her sodium bicarbonate a bit more. We are now only giving 1ml 1x/day. That's a third of her original dose. Hope that means we may be rid of it next week and then will wean something else!
I signed the consent form for Clara's Hickman to be surgically removed. We should hear from General Surgery soon regarding when she is scheduled and are hoping it will be within the next couple of weeks.
Her White Blood Cell count continues to be steady. She is at 4.7. up from 4.6 last week and in the 2.X range the 3 weeks previous. Associated with this increase in her labs is her ANC @ 1500 and her lymphocytes which are now in the 2,500 range. Lymphocytes are the sophisticated stuff that respond to things like immunizations! :-) We like to see that number so close to the normal range (which I hear begins at 3,000).
Her chemistry was all in the normal range and Dr. Kharbanda commented on how great she looked. Her kidneys have had slightly elevated numbers for a long time. Nothing they were worried about but were just watching. Those numbers are now all in the normal range and her low end of normal blood pressure is an example of that. She is still being supported by high blood pressure meds, but we hope to see those go away soon as well.
Her Prograf level was a little bit on the low side but they let us taper her MMF anyway. She is now getting the lowest amount of MMF ever! Hopefully, her skin will continue to look good. We discovered in this past week that the red, raw, itchy, dry skin she was having on her face was actually a result of me putting hydrocortisone on her face. The stuff I was trying to use to heal her face was actually making it worse! We switched to Aveeno lotion only, and she looks beautiful!
Her weight was up from 7.6kg to 7.7kg! She had a really skinny point this past week and I added "Duocal" to her oatmeal one morning and to her pasta one afternoon. It is basically just carbs and fat. But she ate like a champ the next day so I hadn't given her anymore. Alan and I both noticed the pudge come back in her hands and feet and forearms and cheeks on Sunday, so I was glad the scale confirmed she was doing okay!
The ONLY thing that didn't go perfectly today was that her prograf level being on the low side meant they did not decide to change our clinic visit frequency. If it had been in the target range, we were going to be granted visits only once every TWO WEEKS! I don't mind once a week so I wasn't too disheartened by this. All the other progress was so fabulous!
On a really fun note: Clara repeated the words "red" and "blue" to me today when I asked her what colors her hospital armbands were. If two hospital staff hadn't been there to confirm "it was clear as day," I would have thought I had made it up. She still doesn't say "Mama" but she will say "reyh" and "beu"? We were not able to get her to do it again this evening for Alan.
Also fun: she is officially walking. She spent most of the day (after our full morning at the hospital) walking in circles around the couch. Over and Over and Over and Over again. Or walking around the living room - switching direction randomly just for the heck of doing it. It was fabulous to watch her just smile as she would accomplish maneuvering around the room, or stepping on a torn out piece of magazine on purpose and then stepping off of it as she continued on her quest to walk. She was a bit pissed at us at bedtime because she had been having so much fun going from our room to hers down our miniature "hallway" and opening and closing each door as she would walk in and then out.
Clara's bone marrow from 2 weeks ago has come back, and the results are negative for leukemia! Of course, this is fabulous news, but it was also news we have come to expect. Perhaps we take it for granted, but we are truly enjoying looking forward - not living in fear.
With a negative MRD (minimal residual disease) at the 6 month mark after transplant, the doctors can feel assured that Clara will not need further IV therapy (big stuff like chemo). So then comes the big question from Alan and I: Can we remove the Hickman central IV line? Answer: YES! The doctor is filing the paperwork today so that the schedulers can get her an appointment in the OR. We haven't heard a timeframe for when this will be scheduled but we are hoping for this week or the next.
We shared with you that Clara's white blood cell count had dropped just before my parents' visit in July, but I don't think that I mentioned it happened again. We've been watching it for a couple of weeks and it is finally back up. She's had a runny nose for a couple of weeks, too. So, knowing that her white count is back up even though the runny nose continues makes me feel a little bit more comfortable. Perhaps the runny nose really is just seasonal allergies- poor kiddo.
So, now, the only "struggle" left is that we don't need an NG tube for feedings! Clara has been eating like a champ for the past 2 weeks and is increasing her solid and fluid intake daily. We are sooo proud of her. She was 7.9kg before the NG tube wean, dropped to 7.55kg, was 7.75kg on Tuesday last week and then astonishingly dropped to 7.6kg today (she looks and feels so much bigger!). So why is this a struggle? She is going to be getting a significant number of meds through the end of the year (although fewer and fewer as time goes on),so we now have to figure out how to get her to take her meds by mouth. It has been a benefit of the NG tube and with the number of meds she is taking right now it has been a really good reason to leave the tube in. But we are really ready to be done with it. Making the decision to torture her with 22 meds over the course of a day is a difficult one to make. And I would think that if she had a choice between meds and the tube that she would pick the meds...I think. We are going to try a myriad of ways to give her her meds and will keep you updated on that front. Pray she really likes the taste of them! Some of them smell good, but whether or not she will consistently take those good tasting ones still remains to be seen.
