This post was started Wednesday evening:
We went into the hospital today for Clara's weekly lab appointment to check all her blood levels and electrolytes (these have been stable for a couple of months now) and also had her monthly IVIG infusion (immunoglobulin from the blood plasma of 1,000 people to provide her with the antibodies she isn't currently producing).
First, the bumps on her face and head finally have them concerned as they have spread from mainly being in her hair and hairline to looking like cradlecap throughout the top of her head, and dry, red, compact, itchy bumps (and sometimes almost like pimples or chicken pox on her nose) on her forehead, eyebrows, nose, upper lip and chin. It took two nurse practitioners and finally the attending to decide we should hold off on the taper of her MMF (which is scheduled for this coming Monday) until they see her next week. The attending that saw her today also saw her last week and was concerned that it was significantly more prominent/obvious from looking at her even across the room. I have been putting hydro-cortisone on her face to help hydrate if it is eczema or act as a steriod if it is truly the GVHD that has been suspected. What they saw yesterday was actually significantly better than about 5 days ago when I started putting the cream on her 2-3x/day. They want me to continue with the cream.
Second, we had a long discussion about how they made the decision to allow her to go to outpatient OT and a day trip to Napa/Sonoma (or anywhere else for that matter). They described her current immune status. Basically, once she passed Day +100, she passed the point at which she was at the greatest risk of life-threatening infection. This was great news to hear. We still have to be very cautious about all the things that they have talked about before. Those things aren't any less scary. She is still severely immuno-suppressed. However, they don't want her to live in a bubble. So, while she is still under isolation restrictions they are just a little on the more relaxed side of the continuum.
The hospital always called me later in the day regarding the results of her blood work and to clarify that we do not need to make any drug dose changes and to see if we have any questions. Her numbers have all been very solid and steady for a long while yet and her CBC has been rock solid as they say (her red cells, white cells and platelets).
Unfortunately, today they had bad news. Her white cell count is 2.5 down from 5.1 last week. Her ANC (absolute neutrophil count) is 800; down from ~3200. If you think back to 6 months ago, Clara had to have a 500 for 3 consecutive days to be allowed out of the hospital. In otherwords, she is at great risk. If she doesn't have neutrophils, she can't fight infection.
Most likely, she has an infection of some kind. This is why only her white count has decrease. Her red cells are still fine and her platelets have dipped from ~350 to 270. We have been assured that while that looks like a dip to us (we haven't seen her below 300 since her marrow was first producing platelets) 270 is completely within the realm of normal, healthy, platelet numbers.
Also possible is the leukemia is back. The nurse who called me with all of this information didn't really want to talk about that side of things as she is superstitious. I had to press her to explain somethings and that if she didn't want to talk about it for fear of "causing" Clara to relapse by speaking of it, she could forward me to an attending. She did discuss what I needed to know from the biology side and we are just hopeful that they are right - this is just an infection.
The fear is that just an infection can kill her. If she runs out of neutrophils to fight whatever this is, and we go to the hospital to get antibiotics and antifungals and such and it doesn't make her better, she could die.
SO, here is what we understand:
1) The IVIG that she got yesterday could actually be enough to help her fight whatever this is. Thank goodness it is a fresh dose of antibodies!
2) We are looking for actual signs of illness (fever, runny nose, cough, etc) before we have to take her to the hospital for further workup/treatment.
3) They are letting us bring her into the hospital Friday for follow up lab work only - just to see if her White Count and ANC have continued to decline or recover.
4) She is still allowed to do all the things they told us we could (eat outside at restaurants, go on day trips, etc). We just have to pack a thermometer to check for fever if we suspect one.
Here's the good news:
1) She doesn't look sick at all. In fact, last night she was so full of energy that I went to bed on a high because of how happy she was. She even decided she was so happy and healthy that she was walking between Alan and I as we sat on the floor. She took her first couple of steps on her own (kind of a falling couple of steps as she went from my arms to Alan's) and learned how to walk in a U-turn pattern as she would get to me or to Alan. She would say "gin" "gin" (again) each time she would reach one of us and as she would turn around to walk to the other.
2) This morning (Thursday) she looks fantastic. Her bumps are about 70% improved. Some are gone, others are less inflamed, she doesn't look nearly as dry. And she still obviously feels well.
3) We have NO intention of taking her out anywhere for fear of risking her getting sick on top of whatever she has. We will wait til we get the results from the lab work tomorrow. Perhaps the illness was actually her bumps being viral after all. And maybe the IVIG fixed it?
We will see. Stay tuned and thank you for your continued prayers!
Thursday, June 30, 2011
Sunday, June 26, 2011
Trip to San Francisco!
We took Clara on her first adventure more than 20 minutes away from the hospital since August last year!!! We went to the Golden Gate Park where she got to see LOTS of cars, people and puppy dogs. The day ended great with her drinking chocolate shake from a straw like a PRO! And the ranch dressing on the sweet potato fries wasn't too bad either!
Didn't take a single picture...shame on us. We will get better at this adventuring out of the house soon.
Didn't take a single picture...shame on us. We will get better at this adventuring out of the house soon.
Wednesday, June 22, 2011
Clara has a boyfriend!
Our old college buddy, Matthew Bennett, and his newlywed wife, Christene, came for a visit. Clara fell in love. We had a hard time telling her he is now taken.
Monday, June 20, 2011
Big news! The "end" is in sight!
Clara and I went into the hospital today for her weekly checkup. I have been asking about several things for a while now and last week made sure to emphasize a few so that the issues would be discussed by the team, decided, and that I would finally get answers by today. I have those answers!
(Question #2)I also asked for permission to take Clara more than 20 minutes away from the hospital - for a day trip to Napa when my parents come for a visit in early July. The answer was yes! While she is still highly at risk for infection and illness, I am assuming this means they are relaxing the isolation restrictions. I was too excited to question whether or not this means we could also run errands (grocery store) or go into a restaurant etc because I am pretty sure that is all still off limits. I think they just know she is strong enough and that we are still mindful and cautious about what she is exposed to that they trust we won't go crazy. I'll have to ask for more details on that next week.
(Question #3) Clara is also finally allowed to go to OT. She has been making GREAT progress with what she and I are doing on our own. I can't wait to see what she does with some coaching from the feeding experts! Perhaps by the time she is needing less oral meds, we can pull the tube because she will be eating so well on her own!
- Clara's skin continues to get descriptors of "pristine" and "great." She continues to have bumps on her scalp, in her hairline, on her forehead, and recently in her eyebrows and on her eyelids. It has been responding well to lotion and so eczema is not out of the question. However, I think they really don't know what these bumps are, but truly don't think it is GvHD. I still have my concerns.
- She will be done with tapering 1 of her 2 immuno-suppressants (MMF) no later than August 28th but possibly as early as August 14th assuming she continues to do well and not show signs of GvHD.
- Once we are done with the MMF, we will begin tapering the 2nd immuno-suppressant (Prograf).
- The Prograf will be tapered by 10% each week which means we can expect to be done with all immuno-suppressant drugs around the end of October/beginning of November!
- Several things "happen" once we begin tapering the Prograf.
- We will no longer have to go into the hospital weekly (possibly only 1x/month).
- Her central line (this was Question # 1) can come out because we will be drawing labs so much less frequently. This is a procedure done under general anesthesia. So, they will draw a marrow sample at the same time to check for leukemia and for how much of her marrow is hers versus the donor's cells.
- She will require fewer electrolyte supplements and therefore fewer meds to give by mouth.
(Question #2)I also asked for permission to take Clara more than 20 minutes away from the hospital - for a day trip to Napa when my parents come for a visit in early July. The answer was yes! While she is still highly at risk for infection and illness, I am assuming this means they are relaxing the isolation restrictions. I was too excited to question whether or not this means we could also run errands (grocery store) or go into a restaurant etc because I am pretty sure that is all still off limits. I think they just know she is strong enough and that we are still mindful and cautious about what she is exposed to that they trust we won't go crazy. I'll have to ask for more details on that next week.
(Question #3) Clara is also finally allowed to go to OT. She has been making GREAT progress with what she and I are doing on our own. I can't wait to see what she does with some coaching from the feeding experts! Perhaps by the time she is needing less oral meds, we can pull the tube because she will be eating so well on her own!
Wednesday, June 15, 2011
NG tube weaning
I hope you all are enjoying actually hearing from us again. It has been fun having the time to blog here and there. I realized I had been avoiding blogging because I knew you all would like to see pictures and videos. The reality is: I haven't wanted to take pictures.
It was depressing for a long while, and still is sometimes, that Clara still has a tube taped to her face. There is so much "normal" to report in her development. But if I took pictures, the tape that I know how to look past most of the time stands out horribly and blocks half of the cute face that I see. When you want to brag about your daughter, and then are literally faced with the image of what she is still struggling with, it is hard. I know you all would say we don't care. And while I was proud of her, I was frustrated by how little progress I had made with her and her eating.
That has changed significantly over the past two weeks. Clara swallowed food for the first time two Thursdays ago. I had decided that, since we don't see OT and they keep telling me to just keep exposing her to new flavors and textures, I needed to actually get back to what many people know to be my MO and begin researching for myself to determine what steps needed to be taken to ensure progress.
I made several determinations. She wasn't as close to eating on her own as I thought (which relieved a large amount of pressure associated with "she's so close"). She was getting to a higher likelihood of having difficulty digesting table food the longer she stayed on a formula-only diet. She was not struggling with any of the aversions to food nor did I have concerns with her swallowing ability (at least not nearly as severe as what was described in what I read). The biggest piece: she needed to be in her highchair for every feeding (within reason) with food and/or eating utensils in front of her so that she would begin associating those things with fullness.
It began working. She has had some staple favorite foods for a while that she had seen enough times and that she had enjoyed gumming on. I continued to give them to her and add a new something here or there as she showed interest in what I was eating or simply to offer her diversity through foods that were similar in some ways to what she was familiar and comfortable with. I showed her how to paint with her food on her tray and then lick her fingers (she trusts her own finger more than a spoon coming at her face). We "painted" her fingers or a toy with a new food or new taste. We would gasp with surprise and then she would lick it.
In the past two weeks, I have continued offering her new foods and am having to spend less time praising her and actively encouraging her throughout every step of the meal. She may tire of a particular food and I will have to bring out another but she plays with food for a full 20-45 minutes 3-5 times a day. She gets excited about being put in her high chair. She says "na" if I offer her a banana. She loves the sight of an eggo waffle headed to the toaster. She can sign "all done." She loves strong flavors and doesn't like mealy textures like applesauce or oatmeal or too many dry crumbs in her mouth at once.
All in all, she is liking food. Slowly she is learning to swallow the food. Hopefully within a couple of weeks, she will be consistently eating and drinking enough that I am just providing supplemental formula based on what she didn't eat but was required calorie-wise for that feeding.
She is getting a little bit less camera shy and beginning to put on smiles for me instead of going stoic. Perhaps I will be able to pull out the video camera soon without her seeing and stopping whatever activity I was trying to capture. It is fun to share her with all of you and I look forward to doing so more and more.
It was depressing for a long while, and still is sometimes, that Clara still has a tube taped to her face. There is so much "normal" to report in her development. But if I took pictures, the tape that I know how to look past most of the time stands out horribly and blocks half of the cute face that I see. When you want to brag about your daughter, and then are literally faced with the image of what she is still struggling with, it is hard. I know you all would say we don't care. And while I was proud of her, I was frustrated by how little progress I had made with her and her eating.
That has changed significantly over the past two weeks. Clara swallowed food for the first time two Thursdays ago. I had decided that, since we don't see OT and they keep telling me to just keep exposing her to new flavors and textures, I needed to actually get back to what many people know to be my MO and begin researching for myself to determine what steps needed to be taken to ensure progress.
I made several determinations. She wasn't as close to eating on her own as I thought (which relieved a large amount of pressure associated with "she's so close"). She was getting to a higher likelihood of having difficulty digesting table food the longer she stayed on a formula-only diet. She was not struggling with any of the aversions to food nor did I have concerns with her swallowing ability (at least not nearly as severe as what was described in what I read). The biggest piece: she needed to be in her highchair for every feeding (within reason) with food and/or eating utensils in front of her so that she would begin associating those things with fullness.
It began working. She has had some staple favorite foods for a while that she had seen enough times and that she had enjoyed gumming on. I continued to give them to her and add a new something here or there as she showed interest in what I was eating or simply to offer her diversity through foods that were similar in some ways to what she was familiar and comfortable with. I showed her how to paint with her food on her tray and then lick her fingers (she trusts her own finger more than a spoon coming at her face). We "painted" her fingers or a toy with a new food or new taste. We would gasp with surprise and then she would lick it.
In the past two weeks, I have continued offering her new foods and am having to spend less time praising her and actively encouraging her throughout every step of the meal. She may tire of a particular food and I will have to bring out another but she plays with food for a full 20-45 minutes 3-5 times a day. She gets excited about being put in her high chair. She says "na" if I offer her a banana. She loves the sight of an eggo waffle headed to the toaster. She can sign "all done." She loves strong flavors and doesn't like mealy textures like applesauce or oatmeal or too many dry crumbs in her mouth at once.
All in all, she is liking food. Slowly she is learning to swallow the food. Hopefully within a couple of weeks, she will be consistently eating and drinking enough that I am just providing supplemental formula based on what she didn't eat but was required calorie-wise for that feeding.
She is getting a little bit less camera shy and beginning to put on smiles for me instead of going stoic. Perhaps I will be able to pull out the video camera soon without her seeing and stopping whatever activity I was trying to capture. It is fun to share her with all of you and I look forward to doing so more and more.
Tuesday, June 14, 2011
Monday, June 13, 2011
Eating progresses to swallowing solids!
After a frustrating visit to the hospital this morning (took 2x too long), we've had a great day.
Clara only started swallowing food last week and only very thin liquids. Today, she started biting off pieces of her waffle for the first time, working on the pieces with her tongue and roof of her mouth and then spitting them out, to actually swallowing the pieces. She actively "ate" for 30 minutes with little encouragement required.
She has learned to hand me the food instead of throwing it on the floor when she is done (after i remind her). I then ask if she's all done, and she gives me the sign for all done (like when the umpire signals 'safe'). I taught this to her late last week. It still shocks me that she does it. Her hands cross over each other and fly out and up. So cute.
She then went right to sleep for a nap! Such a good day.
Sunday, June 12, 2011
When Playing by Herself
We were recently bragging on Facebook about being able to watch Clara play independently in her room via a surveillance camera we set up in her room. We can stream the feed to the computer, and I can watch her while getting other things done around the house.
Alan's mom asked what she does while she's playing, and this is what I said:
She loves her books. Any books. She picks them up is simply because she loves to turn the pages and see what's in there. Still isn't very delicate with paper pages, and so her Puppies and Kittens Are Like That books are very much "loved" now.
When it comes to her toys: she has learned to roll objects, "throw" them, hold two at a time in one hand, likes to put them on her head or have them put on her head, and she likes to chase them. So she will push it forward a bit and crawl after it. This makes cylindrical and ball type objects particular favorites but she will throw or push/roll anything to go after it.
Alan's mom asked what she does while she's playing, and this is what I said:
She loves her books. Any books. She picks them up is simply because she loves to turn the pages and see what's in there. Still isn't very delicate with paper pages, and so her Puppies and Kittens Are Like That books are very much "loved" now.
When it comes to her toys: she has learned to roll objects, "throw" them, hold two at a time in one hand, likes to put them on her head or have them put on her head, and she likes to chase them. So she will push it forward a bit and crawl after it. This makes cylindrical and ball type objects particular favorites but she will throw or push/roll anything to go after it.
She also really loves "Tutu" her doll from my cousin, and "Nino" her giraffe/antelope/horse thing that she got from my sister Sara (I think, with some clothes), and her bunny rabbit from my grandmother, and her froggy blanket from my mom. So all stuffed animals are fun for her. But we only give her ones that are like the Ty beany baby fabric because it washes well and that don't have sewn on eyes.
Her favorite things right now are cars/trucks/things that go "vroom" and puppy dogs. Anything in those categories are fun for her. Books, pictures, the real thing especially... She has a toy truck from that belonged to Alan plus a new toy car from us. But she doesn't have a puppy dog really. Other than the puppy dog quilt which she used to love but seems to not equate with puppies as much as the fun of playing hide and seek (even just with herself).
She has also developed "timing." So hide and seek is REALLY fun. And I think she plays versions of that with clothing when I have a basket full of clothes to be folded...she has a ball. But to explain the timing: she will literally hide for a while and then pop out with a smile and boo at the same time. We LOVE it and she goes crazy with energy and excitement anytime we indulge the game. It turns into a rough housing on our bed plus a room to room hunt. Legs pumping, body thrashing, squeals of delight.
Finally, as I have to go to eat dinner: she likes to hang upside down and will throw her head back and arch her back repeatedly. You have to be ready.
PS Discovered she really loves the water this weekend. Fascinated by the fountain at the mall and lived vicariously through my bath tonight. She stood tub-side and asked me to make the duck squirt water out of its mouth into the air or on her hands over and over again. "gih!""gih!"
(Posted by Brooke via Alan's account - oops)
(Posted by Brooke via Alan's account - oops)
Friday, June 3, 2011
No Vomiting = taste of normal daily life
It has been almost 5 months since her transplant and life is almost like "normal."
Since we stopped going to the hospital for her IV antifungal, CLARA HAS STOPPED VOMITING! She was previously vomiting every morning at least once and as many as 4 times in a day. It was really tough not knowing what was causing it but assuming it was general nausea that was probably aggravated by having the NG tube. This was one really, really, big thing that Alan left out of his last post which has put us into the realm of normal life for the past month.
We are loving only going into the hospital once a week now to check her blood product production, general chemistry, and her prograf level (one of her two immunosuppressants). And of course the doctors take a look at her physically and discuss any concerns I have about her currently and the plan going forward. It is amazing how many questions and concerns we still have. My conversations with them easily last a half hour each week. How nice to only be at the hospital for an hour rather than 3-5!
This coming Monday Clara will have her (hopefully) last MRI/CT of the areas of her body which were once infected with the aspergillus. We will be checking to confirm that the fungus didn't return since we stopped the IV antifungal 7 weeks ago. She is still getting good antifungal coverage orally but it is more of a prophylaxis for all fungi in the environment rather than a drug targeted to treat her aspergillus.
As Alan discussed in his last post, if the scan is clear, we will begin the check list to make sure we can still draw blood from Clara's veins, and that they are strong enough to maintain a catheter IV line for her monthly infusions of IVIG. If that is all well and good, her central IV line in her chest will be scheduled to be removed! Freedom! I can't wait to be able to take this girl longer than 20 minutes away from the hospital! She still can't really travel, fly on an airplane or anything of that sort, but we could take a day trip to Napa or San Francisco, etc. Yippee!
More to come soon!
Since we stopped going to the hospital for her IV antifungal, CLARA HAS STOPPED VOMITING! She was previously vomiting every morning at least once and as many as 4 times in a day. It was really tough not knowing what was causing it but assuming it was general nausea that was probably aggravated by having the NG tube. This was one really, really, big thing that Alan left out of his last post which has put us into the realm of normal life for the past month.
We are loving only going into the hospital once a week now to check her blood product production, general chemistry, and her prograf level (one of her two immunosuppressants). And of course the doctors take a look at her physically and discuss any concerns I have about her currently and the plan going forward. It is amazing how many questions and concerns we still have. My conversations with them easily last a half hour each week. How nice to only be at the hospital for an hour rather than 3-5!
This coming Monday Clara will have her (hopefully) last MRI/CT of the areas of her body which were once infected with the aspergillus. We will be checking to confirm that the fungus didn't return since we stopped the IV antifungal 7 weeks ago. She is still getting good antifungal coverage orally but it is more of a prophylaxis for all fungi in the environment rather than a drug targeted to treat her aspergillus.
As Alan discussed in his last post, if the scan is clear, we will begin the check list to make sure we can still draw blood from Clara's veins, and that they are strong enough to maintain a catheter IV line for her monthly infusions of IVIG. If that is all well and good, her central IV line in her chest will be scheduled to be removed! Freedom! I can't wait to be able to take this girl longer than 20 minutes away from the hospital! She still can't really travel, fly on an airplane or anything of that sort, but we could take a day trip to Napa or San Francisco, etc. Yippee!
More to come soon!
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