Hmmm, dare I say it? We are right now cautiously optimistic. These are the two words I am feeling right now. It's been two weeks since Bailey's last blood transfusion, so I took her yesterday to get blood work done to see what her CBC (Complete Blood Count) and Reticulocyte (new red blood cells) Count is, so we could see how well she is maintaining her hemaglobin levels, and anticipate whether we need to move her next transfusion up or back or keep it where it is, presently scheduled for next Thursday morning.
Anyways, the results were sent to her pediatrician since she wrote the script for the blood work, so when I talked to her today, she said her hemaglobin level was at 8.9 (which is below normal--11 to 15--but still okay for her since she is used to being anemic), probably around where they expected it to be, not sure. But then she said Bailey's reticulocyte count was 2.4....wait, I said to her...that is high, right? I nearly cried from the possibility, okay, so I did cry from the possibility...that her body could be starting to make its own red blood cells. She seemed to be a little hopeful too and said she'd fax the results over to Dr. Strouse. So I got off the phone with him a little while ago. It's not as cut and dry as her levels going from 0.5 to 2.4, because it depends on how much blood is in her body. When she is really anemic, the retoculocyte # can be higher since overall, there is less blood, and the #s may be lower when there is more blood since the transfusions give her packed red blood cells and not many of them are "new" (reticulocytes). But the fact that her # was 2.4 and she is not very anemic (relatively speaking, ha ha, in comparison to her lowest point), is a very good thing. Dr. Strouse says he typically doesn't get excited or tell his patients/parents to get excited based on the results of one lab test, so I said I would just be cautiously optimistic. He said he would too. The fact that the #s are higher meant that...drum roll please...her body may be starting to make its own red blood cells. This is the exact thing we have been praying for and I am so hopeful, but trying to just be careful not to get my hopes up too much, trying to find the balance. We have been grasping the idea of her new diagnosis and accepting it and don't want false hope to make coping with it all any harder. I don't know what it would mean if her body did start making its own red blood cells now...would it mean that she doesn't have DBA and that it might just be TEC (Transient Erythroblastopenia of Childhood), a temporary form of anemia that is like DBA but goes away? Or would it mean that she does have DBA and this is some sort of remission??? I don't know. Or, it all could just mean that her body is producing some but not enough red blood cells and we continue on this DBA journey??? Hmmm, can you tell the wheels in my brain are turning?
So keep praying....pray that her body IS making its own red blood cells! She'll go next Wednesday afternoon for blood work in preparation for her next transfusion which would be the following day (the 6th). If the #s are good, Dr. Strouse said might be able to wait longer to be transfused, so we'll see. I was not expecting this, but I welcome with open arms the possibility of what could be.
So now in addition to MISSION: POSSIBLE-Making red blood cells...I just pray that God would allow me to understand the purpose in all of it. I have just been thinking so much and trying to process what it means faith-wise. I know God CAN heal her & keep/allow her to be healthy, but I struggle with WILL he? And of course I want to pray that he can heal her and believe whole-heartedly that he will, but then I feel like I am not submitting to his will, but expecting the result that I want. So then I pray for his will, but what I really want is Bailey to be healthy. I go round and round on this faith merry-go-round. I was talking to a friend this week saying that I know the Lord's word is "lamp unto my feet and a light unto my path" (Psalm 119:105)...but sometimes I wish for a floodlight, or at least a flashlight to see what's up ahead. Guess it is all about walking by faith, not by sight.
Thank you all again for your thoughts and prayers. We feel so loved and supported and we look forward for when Bailey is old enough to see the fellowship she has around her. In the meantime, we have a crawling little sweet thing who just got another tooth. Life is good.
Thursday, February 26, 2009
Thursday, February 12, 2009
A long, but sweet day...
Home again, ahhh sweet home again. It was quite a long day, longer than expected, but a good day all in all. When we got there this morning, we found out that they hadn't done the cross and type for Bailey's blood from the sample they took on Monday. Sooo, they had to take a sample to do that and send it to the lab...before they could do the transfusion. This is to check the blood type and compatibility of her blood with the donor blood she'd be receiving for the transfusion. Even though they already know her blood type, this is done every time 1-3 days before a transfusion to ensure accuracy and that people always get the right blood type during transfusions. So it was an error that it wasn't done before we got there with the other sample, so they had to do that today before her transfusion could start. So we got there at 10am, but didn't start the transfusion until a little after 2pm. And since the transfusion takes about 4 hours, we didn't leave until around 6:30pm tonight. Could have been frustrated, but hey, I'd say we are just learning to be flexible with the things that happen! And Bailey didn't seem to mind. The nurses were wonderful, and we felt so bad since technically the outpatient transfusion part of the clinic closes at 5pm and they stayed for us. So we walked out with the staff tonight. Bailey did great, cried a little but no tears when they did her IV. They have a staff of people there (called Child Life) to make things easier during a child's stay, so there was someone blowing bubbles for her while she got her needle and clowns came while we were in the waiting room. What a little trooper she is, and we are so thankful for the staff of nurses that are so caring and gentle with our little one. We had a little room to hang out in all day with a little mat for Bailey to play on as she received her transfusion. They even brought in toys for her to play with. We even had a very welcomed visit from "Aunt Kate" who was simply glowing with her baby belly! Thank you for your visit! She even brought this tired momma a slurpee---thank you! Grandma Helen was with us the whole day. Since Thursdays are normally the day she watches Bailey, we weren't going to let her off the hook that easy, and of course she wouldn't turn down any opportunity to spend the day with baby Bails! It was great having her there to help out and spend the day with us. Ben was able to bring his laptop and working remotely, so he could still get things done for work. We are both blessed to have jobs that are giving us flexibility with everything going on.
Dr. Strouse came by to check on us. He said that they expect Bailey's hemaglobin will be on the low end of normal, about an 11, when she left tonight. So we joke that she will be crawling tomorrow, with this new boost of red blood cells (i.e. more oxygen)!! He gave us some more information about a study at NIH on Bone Marrow Failure Syndromes that we qualify for that will do most of Bailey's genetic testing (for free!---since it is to further their research...we just have to commit our time). We'll get to meet with an expert named Dr. Alter so she can answer tons of questions and give us up to date info on DBA, and serve as a second opinion. So we will be scheduling that sometime after the paperwork is complete. Next step for now is another transfusion in 3-4 weeks, with a pediatrician check up before that to test her blood levels.
So we are home now. Tired, but it was a full, rich day. Sometimes I have to remember that situations like this force us to stop for a bit, forget about the other things going on in life, and just BE. Just spend time hanging out, talking, being intentional, playing. No chores, no agendas. Sweet.
Bailey is upstairs asleep for the night, all tuckered out from the long day. I am planning on doing the same too. Ahh, but an episode of Greys Anatomy is calling me first. Thank you all for your prayers, thoughts, calls, emails, and support. We are so appreciative for you all.
Dr. Strouse came by to check on us. He said that they expect Bailey's hemaglobin will be on the low end of normal, about an 11, when she left tonight. So we joke that she will be crawling tomorrow, with this new boost of red blood cells (i.e. more oxygen)!! He gave us some more information about a study at NIH on Bone Marrow Failure Syndromes that we qualify for that will do most of Bailey's genetic testing (for free!---since it is to further their research...we just have to commit our time). We'll get to meet with an expert named Dr. Alter so she can answer tons of questions and give us up to date info on DBA, and serve as a second opinion. So we will be scheduling that sometime after the paperwork is complete. Next step for now is another transfusion in 3-4 weeks, with a pediatrician check up before that to test her blood levels.
So we are home now. Tired, but it was a full, rich day. Sometimes I have to remember that situations like this force us to stop for a bit, forget about the other things going on in life, and just BE. Just spend time hanging out, talking, being intentional, playing. No chores, no agendas. Sweet.
Bailey is upstairs asleep for the night, all tuckered out from the long day. I am planning on doing the same too. Ahh, but an episode of Greys Anatomy is calling me first. Thank you all for your prayers, thoughts, calls, emails, and support. We are so appreciative for you all.
In the meantime, Happy Valentine's Day this weekend.
Love, Ben Betty & Bailey
Love, Ben Betty & Bailey
Monday, February 9, 2009
A new diagnosis & a new friend....
Well, we are back from our appointment. Not the news we wanted, but we are nevertheless just taking it all in stride and going step by step...
Bailey did great getting blood drawn and only shed one tear. We are so proud of our brave girl. She is definitely better at getting needles than I am! We met with Dr. Strouse and got to ask more questions and basically come to the conclusion at this point that Diamond Blackfan Anemia (DBA) will be her diagnosis. Really, it's more about ruling everything else out to come up with the diagnosis and then confirming it with a bone marrow biopsy. Since they have pretty much ruled everything else out, DBA is what we are left with. It's been pretty anti-climatic coming to this diagnosis since we sort of slowly eased into it. So that is where we are. Based on today's bloodwork, Bailey's hemaglobin is 7.2 and her hematocrit is 21.8. This is lower than when she left the hospital (not by too much), and overall, lower than average levels, but for her, it is functional for a little while, just not ideal. We know that she can get much lower than that since her hemaglobin was 3.2 when she first went to the hospital (if you are a nurse, you understand these levels...sorry to bore anyone else!). Her reticulocyte count was 0.5% (typical is 1.0-2.0 %) so, unfortunately, this count has not increased, which means her body is not beginning to make it's own red blood cells, and it furthers to support the DBA diagnosis. She goes back Thursday for her next blood transfusion. She'll get transfusions every 3-4 weeks until she is a year old...after that time, they will start her on steroids to see if that will cause her body to start making her own red blood cells.
In the meantime, here's something cool that has happened. Last week, I was doing some research online and called the DBA Foundation to get some more information. I spoke to the president of the foundation and she was so great and supportive and encouraging. In talking to her, she mentioned that she was glad I had already gotten on the list-serve. When I told her I wasn't yet on the DBA list-serve, she seemed puzzled. She said there was a posting that morning from the mom of a 7 month old girl with DBA who gets treatment at Hopkins---she assumed it was me. When I told her it wasn't, we were both stunned realizing there was another mom of a 7 month old girl with DBA right here in Baltimore also-at the same hospital!!! So she was going to put us in contact if it was okay w/the other family. Jump ahead to today. During our appt, Dr. Strouse, tells me there is another family with a child with DBA there that day and asks if we would like to meet them! It was the same family! I think he was startled when I told him I already knew about them and that I was planning on getting in touch with them. Sooo, Ben and I got to take Bailey over to the room where transfusions are done, and we got to meet Ashlynn and her mom. She's 7 months old too, born exactly a week after Bailey. The two of them sat together and played a bit and we got to get their picture. We feel grateful to have met someone else going through the same thing with a child the same age. The randomness is just insane. Since there are only 25-35 new cases of DBA per year, the fact that there are two little girls the same age at the same hospital getting treatment is more than a coincidence!
If you want to know more about what Diamond Blackfan Anemia is, here are a few websites that give some good information. We knew Bailey was one in a million...we are now learning more specifically, that she is 6 in a million (statistically speaking, in regards to DBA)...
http://www.dbafoundation.org/about.php
http://www.diamondblackfananemia.com/DBAGeneral.html
http://www.childrenshospital.org/az/Site719/mainpageS719P0.html
So the next step is a transfusion at Hopkins on Thursday. We go in at 10am and Bailey will get her IV started and her transfusion takes about 4 hours. During that time, there's a little mat for her and we can bring toys and just sit and play with her.
Thanks for all your prayers and thoughts, calls and emails. Our prayer at this point is obviously for healing, but also for ongoing health as she goes through transfusions and eventually steroid treatments. We pray for her heart, emotionally and spiritually speaking, as she grows up with a lifelong illness, that she would be compassionate and loving toward others, even more so because of her experiences, that she would love the Lord and love others, and that she can impact others and know HIM more, because..."And we know that in all things God works for the good of those who love him, who have been called according to his purpose." (Romans 8:28)
Bailey and her new friend Ashlynn at Johns Hopkins.
PS: Go give blood! https://www.givelife.org/index_flash.cfm
Obviously, we are now completely biased...but look above to see the face of a life you could be saving!!!
Bailey did great getting blood drawn and only shed one tear. We are so proud of our brave girl. She is definitely better at getting needles than I am! We met with Dr. Strouse and got to ask more questions and basically come to the conclusion at this point that Diamond Blackfan Anemia (DBA) will be her diagnosis. Really, it's more about ruling everything else out to come up with the diagnosis and then confirming it with a bone marrow biopsy. Since they have pretty much ruled everything else out, DBA is what we are left with. It's been pretty anti-climatic coming to this diagnosis since we sort of slowly eased into it. So that is where we are. Based on today's bloodwork, Bailey's hemaglobin is 7.2 and her hematocrit is 21.8. This is lower than when she left the hospital (not by too much), and overall, lower than average levels, but for her, it is functional for a little while, just not ideal. We know that she can get much lower than that since her hemaglobin was 3.2 when she first went to the hospital (if you are a nurse, you understand these levels...sorry to bore anyone else!). Her reticulocyte count was 0.5% (typical is 1.0-2.0 %) so, unfortunately, this count has not increased, which means her body is not beginning to make it's own red blood cells, and it furthers to support the DBA diagnosis. She goes back Thursday for her next blood transfusion. She'll get transfusions every 3-4 weeks until she is a year old...after that time, they will start her on steroids to see if that will cause her body to start making her own red blood cells.
In the meantime, here's something cool that has happened. Last week, I was doing some research online and called the DBA Foundation to get some more information. I spoke to the president of the foundation and she was so great and supportive and encouraging. In talking to her, she mentioned that she was glad I had already gotten on the list-serve. When I told her I wasn't yet on the DBA list-serve, she seemed puzzled. She said there was a posting that morning from the mom of a 7 month old girl with DBA who gets treatment at Hopkins---she assumed it was me. When I told her it wasn't, we were both stunned realizing there was another mom of a 7 month old girl with DBA right here in Baltimore also-at the same hospital!!! So she was going to put us in contact if it was okay w/the other family. Jump ahead to today. During our appt, Dr. Strouse, tells me there is another family with a child with DBA there that day and asks if we would like to meet them! It was the same family! I think he was startled when I told him I already knew about them and that I was planning on getting in touch with them. Sooo, Ben and I got to take Bailey over to the room where transfusions are done, and we got to meet Ashlynn and her mom. She's 7 months old too, born exactly a week after Bailey. The two of them sat together and played a bit and we got to get their picture. We feel grateful to have met someone else going through the same thing with a child the same age. The randomness is just insane. Since there are only 25-35 new cases of DBA per year, the fact that there are two little girls the same age at the same hospital getting treatment is more than a coincidence!
If you want to know more about what Diamond Blackfan Anemia is, here are a few websites that give some good information. We knew Bailey was one in a million...we are now learning more specifically, that she is 6 in a million (statistically speaking, in regards to DBA)...
http://www.dbafoundation.org/about.php
http://www.diamondblackfananemia.com/DBAGeneral.html
http://www.childrenshospital.org/az/Site719/mainpageS719P0.html
So the next step is a transfusion at Hopkins on Thursday. We go in at 10am and Bailey will get her IV started and her transfusion takes about 4 hours. During that time, there's a little mat for her and we can bring toys and just sit and play with her.
Thanks for all your prayers and thoughts, calls and emails. Our prayer at this point is obviously for healing, but also for ongoing health as she goes through transfusions and eventually steroid treatments. We pray for her heart, emotionally and spiritually speaking, as she grows up with a lifelong illness, that she would be compassionate and loving toward others, even more so because of her experiences, that she would love the Lord and love others, and that she can impact others and know HIM more, because..."And we know that in all things God works for the good of those who love him, who have been called according to his purpose." (Romans 8:28)
Bailey and her new friend Ashlynn at Johns Hopkins."Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
In the meantime, we have also learned that Extreme Makeover: Home Edition will be featuring a family of a girl with Diamond Blackfan Anemia on their show. We learned from Ashlyn's family today that it will air on ABC on March 22nd. So check it out!PS: Go give blood! https://www.givelife.org/index_flash.cfm
Obviously, we are now completely biased...but look above to see the face of a life you could be saving!!!
Thursday, February 5, 2009
DBA in the news...Extreme Makeover: Home Edition
I have been doing some research over the past few days and this was interesting...I don't know when it will air, but Extreme Makeover: Home Edition just chose a family of a girl with Diamond Blackfan Anemia to build them a home!!! I am going to follow the story to find out when it will be on TV! http://www.extrememakeovertucson.com/theFamily.html
Monday, February 2, 2009
13 Pounds!
Hey everyone, Bailey here! Just wanted everyone to know that I am now 13 lbs! I had a pediatrician appointment this morning and they weighed me. I had lost some weight from when I wasn't feeling well, but I am eating well now and getting bigger! I also got my flu shot and only cried for a few seconds...I am getting used to needles I think! Mommy and Daddy say I am a brave girl...I try! I am doing well and getting closer to being "back on the chart" for how much I weigh.Mommy got a phone call from Dr. Strouse today, he's my pediatric hematologist (blood doctor). He said my hemoglobin levels haven't changed (which is good). They are at 8.8 (and were at 8.9 when we left Hopkins), but my reticulocyte count was still low (0.6). Reticulocytes are immature (new) red blood cells, typically composing about 1% to 2% of the red cells in the human body. Since mine are less than 1%, that is low. This means I am most likely not starting to make new red blood cells on my own (which isn't good). I have a doctor's appt a week from today (the 9th) at Hopkins and I will have more tests done. I also have an appointment there the following Thursday (the 12th) for my next blood transfusion, since it is likely I will need one. We'll cancel the appointment if I have started making new red blood cells and my reticulocyte count goes up before then. So, it is likely that I have Diamond Blackfan Anemia. If I do need the transfusion, I would have a bone marrow biopsy sometime after that to confirm the diagnosis. Either way, right now I am happy and healthy and we are all just taking things one day & one step (or crawl, since that is what I am learning to do) at a time.
Yesterday I got to take a walk in the stroller with M&D because it was so nice out. I loved it!!! Unfortunately, later, I had to watch Pittsburgh win the SuperBowl. But I got to see my fun neighbors and Mrs. Jill from across the street held me and played with me for awhile. All in all, it was a good weekend. Maybe there will be more snow this week and Mommy will get to stay home with me on one of her work days!
Thank you again for loving me and praying for me.
Love, Bailey
PS: I loved the balloon and flowers from Tommie, Leslie, & London! THANK YOU!
PS: Check out the video...bet you didn't know I have a HonkyTonk Padonkadonk!
I got to wear my yellow sweater from "Aunt Jessica" today!!!
I got to spend the day with my cousin Dominic on Saturday! He came down to visit with my Aunt Erin and Uncle Nick.
Mommy took a picture of my tush! Oh MY!
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