May is 2/3 of the way over, and I have yet to blog once this month. I could offer some excuses, but the truth is, I've kind of been avoiding this moment. Ordinarily, I enjoy posting regularly about goings-on in our life and sharing the good and bad moments of being a mommy. But I'm also pretty transparent as I write, and I haven't really felt like baring my soul lately.
There's no way that I can fully catch up on the last several weeks during my hiatus, but I will try to hit the highlights.
~I'm getting fatter by the minute, and my c-section is now scheduled for July 18...only 8 weeks away!! Emerson is growing and quite active, and her room is in the final stages of completion. Phillip is wondering what else I could possibly squeeze in her room. My sister had me a baby shower last night, and I got so many cute things! I thought I had a lot of stuff with my boys, but I'm pretty sure I've got even more for this little girl!
~Bryson finished his last day of preschool last week. I was so proud of him as he stood next to his teacher to receive his certificate! He looked so shy and serious. His teacher said that Bryson has excellent manners and is always so polite. I was thrilled with the good report and with his academic progress. As we walked outside following the festivities, there was an ice cream trolley waiting out front selling ice cream to all of the children. There's not many things that Bryson loves more than the ice cream trolley! Then I suddenly realized that I had no cash on me, and I had to tell him he couldn't get ice cream on his last day of preschool. Talk about feeling like a bad mom!! We walked past all of his friends in line or enjoying their treat, and I ended up taking him through Wendy's for a frosty. It wasn't exactly the same, but I tried to make up for it!
He's now officially registered for Kindergarten or Young Five's starting in August. He won't be 5 until August 16th, so we had been trying to decide whether or not to start him in Kindergarten. Now with plans of a bone marrow transplant for Avery which is going to put some serious stress on our family and have me in Cincinnati for months at a time with him, we decided we should probably put it off. So, we're planning to start him in the Young Five's program unless something changes between now and then. I can't believe he's even old enough to go to school!
~Avery has been truckin' along, smiling and clapping despite the many transfusions. He isn't making many red cells or platelets these days, so we're spending a lot of time in the infusion room. The study that he joined at Johns Hopkins has brought to light some new information that may point to the reason for his bone marrow failure. It's kind of complex, but essentially, Avery's end caps (telomeres) on his cells are too short. A normal person is born with longer telomeres that shorten over time through thousands and millions of cell divisions, which cause the telomeres to slowly break off shorter and shorter, leaving the cells exposed to potential damage and mutation. These damaged/mutated cells are what brings about the aging process: graying hair, loss of muscle tone, arthritis, and of course things like cancer, tumors, and organ failure. Because the blood cells divide more rapidly than other cells in the body, one of Avery's first characteristics of these shortened telomeres is bone marrow failure. A successful bone marrow transplant will fix his cells in his bone marrow; however, the cells in the rest of his body also have shortened telomeres. So, according to the doctor who is overseeing this study, we can expect signs of premature aging to affect Avery within the next decade. Some of these effects are pretty severe and life threatening.
This news has brought a dark cloud to my world lately. I try not to worry about the future too much, but sometimes I just can't help it. I have to admit that my faith has wavered some, but I'm trying to stay strong as I process this information and try to give it to God. As my husband said when he heard the news, "We know the man who made the telomeres."
Beyond this development, we've also been moving along in the bone marrow transplant process. The search coordinator told me a few days ago that there are 8 potential matches in the National Registry that they're going to screen more closely. Hopefully, we'll know within the next month whether any of these donors could be used for a transplant.
~Phillip is working his last week of second shift, thank God. I'm so looking forward to him being on days. We can actually have dinner in the evenings together and do normal, family stuff! He's also been working on some house projects that have been long in coming. We're in the process of getting new siding, and then after that, we can finish our landscaping, get a new deck, pour a new driveway...whew! Makes me tired just thinking about it, and I'm not even the one doing all the work! I am glad I've got such a handy husband.
Despite the concern for the future, I am so looking forward to having some good days with my family this summer. We're hoping to take a short vacation to Tennessee in a couple of weeks if Avery and Emerson cooperate. We'll just take the rest a day at a time, which has become my mantra lately.
As always, we sure appreciate the prayers that so many of you all offer on our family's behalf.
~Bethany
Saturday, May 21, 2011
Thursday, April 28, 2011
Showers, Showers, and Showers of Blessings
If it is true that April showers bring May flowers, then we are going to have the most flowery May ever! Seriously, I don't remember ever experiencing so many rainy days in my life. It's been to the point that when the sun pops out and the rain stops for just a few minutes, Bryson hollers, "The sun's out, Mom!" and I get a little excited myself.
We've just been trying to truck along through these rainy days and make the most of them. It certainly has been eventful. Avery has continued to get red cells and platelets, since he's not making many on his own. We're meeting with the transplant doc from Cincy on May 11, and we're hoping to get some sort of plan for his treatment. The response to people wanting to register for the Bone Marrow Registry has been huge, and we are so thankful for that!
Bryson, my usually very healthy, active child, has had quite a rough time lately. This is the first morning in the last 13 days that he has woken up without a fever, thank God! It started as a cough and low grade fever that would come and go, and of course, I didn't get too stressed. I just tried to keep him away from Avery by letting him sleep in our room for a few nights. But, after about 5 days of fever, I took him to our pediatrician. She wasn't terribly concerned either since his ears, throat, and everything else looked good. She said it must be viral and would pass. A few days later with even higher fevers and more coughing, and we headed back for a chest xray, which showed many spots in his lungs. She said it was either Pertussis (whooping cough) or walking pneumonia. He's been on antibiotics for three days now, and I think he's finally on the mend!
Phillip's pappaw passed away Sunday evening, and we had his funeral yesterday. He has always been such a spunky guy, even at 83, that it seems odd that he went so quickly. He will be missed dearly!
So that's the bad stuff that has been going on lately. But, as usual, it hasn't been all bad. Actually, despite the physical rain, we have received some "showers of blessings" as well. One blessing came in the strange form of diapers. I know that sounds weird, but a person who I wouldn't have considered a friend, more of an acquaintance, blessed us by buying us four large boxes of diapers. I'm not talking about the little boxes you get at the store; these are the boxes with multiple packs inside. Two were Avery's size, and two were smaller for our baby. She said she wanted to do something nice for us because we have done some counseling with a couple of her family members recently. We truly appreciated it! It may sound strange for me to list this as a blessing, but it certainly was a huge blessing to us!
Another fantastic blessing is that we got our largest tax refund we've ever gotten before. We kind of procrastinated on having our taxes done because we were pretty sure we would have to pay or maybe break even. Boy, were we surprised!
Phillip is now on day shift on his weekends that he works, which is just one more step closer to getting on full day shift. He has been told that sometime early May he may be saying good-bye to second shift, and I know neither of us will miss it!
Something else I am so thankful for this month is that Avery was invited to join a research study at Johns Hopkins hospital. Joining only meant that we had to send two tubes of blood out there, but in exchange, they're doing some of the tests for free that we have been waiting on our insurance to approve for more than a month. We're hoping to have results back in a couple of weeks, and the outcome should give us some really helpful information about the cause of Avery's bone marrow failure and how best to modify his transplant medication regimen.
Oh, and I don't want to forget to mention that my sister, Rebecca, got to make a trip into town. I haven't seen her since Thanksgiving! We have wanted to go to Alabama ourselves for a visit, but we just can't make that big of trip right now with Avery's health. It was so nice to see her, catch up a little bit, and of course, compare bellies. I think I'm about to win that contest! Oh well, at number three, I think I'm entitled to be a little fatter. :)
You know, bad things are always happening. There's always loss, sickness, frustrations, stress, and lots of negative things to focus on. But amidst these painful times and this dismal weather, there are also many blessings I don't want to fail to overlook!
I praise God for his blessings and for his strength to take us through the rough times in our lives.
Hoping for an end to our monsoon season...
Bethany
We've just been trying to truck along through these rainy days and make the most of them. It certainly has been eventful. Avery has continued to get red cells and platelets, since he's not making many on his own. We're meeting with the transplant doc from Cincy on May 11, and we're hoping to get some sort of plan for his treatment. The response to people wanting to register for the Bone Marrow Registry has been huge, and we are so thankful for that!
Bryson, my usually very healthy, active child, has had quite a rough time lately. This is the first morning in the last 13 days that he has woken up without a fever, thank God! It started as a cough and low grade fever that would come and go, and of course, I didn't get too stressed. I just tried to keep him away from Avery by letting him sleep in our room for a few nights. But, after about 5 days of fever, I took him to our pediatrician. She wasn't terribly concerned either since his ears, throat, and everything else looked good. She said it must be viral and would pass. A few days later with even higher fevers and more coughing, and we headed back for a chest xray, which showed many spots in his lungs. She said it was either Pertussis (whooping cough) or walking pneumonia. He's been on antibiotics for three days now, and I think he's finally on the mend!
Phillip's pappaw passed away Sunday evening, and we had his funeral yesterday. He has always been such a spunky guy, even at 83, that it seems odd that he went so quickly. He will be missed dearly!
So that's the bad stuff that has been going on lately. But, as usual, it hasn't been all bad. Actually, despite the physical rain, we have received some "showers of blessings" as well. One blessing came in the strange form of diapers. I know that sounds weird, but a person who I wouldn't have considered a friend, more of an acquaintance, blessed us by buying us four large boxes of diapers. I'm not talking about the little boxes you get at the store; these are the boxes with multiple packs inside. Two were Avery's size, and two were smaller for our baby. She said she wanted to do something nice for us because we have done some counseling with a couple of her family members recently. We truly appreciated it! It may sound strange for me to list this as a blessing, but it certainly was a huge blessing to us!
Another fantastic blessing is that we got our largest tax refund we've ever gotten before. We kind of procrastinated on having our taxes done because we were pretty sure we would have to pay or maybe break even. Boy, were we surprised!
Phillip is now on day shift on his weekends that he works, which is just one more step closer to getting on full day shift. He has been told that sometime early May he may be saying good-bye to second shift, and I know neither of us will miss it!
Something else I am so thankful for this month is that Avery was invited to join a research study at Johns Hopkins hospital. Joining only meant that we had to send two tubes of blood out there, but in exchange, they're doing some of the tests for free that we have been waiting on our insurance to approve for more than a month. We're hoping to have results back in a couple of weeks, and the outcome should give us some really helpful information about the cause of Avery's bone marrow failure and how best to modify his transplant medication regimen.
Oh, and I don't want to forget to mention that my sister, Rebecca, got to make a trip into town. I haven't seen her since Thanksgiving! We have wanted to go to Alabama ourselves for a visit, but we just can't make that big of trip right now with Avery's health. It was so nice to see her, catch up a little bit, and of course, compare bellies. I think I'm about to win that contest! Oh well, at number three, I think I'm entitled to be a little fatter. :)
You know, bad things are always happening. There's always loss, sickness, frustrations, stress, and lots of negative things to focus on. But amidst these painful times and this dismal weather, there are also many blessings I don't want to fail to overlook!
I praise God for his blessings and for his strength to take us through the rough times in our lives.
Hoping for an end to our monsoon season...
Bethany
Sunday, April 17, 2011
*Snapshots*
Here are a few snapshots of the last couple of weeks at the Hoskins' house. No, they're not edited or posed. But sometimes I like to just capture the moments rather than take "pretty" pictures.
The boys are finally able to enjoy the warm weather out on their swing set! Bryson has recently learned to swing himself a little, although he still prefers to be pushed. Avery starts to giggle as soon as the breeze hits his face. It's so cute!
This is how I found Avery sleeping. I don't know how he does this without hurting his back.
The boys cuddling in their pajamas. Avery is more interested in my phone than anything else.
All dressed for church. I thought I should throw in one picture of them actually dressed, since I take a lot of pictures of them half dressed or in their pj's.
Avery looking out the window. He loves to watch what is going on outside.
The boys are finally able to enjoy the warm weather out on their swing set! Bryson has recently learned to swing himself a little, although he still prefers to be pushed. Avery starts to giggle as soon as the breeze hits his face. It's so cute!
This is how I found Avery sleeping. I don't know how he does this without hurting his back.
The boys cuddling in their pajamas. Avery is more interested in my phone than anything else.
All dressed for church. I thought I should throw in one picture of them actually dressed, since I take a lot of pictures of them half dressed or in their pj's.
Avery looking out the window. He loves to watch what is going on outside.
Saturday, April 16, 2011
Happy Birthday, Avery!!
This month we have two birthdays in the Hoskins' house! My baby boy, Avery, turned 3 this week. I can hardly believe it. In some ways it seems like he has been part of our lives forever; but in other ways, it seems like just yesterday I had a little 2-pound baby that changed my life in more ways than I could ever imagine.
This week, we had Avery's first IEP meeting in preparation for his start into public school this fall. As I listened to each person there summarize their evaluations and observations of Avery, I was struck with how often I focus on what he CAN'T do, when in fact, there are a lot of things he CAN do!
For example, here's a few things that Avery is doing at three. He can sit unsupported and go from lying to sitting on his own. This is something he just learned this year! He can clap his hands, he can wave when prompted with a little bit of thinking on his part, he makes great eye contact when spoken to, and he is very social. In fact, in all of his developmental tests, social-emotional is one area that he scores the highest in...not too far away from the normal range. (He must have get this from his daddy :)) Avery switches hands, examines toys, attempts to "throw" a ball, enjoys little games like peek-a-boo, and even anticipates the next move in some games. He is beginning to "help" get himself dressed by moving his feet toward me when I'm dressing him or lifting a arm when he sees his coat or shirt. He absolutely LOVES bath time, and would sit and play in the bath tub for hours if I had time to sit and watch him that long. Avery recognizes me over strangers, but he has no separation anxiety and goes to anyone easily, which is pretty amazing considering all he's been through. He's becoming increasingly mobile in his own way. He lays down, rolls over, stretches, and then sits up to get to what he wants. He has been pulling his legs up under him in the start of a crawling position. He is quite the mess maker as he loves to empty my diaper bag or pull everything off of a shelf within reach.
One thing that really surprised me that the therapists and psychologist said to me when they first met Avery was how they had heard about Avery and all of his medical conditions and special needs and were expecting a frail little baby with very little personality or interaction with the world. They were so surprised to see such a big, smily, boy who was eager to interact with them and play their games for their evaluations.
So this week on Avery's birthday, I could make a list of all the things he can not do and all of the milestones that he should've met long ago. But, I'd rather not. It makes me too sad as a mommy to think about what he should be doing right now, and I don't want to be sad. I want to be thankful for my special little boy.
One last note, we learned Wednesday, the day before his birthday, that none of us match him for a bone marrow transplant. We're going to save Emerson's cord blood in July and test it, but the doctor from Cincinnati is going to go ahead and begin accessing the National Bone Marrow Registry. Please pray that we will be able to find a match for his transplant. Of all the things that I worry about with Avery, his health issues scare me more than anything. I would love to see him get a successful transplant and close the door to that scary part of his life.
This week, we had Avery's first IEP meeting in preparation for his start into public school this fall. As I listened to each person there summarize their evaluations and observations of Avery, I was struck with how often I focus on what he CAN'T do, when in fact, there are a lot of things he CAN do!
For example, here's a few things that Avery is doing at three. He can sit unsupported and go from lying to sitting on his own. This is something he just learned this year! He can clap his hands, he can wave when prompted with a little bit of thinking on his part, he makes great eye contact when spoken to, and he is very social. In fact, in all of his developmental tests, social-emotional is one area that he scores the highest in...not too far away from the normal range. (He must have get this from his daddy :)) Avery switches hands, examines toys, attempts to "throw" a ball, enjoys little games like peek-a-boo, and even anticipates the next move in some games. He is beginning to "help" get himself dressed by moving his feet toward me when I'm dressing him or lifting a arm when he sees his coat or shirt. He absolutely LOVES bath time, and would sit and play in the bath tub for hours if I had time to sit and watch him that long. Avery recognizes me over strangers, but he has no separation anxiety and goes to anyone easily, which is pretty amazing considering all he's been through. He's becoming increasingly mobile in his own way. He lays down, rolls over, stretches, and then sits up to get to what he wants. He has been pulling his legs up under him in the start of a crawling position. He is quite the mess maker as he loves to empty my diaper bag or pull everything off of a shelf within reach.
One thing that really surprised me that the therapists and psychologist said to me when they first met Avery was how they had heard about Avery and all of his medical conditions and special needs and were expecting a frail little baby with very little personality or interaction with the world. They were so surprised to see such a big, smily, boy who was eager to interact with them and play their games for their evaluations.
So this week on Avery's birthday, I could make a list of all the things he can not do and all of the milestones that he should've met long ago. But, I'd rather not. It makes me too sad as a mommy to think about what he should be doing right now, and I don't want to be sad. I want to be thankful for my special little boy.
One last note, we learned Wednesday, the day before his birthday, that none of us match him for a bone marrow transplant. We're going to save Emerson's cord blood in July and test it, but the doctor from Cincinnati is going to go ahead and begin accessing the National Bone Marrow Registry. Please pray that we will be able to find a match for his transplant. Of all the things that I worry about with Avery, his health issues scare me more than anything. I would love to see him get a successful transplant and close the door to that scary part of his life.
Friday, April 8, 2011
A Few Words on My 30th Birthday
I never thought I'd see the day when I turned 30. That may sound strange, but seriously, I never imagined life outside of my 20's. Everyone else can age, but me, I'm supposed to be ageless! But when I opened my eyes this morning, the first thought that popped in my mind was, "Yikes! I'm 30 now!" Actually, most days I feel every day of my age, and sometimes I feel more like a 70-year-old.
So what's going on in my world at 30?? I know that someday I'll reminisce about "back when I was 30," so I thought I might just take a few moments to journal about what I'm up to these days.
Well, I guess first and foremost, I'm a mom to two little boys that keep me on my toes. I spend most of my time and energy taking care of them, playing with them, and cleaning up their messes. I spend a lot of my time worrying about whether or not I'm being a good enough mommy or if I'm instilling in them all of the important things that I want to pass on to my children. And last but not least, I spend most of my money buying clothes, toys, and anything else they might need or want. I love being Bryson and Avery's mommy, and despite feeling a little frazzled...well, a lot frazzled sometimes, I wouldn't have it any other way.
Also, I'm expecting a third little bundle of joy in July. This time, we're having a girl, so I'm slowly awakening to the world of all things pink. Some folks might prefer more gender neutral clothing and decor, but I figure I'm finally getting a girl, so I might as well enjoy it!! Especially since according to my husband, the Hoskins family is going to be complete after this baby. One would think that with me being a girl myself and having two sisters this would come easy for me, but honestly, switching gears has been kind of tough. I've always looked longingly at the adorable girls clothing hanging on the racks across the aisle from the boys' department where I hang out. But now that I actually have a reason to shop on that side, I'm having a hard time not getting overwhelmed or wondering what I'll really need. It's kind of like starting all over. I am so excited about meeting our little Emerson Rose.
I feel like over the last few years, I have grown in my Christian walk. Growing older and life in general has led me to depend upon the Lord for strength each day. My greatest desires are to continue to grow and to have the faith that I need to get prayers answered. I want to be an example for my family that they may see Jesus and grow to love him. I hope that this 30th year of my life only brings me closer to God.
I do have a lot of worries and anxieties at this point in my life. I worry about the wrinkles and bags around my eyes, and I find myself investing more money in creams that promise amazing results. I won't even discuss my weight, since it's pretty horrendous how large I am right now. Hopefully, I can work on that after July. I worry about not spending enough time with my husband or being the wife that I should be. I have this mental image of what I should be able to accomplish, how my house should look, and how my cooking should taste, but unfortunately, I fall SO short of these fantastic images. And yes, I already mentioned it, I worry about my kids. I worry about if I'm disciplining them correctly, spending enough quality time with them, teaching them manners, feeding them balanced meals, and making the most of every minute I have with them while they're small. Yes, I know, it sounds like I hold unrealistic expectations for myself or suffer from some obsessive compulsive disorder. Even though I know that sometimes we have to be satisfied with good enough, I can't keep myself from worrying!
One of my biggest concerns at this point in my life is Avery's medical conditions. I can't help but worry about what the future holds for him and us. I just can't imagine life without him, and I'm absolutely not even considering that. I feel so badly that he has to endure so much, and our constant attention to Avery's special needs does add some stress to our family. I try really hard to balance time with Bryson. Yes, Avery's health is a priority, but Phillip and I try to take turns spending the night with Bryson during hospitalizations or taking time away from appointments to have some quality time with him. Right now Avery's condition is more serious than ever and we're waiting on some test results and praying for direction in his treatment. I'm praying that this 30th year brings healing for Avery in any way we can get it.
My personal time is pretty much non-existent, and teaching has taken a back burner to raising my family. I haven't taught at all the last two terms at Sinclair. We are so blessed that Phillip has a job, and I'm able to be a full-time mom.
That's pretty much my life in a nut shell at 30. I'm sure this post will not make anyone envious, but I have to say that I am so happy and blessed (and of course, a little stressed).
So what's going on in my world at 30?? I know that someday I'll reminisce about "back when I was 30," so I thought I might just take a few moments to journal about what I'm up to these days.
Well, I guess first and foremost, I'm a mom to two little boys that keep me on my toes. I spend most of my time and energy taking care of them, playing with them, and cleaning up their messes. I spend a lot of my time worrying about whether or not I'm being a good enough mommy or if I'm instilling in them all of the important things that I want to pass on to my children. And last but not least, I spend most of my money buying clothes, toys, and anything else they might need or want. I love being Bryson and Avery's mommy, and despite feeling a little frazzled...well, a lot frazzled sometimes, I wouldn't have it any other way.
Also, I'm expecting a third little bundle of joy in July. This time, we're having a girl, so I'm slowly awakening to the world of all things pink. Some folks might prefer more gender neutral clothing and decor, but I figure I'm finally getting a girl, so I might as well enjoy it!! Especially since according to my husband, the Hoskins family is going to be complete after this baby. One would think that with me being a girl myself and having two sisters this would come easy for me, but honestly, switching gears has been kind of tough. I've always looked longingly at the adorable girls clothing hanging on the racks across the aisle from the boys' department where I hang out. But now that I actually have a reason to shop on that side, I'm having a hard time not getting overwhelmed or wondering what I'll really need. It's kind of like starting all over. I am so excited about meeting our little Emerson Rose.
I feel like over the last few years, I have grown in my Christian walk. Growing older and life in general has led me to depend upon the Lord for strength each day. My greatest desires are to continue to grow and to have the faith that I need to get prayers answered. I want to be an example for my family that they may see Jesus and grow to love him. I hope that this 30th year of my life only brings me closer to God.
I do have a lot of worries and anxieties at this point in my life. I worry about the wrinkles and bags around my eyes, and I find myself investing more money in creams that promise amazing results. I won't even discuss my weight, since it's pretty horrendous how large I am right now. Hopefully, I can work on that after July. I worry about not spending enough time with my husband or being the wife that I should be. I have this mental image of what I should be able to accomplish, how my house should look, and how my cooking should taste, but unfortunately, I fall SO short of these fantastic images. And yes, I already mentioned it, I worry about my kids. I worry about if I'm disciplining them correctly, spending enough quality time with them, teaching them manners, feeding them balanced meals, and making the most of every minute I have with them while they're small. Yes, I know, it sounds like I hold unrealistic expectations for myself or suffer from some obsessive compulsive disorder. Even though I know that sometimes we have to be satisfied with good enough, I can't keep myself from worrying!
One of my biggest concerns at this point in my life is Avery's medical conditions. I can't help but worry about what the future holds for him and us. I just can't imagine life without him, and I'm absolutely not even considering that. I feel so badly that he has to endure so much, and our constant attention to Avery's special needs does add some stress to our family. I try really hard to balance time with Bryson. Yes, Avery's health is a priority, but Phillip and I try to take turns spending the night with Bryson during hospitalizations or taking time away from appointments to have some quality time with him. Right now Avery's condition is more serious than ever and we're waiting on some test results and praying for direction in his treatment. I'm praying that this 30th year brings healing for Avery in any way we can get it.
My personal time is pretty much non-existent, and teaching has taken a back burner to raising my family. I haven't taught at all the last two terms at Sinclair. We are so blessed that Phillip has a job, and I'm able to be a full-time mom.
That's pretty much my life in a nut shell at 30. I'm sure this post will not make anyone envious, but I have to say that I am so happy and blessed (and of course, a little stressed).
Thursday, March 24, 2011
Update on Avery
Today, Avery received his second platelet transfusion in 9 days. His platelets also reached a new low of 11. For those of you who don't know, normal range is between 150 and 450 (and platelets are measured in thousands). Thanks to a blood transfusion last Thursday, Avery's hemoglobin was great today (13), but his white count was low. So, it seems we are approaching the day that we have dreaded but suspected may come.
Avery's initial diagnosis of Diamond Blackfan Anemia isn't consistent with all of his other symptoms, and it seems he could be developing Aplastic Anemia. We are still waiting for test results on Avery's bone marrow that we sent to Johns Hopkins. However, regardless of diagnosis, as Avery's hematologist said today, it is time to do something else. Our doctor had thought about trying IV IG therapy to treat platelets, which in some cases can extend the life of a platelet cell, but since it seems Avery isn't making any platelets, it isn't likely that it would have any effect on him. So, we discussed a couple of options today.
The first possibility is immuno-suppression therapy. Basically, Avery would receive chemo-like medication that would weaken his immune system and high doses of steroids in hopes that his bone marrow would somehow reset itself and start producing cells normally. Our doctor said that it works about 50% of the time, but in most cases, it isn't a long-term solution and that symptoms return. It also carries high risks of infection, due to suppressing the immune system, and reactions to the different medications he would be given. Also, his blood counts would drop before any improvement might be seen.
The second possibility is a bone marrow transplant. A BMT requires longer stays in the hospital and/or daily visits to the hospital for treatments (6 weeks to 6 months, depending on complications) and a compatible donor must be found. The best results come from sibling matches, so Tuesday, Phillip, Bryson, and I are going to have the blood work drawn for the HLA matching. If by chance one of us, most likely Bryson, would be a complete match, then we would need to decide whether to even do the immuno-suppression therapy. It might be better to just move to the BMT option. If none of us match, we will need to wait until Miss Emerson Rose appears in July. We are making arrangements to have her cord blood collected and tested for a match. If she isn't a match, extended family and the donor registry would be accessed. However, our doctor thinks we need to do something fairly quickly. So, if Bryson isn't a match, we may have to go ahead with the immuno-suppression therapy to buy us some time until a match can be found. Of course, there are many risks with BMT as well, but it also offers the best results if successful.
The HLA results will take a couple of weeks to come back. We are scheduled to meet with Dr. Harris, the Senior Bone Marow Failure Specialist from Cincinnati Children's Hospital. Dayton does not do transplants, so if it comes to that, we will most likely be going to Cincy. We have met Dr. Harris before, and he is very knowledgeable in issues of bone marrow and transplanting. We are hoping that he will be able to give us some advice on what to do or offer us more information.
I know that many of you have kept our family, specifically Avery, in your prayers. But I'm now asking that you pray that we will make the best decision for our son. We're down to very few options, all with risks, and we want to do what is in Avery's best interest. I also would appreciate if you would pray specifically that Bryson would be a match, and if not, that Emerson will be. They are the most likely compatible donors. We sincerely appreciate your concern and prayers for our family.
Bethany
Avery's initial diagnosis of Diamond Blackfan Anemia isn't consistent with all of his other symptoms, and it seems he could be developing Aplastic Anemia. We are still waiting for test results on Avery's bone marrow that we sent to Johns Hopkins. However, regardless of diagnosis, as Avery's hematologist said today, it is time to do something else. Our doctor had thought about trying IV IG therapy to treat platelets, which in some cases can extend the life of a platelet cell, but since it seems Avery isn't making any platelets, it isn't likely that it would have any effect on him. So, we discussed a couple of options today.
The first possibility is immuno-suppression therapy. Basically, Avery would receive chemo-like medication that would weaken his immune system and high doses of steroids in hopes that his bone marrow would somehow reset itself and start producing cells normally. Our doctor said that it works about 50% of the time, but in most cases, it isn't a long-term solution and that symptoms return. It also carries high risks of infection, due to suppressing the immune system, and reactions to the different medications he would be given. Also, his blood counts would drop before any improvement might be seen.
The second possibility is a bone marrow transplant. A BMT requires longer stays in the hospital and/or daily visits to the hospital for treatments (6 weeks to 6 months, depending on complications) and a compatible donor must be found. The best results come from sibling matches, so Tuesday, Phillip, Bryson, and I are going to have the blood work drawn for the HLA matching. If by chance one of us, most likely Bryson, would be a complete match, then we would need to decide whether to even do the immuno-suppression therapy. It might be better to just move to the BMT option. If none of us match, we will need to wait until Miss Emerson Rose appears in July. We are making arrangements to have her cord blood collected and tested for a match. If she isn't a match, extended family and the donor registry would be accessed. However, our doctor thinks we need to do something fairly quickly. So, if Bryson isn't a match, we may have to go ahead with the immuno-suppression therapy to buy us some time until a match can be found. Of course, there are many risks with BMT as well, but it also offers the best results if successful.
The HLA results will take a couple of weeks to come back. We are scheduled to meet with Dr. Harris, the Senior Bone Marow Failure Specialist from Cincinnati Children's Hospital. Dayton does not do transplants, so if it comes to that, we will most likely be going to Cincy. We have met Dr. Harris before, and he is very knowledgeable in issues of bone marrow and transplanting. We are hoping that he will be able to give us some advice on what to do or offer us more information.
I know that many of you have kept our family, specifically Avery, in your prayers. But I'm now asking that you pray that we will make the best decision for our son. We're down to very few options, all with risks, and we want to do what is in Avery's best interest. I also would appreciate if you would pray specifically that Bryson would be a match, and if not, that Emerson will be. They are the most likely compatible donors. We sincerely appreciate your concern and prayers for our family.
Bethany
Thursday, March 17, 2011
Enough Mercy for Me
Lamentations 3:22-23 (King James Version)
22It is of the LORD's mercies that we are not consumed, because his compassions fail not.
23They are new every morning: great is thy faithfulness.
Aren't you glad for God's mercy and compassion? I'll be honest, most days I feel like I must exhaust my allotted supply of mercy for the day with all of my failures, faults, worries, questions, and prayers. I'm a pretty high maintenance child of God. But I've been reminded lately and have found it encouraging to remember that God's mercies are brand new every morning. So when I roll out of the bed (and these days, I am rolling!) and my feet touch the floor, regardless of how much of God's mercy and compassion I consumed the day before, there's a fresh supply waiting for whatever the day brings.
This week has been another particularly stressful week, and I'll spare you the details because I don't want to complain. But I have to admit, I've been relying heavily on the grace of God to keep me sane. A wise friend of mine has reminded me that the best way to cope is to take it one day at a time. And if I take it one day at a time and rely completely on the mercy of God, then I should be able to make it!
One of the songs I have on my blog play list is "Forever God is faithful; Forever God is strong; Forever God is with us; Forever, and ever..."
What a comforting thought! God's mercies are new every morning and His grace is sufficient. Thank you, Jesus.
May God bless!
Bethany
22It is of the LORD's mercies that we are not consumed, because his compassions fail not.
23They are new every morning: great is thy faithfulness.
Aren't you glad for God's mercy and compassion? I'll be honest, most days I feel like I must exhaust my allotted supply of mercy for the day with all of my failures, faults, worries, questions, and prayers. I'm a pretty high maintenance child of God. But I've been reminded lately and have found it encouraging to remember that God's mercies are brand new every morning. So when I roll out of the bed (and these days, I am rolling!) and my feet touch the floor, regardless of how much of God's mercy and compassion I consumed the day before, there's a fresh supply waiting for whatever the day brings.
This week has been another particularly stressful week, and I'll spare you the details because I don't want to complain. But I have to admit, I've been relying heavily on the grace of God to keep me sane. A wise friend of mine has reminded me that the best way to cope is to take it one day at a time. And if I take it one day at a time and rely completely on the mercy of God, then I should be able to make it!
One of the songs I have on my blog play list is "Forever God is faithful; Forever God is strong; Forever God is with us; Forever, and ever..."
What a comforting thought! God's mercies are new every morning and His grace is sufficient. Thank you, Jesus.
May God bless!
Bethany
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