The days just keep moving along, even though it seems at a snail's pace, and I must say, considering everything they're pumping into his little body, Avery is doing awesome! He's had some belly issues and been a little grumpy and tired, but that's not unusual. His blood counts seem to be dropping a little more quickly too, but killing cells is the chemotherapy's job, so that is normal too. The little guy has pulled his ng tube out twice this week (both on my husband's watch...ahem...:-]), and is going to have it put back again today.
As I watch those toxic chemicals run through the little tube into Avery's central line, I feel kind of sick that we're actually doing this to him. Of course I know it's in his best interest, but that doesn't make it much easier. I've been holding my breath, just waiting to see how he reacts. He does have another day of the current chemo, and then one last kind of chemo to take this week. It's the bad stuff from what I hear. It is designed to wipe out any existing bone marrow or immune system leftover from the previous two rounds of chemo before the new stem cells are infused.
This Friday, the 28th, is the big day! That is when Avery will receive his donor stem cells, which will hopefully graft quickly into Avery's bone marrow and begin producing healthy cells for him. Because of privacy policies in place, we're not allowed to know much about the donor. All we know is that he is a 20-year old male, and one last piece of information that was red-flagged during the evaluation process is that he spent 4 days in juvenile detention. This wasn't a disqualifying factor, but it was something they passed on to us. I thought it was rather humorous, and I'm so thankful that somewhere in the world a 20-year old ex-juvie is giving my son a chance to live! About a year post transplant, there may be an opportunity to correspond or meet.
Phillip and I have been rotating in and out based on Phillip's work schedule and our other kids. It's tough; we have literally been passing each other and communicating via quick phone conversations and texts. It feels strange for me to leave my sick boy at the hospital, but we're trying to provide some stability for Bryson and Emerson too...mostly Bryson. He's having a rough time with all of this and asks daily when Avery is coming home. Avery has been in and out of the hospital all of his life, so Bryson is used to that, but this extended stay and not being able to see him is different. He gets teary-eyed even talking about Avery, and he told me last night that I'm not allowed to push him on the swing until Avery comes home. I'm not sure if that's his way of having something to look forward to or what. For me it's very odd doing "normal" things right now. Yesterday, my cabinets and fridge were practically empty, so I loaded up Bryson and Emerson and went to the grocery store. I bought necessities, but honestly, I didn't feel like being there and I felt like I was neglecting Avery by being at the grocery store when he's in the hospital. I know, that's weird, but everything is so mixed up right now. I feel disconnected to Bryson and Emerson after spending a few days in the hospital. My sister hands me Em, and I think, "Okay, what does she need now when she's fussing?" This is all part of the process, and I know we'll get through it. It's just difficult at the moment.
We are literally taking it one day at a time, one hurdle at a time, one situation at a time. Please continue to pray that this last round of chemo won't be as bad as what they say, and of course, that they new cells will start working quickly. I appreciate each and every prayer that so many of our friends and family are sending up for us!
Love,
Bethany
Sunday, October 23, 2011
Sunday, October 16, 2011
Day -12: A Peaceful Day
I don't really know where to start here. It's amazing how one day in a hospital seems to equal about a week anywhere else -- especially when you're alone with a sick little one. Watching a child suffer is so hard. It's even worse when he has no idea what is going on, and I feel incredibly guilty looking into his big, tear-filled eyes that seem to say, "Why are you doing this to me?" I've spent so much time standing by his bed singing all the songs that normally make him smile but now seem to have no effect, and trying to hold his hand or rub his head when he just pulls away like he doesn't want to be touched. I've also become quite good about speaking up for my little guy when I think he's in pain. Yes, I'm the high-maintenance mom who asks for numbing cream before his chemo injections, asks for Tylenol for even a low grade fever that the hospital would prefer not to treat, and I have discovered that morphine is GREAT! I just want this to be as painless as possible.
I guess at this point it's the little victories we have to celebrate along the way and the outcome we have to focus on. Last night as he was crying and rolling in the bed, I didn't know what to do but pray for him. I just have been asking God everyday to ease his pain and lessen the side effects all these drugs are having on his body. And today God blessed us with an amazingly peaceful day. He has smiled at all the old songs and tricks that he usually does, and I got him out of bed and we danced around the room a little to Barney tunes, and he actually giggled. That sure brightened my day! He's becoming a bit of a couch potato...or I guess more appropriately, a crib potato, since there's not a whole lot to do. I know that the sickness will return soon, but I'm thankful that God gave us today.
I've just been overwhelmed by everyone's concern for Avery. We have had so many people let us know in various ways that they are praying for him. I know that prayer is what sustains us when we can't go on our own strength. Thank you to all of you who pray, and please keep it up!
--Bethany
I guess at this point it's the little victories we have to celebrate along the way and the outcome we have to focus on. Last night as he was crying and rolling in the bed, I didn't know what to do but pray for him. I just have been asking God everyday to ease his pain and lessen the side effects all these drugs are having on his body. And today God blessed us with an amazingly peaceful day. He has smiled at all the old songs and tricks that he usually does, and I got him out of bed and we danced around the room a little to Barney tunes, and he actually giggled. That sure brightened my day! He's becoming a bit of a couch potato...or I guess more appropriately, a crib potato, since there's not a whole lot to do. I know that the sickness will return soon, but I'm thankful that God gave us today.
I've just been overwhelmed by everyone's concern for Avery. We have had so many people let us know in various ways that they are praying for him. I know that prayer is what sustains us when we can't go on our own strength. Thank you to all of you who pray, and please keep it up!
--Bethany
Friday, October 14, 2011
Day -15 and Day -14
Well, yesterday was the day that Avery moved into his temporary home in the Bone Marrow Unit at Cincinnati Children's. I dressed him in his new Elmo pj's (thanks, Aaron & Alicia!), packed his portable dvd player and Barney dvd, his Woody toy that he just loves to pull the string on, and a few changes of clothes. As we were leaving the house, Avery was grinning and clapping. He snoozed on the way there, and when we got him out in the parking garage, he started his loud, happy scream. He just has no idea what is in store for him, and I'm partly glad of that.
Phillip and I aren't so cheerful about the whole thing. It seemed appropriate that the weather turned gloomy and grey yesterday, and as we were traveling to Cincy, it was raining. That's pretty much how we felt. We're just both doing what we have to do and trying to make the best of it, but we're pretty anxious about the whole thing and still in a little bit of shock that it has come to this. Yesterday, Phillip and I were talking about all the people who called, texted, or posted on FB that they were praying for Avery. We just appreciate that so much.
We got Avery settled into his room, and the nurses had to do a few things on his admission, like a nasal swab and dressing and cap change on his central line. He just smiled through it all, and the nurses kept commenting how awesome he was doing. I'm not sure if I should be proud or not, but they also said he had the best nasal swab they've ever done. Apparently, most kids scream their heads off for that one. Not Ave. Piece of cake for him!
I came home last night and Phillip stayed since he was off today. But he is working the weekend, so I'm heading back tonight for the next 3 days. I'll be spending my first night away from my little Emerson, and I'm dreading it for sure. Plus, I'm sure Avery is going to lose his cheerful attitude soon, since they're going to place an ng tube today because of his esophageal problems, and he'll probably start feeling the effects of his chemo in the next day or two. This first kind of chemo he gets for 4 or 5 days is supposed to be the easiest...if there's such thing as "easy" chemo.
In the BMT unit, they count toward the stem cell infusion kind of like a space shuttle launch. So yesterday was day - 16 and today is day - 15. As the count down continues, Avery will feel sicker and the risks of infection will be greater. But, one day at a time, sweet Jesus, is all I'm asking. When I look back over the last few years at what all God has brought us through, my faith feels a little stronger. Each sickness, diagnosis, procedure, has slowly escalated to this climactic event, but I know that He will NEVER leave us or forsake us. My mom used to tell me when I was little and afraid that God sent his angels to watch over us, and that they were even in the room with me. That used to make me feel calm to know that even though my eyes couldn't see it, God was protecting me. I can just imagine Avery's little room filled with guardian angels and God Himself looking down from Heaven at my little boy in his Elmo pjs lying in a hospital bed.
Thanks so much for your prayers for my family!
Blessings to you all,
Bethany
Phillip and I aren't so cheerful about the whole thing. It seemed appropriate that the weather turned gloomy and grey yesterday, and as we were traveling to Cincy, it was raining. That's pretty much how we felt. We're just both doing what we have to do and trying to make the best of it, but we're pretty anxious about the whole thing and still in a little bit of shock that it has come to this. Yesterday, Phillip and I were talking about all the people who called, texted, or posted on FB that they were praying for Avery. We just appreciate that so much.
We got Avery settled into his room, and the nurses had to do a few things on his admission, like a nasal swab and dressing and cap change on his central line. He just smiled through it all, and the nurses kept commenting how awesome he was doing. I'm not sure if I should be proud or not, but they also said he had the best nasal swab they've ever done. Apparently, most kids scream their heads off for that one. Not Ave. Piece of cake for him!
I came home last night and Phillip stayed since he was off today. But he is working the weekend, so I'm heading back tonight for the next 3 days. I'll be spending my first night away from my little Emerson, and I'm dreading it for sure. Plus, I'm sure Avery is going to lose his cheerful attitude soon, since they're going to place an ng tube today because of his esophageal problems, and he'll probably start feeling the effects of his chemo in the next day or two. This first kind of chemo he gets for 4 or 5 days is supposed to be the easiest...if there's such thing as "easy" chemo.
In the BMT unit, they count toward the stem cell infusion kind of like a space shuttle launch. So yesterday was day - 16 and today is day - 15. As the count down continues, Avery will feel sicker and the risks of infection will be greater. But, one day at a time, sweet Jesus, is all I'm asking. When I look back over the last few years at what all God has brought us through, my faith feels a little stronger. Each sickness, diagnosis, procedure, has slowly escalated to this climactic event, but I know that He will NEVER leave us or forsake us. My mom used to tell me when I was little and afraid that God sent his angels to watch over us, and that they were even in the room with me. That used to make me feel calm to know that even though my eyes couldn't see it, God was protecting me. I can just imagine Avery's little room filled with guardian angels and God Himself looking down from Heaven at my little boy in his Elmo pjs lying in a hospital bed.
Thanks so much for your prayers for my family!
Blessings to you all,
Bethany
Sunday, October 9, 2011
Our Life is About to Change
It's Sunday morning, and I wish I were getting ready for church. But instead, I'm sitting here typing and mentally going through my to-do list for the day. Phillip and Bryson made a quick trip to Indiana, so I'm home with Emerson and Avery. Taking them to church by myself would be difficult since neither of them walks, and they both require bottles and diapers. I could probably get us there with the help of my double stroller, but once in a pew, if they both require attention, I know I couldn't carry them both at the same time. So, I'm home today. I'm hoping to make the most of it by getting some house work done.
I'm sure you're tired of hearing it by now, but our days of normalcy (if you consider our current lifestyle "normal") is running out. If nothing happens, next Thursday is admission day to the Bone Marrow Transplant Unit, and then Friday the chemo begins. I got the schedule for the first couple of weeks while Avery is there, and it's like 5 days of one kind of chemo, a day of rest, then 7 days of another kind of chemo, then a day of rest, then 1 day of the heaviest chemo that will make him the sickest, then two days of rest, and finally the stem cell infusion. We've been told that by about week 2 of chemo, Avery is going to be very sick with vomiting, diarrhea, mouth sores, possible fever, and just feel yucky overall. He will basically have no immune system. I met with the transplant doctor on Friday to go over the consent and officially sign it, and if I weren't freaked out enough before reading it, I certainly was afterward! The words "risk of death" and "fatality" were in there just too many times. Not to mention organ damage and changes in the central nervous system. She told us that any illness or infection can be life threatening during this process, so isolation and protection from germs is critical. Lucky for us, cold and flu season is just starting. :( Dr. Mehta said that mild to moderate illness can be treated, but anything that becomes more severe will lead to Avery being moved to ICU, and could cause death. I know that they have to lay it all out and give us every possible risk involved, but when it's YOUR child, even those unlikely risks are scary. With each day that passes, I feel my anxiety level rising just a little. I lay in bed and think, "Can we do this?" "Can Avery handle this?" "What if it doesn't work?" In some ways, Avery is such a strong little boy, but in other ways, he's incredibly fragile.
After the stem cells are infused, it's a matter of waiting for them to graft into his body and start producing cells on their own. This time is probably the most critical, as most patients develop some level of Graft vs Host disease as the new cells realize they're in the wrong body and attack it. Again, mild to moderate can be treated, but severe GVH can be life threatening. If Avery responds well, and the new cells start grafting and producing some cells, after about a month or so, he will be moved to the Ronald McDonald House across the street from the hospital. We will stay in an isolation transplant suite and go to the hospital every day for check ups, transfusions, and occasional admissions depending on his blood counts. We were told to expect to be at the McDonald House for at least 100 days. If Avery's new marrow starts producing cells and his health is stable, we can eventually come home and just drive to Dayton Hem/Onc clinic daily for check ups there.
Phillip and I both were feeling a little overwhelmed the other night after reading through all the paperwork they gave us. After talking about it for awhile, we came to the conclusion that the only way we're going to be able to make it through this is to keep our eyes focused on the end result. We have to believe that no matter how bad things get, and the doctors keep reminding us that things are going to get quite bad for awhile, that he will get better. In a year, Avery will hopefully be living a life free of transfusions and weekly blood counts.
And, by the way, we ARE going to take a vacation as soon as Avery is healthy enough to go. :) I told Phillip that I don't care what strings we have to pull to make it happen, we need it. With Avery's health being so bad over the last year, we've not been able to go very far. So visions of my 3 kids, husband, and me sitting on the beach relaxing are also keeping me going!
So I'm going to try to enjoy the next few days with us all under one roof and get us all packed to be going different places. As always, we sincerely appreciate your prayers for the Hoskins family!
~Bethany
I'm sure you're tired of hearing it by now, but our days of normalcy (if you consider our current lifestyle "normal") is running out. If nothing happens, next Thursday is admission day to the Bone Marrow Transplant Unit, and then Friday the chemo begins. I got the schedule for the first couple of weeks while Avery is there, and it's like 5 days of one kind of chemo, a day of rest, then 7 days of another kind of chemo, then a day of rest, then 1 day of the heaviest chemo that will make him the sickest, then two days of rest, and finally the stem cell infusion. We've been told that by about week 2 of chemo, Avery is going to be very sick with vomiting, diarrhea, mouth sores, possible fever, and just feel yucky overall. He will basically have no immune system. I met with the transplant doctor on Friday to go over the consent and officially sign it, and if I weren't freaked out enough before reading it, I certainly was afterward! The words "risk of death" and "fatality" were in there just too many times. Not to mention organ damage and changes in the central nervous system. She told us that any illness or infection can be life threatening during this process, so isolation and protection from germs is critical. Lucky for us, cold and flu season is just starting. :( Dr. Mehta said that mild to moderate illness can be treated, but anything that becomes more severe will lead to Avery being moved to ICU, and could cause death. I know that they have to lay it all out and give us every possible risk involved, but when it's YOUR child, even those unlikely risks are scary. With each day that passes, I feel my anxiety level rising just a little. I lay in bed and think, "Can we do this?" "Can Avery handle this?" "What if it doesn't work?" In some ways, Avery is such a strong little boy, but in other ways, he's incredibly fragile.
After the stem cells are infused, it's a matter of waiting for them to graft into his body and start producing cells on their own. This time is probably the most critical, as most patients develop some level of Graft vs Host disease as the new cells realize they're in the wrong body and attack it. Again, mild to moderate can be treated, but severe GVH can be life threatening. If Avery responds well, and the new cells start grafting and producing some cells, after about a month or so, he will be moved to the Ronald McDonald House across the street from the hospital. We will stay in an isolation transplant suite and go to the hospital every day for check ups, transfusions, and occasional admissions depending on his blood counts. We were told to expect to be at the McDonald House for at least 100 days. If Avery's new marrow starts producing cells and his health is stable, we can eventually come home and just drive to Dayton Hem/Onc clinic daily for check ups there.
Phillip and I both were feeling a little overwhelmed the other night after reading through all the paperwork they gave us. After talking about it for awhile, we came to the conclusion that the only way we're going to be able to make it through this is to keep our eyes focused on the end result. We have to believe that no matter how bad things get, and the doctors keep reminding us that things are going to get quite bad for awhile, that he will get better. In a year, Avery will hopefully be living a life free of transfusions and weekly blood counts.
And, by the way, we ARE going to take a vacation as soon as Avery is healthy enough to go. :) I told Phillip that I don't care what strings we have to pull to make it happen, we need it. With Avery's health being so bad over the last year, we've not been able to go very far. So visions of my 3 kids, husband, and me sitting on the beach relaxing are also keeping me going!
So I'm going to try to enjoy the next few days with us all under one roof and get us all packed to be going different places. As always, we sincerely appreciate your prayers for the Hoskins family!
~Bethany
Saturday, October 1, 2011
Why Me?...Why Not?
Have you ever thought, "Why me?"
I have.
I've caught myself falling into that frame of mind occasionally. After much thought and prayer, I can answer that question with all kinds of reasons, including scriptures from the Bible. I probably should ask myself, "Why not me?"
Have you ever noticed how people blame God sometimes for bad things that happen in life but often fail to praise Him for the good things that happen in life?
I have.
I'm guilty of not thanking God enough for the good things He has done in my life, because every good and perfect gift does come from God, after all. And the bad things that happen, God promised that he would work them for my good.
There are people all over the world facing adversity, many much greater than mine. As my husband preached recently, I want to look at my opposition as an opportunity for God to work.
I'm reminded of a book I read years ago, The Hiding Place, by Corrie ten Boom. She and her entire family were taken prisoner by the Nazi regime for hiding Jews in their home. They were separated and sent to concentration camps where they were forced into hard labor, starved, and treated worse than animals. During her stay, Corrie struggled with anger at the injustice she saw and questioned why God would allow such pain. Corrie's sister, Betsie, who though was physically weaker was a woman of unshakable faith, took every opportunity inside the camp to share the love of Jesus and, although she died there, even planned how she would use the experience to reach others on her release. Some of her last words to Corrie before dying in that terrible place of torture were these: "We must tell them that there is no pit so deep that He is not deeper still. They will listen to us, Corrie, because we have been here."
You know, we can tell others of God's keeping power, deliverance, healing, and strength, but how much more of a testimony when we have been there...when we have experienced God's keeping power, deliverance, healing, and strength right in the middle of the greatest trial of our life.
Here I am, believing with all my heart that God is going to be faithful in my trial. I would never equate the adversities I have faced in life with being imprisoned in a concentration camp, but when I'm seeking an answer, I'd love to be able to have Betsie's attitude. God's love is deeper than any pit, and someday others will listen to us because we have been there.
God bless,
Bethany
I have.
I've caught myself falling into that frame of mind occasionally. After much thought and prayer, I can answer that question with all kinds of reasons, including scriptures from the Bible. I probably should ask myself, "Why not me?"
Have you ever noticed how people blame God sometimes for bad things that happen in life but often fail to praise Him for the good things that happen in life?
I have.
I'm guilty of not thanking God enough for the good things He has done in my life, because every good and perfect gift does come from God, after all. And the bad things that happen, God promised that he would work them for my good.
There are people all over the world facing adversity, many much greater than mine. As my husband preached recently, I want to look at my opposition as an opportunity for God to work.
I'm reminded of a book I read years ago, The Hiding Place, by Corrie ten Boom. She and her entire family were taken prisoner by the Nazi regime for hiding Jews in their home. They were separated and sent to concentration camps where they were forced into hard labor, starved, and treated worse than animals. During her stay, Corrie struggled with anger at the injustice she saw and questioned why God would allow such pain. Corrie's sister, Betsie, who though was physically weaker was a woman of unshakable faith, took every opportunity inside the camp to share the love of Jesus and, although she died there, even planned how she would use the experience to reach others on her release. Some of her last words to Corrie before dying in that terrible place of torture were these: "We must tell them that there is no pit so deep that He is not deeper still. They will listen to us, Corrie, because we have been here."
You know, we can tell others of God's keeping power, deliverance, healing, and strength, but how much more of a testimony when we have been there...when we have experienced God's keeping power, deliverance, healing, and strength right in the middle of the greatest trial of our life.
Here I am, believing with all my heart that God is going to be faithful in my trial. I would never equate the adversities I have faced in life with being imprisoned in a concentration camp, but when I'm seeking an answer, I'd love to be able to have Betsie's attitude. God's love is deeper than any pit, and someday others will listen to us because we have been there.
God bless,
Bethany
Tuesday, September 20, 2011
Pressing On
Surviving. That's how I'd describe the last couple of weeks. Picking up one foot and placing it in front of the other, not looking back, and not looking too far ahead either...that's been my survival tactic.
The prep for the actual bone marrow transplant is designed to be so rigorous and exhausting that I believe part of the mission is to push the families to the point where they say, "Enough already! Let's just get this thing started!" Of course, the other mission of all this testing is to check out every single aspect of the patient, big and small, so that there are absolutely no surprises when the transplant process begins. By next week, the transplant team will know absolutely everything medically possible that they could know about Avery Weston Hoskins!
There have been a few additions to the typical testing along the way. As is his style, Avery can't just do anything by the book; he has to be more complicated. So the first addition is a surgery this Thursday to remove his mediport and place a central line instead. For some reason, his port has migrated so that it is touching the side of his heart. The docs are concerned that it could cause an arrhythmia if not removed ASAP. The second addition is another surgery next week that the ENT felt was necessary considering Avery's swallowing issues. So, they're doing a triple scope (bronchoscopy, laryngoscopy, and endoscopy) and taking some biopsies, washings from the lungs, and placing some sort of probe. Both of these procedures will require staying overnight at the hospital and be somewhat painful. The donor has been activated, and if he/she is willing to donate, our doctor would like to admit Avery to the transplant unit the week of October 10th, and begin his preparative regimen of chemotherapy and immune suppressants.
I don't like living in survival mode. I feel like when I'm there, I don't take time to enjoy life. With the transplant looming ahead, we have been trying to break out of our routines to make some memories and have some quality time. Last weekend, we made a quick trip to Indiana, which may be the last of our family trips for a while. We've been trying to do some "ordinary" things that we've been too busy to work in recently, like going out for ice cream or a family trip to the park on a nice evening. We've been spending some extra time before bed with all five of us piled into our king size bed cuddling and talking.
We did take time to capture Emerson's first bath with her brothers. Avery loves his bath time, and he thinks the more the merrier!
Avery thinks his big brother hung the moon! Bryson says Avery is his best friend. A couple of mornings ago, he said, "I think Avery had a bad dream last night. He rolled on my side of the bed and laid on my belly, so I just let him sleep on my belly so he wouldn't be scared." Here they are wrestling, which of course, Avery thoroughly enjoyed.
It's easy to get discouraged and feel overwhelmed. But just when I think I've had all I can take, I remember how many people all over the country are sending up prayers for Avery. His name must be echoing in Heaven, and I know that God is mindful of us. I've had some sleepless nights lately that have driven me to my knees, which is probably where I need to be more often. In my times of prayer, God has been so close, and I get up feeling like maybe I CAN do this!
We went to church the other night, and Bro. Bennie preached a sermon about "One Thing" that matters. He talked about this race not being one of speed but of endurance. His main theme was about pressing our way to Heaven. It's not always easy, but when you get rid of all the distractions, it's all that really matters. I felt like that sermon was applicable to me in more than just one way. Pressing on and having patience and endurance is what is going to get me through this huge ordeal for our family and also get me through this life. I just have to keep my eyes fixed on the prize!
I don't want to fail to say THANK YOU to all of you who pray for our little Avery. We sincerely appreciate them!
Love to all,
Bethany
The prep for the actual bone marrow transplant is designed to be so rigorous and exhausting that I believe part of the mission is to push the families to the point where they say, "Enough already! Let's just get this thing started!" Of course, the other mission of all this testing is to check out every single aspect of the patient, big and small, so that there are absolutely no surprises when the transplant process begins. By next week, the transplant team will know absolutely everything medically possible that they could know about Avery Weston Hoskins!
There have been a few additions to the typical testing along the way. As is his style, Avery can't just do anything by the book; he has to be more complicated. So the first addition is a surgery this Thursday to remove his mediport and place a central line instead. For some reason, his port has migrated so that it is touching the side of his heart. The docs are concerned that it could cause an arrhythmia if not removed ASAP. The second addition is another surgery next week that the ENT felt was necessary considering Avery's swallowing issues. So, they're doing a triple scope (bronchoscopy, laryngoscopy, and endoscopy) and taking some biopsies, washings from the lungs, and placing some sort of probe. Both of these procedures will require staying overnight at the hospital and be somewhat painful. The donor has been activated, and if he/she is willing to donate, our doctor would like to admit Avery to the transplant unit the week of October 10th, and begin his preparative regimen of chemotherapy and immune suppressants.
I don't like living in survival mode. I feel like when I'm there, I don't take time to enjoy life. With the transplant looming ahead, we have been trying to break out of our routines to make some memories and have some quality time. Last weekend, we made a quick trip to Indiana, which may be the last of our family trips for a while. We've been trying to do some "ordinary" things that we've been too busy to work in recently, like going out for ice cream or a family trip to the park on a nice evening. We've been spending some extra time before bed with all five of us piled into our king size bed cuddling and talking.
We did take time to capture Emerson's first bath with her brothers. Avery loves his bath time, and he thinks the more the merrier!
Avery thinks his big brother hung the moon! Bryson says Avery is his best friend. A couple of mornings ago, he said, "I think Avery had a bad dream last night. He rolled on my side of the bed and laid on my belly, so I just let him sleep on my belly so he wouldn't be scared." Here they are wrestling, which of course, Avery thoroughly enjoyed.
It's easy to get discouraged and feel overwhelmed. But just when I think I've had all I can take, I remember how many people all over the country are sending up prayers for Avery. His name must be echoing in Heaven, and I know that God is mindful of us. I've had some sleepless nights lately that have driven me to my knees, which is probably where I need to be more often. In my times of prayer, God has been so close, and I get up feeling like maybe I CAN do this!
We went to church the other night, and Bro. Bennie preached a sermon about "One Thing" that matters. He talked about this race not being one of speed but of endurance. His main theme was about pressing our way to Heaven. It's not always easy, but when you get rid of all the distractions, it's all that really matters. I felt like that sermon was applicable to me in more than just one way. Pressing on and having patience and endurance is what is going to get me through this huge ordeal for our family and also get me through this life. I just have to keep my eyes fixed on the prize!
I don't want to fail to say THANK YOU to all of you who pray for our little Avery. We sincerely appreciate them!
Love to all,
Bethany
Monday, September 5, 2011
The Good, the Bad, and the CUTE
It's been an eventful couple of weeks since I last posted, which is why I haven't really had the time to write. Today is Labor Day, though, and we're celebrating by doing absolutely nothing. Well, Phillip is working, but the kids and I are just hanging out at the house catching up on some much needed play/rest/housework.
The Good...
Bryson's Jonah party was a hit. The decorations ended up being very cute, and he and his friends watched Veggie Tales Jonah movie, enjoyed their favor boxes (note to self: next time avoid the kazoos and whistles!), played games, and ate candy and cake.
Now that my big boy is 5, he started attending the Young Fives program at school. He was so excited to ride the bus and go to school. I waited until he was on the bus before I let my tears fall because I didn't want to worry him at all. After a week and a half of school, I emailed his teacher to see how he is doing. He tells me every day that he follows all the rules, but he's not the most reliable boy in the world. He also told me that he learned about whales and that one of his classmates brought cupcakes for her 78th birthday...both of which I highly doubt! So imagine my surprise when I received an email back from his teacher saying that Bryson listens well, follows all the rules, and in her words, "is a lovely student" to have in her class. Yay! Maybe there is hope for my little rascal after all!
More good news is that Avery has been doing the "side sit," which we worked hard on in therapy for a while. He resisted our attempts, but he is doing it in his own time and way. I also watched him pick up a t-shirt from the floor and place it on his head, almost like he was trying to put it on. I love watching my little boy do new things!
Emerson has been sleeping a little better. She is going about 5-6 hours per night before waking to eat. She even had one 8 hour night a couple of nights ago! That was fantastic! She is getting big so quickly, probably because she is quite the eater. We have fallen into a new normal with 3 kids, and it's not quite as difficult as I imagined. We've even gone out to eat quite a bit with them which is something Phillip and I thought we wouldn't be able to do anymore. Now going to the grocery store is a little tricky for me since Avery and Emerson both have to ride in the cart. I end up with hardly any room for groceries, but we're figuring it all out.
The Bad...
Hmmm. Where should I start? I guess the biggest, baddest thing we're dealing with right now is Avery's health. We met with the transplant team a couple of weeks ago in Cincinnati. They agreed that a transplant is necessary very soon for Avery since the transfusion schedule he has been on is not sustainable long-term. The BMT doctor said that until recently, they didn't transplant for Avery's condition (dyskeratosis congenita) and they still don't on some patients who are 10 or 15 and have already developed lung and liver disease, but with Avery being only 3 and no signs of those conditions yet, he is eligible. She has ordered some pretty major evaluations on him to check all of his main organs to see if they will be able to tolerate the chemotherapy. As long as nothing shows up in the next couple of weeks of testing that would disqualify him from a transplant, it looks like we'll be ready to begin within a month. Between now and then, Avery has a bone marrow aspirate/biopsy, kidney tests, liver/kidney ultrasounds, full body CT scan, ENT & neurology consultations, lung evaluation, and a few more tests I believe.
This is a time of my life that I never really believed we would have to come to. I dread it so badly for him and for our family. I get stressed easily, and just spending days in the hospital with Avery when he's sick stresses me out. Somehow I'm going to have to find the stamina to endure this for months, and from what we've been told, he will be sicker than he's ever been. The side effects of the chemo alone will be tough: mouth sores, vomiting, swelling/irritation of the feeding tubes, seizures, etc. So far, we've been told to expect to be inpatient at Cincinnati Children's Hospital for 4-6 weeks if all goes well, and then we'll be staying at the Ronald McDonald House for at LEAST 100 additional days to go to the hospital daily for check ups, treatments, transfusions, etc. While Avery's health is the priority for our family right now, I'm also dreading being separated from my kids and husband for so long. The isolation restrictions are pretty strict. I'll be away from my new baby and my 5 year old, both who I feel need me so badly in different ways. I'm trying to start preparing Bryson by talking about Avery being in the hospital. Last night, he said, "But I can't sleep in my bed when Avery isn't in it!" I'm also trying to plan ahead on how I'm going to get Emerson sleeping in her own room as soon as possible and trying to allow her to drink from a bottle so others can take care of her. I hate rushing these things to since Emerson is my last baby, I wish I could just enjoy these days. The only thing that keeps me from falling apart is thinking that this time next year, Avery should be doing better. I know that God won't put more on us than we can bear, but sometimes I think we've maxed out! But, I have an amazing husband, family, and more than that, a God that I know will sustain us. Please keep us in your prayers if you think of it!
The CUTE...
It just wouldn't be right for me to end this post on a negative note, not when I've got the chance to share more cuteness from the Hoskins clan!
This is what Bryson looks like almost everyday when he comes in from playing outside.
My adorable little Emerson Rose
Here is cuteness x 2! Emerson with her cousin, Ava.
My sweet little Avery. He came straight from the hospital infusion room to the party and still had plenty of smiles!
Bryson and Avery enjoying the last of their pool days! Even Phillip joined the fun.
Happy Avery !
Yes, I know I went a little picture crazy. :)
Blessings to you all,
Bethany
The Good...
Bryson's Jonah party was a hit. The decorations ended up being very cute, and he and his friends watched Veggie Tales Jonah movie, enjoyed their favor boxes (note to self: next time avoid the kazoos and whistles!), played games, and ate candy and cake.
Now that my big boy is 5, he started attending the Young Fives program at school. He was so excited to ride the bus and go to school. I waited until he was on the bus before I let my tears fall because I didn't want to worry him at all. After a week and a half of school, I emailed his teacher to see how he is doing. He tells me every day that he follows all the rules, but he's not the most reliable boy in the world. He also told me that he learned about whales and that one of his classmates brought cupcakes for her 78th birthday...both of which I highly doubt! So imagine my surprise when I received an email back from his teacher saying that Bryson listens well, follows all the rules, and in her words, "is a lovely student" to have in her class. Yay! Maybe there is hope for my little rascal after all!
More good news is that Avery has been doing the "side sit," which we worked hard on in therapy for a while. He resisted our attempts, but he is doing it in his own time and way. I also watched him pick up a t-shirt from the floor and place it on his head, almost like he was trying to put it on. I love watching my little boy do new things!
Emerson has been sleeping a little better. She is going about 5-6 hours per night before waking to eat. She even had one 8 hour night a couple of nights ago! That was fantastic! She is getting big so quickly, probably because she is quite the eater. We have fallen into a new normal with 3 kids, and it's not quite as difficult as I imagined. We've even gone out to eat quite a bit with them which is something Phillip and I thought we wouldn't be able to do anymore. Now going to the grocery store is a little tricky for me since Avery and Emerson both have to ride in the cart. I end up with hardly any room for groceries, but we're figuring it all out.
The Bad...
Hmmm. Where should I start? I guess the biggest, baddest thing we're dealing with right now is Avery's health. We met with the transplant team a couple of weeks ago in Cincinnati. They agreed that a transplant is necessary very soon for Avery since the transfusion schedule he has been on is not sustainable long-term. The BMT doctor said that until recently, they didn't transplant for Avery's condition (dyskeratosis congenita) and they still don't on some patients who are 10 or 15 and have already developed lung and liver disease, but with Avery being only 3 and no signs of those conditions yet, he is eligible. She has ordered some pretty major evaluations on him to check all of his main organs to see if they will be able to tolerate the chemotherapy. As long as nothing shows up in the next couple of weeks of testing that would disqualify him from a transplant, it looks like we'll be ready to begin within a month. Between now and then, Avery has a bone marrow aspirate/biopsy, kidney tests, liver/kidney ultrasounds, full body CT scan, ENT & neurology consultations, lung evaluation, and a few more tests I believe.
This is a time of my life that I never really believed we would have to come to. I dread it so badly for him and for our family. I get stressed easily, and just spending days in the hospital with Avery when he's sick stresses me out. Somehow I'm going to have to find the stamina to endure this for months, and from what we've been told, he will be sicker than he's ever been. The side effects of the chemo alone will be tough: mouth sores, vomiting, swelling/irritation of the feeding tubes, seizures, etc. So far, we've been told to expect to be inpatient at Cincinnati Children's Hospital for 4-6 weeks if all goes well, and then we'll be staying at the Ronald McDonald House for at LEAST 100 additional days to go to the hospital daily for check ups, treatments, transfusions, etc. While Avery's health is the priority for our family right now, I'm also dreading being separated from my kids and husband for so long. The isolation restrictions are pretty strict. I'll be away from my new baby and my 5 year old, both who I feel need me so badly in different ways. I'm trying to start preparing Bryson by talking about Avery being in the hospital. Last night, he said, "But I can't sleep in my bed when Avery isn't in it!" I'm also trying to plan ahead on how I'm going to get Emerson sleeping in her own room as soon as possible and trying to allow her to drink from a bottle so others can take care of her. I hate rushing these things to since Emerson is my last baby, I wish I could just enjoy these days. The only thing that keeps me from falling apart is thinking that this time next year, Avery should be doing better. I know that God won't put more on us than we can bear, but sometimes I think we've maxed out! But, I have an amazing husband, family, and more than that, a God that I know will sustain us. Please keep us in your prayers if you think of it!
The CUTE...
It just wouldn't be right for me to end this post on a negative note, not when I've got the chance to share more cuteness from the Hoskins clan!
This is what Bryson looks like almost everyday when he comes in from playing outside.
My adorable little Emerson Rose
Here is cuteness x 2! Emerson with her cousin, Ava.
My sweet little Avery. He came straight from the hospital infusion room to the party and still had plenty of smiles!
Bryson and Avery enjoying the last of their pool days! Even Phillip joined the fun.
Happy Avery !
Yes, I know I went a little picture crazy. :)
Blessings to you all,
Bethany
Subscribe to:
Posts (Atom)