It's official! Avery now has new bone marrow...or at least the start of it! His new stem cells arrived around 10:30 pm to Cincinnati Children's Hospital, and he finished receiving them around 2:00 am. The doctors warned us that many families find the actual transplant uneventful, because the cell product itself doesn't look that much different from packed red blood cells, and there is no immediate result. However, I would describe the transplant as many things, but uneventful is not one of them!
After my initial post yesterday, the day progressed well. Avery was in a good mood, and although still refusing to eat, he seemed to be feeling good. The schedule for the arrival of the new cells was initially 9:30 to 10:30, and then the transporters called and said between 8 and 9. I was pretty excited all day yesterday just thinking about those cells making their way slowly to us. It's been a long journey for us, and this was definitely a climactic turning point.
Around 4:00, Avery's infusion pump started beeping, which isn't really anything that unusual. I called the nurse in, and she couldn't find the problem. She checked for kinks and changed his central line end cap but still no luck. Around 5:00, she called for the vascular team, which maintains the patient lines. They said there was a blood clot in the line, so they needed to put a clot busting medicine called tpa in the line. The line was refusing to budge, so it took about 45 minutes for them to even get 1 ml of tpa in it. I'll tell you right now, this mama's blood pressure was rising! He still had another line that was functioning, but his white line (which is the one that was clotted) is used for one of his immune suppressant drugs that can't be administered in his other line otherwise it would contaminate it for other meds and blood draws. I guess worse case scenario, they could have started a peripheral IV, but Avery has bad veins, and we were coming close to the arrival time of his new cells. I asked as many people to pray as I could. After two hours of the tpa sitting in the line, it flushed beautifully, and I felt such relief! I'm thankful that God is ALWAYS there to turn to regardless of how big or small our problem is!
After the line issue was resolved, I felt a little better, but then we were told that the cells were running late. I had been pensive all day just thinking about the what the donor must be going through and those amazing, life-giving cells that were coming our way. It may sound silly, but I was praying for their safety and that NO unexpected harm would come to them. Finally, around 10 we got the call that they were in the city, and the nurses came in and premedicated Avery. I felt the biggest thrill when I saw the group of nurses and doctor walk to our door holding a bag of bone marrow intended for Avery Weston Hoskins, birthday 4/14/08. This is what we had been hoping, praying, dreading, and anticipating for months, even years now!
The bag didn't look that much different from blood; it was a little lighter colored since many of the red cells had been removed. The nurses started the verification process of reading and re-reading numbers and getting the lines ready to be placed in the bag. Wouldn't you know that Avery got a defective bag?? Yeah, my heart dropped to my toes again as the nurse pulled back the two pieces of plastic that should have given her access to a small port to hook up to the line, but instead, the plastic pieces broke off and the port stayed sealed. It took a couple minutes of trying and brainstorming before they got sterile scissors and were able to open it.
All hooked up and ready to go, the bag was hung and Avery sat in his bed staring at us like, "What's all the fuss?" As I watched the stem cells drip into Avery's central line and make their way into his body, I just felt so amazed that this was going to give Avery a new chance at life. It was quite surreal! The nurses did vitals every 15 minutes throughout the 2 1/2 hour infusion, and then for an hour afterward, then 30 minutes for a couple hours, then hourly for 5 more hours. The donor, although a 7/8 match for antigens was a different blood type, so there was a greater chance he would have a reaction. However, besides a few high blood pressures, his vitals were great. Avery was born type A blood, but now he will be B like his donor.
This morning, as expected, Avery's ANC (Absolute neutrophil count which has to do with white cells that fight infection) was essentially zero. The chemo has been killing whatever existing cells Avery had, and the new cells finished depleting what would have been there. His other counts were good. We've been told that they will all drop while the new cells are engrafting. That may take anywhere from one week to several weeks depending on how long the new cells and Avery's body fight each other. The new cells will recognize they're in the wrong body and attack it (graft vs. host), and Avery's immune system, although suppressed, may put up a fight. This will all determine his symptoms over the next few weeks, but hopefully, slowly but surely, Avery's counts will begin to climb a little at a time as the new donor cells begin to work as his own.
I know we have a long road ahead of us. It will take months before Avery is free from transfusions, and he will continue to be on immune suppresants and other drugs, even when he comes home to keep his body from rejecting his new marrow. But I am so hopeful of what is to come! I am so grateful to the young man who selflessly donated his bone marrow to my child who he didn't even know. And I am so thankful that God has brought us this far!
Please continue to pray that Avery will be able to endure the symptoms of the chemo and grafting process over the next weeks.
Bethany
Saturday, October 29, 2011
Friday, October 28, 2011
Day 0: Cell-ebration Day!!
Well, today is the big day! Actually, we've been told that transplant day, aka new cell day, is sometimes disappointing to families because it's seems uneventful. The actual process of receiving new stem cells isn't much different from receiving a blood transfusion. Plus, there is no immediate result. Usually, blood counts get worse before they engraft and start producing their own cells. But, I'm pretty excited about it.
At least I was until support group yesterday. The BMT unit has a weekly support group for the families here to meet in the parent lounge, enjoy some pizza, and talk about how things are going if you want. I didn't go last week, but yesterday the social worker reminded me of it, and I thought, "Why not?" I was ready for a break. We all introduced ourselves and shared why we're here briefly, and then parents started talking. I caught myself breaking down multiple times because there were some parents whose tears were just flowing as they talked, and I felt so bad for them. Plus I could relate to many of the feelings being expressed. But the more I heard from some of them increased my anxiety level. I love details and information, but sometimes ignorance really is bliss. A couple moms talked about the mucousitis that their kids were experiencing, which is basically sores and inflammation throughout the mouth and GI tract from the chemo. One lady said her 17 year old son is on 2 pain pumps, and he's day +9 post transplant. It made me worry because Avery has some beginning mucousitis, and he has no way of expressing how uncomfortable he is. He's not eating much, so it must be bothering him, but he complains so little that I wouldn't know if he needed pain meds or not. It is expected to only get worse over the next few weeks. Then a couple started talking about their 10 month old who is Day +30 post transplant and how they had a child die in 09 from the same genetic condition their son has. I heard about a child whose new cells never engrafted and he passed a couple months ago. It was so heart breaking! I have been focusing on the positive and not even considering the "what if it doesn't work" option, but yesterday made that option more of a reality. So, I'm not sure if I'll be frequenting the support group in the near future.
Avery was up until 1:30 again last night. His sleep schedule continues to get more and more messed up. It's hard for me to be annoyed with him when he's so happy about it, though. It has made for one exhausted mama, though. The late nights, countless interruptions throughout the nights, and stressful days are taking their toll.
They're going to be starting Avery on extra fluids today because they want him to be well hydrated when the new cells arrive. The stem cells are being harvested this morning from the donor, processed, and then transported to Cincinnati. They are expected to arrive here around 9:30, and Avery will be given them immediately while they're "fresh." The length of the infusion will depend upon the volume they're able to harvest and send. It will be adjusted for Avery's age/weight, and then they will be put through his central line over a series of several hours with vitals every 15 minutes to monitor his reaction. He will also be premedicated with benedryl and tylenol.
I have had a few worried moments last night and this morning. What if the donor backs out at the last minute or something would happen to the cells during transport?? I know, the chances are minuscule, but those thoughts have crossed my mind.
I will try to update with more details later. Thanks everyone for your prayers today!
Eagerly waiting in Cincy,
Bethany
At least I was until support group yesterday. The BMT unit has a weekly support group for the families here to meet in the parent lounge, enjoy some pizza, and talk about how things are going if you want. I didn't go last week, but yesterday the social worker reminded me of it, and I thought, "Why not?" I was ready for a break. We all introduced ourselves and shared why we're here briefly, and then parents started talking. I caught myself breaking down multiple times because there were some parents whose tears were just flowing as they talked, and I felt so bad for them. Plus I could relate to many of the feelings being expressed. But the more I heard from some of them increased my anxiety level. I love details and information, but sometimes ignorance really is bliss. A couple moms talked about the mucousitis that their kids were experiencing, which is basically sores and inflammation throughout the mouth and GI tract from the chemo. One lady said her 17 year old son is on 2 pain pumps, and he's day +9 post transplant. It made me worry because Avery has some beginning mucousitis, and he has no way of expressing how uncomfortable he is. He's not eating much, so it must be bothering him, but he complains so little that I wouldn't know if he needed pain meds or not. It is expected to only get worse over the next few weeks. Then a couple started talking about their 10 month old who is Day +30 post transplant and how they had a child die in 09 from the same genetic condition their son has. I heard about a child whose new cells never engrafted and he passed a couple months ago. It was so heart breaking! I have been focusing on the positive and not even considering the "what if it doesn't work" option, but yesterday made that option more of a reality. So, I'm not sure if I'll be frequenting the support group in the near future.
Avery was up until 1:30 again last night. His sleep schedule continues to get more and more messed up. It's hard for me to be annoyed with him when he's so happy about it, though. It has made for one exhausted mama, though. The late nights, countless interruptions throughout the nights, and stressful days are taking their toll.
They're going to be starting Avery on extra fluids today because they want him to be well hydrated when the new cells arrive. The stem cells are being harvested this morning from the donor, processed, and then transported to Cincinnati. They are expected to arrive here around 9:30, and Avery will be given them immediately while they're "fresh." The length of the infusion will depend upon the volume they're able to harvest and send. It will be adjusted for Avery's age/weight, and then they will be put through his central line over a series of several hours with vitals every 15 minutes to monitor his reaction. He will also be premedicated with benedryl and tylenol.
I have had a few worried moments last night and this morning. What if the donor backs out at the last minute or something would happen to the cells during transport?? I know, the chances are minuscule, but those thoughts have crossed my mind.
I will try to update with more details later. Thanks everyone for your prayers today!
Eagerly waiting in Cincy,
Bethany
Wednesday, October 26, 2011
My Mini-Meltdown
Here I am at the hospital, past my bedtime, but I just have too much on my mind. Tonight while I was rocking Avery, my mind started wandering to my other two kids, and I just got overwhelmed with missing them. I think I've been doing pretty well with it all, but right now I'm struggling just a bit.
My mom told me yesterday that Emerson was rolling from side to side, and it looked like she might try to roll completely over. Then she put the phone down to her and let me talk to her. She was just cooing and making those adorable baby noises! As soon as I hung up, I started to cry thinking about what all I'm missing with her. Mom is going to try some baby food with her today. Oh how I wish I could be there!
And my biggest baby, Bryson, has had a few tears this week, and I wasn't there for him. I've not even talked to him on the phone because I'm afraid that would only make things worse for him. Today is pajama day at school for Bryson, and Sarah sent me a picture of him in his Thomas Train pjs, with a big, excited grin on his face to wear them to school. He might be 5, but he's still my baby, and he makes me laugh so much!
If you actually made it this far through my post, I'm sorry that I have nothing inspiring to say right now and that I'm complaining. I know I have a lot to be thankful for, but at the moment all I can think about is the distance between me and my other kids and how badly I just want to be with them. And I can't even let myself think too far into the future! We're only 2 weeks into this; there's a LONG road ahead of us.
Bethany
My mom told me yesterday that Emerson was rolling from side to side, and it looked like she might try to roll completely over. Then she put the phone down to her and let me talk to her. She was just cooing and making those adorable baby noises! As soon as I hung up, I started to cry thinking about what all I'm missing with her. Mom is going to try some baby food with her today. Oh how I wish I could be there!
And my biggest baby, Bryson, has had a few tears this week, and I wasn't there for him. I've not even talked to him on the phone because I'm afraid that would only make things worse for him. Today is pajama day at school for Bryson, and Sarah sent me a picture of him in his Thomas Train pjs, with a big, excited grin on his face to wear them to school. He might be 5, but he's still my baby, and he makes me laugh so much!
If you actually made it this far through my post, I'm sorry that I have nothing inspiring to say right now and that I'm complaining. I know I have a lot to be thankful for, but at the moment all I can think about is the distance between me and my other kids and how badly I just want to be with them. And I can't even let myself think too far into the future! We're only 2 weeks into this; there's a LONG road ahead of us.
Bethany
Sunday, October 23, 2011
Day -5
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
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 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
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