Wednesday, November 9, 2011
Friday, November 4, 2011
The Sad Days
Avery has now entered "the sad days" as the doctors refer to them. That would be day +6 through +12, give or take a few. There's not a lot to say about it except that it's heartbreaking to watch your child suffer day after day.
He has mucousitis, which is sores and inflammation in his mouth all the way through his GI tract. Avery is refusing to eat, because to do so is painful. He also isn't swallowing much at all, which means that all the saliva and mucous builds up in his mouth and throat, and he's had some pretty bad choking episodes and some low oxygen levels that have required a little bit of direct oxygen. They have started him on continuous tube feeds and extra fluids to compensate for the fact that he's not eating, and today at rounds, are going to discuss putting him on a pain pump. He's been getting morphine as needed, but Avery doesn't really express pain, so it's hard to tell sometimes if he's having pain until he's in a lot of pain. A pain pump would be a little simpler and consistent.
He did have a fever night before last, which the doctors said is normal. His body and the new cells are in a battle right now. I'm just hoping and praying everyday that the cells win the battle and start to graft....quickly!
The only thing keeping me sane right now is knowing that this is all part of the process, and it WILL pass. I'm struggling a little with juggling my 3 kids; I need a clone of myself! One thing I must say is that I'm married to an AMAZING guy. I can't imagine any man being more supportive and there for his family. He's on FMLA right now, and so he's been staying every night for the last week so that I can stay home with Bryson and Em. I've been making day trips this week. Tuesday, I brought Emerson with me, and while I spent the day with Avery, Phillip and Emerson had a father-daughter day in the Ronald McDonald House. Yesterday, I took Bryson out of school and took him with me, and he and Phillip had a fun day together. The Bengals' wives did pizza for lunch, and then Bryson played in the game rooms, and I think wore his daddy out!
Thank you so much for your prayers!! We need them more than ever.
Bethany
He has mucousitis, which is sores and inflammation in his mouth all the way through his GI tract. Avery is refusing to eat, because to do so is painful. He also isn't swallowing much at all, which means that all the saliva and mucous builds up in his mouth and throat, and he's had some pretty bad choking episodes and some low oxygen levels that have required a little bit of direct oxygen. They have started him on continuous tube feeds and extra fluids to compensate for the fact that he's not eating, and today at rounds, are going to discuss putting him on a pain pump. He's been getting morphine as needed, but Avery doesn't really express pain, so it's hard to tell sometimes if he's having pain until he's in a lot of pain. A pain pump would be a little simpler and consistent.
He did have a fever night before last, which the doctors said is normal. His body and the new cells are in a battle right now. I'm just hoping and praying everyday that the cells win the battle and start to graft....quickly!
The only thing keeping me sane right now is knowing that this is all part of the process, and it WILL pass. I'm struggling a little with juggling my 3 kids; I need a clone of myself! One thing I must say is that I'm married to an AMAZING guy. I can't imagine any man being more supportive and there for his family. He's on FMLA right now, and so he's been staying every night for the last week so that I can stay home with Bryson and Em. I've been making day trips this week. Tuesday, I brought Emerson with me, and while I spent the day with Avery, Phillip and Emerson had a father-daughter day in the Ronald McDonald House. Yesterday, I took Bryson out of school and took him with me, and he and Phillip had a fun day together. The Bengals' wives did pizza for lunch, and then Bryson played in the game rooms, and I think wore his daddy out!
Thank you so much for your prayers!! We need them more than ever.
Bethany
Saturday, October 29, 2011
Transplant
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
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
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
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