This year, we're mostly ignoring the holiday season. If you know me, then you know that this is one of my favorite times of year. I'm one of those people who likes to blend the Thanksgiving and Christmas seasons by putting my tree up early and listening to Christmas music in November. There's not much I enjoy any better than having a nice, holiday scented candle burning, drinking hot chocolate, and planning family get-togethers. This year, I'm just not feeling too festive, and so there are no decorations or plans to put any up at the Hoskins' home, and today on Thanksgiving, my family members are scattered about rather than under one roof as I would like.
However, despite my lack of keeping up with traditions, I still have so much to be thankful for today! A lot has changed in one year; this time last year we only recently found out we had another baby on the way. Now, we have a beautiful, healthy baby girl who I just love to pieces! Last year, Avery's diagnosis and prognosis was completely different. And even though it was a tough year getting to this point, he now has new bone marrow that is starting to graft. I'm especially grateful to the young man who shared part of his healthy cells with Avery.
I've always been thankful for my husband, but each year seems to bring out something different in him that I appreciate. I feel like we have been through so much over the last few years and that our relationship has been put to the test! He has been a rock amidst chaos. Thank you, Lord, for blessing me with Phillip Douglas Hoskins!
I've been blessed with many material things, which in light of what has been going on in our life, I have realized mean so much less than I once thought. But I'm so glad that we have such a nice home...nothing fancy, but cozy and filled with love. We have plenty of food, my husband has a good, stable job, which means a lot in this economy! I'm even thankful for my not-so-cool minivan, but it is oh-so-practical and dependable! :)
I sat down a few days ago to write a thank you card to the young man who shared his healthy cells with Avery, and once I wrote "Dear Bone Marrow Donor," I was at a complete loss for words. Because of privacy laws, we're not allowed to know his name or location, and in my thank you card, I wasn't allowed to share any personal details that might compromise our or his anonymity. But I just kept thinking that simply saying, "thank you" for such a selfless, life-changing gift seemed so insignificant. I tried to express our gratitude to the young man as best as I could, but as I closed my note, I still felt like I had fallen so short. Then I started thinking about Jesus and the sacrifice He made for a fallen world full of sinful people who he didn't even know. He didn't just give his bone marrow; He gave his life. Saying "thank you" for that sacrifice seems insignificant as well, but I don't want to ever fail to try to let him know how thankful I am for the sacrifice He made and the gift of eternal life!
Happy Thanksgiving, Friends!
Bethany
Thursday, November 24, 2011
Friday, November 11, 2011
Day 13 and Counting
I know that some of you read my blog solely to follow Avery's progress and might be eager for an update. One would think that because I'm sitting in a hospital day after day that I'd have nothing but time to blog. Unfortunately, Avery has been VERY high maintenance lately, leaving very little time for blogging. The good news is things are looking up...at least I think so.
The last week has been difficult to say the least. Avery has been sick and in serious pain. It makes it hard that Avery doesn't talk and can't tell us exactly how he feels. It's really been a trial and error process to try to get him comfortable. His mouth and entire GI tract has been inflamed, so he went an entire week without taking anything by mouth. So, he's been getting tube feeds, but whenever they increase the rate of feeds, Avery gets more nauseated. He's had a few days of vomiting along the way, a couple of fevers, some seriously high blood pressures and heart rates that are just indicative of pain. He has rolled the bed literally moaning in pain for days. Or, possibly even more pitiful has been him sitting in his crib, rocking back and forth with his eyes shut moaning. The doctors have increased his morphine rate in his pain pump multiple times and tried other meds (nubane, ativan, dilaudid, phenergen, etc.) in addition to the other ten or twelve scheduled meds he's currently getting, but nothing seemed to really work.
Pretty much, the last week we have lived in the recliner. Avery has been a little more contented when he is being rocked, so Phillip and I have rocked him until our arms went numb. It has been mentally, physically, and emotionally exhausting. I have just had to lean on God for strength as well as my husband and family.
The bright spots have been that Avery's blood counts have been showing signs of engraftment, so they drew an engraftment study Tuesday. We should know in a couple of days whether or not the donor cells are working or not in a couple more days. The other positive is that Avery has been hinting at a smile a time or two in the last two days, and he ate 3 bites of applesauce yesterday.
I don't want to sound all gloom and doom; I'm so thankful that it appears Avery's cells are beginning to work. Avery's experience has been pretty normal...awful, but normal.
Our friends and family members have been so great through all of this! Everyday we get a phone call, text, or message of some sort letting us know that we're not forgotten and that we're being upheld in prayer. We've had so many people reach out in other ways to take off the extra financial stress of this time. Truly, our finances aren't our priority right now, but it is awesome to not be so worried about the toll Phillip's unpaid FMLA time is taking on our wallet. Saying "thank you" just doesn't seem enough.
Bethany
The last week has been difficult to say the least. Avery has been sick and in serious pain. It makes it hard that Avery doesn't talk and can't tell us exactly how he feels. It's really been a trial and error process to try to get him comfortable. His mouth and entire GI tract has been inflamed, so he went an entire week without taking anything by mouth. So, he's been getting tube feeds, but whenever they increase the rate of feeds, Avery gets more nauseated. He's had a few days of vomiting along the way, a couple of fevers, some seriously high blood pressures and heart rates that are just indicative of pain. He has rolled the bed literally moaning in pain for days. Or, possibly even more pitiful has been him sitting in his crib, rocking back and forth with his eyes shut moaning. The doctors have increased his morphine rate in his pain pump multiple times and tried other meds (nubane, ativan, dilaudid, phenergen, etc.) in addition to the other ten or twelve scheduled meds he's currently getting, but nothing seemed to really work.
Pretty much, the last week we have lived in the recliner. Avery has been a little more contented when he is being rocked, so Phillip and I have rocked him until our arms went numb. It has been mentally, physically, and emotionally exhausting. I have just had to lean on God for strength as well as my husband and family.
The bright spots have been that Avery's blood counts have been showing signs of engraftment, so they drew an engraftment study Tuesday. We should know in a couple of days whether or not the donor cells are working or not in a couple more days. The other positive is that Avery has been hinting at a smile a time or two in the last two days, and he ate 3 bites of applesauce yesterday.
I don't want to sound all gloom and doom; I'm so thankful that it appears Avery's cells are beginning to work. Avery's experience has been pretty normal...awful, but normal.
Our friends and family members have been so great through all of this! Everyday we get a phone call, text, or message of some sort letting us know that we're not forgotten and that we're being upheld in prayer. We've had so many people reach out in other ways to take off the extra financial stress of this time. Truly, our finances aren't our priority right now, but it is awesome to not be so worried about the toll Phillip's unpaid FMLA time is taking on our wallet. Saying "thank you" just doesn't seem enough.
Bethany
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
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