Happy New Years!
They really miss each other.
Doctor's outfit and Doctor's kit...perfect
Friday, December 31, 2010
New Years Eve
I can't believe it's New Years Eve. Today doesn't feel any different than any other day has since we've been here. Every day, our only concern is Everett...how is he doing, how is he feeling, what are his blood counts...everything else is secondary and not so important. We've already spent Christmas and our anniversary here in the hospital, and we've done our best to enjoy these days despite all that has happened, and we will do the same today.
Last night John and I went to Church Brew Works for our anniversary dinner. Dinner was awesome and it was nice to be out of the hospital for a few hours, spending some alone time with John, but the most memorable part of the night was our cab driver, who was one of the nicest guys we've met. He talked to us most of the drive to and from the restaurant, wanting to know about Everett and offering words of encouragement. We learned that his wife is also battling cancer, for the SECOND time. When he dropped us off at the hospital, he said the ride was on him and promised to keep Everett in his prayers. So many times in the past 2 weeks, complete strangers have reached out to us, offering us words of support as well as prayers for our strong little boy. Each day I am amazed at the generosity of our friends and family and I see how truly blessed we are to have so many wonderful people in our lives. Finding out that Everett has leukemia was my worst nightmare, but if there is a silver lining in all of this, it is that we now realize just how loved we are!
The past few days have been quiet days for Everett. The doctors are very happy with how he has handled the chemo and ATRA treatments. So far he has had almost no side effects besides 2 episodes of nausea and vomiting. Everyone here thinks Everett is the cutest little man, and are impressed with how easy-going and happy he is. Mom and dad pray every day that he will continue to do as well as he has, as much for him as for us. It's a little easier knowing that he is feeling good and he's his usual happy self:)
Wishing everyone a New Year full of nothing but amazing things! God Bless you all.
Val
Last night John and I went to Church Brew Works for our anniversary dinner. Dinner was awesome and it was nice to be out of the hospital for a few hours, spending some alone time with John, but the most memorable part of the night was our cab driver, who was one of the nicest guys we've met. He talked to us most of the drive to and from the restaurant, wanting to know about Everett and offering words of encouragement. We learned that his wife is also battling cancer, for the SECOND time. When he dropped us off at the hospital, he said the ride was on him and promised to keep Everett in his prayers. So many times in the past 2 weeks, complete strangers have reached out to us, offering us words of support as well as prayers for our strong little boy. Each day I am amazed at the generosity of our friends and family and I see how truly blessed we are to have so many wonderful people in our lives. Finding out that Everett has leukemia was my worst nightmare, but if there is a silver lining in all of this, it is that we now realize just how loved we are!
The past few days have been quiet days for Everett. The doctors are very happy with how he has handled the chemo and ATRA treatments. So far he has had almost no side effects besides 2 episodes of nausea and vomiting. Everyone here thinks Everett is the cutest little man, and are impressed with how easy-going and happy he is. Mom and dad pray every day that he will continue to do as well as he has, as much for him as for us. It's a little easier knowing that he is feeling good and he's his usual happy self:)
Wishing everyone a New Year full of nothing but amazing things! God Bless you all.
Val
Tuesday, December 28, 2010
Tuesday - Just Another Day
We did have some events last night. We don't know whether it was the additional platelets he received or his ATRA but when mom and dad came back from getting some Thai food, Everett was vomiting repeatedly. This went on for almost an hour when they finally gave him some Ativan which made him feel better but also kept him up until 9:15. So far so good today. He seems to be sleeping more (he's in the midst of a 3 hour nap), which we assume to be due to his blood counts lowering (this is expected with the treatment). Hopefully he will go to bed earlier tonight...
The doctors gave a report and said he is progressing fine and the vomiting is just a part of the process. Although it doesn't make for a great blog post, we do appreciate the 'quiet days' the most. Everett enjoys going to the "playroom" and it is usually the first word out of his mouth after waking up in the morning and from naps.
We met with some social workers and Val has agreed to do a research study on stress management for Mothers of Leukemia patients. Not sure how this differs from the father's stress, but perhaps the study will shine more light on this. We discussed possibilities of Make-A-Wish, although we're not sure if we want to take advantage of this or not. As much as I'd love a free Disney trip or the like, I'm not a very good gift recipient. Taking advantage of the countless offers of generosity has been difficult for me. Even taking free coffee from the Ronald McDonald house feels strange.
We hope to get out on the 30th to celebrate our 4th anniversary but perhaps just a dinner. When we're away from Everett we are anxious and uneasy that he will want us or something will happen. As strange as it sounds, being in the 14' x 14' room next to him is where we want to be as long as he is here sick.
Gotta go, someone is awake ;)
The doctors gave a report and said he is progressing fine and the vomiting is just a part of the process. Although it doesn't make for a great blog post, we do appreciate the 'quiet days' the most. Everett enjoys going to the "playroom" and it is usually the first word out of his mouth after waking up in the morning and from naps.
We met with some social workers and Val has agreed to do a research study on stress management for Mothers of Leukemia patients. Not sure how this differs from the father's stress, but perhaps the study will shine more light on this. We discussed possibilities of Make-A-Wish, although we're not sure if we want to take advantage of this or not. As much as I'd love a free Disney trip or the like, I'm not a very good gift recipient. Taking advantage of the countless offers of generosity has been difficult for me. Even taking free coffee from the Ronald McDonald house feels strange.
We hope to get out on the 30th to celebrate our 4th anniversary but perhaps just a dinner. When we're away from Everett we are anxious and uneasy that he will want us or something will happen. As strange as it sounds, being in the 14' x 14' room next to him is where we want to be as long as he is here sick.
Gotta go, someone is awake ;)
Sunday, December 26, 2010
Day 5
Today is Everett's last dose of chemo for this round of treatment. He will continue to get 2 daily doses of ATRA for another 25 days and may get to come home for a week at the end of his first month of treatment if all goes well. So far the doctors are very happy with how he is tolerating the medications. We expect his blood counts to start to drop in the next week, but for now our little man is feeling good and playing just like he did before his diagnosis. I'm sure he has no idea that he's sick at all. He's such an amazing and smart little boy and has already won the hearts of his doctors and nurses here at CHP.
Gramma Miller, Bugga, Aunt Carrie, Great Gramma Carole and Avery came to visit for Christmas yesterday and the boys had a wonderful time opening all their presents. It wasn't the Christmas we imagined a little over a week ago, but we were surrounded by family and we feel blessed that the boys are still young enough that they don't really understand or care that we didn't spend Christmas at home. They were just excited to see each other and to play with all the cool toys they got.
Every day John and I are amazed at the generosity of our friends and family as well as people we have never met before. Everett has gotten presents from complete strangers and it seems like every day someone is dropping off something else for Everett to play with or to make him more comfortable while he's here. Each and every word or encouragement and every gift that Everett receives is appreciated more than anyone can know. It's these things that get mom and dad through the day.
We'd like to ask you all to remember and pray for the other families and children who are in the hospital, here at Children's and at other hospitals as well. During our stay here, we have quickly realized that there are too many families like ours who have a child that is sick and who worry every day about what the future holds for them. There is one family in particular who my heart goes out to--their teenage son had an accident while messing around with friends and has been in a coma for 2 weeks. I met this boy's mom on my first day here as I was standing in the lobby of the hospital in tears, after just hearing from the doctor that my sweet little boy has leukemia. His mom immediately came up to me, gave me a big hug and tried to comfort me as best she could, all while she was/is dealing with her own pain and fear over what will happen to her own son I say a prayer for this family each night and hope that those of you who read this blog will as well.
Val
Gramma Miller, Bugga, Aunt Carrie, Great Gramma Carole and Avery came to visit for Christmas yesterday and the boys had a wonderful time opening all their presents. It wasn't the Christmas we imagined a little over a week ago, but we were surrounded by family and we feel blessed that the boys are still young enough that they don't really understand or care that we didn't spend Christmas at home. They were just excited to see each other and to play with all the cool toys they got.
Every day John and I are amazed at the generosity of our friends and family as well as people we have never met before. Everett has gotten presents from complete strangers and it seems like every day someone is dropping off something else for Everett to play with or to make him more comfortable while he's here. Each and every word or encouragement and every gift that Everett receives is appreciated more than anyone can know. It's these things that get mom and dad through the day.
We'd like to ask you all to remember and pray for the other families and children who are in the hospital, here at Children's and at other hospitals as well. During our stay here, we have quickly realized that there are too many families like ours who have a child that is sick and who worry every day about what the future holds for them. There is one family in particular who my heart goes out to--their teenage son had an accident while messing around with friends and has been in a coma for 2 weeks. I met this boy's mom on my first day here as I was standing in the lobby of the hospital in tears, after just hearing from the doctor that my sweet little boy has leukemia. His mom immediately came up to me, gave me a big hug and tried to comfort me as best she could, all while she was/is dealing with her own pain and fear over what will happen to her own son I say a prayer for this family each night and hope that those of you who read this blog will as well.
Val
Friday, December 24, 2010
Christmas Eve
Today was a very good day for Everett. He got his second dose of Chemotherapy and his third dose of ATRA (all-trans retinoic acid). He got a big boy bed and we ditched his 'iron crib' with the bubble top. Santa Claus comes tonight to our very tiny Christmas tree. Hopefully the presents will be here in the morning.
All is quiet in the hospital. The only ones left are the ones who will not be making it home for Christmas. We ask that you say a prayer for all the kids in the hospital that won't be able to go home for Christmas. Some are here without their parents and some are in far worse shape than we are.
Mom, Dad, and Grammy are watching classic Christmas cartoons and winding Everett down for the night.
We wish all our friends and family a Merry Christmas. Enjoy your time with your family. We love you and God bless all of you.
Love,
Val, John, Everett, and Grammy (Maxine)
All is quiet in the hospital. The only ones left are the ones who will not be making it home for Christmas. We ask that you say a prayer for all the kids in the hospital that won't be able to go home for Christmas. Some are here without their parents and some are in far worse shape than we are.
Mom, Dad, and Grammy are watching classic Christmas cartoons and winding Everett down for the night.
We wish all our friends and family a Merry Christmas. Enjoy your time with your family. We love you and God bless all of you.
Love,
Val, John, Everett, and Grammy (Maxine)
(Iron Crib Baby)
(Our tiny Christmas Tree)
(In our big boy bed)
Thursday, December 23, 2010
Day 2 of Treatment
Everett did really well with his first round of chemo and ATRA yesterday. Grammy Miller, Aunt Carrie and "brother" came to visit yesterday too! Everett and Avery ran around playing most of the day...you would never know that our little man is as sick as he is. He did get sick once during the night, but the nurses are giving him medicine to help with the upset stomach and so far today he seems to be feeling great.
Everett got today off from chemo treatments and only got ATRA. ATRA isn't chemo, but still kills cancer cells and can make him feel a little sick in addition to potentially causing a side effect called retinoic acid syndrome, which causes fluid build-up around the lungs and heart, BP issues and swelling. Today Everett's blood pressure has been a little high so they doctors are keeping a close eye on him, but otherwise he seems to be feeling well.
Everett will get a second dose of chemo tomorrow morning and we are praying that he responds as well as he did on day 1. It's scary to think that he is being given a poison, but we know that it is meant to kill his leukemia cells so we try not to focus on the fear.
Everett has gotten lots of great presents, emails and cards in the past few days from all of our wonderful friends and family, and from some people who have never even met him. It is truly amazing to see how many people there are out there who care about him and us and want to do what they can to help us through the worst time of our lives. John and I are so very touched by everyones' prayers and words of inspiration and hope. We are keeping notes so someday we can tell Everett about all the people who love him and got him and us through his leukemia.
Wish us luck on day 3!
(Val)
Everett got today off from chemo treatments and only got ATRA. ATRA isn't chemo, but still kills cancer cells and can make him feel a little sick in addition to potentially causing a side effect called retinoic acid syndrome, which causes fluid build-up around the lungs and heart, BP issues and swelling. Today Everett's blood pressure has been a little high so they doctors are keeping a close eye on him, but otherwise he seems to be feeling well.
Everett will get a second dose of chemo tomorrow morning and we are praying that he responds as well as he did on day 1. It's scary to think that he is being given a poison, but we know that it is meant to kill his leukemia cells so we try not to focus on the fear.
Everett has gotten lots of great presents, emails and cards in the past few days from all of our wonderful friends and family, and from some people who have never even met him. It is truly amazing to see how many people there are out there who care about him and us and want to do what they can to help us through the worst time of our lives. John and I are so very touched by everyones' prayers and words of inspiration and hope. We are keeping notes so someday we can tell Everett about all the people who love him and got him and us through his leukemia.
Wish us luck on day 3!
(Val)
Wednesday, December 22, 2010
Day 1
Today is Day 1 of Everett's treatment. We don't know what to expect. We were told every kid has some side effects, no one has all of them. They are looking for ways to dose his chemo that isn't a pill he has to swallow. We still don't know what this is yet or if we are going to try to have him take a pill orally. My fear is that he will bite it, it will have a terrible taste and then he won't want to take it again. He ate a really good breakfast this morning and is playing with his playdoh that aunt Jill gave him. The nurses and doctors are amazed with his demeanor with taking medications and getting blood drawn. He makes it just a little bit easier on mom and dad.
I have to thank mom for staying with us this week. She has been here every day and night and even watched Everett last night so we could get some sleep. She has always been an amazing mother to me and has always been there when we needed her. We love you mom.
I have to thank mom for staying with us this week. She has been here every day and night and even watched Everett last night so we could get some sleep. She has always been an amazing mother to me and has always been there when we needed her. We love you mom.
Tuesday, December 21, 2010
Diagnosis
With the bone marrow test, we have confirmed that Everett has APL. This is good news for us as there was a chance of AML which has a less positive outlook. We are still in for a long battle with chemotherapy including enrolling him in a trial which has arsenic as part of the treatment. With arsenic Everett may have better days and a better long term prognosis. He is officially the youngest child with APL ever at Children's Hospital in Pittsburgh. We will pass on more information about treatment shortly. Here is more info on APL:
http://www.cancer.org/Cancer/LeukemiainChildren/OverviewGuide/childhood-leukemia-overview-treating-children-with-a-p-l
Thanks for your thoughts and prayers.
http://www.cancer.org/Cancer/LeukemiainChildren/OverviewGuide/childhood-leukemia-overview-treating-children-with-a-p-l
Thanks for your thoughts and prayers.
Everett's Address for Gifts/Cards/etc
What can be sent may change on his diagnosis today. For now no fruit or flowers, due to bacteria, but everything else is ok.
Everett Van Dyke
Room 932, Unit 9B
Children’s Hospital of Pittsburgh of UPMC
One Children's Hospital Drive
4401 Penn Ave.
Pittsburgh, PA 15224
Thank you all for everything
Everett Van Dyke
Room 932, Unit 9B
Children’s Hospital of Pittsburgh of UPMC
One Children's Hospital Drive
4401 Penn Ave.
Pittsburgh, PA 15224
Thank you all for everything
Monday, December 20, 2010
Pictures from the hospital
Our special glove (you can see my bruises on my thigh)
Daddy wore his mask too.
We went to a special party with music and got a free elephant
Checking out the disco ball
Lots to look at
Dancing!
Checking out the presents
Just hanging out on the computer with my elephant
A World Turned Upside Down
On Friday 12/17/10, it all began. Like any normal weekday, I went to pick Everett and Avery up from day care. Unfortunately, today wasn't going to be like the rest. When I arrived there was a man from Child Youth Services waiting to talk to me. I knew what this was about...
A week or two earlier we had started to notice brusing on Everett's legs, arms, and on the top of his head. Being a two year old, we assumed that he was just clumsy and since he was going to day care full time, we assumed these were normal "2 year old bruises." As the days went on, more and more appeared but we tried to reassure ourselves that it was just the overly excited kids at day care playing rough. We had planned to take him to the pediatrician this week for an evaluation.
The man from CYS pulled me aside and asked me what I knew about the bruises. (As most of you know me, I'd rather set myself on fire than hurt any of my children) I tried to remain calm so not as to seem like an angry father. I explained I assumed he was getting the bruises from daycare and that I would never harm my child. He took my statement and took pictures of Everett. He told me that we would have to take him to the ER immediately for an evaluation. Apprehensively, I packed Avery and Everett up, called mom and arranged for Bugga (grandpa) to meet us at the ER.
After getting to the ER we spoke with several doctors, had blood drawn, xrays, and cat scans performed. Needless to say this took several hours. After the doctor returned, he informed me that 'something wasn't right with his blood counts' and that we would be on the next ambulance to Children's Hospital of Pittsburgh. It was about 11:45 once we hit the road and got to CHP around 1:30AM. Again we waited. They took more blood and we waited. They said they weren't sure but something wasn't right so they wanted to get him into a room for the night and do some additional bloodwork. It was 4:00AM and we slept for maybe an hour or two before we got the news...
The doctor came in and said that they had gotten some results back from the bloodwork and they had seen evidence of Leukemia. Anger, fear, and uncertainty set in. After we had composed ourselves we immediately concerned ourselves with the next step. More tests would ensue and we learned that there was a possbility of a very long term (6-12 months) treatment with Everett spending 4 out of 5 weeks of the time in the hospital for Chemotherapy and recovery.
As of today, Dec 20th, we are still waiting. Hours go by and anxiety is increasing. We were told today that it might be a different kind of Leukemia than what we had originally expected but no word of what and what the prognosis is.
Everett had bonemarrow taken in what was a terrifying procedure. I'll save the details, but he didn't feel any pain and was asleep during the procedure. It was one of the scariest moments of our life.
The nurses and doctors are amazed by his strength, willingness, and even eagerness to comply to repeated blood work, blood transfusions, medications and platelet infusions. He takes needles without tears and is running around playing, giggling, and getting into things unaware of what is happening.
We don't know what to expect, but we continue to wait and hope we can salvage a Christmas for the twins at the hospital at the Ronald McDonald house. The doctors and nurses have been fantastic and we really couldn't ask for better treatment.
We appreciate all the prayers, e-mails, cards, gifts, texts, etc. Keep them coming as we search for strength in God for our innocent little man. I wish we could be as brave as he is.
A week or two earlier we had started to notice brusing on Everett's legs, arms, and on the top of his head. Being a two year old, we assumed that he was just clumsy and since he was going to day care full time, we assumed these were normal "2 year old bruises." As the days went on, more and more appeared but we tried to reassure ourselves that it was just the overly excited kids at day care playing rough. We had planned to take him to the pediatrician this week for an evaluation.
The man from CYS pulled me aside and asked me what I knew about the bruises. (As most of you know me, I'd rather set myself on fire than hurt any of my children) I tried to remain calm so not as to seem like an angry father. I explained I assumed he was getting the bruises from daycare and that I would never harm my child. He took my statement and took pictures of Everett. He told me that we would have to take him to the ER immediately for an evaluation. Apprehensively, I packed Avery and Everett up, called mom and arranged for Bugga (grandpa) to meet us at the ER.
After getting to the ER we spoke with several doctors, had blood drawn, xrays, and cat scans performed. Needless to say this took several hours. After the doctor returned, he informed me that 'something wasn't right with his blood counts' and that we would be on the next ambulance to Children's Hospital of Pittsburgh. It was about 11:45 once we hit the road and got to CHP around 1:30AM. Again we waited. They took more blood and we waited. They said they weren't sure but something wasn't right so they wanted to get him into a room for the night and do some additional bloodwork. It was 4:00AM and we slept for maybe an hour or two before we got the news...
The doctor came in and said that they had gotten some results back from the bloodwork and they had seen evidence of Leukemia. Anger, fear, and uncertainty set in. After we had composed ourselves we immediately concerned ourselves with the next step. More tests would ensue and we learned that there was a possbility of a very long term (6-12 months) treatment with Everett spending 4 out of 5 weeks of the time in the hospital for Chemotherapy and recovery.
As of today, Dec 20th, we are still waiting. Hours go by and anxiety is increasing. We were told today that it might be a different kind of Leukemia than what we had originally expected but no word of what and what the prognosis is.
Everett had bonemarrow taken in what was a terrifying procedure. I'll save the details, but he didn't feel any pain and was asleep during the procedure. It was one of the scariest moments of our life.
The nurses and doctors are amazed by his strength, willingness, and even eagerness to comply to repeated blood work, blood transfusions, medications and platelet infusions. He takes needles without tears and is running around playing, giggling, and getting into things unaware of what is happening.
We don't know what to expect, but we continue to wait and hope we can salvage a Christmas for the twins at the hospital at the Ronald McDonald house. The doctors and nurses have been fantastic and we really couldn't ask for better treatment.
We appreciate all the prayers, e-mails, cards, gifts, texts, etc. Keep them coming as we search for strength in God for our innocent little man. I wish we could be as brave as he is.
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