Thursday, January 27, 2011
Everett's Article from the Local Newspaper
Here is the article that was published by the Derrick today. I'm surprised at how much coverage the blood drive received. It was on the back page of the first section of the newspaper. Not the way I thought my kids would make the paper but I'm so grateful that the blood drive is getting so much attention. (Click on the image to read it)
Wednesday, January 26, 2011
Inspiring Quote from a Mother of a Child with Leukemia
I came across a blog by the mother and father of a 19 year old boy who was diagnosed with leukemia (AML) at 16. After 8 months in remission, he relapsed and had to have a bone marrow transplant. He endured excruciating pain, nausea, vomiting, fevers, countless viruses, graft vs. host disease...but almost a year after his transplant he is still fighting and leukemia-free.
I am inspired by this boy and his parents who have been through so much and yet continue to stay strong and to hold on tightly to their faith in God. I only hope that we can be as strong for Everett and for each other. Everett has done so well in his first month after diagnosis, but each day is still hard, and I worry that if a time comes that his health deteriorates or the side effects of treatment are severe I'll falter in my strength and resolve.
This is a quote written by the mother of the teenager with AML:
"I praise God for He is still holding me in His arms and carrying me through so many days that my human body would rather cry out in agony at the pain I carry in my heart for having to watch my child be so sick when he did nothing in his short life to deserve it.
I cried when I read this...tears of sadness over what this family has had to endure, and tears of hope and inspiration at this mother's continued faith and love for God and at God's continuing presence in all our lives, bringing us strength when we need it most.
I am inspired by this boy and his parents who have been through so much and yet continue to stay strong and to hold on tightly to their faith in God. I only hope that we can be as strong for Everett and for each other. Everett has done so well in his first month after diagnosis, but each day is still hard, and I worry that if a time comes that his health deteriorates or the side effects of treatment are severe I'll falter in my strength and resolve.
This is a quote written by the mother of the teenager with AML:
"I praise God for He is still holding me in His arms and carrying me through so many days that my human body would rather cry out in agony at the pain I carry in my heart for having to watch my child be so sick when he did nothing in his short life to deserve it.
I praise Him for continuing to give me just one more day with my son.
I praise Him for pushing me, testing me, and making me stronger when I want to collapse in a heap on the floor and never get up again , because it would be so easy.
But he pries my heart open many times daily and reminds me that He has never left, and that if I ever feel abandoned, it is because it is I who have left Him.
I pray that each time I feel weak, each time I am angry, each time I am tempted to doubt, that He will squeeze me harder until I accept His loving embrace.
I pray I will seek His guidance in the Word He has given me and that it becomes emblazoned on my soul for me to live out. "
Wednesday, January 19, 2011
First Clinic Visit
Everett went for his first clinic visit (of many to come) today. They ran blood work and said his platelet and red blood cell count are great. His white count is low, but this is to be expected after chemo. No crowds and no sick people for us for quite a while:) They also removed his PICC line so he will be wire free for a week or so. As usual, Everett did great and his doctors and nurse were impressed at how brave he is:)
We are scheduled to return to Childrens on Monday, January 31st for a bone marrow biopsy and to place a new line called a broviac line, which will be used to give him his arsenic (and later chemo) and any blood products or other meds he may need as well as to draw blood. This will also be Day 1 of Consolidation 1 treatment, which will last for 33 days. Everett will get IV arsenic Monday through Friday and will have the weekends off. He will get ATRA on Days 1-14 only.
Everett's doctors said that he did so well during his first round of treatments (Induction) that they plan to do his Consolidation 1 treatments in the clinic (instead of admitting him) and he will be allowed to go "home" to Ronald McDonald house each day. Even better, as long as his blood counts permit, he will be allowed to come home to Oil City on the weekends. This is pretty exciting for us after being cooped up in the hospital for 4 weeks. Ronald McDonald house may not be home, but at least it's not a hospital room. These days even small victories like this seem huge.
Hoping for a quiet week and a half before Everett and I return to Childrens for round 2...
Val
We are scheduled to return to Childrens on Monday, January 31st for a bone marrow biopsy and to place a new line called a broviac line, which will be used to give him his arsenic (and later chemo) and any blood products or other meds he may need as well as to draw blood. This will also be Day 1 of Consolidation 1 treatment, which will last for 33 days. Everett will get IV arsenic Monday through Friday and will have the weekends off. He will get ATRA on Days 1-14 only.
Everett's doctors said that he did so well during his first round of treatments (Induction) that they plan to do his Consolidation 1 treatments in the clinic (instead of admitting him) and he will be allowed to go "home" to Ronald McDonald house each day. Even better, as long as his blood counts permit, he will be allowed to come home to Oil City on the weekends. This is pretty exciting for us after being cooped up in the hospital for 4 weeks. Ronald McDonald house may not be home, but at least it's not a hospital room. These days even small victories like this seem huge.
Hoping for a quiet week and a half before Everett and I return to Childrens for round 2...
Val
Monday, January 17, 2011
Monday Morning Update, Blood Drive Info, and Thank Yous
Well Everett was back to his old self this weekend. Last night he slept through the night for the first time in a long time. We had an E.R. checkup on Saturday and we were told he looked great. Today Carrie and Joy are watching him and his brother before they have to fly back to Philly. Wednesday he is taking a trip to get his PICC line removed from his arm and to have another check up.
We wanted to reach out to all friends and family in the Oil City area. Everett is having a sponsored blood drive at Trinity United Methodist Church, 2 Center Street, Oil City Jan 31st from 1:00PM to 7:00PM. See the picture below for more information.
For all those who are not in the Oil City area, we ask that you give blood as well. Everett has needed many blood products and will continue to in the coming months. In addition to giving blood, another way to help, is to get typed for bone marrow. There are many people, including kids, waiting for life saving bone marrow. There are many great stories out there of lives saved by bone marrow donations. (Although we hope not, Everett may need bone marrow)
We wanted to give a couple of special thank yous. First to the friend who sent all the meals from Omaha steaks. We've had 3 meals already and everything was fantastic and easy to make. Great idea and Dad loves the steaks. Second, to a donation from 'Sarah,' although we have never met you, we can't thank you enough for your donation. It's very encouraging when people who have lost someone to cancer, dedicate their lives to helping those who are dealing with it. We continue to be amazed by all the unexpected generousity.
That's all for now, thank the Lord is has been a quiet weekend and start to the week. Love to you all.
We wanted to reach out to all friends and family in the Oil City area. Everett is having a sponsored blood drive at Trinity United Methodist Church, 2 Center Street, Oil City Jan 31st from 1:00PM to 7:00PM. See the picture below for more information.
We wanted to give a couple of special thank yous. First to the friend who sent all the meals from Omaha steaks. We've had 3 meals already and everything was fantastic and easy to make. Great idea and Dad loves the steaks. Second, to a donation from 'Sarah,' although we have never met you, we can't thank you enough for your donation. It's very encouraging when people who have lost someone to cancer, dedicate their lives to helping those who are dealing with it. We continue to be amazed by all the unexpected generousity.
That's all for now, thank the Lord is has been a quiet weekend and start to the week. Love to you all.
Friday, January 14, 2011
E.R. Scare
Everett was pretty lethargic yesterday and had a rough night (waking up 6-7 times by my count) and slept with us half of the night. This morning his temperature went up to 101.7, which is an automatic ER trip for Leukemia patients.
They ran his blood and took xrays and saw he had a touch of pneumonia. Again something that isn't too bad unless you're immune compromised. The Dr. told me that Children's Hospital might want him back but was waiting to hear from them before he ordered an ambulance. This was a low point for me. After 4 weeks and we finally have a break only to be sent back...
After the doctor came back he said to talk to the Dr down in Children's and she said if it was ok with us, they would give him an IV antibiotic and a prescription for more antibiotics for a few days. After talking to Val, I told them, if they're comfortable with it, so are we. Turns out his ANC count is well over 2,000 (which is considered completely healthy, ironically enough) and his white count is very good as well. Along with the pneumonia just being a 'spot' they said he should be fine. His ER doctor was great and even had a 10 year old who had leukemia when he was 2, who he says is full of 'piss and vinegar.' Small world.
So we're home. He fell asleep on the way home and could use a long nap. We'll be keeping a close eye on him and taking him back to the Hospital tomorrow for a follow up. Continue praying for his pneumonia to subside and him to be running around like he was earlier this week.
They ran his blood and took xrays and saw he had a touch of pneumonia. Again something that isn't too bad unless you're immune compromised. The Dr. told me that Children's Hospital might want him back but was waiting to hear from them before he ordered an ambulance. This was a low point for me. After 4 weeks and we finally have a break only to be sent back...
After the doctor came back he said to talk to the Dr down in Children's and she said if it was ok with us, they would give him an IV antibiotic and a prescription for more antibiotics for a few days. After talking to Val, I told them, if they're comfortable with it, so are we. Turns out his ANC count is well over 2,000 (which is considered completely healthy, ironically enough) and his white count is very good as well. Along with the pneumonia just being a 'spot' they said he should be fine. His ER doctor was great and even had a 10 year old who had leukemia when he was 2, who he says is full of 'piss and vinegar.' Small world.
So we're home. He fell asleep on the way home and could use a long nap. We'll be keeping a close eye on him and taking him back to the Hospital tomorrow for a follow up. Continue praying for his pneumonia to subside and him to be running around like he was earlier this week.
Wednesday, January 12, 2011
COMING HOME!
Great news -- Everett's ANC is up from 360 to over 900 today and the doctors plan to discharge him in the morning! I learned how to mix and draw up his ATRA today so we can give him that twice a day at home. Thanks to years at GSK in Safety Pharm this is old hat for me. And we are all set up with a visiting nurse who will come to the house to do his bloodwork and take care of his PICC line. Everett will get to be home for almost 2 weeks and will return to CHP on January 26 to start his first round (of 5 total) of Consolidation treatment. John and I are so excited at the idea of all four of us being home for a couple of weeks. It's just what we need to face another month of treatment:) Everett has just started asking to go home with dad and Avery too, so I think he needs some time at home as much as mom and dad do.
Issues with posting comments
I've had multiple people say they've had problems posting to the blog. I was having similar issues. What I did was sign in to my Google account first (in another Internet browser window or tab) and then post. This should work with other IDs (Yahoo, AOL, Live, etc) as well. If you're still having problems, let me know. Posting as 'Anonymous' should always work, but leave us your name so we know who you are!
We might have some good news coming, but I'll let Val fill you in sometime today ;)
We might have some good news coming, but I'll let Val fill you in sometime today ;)
Monday, January 10, 2011
mom's turn
We are into my second day alone at the hospital with Everett. So far he and I are doing pretty well. We spend most of his awake time in the playroom, which is fine with me. It keeps him happy and keeps me from having to chase him around the hallways:) How a kid with leukemia can have so much energy is beyond me, but I am and will be eternally grateful for his smiling face and his incessant mantra of "wanna play with me mom?!?"
Yesterday Everett's counts were up a bit and we were optimistic that they would continue climbing but today his numbers are down and he needed another platelet transfusion. The doctors say this is normal as his bone marrow recovers, but it's disappointing nonetheless. John and I are trying to stay focused on what matters most - that Everett does well with his treatments and beats this thing, but in the short term it's hard not to want him home so we can be together as a family.
It's crazy to me when I stop for a second and realize that 4 weeks ago at this time our life was just like everyone else's, and our biggest concern was getting our Christmas shopping done, cards in the mail, and presents wrapped. Now we face each day wondering what his blood counts will be and how his little body will react to treatments, and we pray non-stop that God will give us a miracle and cure our precious Everett. Every day is hard and I wonder sometimes how a family does this day after day for years at a time. But then I look around me at the other families in CHP and I KNOW that we can do it because we aren't alone and so many other families have gone before us...if they can do it, so can we.
I know that John has said it before but I want to say it myself - thanks to everyone who has sent us cards, emails, FB messages, posted on this blog, and sent packages to Everett. Every single word of encouragement and hope gets read and read again. John and I are so grateful and humbled by the outpouring of love and support that our family has received in the past 3 weeks. There are no words to describe the world we live in now, and we know that we couldn't get through this without all of you giving us the strength that some days we don't feel we have. Please keep posting, emailing, FB'ing, etc. It brightens our day.
Yesterday Everett's counts were up a bit and we were optimistic that they would continue climbing but today his numbers are down and he needed another platelet transfusion. The doctors say this is normal as his bone marrow recovers, but it's disappointing nonetheless. John and I are trying to stay focused on what matters most - that Everett does well with his treatments and beats this thing, but in the short term it's hard not to want him home so we can be together as a family.
It's crazy to me when I stop for a second and realize that 4 weeks ago at this time our life was just like everyone else's, and our biggest concern was getting our Christmas shopping done, cards in the mail, and presents wrapped. Now we face each day wondering what his blood counts will be and how his little body will react to treatments, and we pray non-stop that God will give us a miracle and cure our precious Everett. Every day is hard and I wonder sometimes how a family does this day after day for years at a time. But then I look around me at the other families in CHP and I KNOW that we can do it because we aren't alone and so many other families have gone before us...if they can do it, so can we.
I know that John has said it before but I want to say it myself - thanks to everyone who has sent us cards, emails, FB messages, posted on this blog, and sent packages to Everett. Every single word of encouragement and hope gets read and read again. John and I are so grateful and humbled by the outpouring of love and support that our family has received in the past 3 weeks. There are no words to describe the world we live in now, and we know that we couldn't get through this without all of you giving us the strength that some days we don't feel we have. Please keep posting, emailing, FB'ing, etc. It brightens our day.
Sunday, January 9, 2011
Daddy is home, Mommy's turn
Daddy, Gramma, and Avery are back in Oil City tonight. Val is going to stick it out with Everett all by herself. If anyone can do it she can. Daddy misses Everett already and this will be his first night without him since his diagnosis. It will be difficult to work this week knowing him and mommy are stuck in the hospital.
Everett's Absolute neutrophil count (ANC) was up to 350 today from 220 the previous day. The ANC determines the body's effectiveness in fighting infection. The doctor's look for a level that is greater than 500 before he can go home. Our hope is that it will be sometime this week or weekend. Otherwise, Everett continues to do very well. It is amazing how many people we have met and how many stories we have heard. Everett has made so many friends along the way.
Tuesday will be day 21 of 30 for his treatment. If he goes home this week, we may have him home for close to 2 weeks before he would have to return to the hospital. My goal is to have the family back together for as long a time as possible and maybe even have our Christmas this weekend. Avery asks about his brother all the time, up to the time I put him to bed. It's hard to know what to tell him but I just say that 'Mommy and Everett are in the hospital, brother is sick' and leave it at that. He knows that his brother and mom are missing but isn't sure why. He has been a champ in his own right and this helps Dad cope. Dad is also grateful that Grammy can be here so that he isn't alone after Avery goes to sleep.
Val will take over the blog for the week. We miss you champ and we love you!
Everett's Absolute neutrophil count (ANC) was up to 350 today from 220 the previous day. The ANC determines the body's effectiveness in fighting infection. The doctor's look for a level that is greater than 500 before he can go home. Our hope is that it will be sometime this week or weekend. Otherwise, Everett continues to do very well. It is amazing how many people we have met and how many stories we have heard. Everett has made so many friends along the way.
Tuesday will be day 21 of 30 for his treatment. If he goes home this week, we may have him home for close to 2 weeks before he would have to return to the hospital. My goal is to have the family back together for as long a time as possible and maybe even have our Christmas this weekend. Avery asks about his brother all the time, up to the time I put him to bed. It's hard to know what to tell him but I just say that 'Mommy and Everett are in the hospital, brother is sick' and leave it at that. He knows that his brother and mom are missing but isn't sure why. He has been a champ in his own right and this helps Dad cope. Dad is also grateful that Grammy can be here so that he isn't alone after Avery goes to sleep.
Val will take over the blog for the week. We miss you champ and we love you!
Friday, January 7, 2011
Friday, Day 17 of Treatment
Well Thursday our White Blood Cell count was down again (boo!), but today it was up! We really have no idea how many 'up' days we'll need before we get a break from the hospital but we're happy any day we go up. Hopefully this means his levels have bottomed out and he's on his way up. People keep saying "he must be so run down" but he seriously hasn't missed a beat. Still running around the halls, jumping up and down, and singing Christmas tunes. We are blessed that he is handling it so well.
We had another special visitor today. Charlie the therapy dog! Everett was able to walk him around the floor and we took some pictures. Couldn't get a smile but Everett thought it was great!
We had another special visitor today. Charlie the therapy dog! Everett was able to walk him around the floor and we took some pictures. Couldn't get a smile but Everett thought it was great!
Saturday is week three for Daddy, Grammy, and Everett. Daddy will be going home on Sunday and Mommy might be coming down tonight or tomorrow with Avery! Everett is very excited and Daddy could use a break from the hospital. We're going to see how Avery handles sleeping at the Ronald McDonald House. Hopefully well, so Mommy and Daddy can see each other more than one a week over these many months of treatments.
Special thanks for Pastor Tom for stopping by today and bringing Everett a book. It's always nice to have a visitor.
Wednesday, January 5, 2011
Quick Update
The doctor's did their daily report and his WBC levels haven't increased. Still no cause for concern and we just wait for them to come back up. They gave him some more platelets as his levels were down a bit for these. They lowered the required platelet count requirement for additional platelet infusion.
Also, I've added some good links and statistics in the right hand column. Hope they can provide some more information for those who are curious.
We got a picture from Tender Teddy. High 5!
Also, I've added some good links and statistics in the right hand column. Hope they can provide some more information for those who are curious.
We got a picture from Tender Teddy. High 5!
Still battling...
I'm a few days behind so I'll try to catch everyone up.
Yesterday morning (4AM, awesome), Everett got some platelets because his counts were a little low. Not dangerously low but enough that they wanted to preemptively get him some more. We received somewhat disappointing news that his White Blood Cell (WBC) was lower. We had seen it go up 2 or 3 days in a row so we had assumed that he was building his counts back up but it turns out he hasn't bottomed out yet. They want to see all his counts at a good level for a few days and his WBC on the way up before he can get a break and go home. Probably not this weekend, but we'll see.
Grammy and Daddy are hanging in there. We spend most of our nights in the playroom and we play a lot of scrabble, rummy, and yahtzee. For the last 3 days, Grammy has yet to win a game, of any variety. But she still enjoys playing :)
As for Everett, he just keeps on trucking. He has become everyone's favorite little boy on the floor due to his constant escaping of his room and talking to his doctor's and nurses. He knows more by name than daddy does. "Hi Andy, what cha doing?" he says. "Hi Sean, I'm going to the playroom!" he yells as he flies by the nurses station. He's so good getting his vitals done and taking his medicine that I've heard a couple of nurses saying they wish they had him on their shift 'tonight.'
Mommy is taking good care of Avery up in Oil City. The days are so long and busy we only talk for 15 minutes usually. She will be back on Saturday, hopefully to pick us up.
We continue to embrace your prayers and well wishes. Remember to include all the sick and injured children as well. This hospital is too big and there's too many children suffering...
Yesterday morning (4AM, awesome), Everett got some platelets because his counts were a little low. Not dangerously low but enough that they wanted to preemptively get him some more. We received somewhat disappointing news that his White Blood Cell (WBC) was lower. We had seen it go up 2 or 3 days in a row so we had assumed that he was building his counts back up but it turns out he hasn't bottomed out yet. They want to see all his counts at a good level for a few days and his WBC on the way up before he can get a break and go home. Probably not this weekend, but we'll see.
Grammy and Daddy are hanging in there. We spend most of our nights in the playroom and we play a lot of scrabble, rummy, and yahtzee. For the last 3 days, Grammy has yet to win a game, of any variety. But she still enjoys playing :)
As for Everett, he just keeps on trucking. He has become everyone's favorite little boy on the floor due to his constant escaping of his room and talking to his doctor's and nurses. He knows more by name than daddy does. "Hi Andy, what cha doing?" he says. "Hi Sean, I'm going to the playroom!" he yells as he flies by the nurses station. He's so good getting his vitals done and taking his medicine that I've heard a couple of nurses saying they wish they had him on their shift 'tonight.'
Mommy is taking good care of Avery up in Oil City. The days are so long and busy we only talk for 15 minutes usually. She will be back on Saturday, hopefully to pick us up.
We continue to embrace your prayers and well wishes. Remember to include all the sick and injured children as well. This hospital is too big and there's too many children suffering...
Sunday, January 2, 2011
Just Grammy, Daddy, and Everett
The real challenge begins. Mommy went home today so she could work this week. Daddy is working from the hospital and helping Grammy take care of Everett. It's tough not having Mommy here already. We will get through it though. Hopefully, we'll all be home by the weekend (just in time for Eagles playoff games).
As for Everett, he hasn't need any IV anything the last couple days and his counts are rising back up (good news!). Before they let him get back home, they want to see them ramping back up and at a certain level. Fighting Leukemia is a constant battle. Now I get frustrated at seeing him so healthy and happy but being stuck in the hospital and other kids going daily. I think I just need some time at home to get away from all the beeping machines, crying, and severely sick kids in the oncology ward. We see 1 year olds basically locked up in their cribs for hours at a time, kids with multiple head surgeries, children of all ages crying, and hear awful stories in the cafeteria about how someone's child got into the hospital. Sometimes I feel like I'm locked in a psychiatric ward.
We always thank you for your continued support. God has blessed us with great friends and family. Hopefully, we'll be celebrating the end of Phase I of our journey. I'm sure Everett is dreaming of the playroom right now...
As for Everett, he hasn't need any IV anything the last couple days and his counts are rising back up (good news!). Before they let him get back home, they want to see them ramping back up and at a certain level. Fighting Leukemia is a constant battle. Now I get frustrated at seeing him so healthy and happy but being stuck in the hospital and other kids going daily. I think I just need some time at home to get away from all the beeping machines, crying, and severely sick kids in the oncology ward. We see 1 year olds basically locked up in their cribs for hours at a time, kids with multiple head surgeries, children of all ages crying, and hear awful stories in the cafeteria about how someone's child got into the hospital. Sometimes I feel like I'm locked in a psychiatric ward.
We always thank you for your continued support. God has blessed us with great friends and family. Hopefully, we'll be celebrating the end of Phase I of our journey. I'm sure Everett is dreaming of the playroom right now...
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