One year ago today, Zach was diagnosed with a life changing disease, cancer. Today has been full of many thoughts like "this time last year we saw the pediatrician" and "this time last year we were on our way to Burlington" and "last year at this time we were being given the confirmed diagnosis."
But, THIS YEAR, Zach is healthy. Today we spent the day at Santa's Village in New Hampshire with his friend Sean, who also had cancer of a different kind. He met Sean while both were in treatment in the hospital. Sean is also 7. So, Sean, his brother and his Mom came up for the weekend from Burlington and today, along with sister Ashley, we spent the day riding a roller coaster, riding bumper cars and just having a happy great day compared to last year on this day. It was so wonderful to see him laugh and be a normal kid.
I just want to thank all of you who prayed for Zach and for us, and also supported us during the past year....that brought us much comfort and peace and of course, the healing of Zach.
The road is still long but I know that we are not alone. I feel in my heart that Zach will be OK. We are blessed today and have been blessed all along. Zach is doing well today.
Happy July 4th tomorrow to everyone......we are celebrating this Independence day in a whole new way!!
Friday, July 3, 2009
Thursday, May 28, 2009
May update
I'm very sorry for not updating sooner.....
Zach is doing wonderful! We just went 4 weeks between dr visits and his blood test is PERFECTLY normal! WHEW! The echocardiogram results will be given tomorrow. One of the side effects of one of the chemo meds was/is heart damage. So, frequent echocardiograms and ekgs were done before, during and now after treatment. His last echo in Feb showed a slight enlargement of his left ventricle, but the function of the heart was fine (it pumped out blood normally) So today, the re-evaluated the enlargement and the function. So...tomorrow I will know if its the same or getting bigger.
Zach is just being a normal "almost" 7 kid. He loves school, plays a lot.....he is starting t-ball saturday. He lost his 2 front bottem teeth and now he is hooked by the "tooth fairy" money....so he wants more teeth gone...like yesterday! His hair is all grown back and he has had his first full haircut. He also had his Make A Wish trip to the Nick hotel in Orlando which included universal and islands of adventure. He had a great time, saw his best friend Sawyer and his family, Ashley and Josh and his grandparents, aunts, uncles and cousins. All that with being slimed...he is happy
We are still staying at the house that Louise has 'loaned" too us.....all I can say in God is good...and he takes care of all your needs. She has offered for us to stay on and we will until she needs it or next spring comes.....We hope to be able to build our house next year in Danville, but we will have to see.
I have to go...we are playing a family game of Trouble......it gets dangerous!
I will write some more later and post some pictures
Happy Spring/almost Summer
Steph
Zach is doing wonderful! We just went 4 weeks between dr visits and his blood test is PERFECTLY normal! WHEW! The echocardiogram results will be given tomorrow. One of the side effects of one of the chemo meds was/is heart damage. So, frequent echocardiograms and ekgs were done before, during and now after treatment. His last echo in Feb showed a slight enlargement of his left ventricle, but the function of the heart was fine (it pumped out blood normally) So today, the re-evaluated the enlargement and the function. So...tomorrow I will know if its the same or getting bigger.
Zach is just being a normal "almost" 7 kid. He loves school, plays a lot.....he is starting t-ball saturday. He lost his 2 front bottem teeth and now he is hooked by the "tooth fairy" money....so he wants more teeth gone...like yesterday! His hair is all grown back and he has had his first full haircut. He also had his Make A Wish trip to the Nick hotel in Orlando which included universal and islands of adventure. He had a great time, saw his best friend Sawyer and his family, Ashley and Josh and his grandparents, aunts, uncles and cousins. All that with being slimed...he is happy
We are still staying at the house that Louise has 'loaned" too us.....all I can say in God is good...and he takes care of all your needs. She has offered for us to stay on and we will until she needs it or next spring comes.....We hope to be able to build our house next year in Danville, but we will have to see.
I have to go...we are playing a family game of Trouble......it gets dangerous!
I will write some more later and post some pictures
Happy Spring/almost Summer
Steph
Friday, March 13, 2009
March update
Hello everyone!
Zachary is fully involved in school and loves it! Today will be the second field trip he has went on since he started. First was the Fairbanks Museum and today is a bus trip to the meadows in Danville to look for signs of animals in the winter. He is so excited to be riding a school bus for the first time. He seems to be adjusting wonderfully to the "new" routine and loves being around other kids. Today walking in he says "I'm so glad I'm going to school today. School is fun!". Thank you to the staff, especially his teacher!
Yesterday was a trip to Burlington for his checkup. He looks great, gaining weight, growing taller and getting his hair back like I added miracle grow! I haven't gotten results of the blood test yet, but his dr says he looks great from medical perspective. He loves to go back and see everyone. Thursday is the clinic day for the hem/onc kids and he was able to spend time with his friend Sean, who just finished his chemo and is doing great and he also met up with Jack, who showed us how to shoot the little rubber bracelets like rubber bands! The Dr's say he is good to be seen once a month but I find that I can only go about 2 weeks, which they said fine...we will see you in 2 weeks. Over winter break I got nervous as he looked pale....so I watched it for a few days and then called because I thought "it" was back. But, its a trigger for me...pale was the symptom that got him diagnosed. The arnp "Beth" was great and said its normal for me to panic, and just to take him up to the local hosp for a quick blood test....I did and all was fine. Whew! But that incident was at the 2 week mark. So, with that said, Zach's make a wish trip is coming up April 5 and I told them I would like him to be seen and blood checked right before we go so that I won't have that worry on my mind and if he does look pale on the trip, I will know that its related to something else.
Zach has been having a lot of fun being "free" from the hospital. He has ridden a snowmobile with Grammie Ann, 4 wheelers with Steve, the neighbor next door and he has gone ice fishing as well. Life is good!
Last night we attended the kickoff meeting for Relay for Life which will be in June. I was invited to go this by a wonderful lady, Jenna, who is the aunt of little boy who is also a cancer (leukemia) survivor. She wrote on the blog faithfully during the whole ordeal and was a wonderful support and cheerleader for Zach and me, even though we had never met. So now, we have met and will be heading up a team who will participate in the relay for life event in June. So, if anyone who reads this wants to participate during the event or would like to send a contribution, please let me know: jsporter008@gmail.com.
I have explained the importance of fundraising to Zach and he understands that money is important in continuing the research to find a cure for cancer. He understands that's what has gotten him to where he is....scientists and doctors researching, testing, trialing new medications (which Zach is part of a study and received experimental/trialing chemo). He understands that 30-40 years ago, children who had AML had no hope and that more and more children are being diagnosed with this form of leukemia that used to be seen in people over 60 only. He is proud that he is part of something that may make a difference to other children, of course he states he wished he didn't have to have leukemia. He knows that he is part of a medical study/clinical trial and that's how medicines are found to be useful in treating and hopefully curing cancer. He also says that he is glad that they found medicines that made him better so he didn't have to die like kids with AML 40 years ago. Zachary is amazing when it comes to understanding things....it amazes us that when we explain something, like this, to him, he "gets it". He processes it, asks questions until he settles it in his brain. So, he wants to be involved in helping find a cure. He has said to me that when he gets older he wants to invent a medicine that only kills the cancer but doesn't effect the kids (hairloss, nausea, no immune system etc..)
A special request: We have seen first hand the power of prayer with Zach. there is a little boy, Jack, who is suffering with a terrible cancer, neuroblastoma, up at the hospital. There is no cure, all the medicines treat it but it comes back worse. One of Zachs drs heads up special studies/trials for neuroblastoma children and these kids come from all over country and world to see this dr. She is also part of the research and study of this awful cancer. Anyway, Jack is at the hospital again after being part of another trial/study last summer. The parents have taken him everywhere for treatment, they are from England and come to the US for the newest studies and trials hoping for a cure. He has had everything out there available, but its back. the dr is opening up a new trial of medicine on Monday which he will receive but he is having pain. I met up with him and his mother yesterday. I let her know we pray for Jack and for them and I'm asking for all of you to also pray for this child. I can only imagine what the parents are going through as well as Jack. Anything is possible with God, I don't care what drs/scientists say.
So, thank you in advance for adding this boy to your prayers. The power of prayer...its amazing!
Happy almost spring
Steph
Zachary is fully involved in school and loves it! Today will be the second field trip he has went on since he started. First was the Fairbanks Museum and today is a bus trip to the meadows in Danville to look for signs of animals in the winter. He is so excited to be riding a school bus for the first time. He seems to be adjusting wonderfully to the "new" routine and loves being around other kids. Today walking in he says "I'm so glad I'm going to school today. School is fun!". Thank you to the staff, especially his teacher!
Yesterday was a trip to Burlington for his checkup. He looks great, gaining weight, growing taller and getting his hair back like I added miracle grow! I haven't gotten results of the blood test yet, but his dr says he looks great from medical perspective. He loves to go back and see everyone. Thursday is the clinic day for the hem/onc kids and he was able to spend time with his friend Sean, who just finished his chemo and is doing great and he also met up with Jack, who showed us how to shoot the little rubber bracelets like rubber bands! The Dr's say he is good to be seen once a month but I find that I can only go about 2 weeks, which they said fine...we will see you in 2 weeks. Over winter break I got nervous as he looked pale....so I watched it for a few days and then called because I thought "it" was back. But, its a trigger for me...pale was the symptom that got him diagnosed. The arnp "Beth" was great and said its normal for me to panic, and just to take him up to the local hosp for a quick blood test....I did and all was fine. Whew! But that incident was at the 2 week mark. So, with that said, Zach's make a wish trip is coming up April 5 and I told them I would like him to be seen and blood checked right before we go so that I won't have that worry on my mind and if he does look pale on the trip, I will know that its related to something else.
Zach has been having a lot of fun being "free" from the hospital. He has ridden a snowmobile with Grammie Ann, 4 wheelers with Steve, the neighbor next door and he has gone ice fishing as well. Life is good!
Last night we attended the kickoff meeting for Relay for Life which will be in June. I was invited to go this by a wonderful lady, Jenna, who is the aunt of little boy who is also a cancer (leukemia) survivor. She wrote on the blog faithfully during the whole ordeal and was a wonderful support and cheerleader for Zach and me, even though we had never met. So now, we have met and will be heading up a team who will participate in the relay for life event in June. So, if anyone who reads this wants to participate during the event or would like to send a contribution, please let me know: jsporter008@gmail.com.
I have explained the importance of fundraising to Zach and he understands that money is important in continuing the research to find a cure for cancer. He understands that's what has gotten him to where he is....scientists and doctors researching, testing, trialing new medications (which Zach is part of a study and received experimental/trialing chemo). He understands that 30-40 years ago, children who had AML had no hope and that more and more children are being diagnosed with this form of leukemia that used to be seen in people over 60 only. He is proud that he is part of something that may make a difference to other children, of course he states he wished he didn't have to have leukemia. He knows that he is part of a medical study/clinical trial and that's how medicines are found to be useful in treating and hopefully curing cancer. He also says that he is glad that they found medicines that made him better so he didn't have to die like kids with AML 40 years ago. Zachary is amazing when it comes to understanding things....it amazes us that when we explain something, like this, to him, he "gets it". He processes it, asks questions until he settles it in his brain. So, he wants to be involved in helping find a cure. He has said to me that when he gets older he wants to invent a medicine that only kills the cancer but doesn't effect the kids (hairloss, nausea, no immune system etc..)
A special request: We have seen first hand the power of prayer with Zach. there is a little boy, Jack, who is suffering with a terrible cancer, neuroblastoma, up at the hospital. There is no cure, all the medicines treat it but it comes back worse. One of Zachs drs heads up special studies/trials for neuroblastoma children and these kids come from all over country and world to see this dr. She is also part of the research and study of this awful cancer. Anyway, Jack is at the hospital again after being part of another trial/study last summer. The parents have taken him everywhere for treatment, they are from England and come to the US for the newest studies and trials hoping for a cure. He has had everything out there available, but its back. the dr is opening up a new trial of medicine on Monday which he will receive but he is having pain. I met up with him and his mother yesterday. I let her know we pray for Jack and for them and I'm asking for all of you to also pray for this child. I can only imagine what the parents are going through as well as Jack. Anything is possible with God, I don't care what drs/scientists say.
So, thank you in advance for adding this boy to your prayers. The power of prayer...its amazing!
Happy almost spring
Steph
Monday, February 16, 2009
Zach is starting school!!
Last week Zach stated "I want to go to school and be around kids". Who can blame him! So, today we went off to St Johnsbury school and registered him and he starts on Wed. Everyone there was so welcoming and he went right off with the guidance counselor for a tour of the school and to his new class. When I found him in his new room, he was sitting on the carpet with all the other kids having a spelling lesson....it was a moment for me. He is so excited to be "normal" as he calls it. His port came out last Thursday and he is able, for the first time in 7 month, to shower or bath without worry of his port or wearing a barrier, go to bed without having to flush his "tubies" and not have to worry about the dreaded dressing changes. He has hair, eyebrows and no port in his chest and now with school...he says "I'm so excited. I"m normal, I'm me again!"
That explains it all!
He is doing wonderfully. His lab work is great, he feels great. We have visits once per month now at the drs. So, now some sense of normalcy begins.
Thanks for everyones concern, support and prayers...I can never say it enough
More later
Steph
That explains it all!
He is doing wonderfully. His lab work is great, he feels great. We have visits once per month now at the drs. So, now some sense of normalcy begins.
Thanks for everyones concern, support and prayers...I can never say it enough
More later
Steph
Thursday, February 5, 2009
February update
Hello everyone!
We have officially been home one month now and everything has been going very well. Zach has been to the dr's for check ups during this time and everything has been wonderful. His counts all came back up and he needed no further transfusions. He is scheduled to have his port removed from his chest next Thursday as well as an echo cardiogram and labs. Then he will be to the once a month check-up! Its so wonderful to see his pink cheeks and abundance of energy (although at times I am pooped!) But, he is doing wonderfully.
Zach is adjusting well and states he almost feels "normal". His hair is coming back like miracle grow was placed on it...its going to be about the same color from what I can tell. His eyebrows are back as well as his eyelashes. He says that as soon as his port is out...he will be back to normal! He is ready. We are going to hopefully get him started in cub scouts and we are going to get back to church. He really needs to make some friends and be a little boy again.
The Make A Wish Foundation has set our dates to go to the Nickelodeon Hotel in Florida for April 5- April 11. Zach is soooooooo excited!! We mark off the days every morning. He is so excited to see his best friend Sawyer, swim and play in the awesome pool area....and in general....live it up at the Nick hotel!!!!
Zach is back to a schedule of homeschooling. In November when he was so sick, we slacked of the schooling a bit, but now we are back on track....even though there is much grumbling from Zach! He wants to go to the outdoor ice rink all day long to practice his hockey...which is understandable, but school first. And...he skated once and did very well, but he refuses to try skating again. His idea of hockey is to go the ice with his boots on and slide around. Ask Sharon....falling on your backside hurts skates or boots.
Speaking of Sharon, she came for a visit, which was great. She taught me how to crochet and I'm working on a scarf for my mom (her mom too!). Ashley and Josh flew up from Florida for 5 days and we had a wonderful and very much needed "family time". It was so nice to have all of us together after everything that has gone on. We just relaxed and enjoyed being all together. We did, however, tackle some hills and did some sledding......as you can see in the pictures that follow..some peoples faces were in the snow more than others!
Well, that's it for now. We are enjoying the winter. We had a great snowy day when Ashley and Josh were here....I think here in St J we got around 13.5 inches that day. It's really beautiful when its a sunny day...with the blue sky and white snow...and the sunsets are just gorgeous.
Thanks for all the prayers and support everyone has given us. Please keep Zach in your prayers as we still have a road to go down. First is to get to the 2 year mark without a relapse...then to the 5 year mark to be considered "cured". God is good and believe that Zach will be fine.....its just very difficult to have that hanging over your head, speaking as a mother.
I'll write more later!
Steph (and Zach says "HI"....lalalalahaaahaha bobobobooooo) he is a goofball!
We have officially been home one month now and everything has been going very well. Zach has been to the dr's for check ups during this time and everything has been wonderful. His counts all came back up and he needed no further transfusions. He is scheduled to have his port removed from his chest next Thursday as well as an echo cardiogram and labs. Then he will be to the once a month check-up! Its so wonderful to see his pink cheeks and abundance of energy (although at times I am pooped!) But, he is doing wonderfully.
Zach is adjusting well and states he almost feels "normal". His hair is coming back like miracle grow was placed on it...its going to be about the same color from what I can tell. His eyebrows are back as well as his eyelashes. He says that as soon as his port is out...he will be back to normal! He is ready. We are going to hopefully get him started in cub scouts and we are going to get back to church. He really needs to make some friends and be a little boy again.
The Make A Wish Foundation has set our dates to go to the Nickelodeon Hotel in Florida for April 5- April 11. Zach is soooooooo excited!! We mark off the days every morning. He is so excited to see his best friend Sawyer, swim and play in the awesome pool area....and in general....live it up at the Nick hotel!!!!
Zach is back to a schedule of homeschooling. In November when he was so sick, we slacked of the schooling a bit, but now we are back on track....even though there is much grumbling from Zach! He wants to go to the outdoor ice rink all day long to practice his hockey...which is understandable, but school first. And...he skated once and did very well, but he refuses to try skating again. His idea of hockey is to go the ice with his boots on and slide around. Ask Sharon....falling on your backside hurts skates or boots.
Speaking of Sharon, she came for a visit, which was great. She taught me how to crochet and I'm working on a scarf for my mom (her mom too!). Ashley and Josh flew up from Florida for 5 days and we had a wonderful and very much needed "family time". It was so nice to have all of us together after everything that has gone on. We just relaxed and enjoyed being all together. We did, however, tackle some hills and did some sledding......as you can see in the pictures that follow..some peoples faces were in the snow more than others!
Well, that's it for now. We are enjoying the winter. We had a great snowy day when Ashley and Josh were here....I think here in St J we got around 13.5 inches that day. It's really beautiful when its a sunny day...with the blue sky and white snow...and the sunsets are just gorgeous.
Thanks for all the prayers and support everyone has given us. Please keep Zach in your prayers as we still have a road to go down. First is to get to the 2 year mark without a relapse...then to the 5 year mark to be considered "cured". God is good and believe that Zach will be fine.....its just very difficult to have that hanging over your head, speaking as a mother.
I'll write more later!
Steph (and Zach says "HI"....lalalalahaaahaha bobobobooooo) he is a goofball!
Thursday, January 22, 2009
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