Thursday, July 31, 2008
Bit of good news
The dr said that after Zachs bone marrow tomorrow we get to go home for 10 days!!!!!!!
Prayers for Friday
Hello!
Zach's "soldiers", as he calls them, are coming back. So.....now its time to recheck his bone marrow to make sure the first blast of chemo got rid of the leukemia. Tomorrow is the day they will recheck his marrow.......if there are 15% or less blasts (leukemia cells) he continues with chemotherapy for the next 6 months. If there are more than 15%, he goes for bone marrow transplant. So tomorrow is the big day that determines the course. Dr's feel that he will have less than 15% based on many things including the chromosome type the leukemia cells are and that the blasts in his blood cleared so quickly once chemo started. I feel very confident that he will meet the criteria to continue chemo.
We also found out that we "may" get to leave the hospital for 1-2 days next week before starting the next 8 day cycle of chemotherapy followed by another 2-3 weeks in the hospital. Zachs response was "yeeessss". He never complains.
Gotta go for now....the boss is wanting to get busy with playing for the day.
His rash is just about gone and he has been fever free for 3 days. Thank you God!!
Zachs says "If anyone wants a haircut, I'll give them the bald one!"
more later
Zach and steph
Zach's "soldiers", as he calls them, are coming back. So.....now its time to recheck his bone marrow to make sure the first blast of chemo got rid of the leukemia. Tomorrow is the day they will recheck his marrow.......if there are 15% or less blasts (leukemia cells) he continues with chemotherapy for the next 6 months. If there are more than 15%, he goes for bone marrow transplant. So tomorrow is the big day that determines the course. Dr's feel that he will have less than 15% based on many things including the chromosome type the leukemia cells are and that the blasts in his blood cleared so quickly once chemo started. I feel very confident that he will meet the criteria to continue chemo.
We also found out that we "may" get to leave the hospital for 1-2 days next week before starting the next 8 day cycle of chemotherapy followed by another 2-3 weeks in the hospital. Zachs response was "yeeessss". He never complains.
Gotta go for now....the boss is wanting to get busy with playing for the day.
His rash is just about gone and he has been fever free for 3 days. Thank you God!!
Zachs says "If anyone wants a haircut, I'll give them the bald one!"
more later
Zach and steph
Tuesday, July 29, 2008
Monday, July 28, 2008
Day 5 of rash....its resolving
Well, Zachary's rash has started to decrease and he has gone all day without a fever!!!! Its right on schedule with what the dr had said. The medication peaks on day 4-5 after taking it, so today is day 5. Thank the Lord. His counts are coming up. He actually has white blood cells and some other important cells that fight infections. His platlets should be next to come up and then his blood level. He has had 6 units of blood and at least 6 of platlets since this all began, but that is par for the course.
So....the next big hurdle with come at the end of this week or beginning of next week, which is another bone marrow. The "blast" cells have to be less than 15% to continue with chemo. The all the other tests they have done, including looking at the chromosomes of the leukemia cells themselves, there should be no problem with obtaining that number. But, none the less, we ask for prayers prayers prayers. This past 2 weeks with Zach not having any immunity has been very stressful. He has flown through wondefully and I'm thankful the only complication was a drug reaction. We still have many months left, but God is with him.
His Krabby Patty Restaraunt has been closed due to rash the past few days, but he informed me with have to get back to work!!
To everyone who sends him cards, pictures and gifts, thank you. He loves seeing pictures of the kids who he will know at Danville school. He also has received many cards and pictures from VA from Sharons church, which included pictures of the kids as well. He loves it!!
Zach decided last night he was tired of his hair ending up in his mouth, eyes and all over his bed...now that he is losing it. I had clippers from home here, so he sat in the chair and shaved his head himself!! i told him he looks like a marine or army man. He says he loves it and when dad gets here tonight, he is going to shave his head too! (Jim is not aware of this, but would have no trouble going along with it)
More later
God is in control
Steph
So....the next big hurdle with come at the end of this week or beginning of next week, which is another bone marrow. The "blast" cells have to be less than 15% to continue with chemo. The all the other tests they have done, including looking at the chromosomes of the leukemia cells themselves, there should be no problem with obtaining that number. But, none the less, we ask for prayers prayers prayers. This past 2 weeks with Zach not having any immunity has been very stressful. He has flown through wondefully and I'm thankful the only complication was a drug reaction. We still have many months left, but God is with him.
His Krabby Patty Restaraunt has been closed due to rash the past few days, but he informed me with have to get back to work!!
To everyone who sends him cards, pictures and gifts, thank you. He loves seeing pictures of the kids who he will know at Danville school. He also has received many cards and pictures from VA from Sharons church, which included pictures of the kids as well. He loves it!!
Zach decided last night he was tired of his hair ending up in his mouth, eyes and all over his bed...now that he is losing it. I had clippers from home here, so he sat in the chair and shaved his head himself!! i told him he looks like a marine or army man. He says he loves it and when dad gets here tonight, he is going to shave his head too! (Jim is not aware of this, but would have no trouble going along with it)
More later
God is in control
Steph
Saturday, July 26, 2008
update on Zachs drug reaction
Drs now feel Zachs rash all over his body and his fever are all drug reaction related. It will take until Sunday-Monday for the drug to work its way out of his system. He is still running a fever and the rash hasn't spread more, but now that we know he isn't running a fever from infection, we are ok. We will just treat the itching and the fever. I" m glad it isn't something serious, like an infection, because that is a real concern when he has no immune system. He still is coughing, lungs are clear, so must be postnasal drip. He is taking his first shower today. I've been washing him down these past 3 weeks as he was scared of the aqua barrier they apply to keep his central line covered because it had "tape". He associates anything with tape to hurting as his central line dressing changes hurt when the tape comes off. But he woke up today with a desire to shower...he has been in there for 20 minutes so far.
The dr states that his counts look like they are trying to rev up and once they continue an upward trend for 2-3 days, they will deem him with improving counts for real. Then.....once his counts are up enough, he will again have an immunity and we may be able to leave for a week before the next round of chemo. Please keep your fingers crossed.
Ok..thats it for now, Zach is calling to get out of the shower!!
Love
Steph
The dr states that his counts look like they are trying to rev up and once they continue an upward trend for 2-3 days, they will deem him with improving counts for real. Then.....once his counts are up enough, he will again have an immunity and we may be able to leave for a week before the next round of chemo. Please keep your fingers crossed.
Ok..thats it for now, Zach is calling to get out of the shower!!
Love
Steph
Wednesday, July 23, 2008
I'm a fry cook!
HI to everyone::
Well, I have been dreaming of becoming a fry cook at the Krusty Krab in Bikini Bottom. Its all I could think about the last few days. So, my dad got me all the fixins to set up my own Crabby Patty restaurant right in my room. I even have a line to attach all my orders too. The nurse printed out my own menu which features seaweed salad and peanut butter and jellyfish sandwiches. I have a fry pan and a spatula too.
I had my first cat scan yesterday. I was pretty afraid. I have been coughing and they wanted to see what was going on in my lungs. (They found some patchy spots which could represent fungal stuff or resolving pneumonia). They started me on an anti fungal, which is extremely normal for people like me. I get it in my IV. I had to go for another cat scan to look for stuff in my abdomen and in my sinuses but they didn't find in fungal infection or anything weird. Before the cat scan today,I had to drink some "sour lemonade stuff", which was contrast for the cat scan but then I started having a rash . So I stopped drinking it. Then this afternoon, I ran a small fever when I was getting blood, but they usually give me tylenol and they didn't. Come to find out, the new IV antifungal medicine has side effects of rash and fever. So maybe it wasn't the contrast. THEN.....my tubey (my central line in my chest) stopped working and they can't flush it or draw blood. I couldn't finish getting my blood and I'm waiting for the IV nurse to come and put special stuff in it to dissolve the clot thats blocking it ( again......not uncommon.)
Mom says its been quite a day.
My Dad is here for tonight and Thursday night. I'm having fun playing Wii and my new Tony Hawk video game. My noni was here for the past few days.
So, thats about it. I still can't go out of my room, but my mom keeps me very busy.
Thanks for all the notes on my blog. I love for my mom to read them to me.......She is a cry baby!
Zach
(From Mom: Thanks for all the prayers and keep them coming.....the past 24 hours has been one glitch or another. Hopefully his central line starts working again, no fevers and no rash. Any little thing makes me panic it seems. I will post some picks tomorrow. Thanks for all the notes...he loves them!!)
Well, I have been dreaming of becoming a fry cook at the Krusty Krab in Bikini Bottom. Its all I could think about the last few days. So, my dad got me all the fixins to set up my own Crabby Patty restaurant right in my room. I even have a line to attach all my orders too. The nurse printed out my own menu which features seaweed salad and peanut butter and jellyfish sandwiches. I have a fry pan and a spatula too.
I had my first cat scan yesterday. I was pretty afraid. I have been coughing and they wanted to see what was going on in my lungs. (They found some patchy spots which could represent fungal stuff or resolving pneumonia). They started me on an anti fungal, which is extremely normal for people like me. I get it in my IV. I had to go for another cat scan to look for stuff in my abdomen and in my sinuses but they didn't find in fungal infection or anything weird. Before the cat scan today,I had to drink some "sour lemonade stuff", which was contrast for the cat scan but then I started having a rash . So I stopped drinking it. Then this afternoon, I ran a small fever when I was getting blood, but they usually give me tylenol and they didn't. Come to find out, the new IV antifungal medicine has side effects of rash and fever. So maybe it wasn't the contrast. THEN.....my tubey (my central line in my chest) stopped working and they can't flush it or draw blood. I couldn't finish getting my blood and I'm waiting for the IV nurse to come and put special stuff in it to dissolve the clot thats blocking it ( again......not uncommon.)
Mom says its been quite a day.
My Dad is here for tonight and Thursday night. I'm having fun playing Wii and my new Tony Hawk video game. My noni was here for the past few days.
So, thats about it. I still can't go out of my room, but my mom keeps me very busy.
Thanks for all the notes on my blog. I love for my mom to read them to me.......She is a cry baby!
Zach
(From Mom: Thanks for all the prayers and keep them coming.....the past 24 hours has been one glitch or another. Hopefully his central line starts working again, no fevers and no rash. Any little thing makes me panic it seems. I will post some picks tomorrow. Thanks for all the notes...he loves them!!)
Sunday, July 20, 2008
Hello everyone:
We have seen God's hands working in our lives over the past year, very obvious looking back now. We thought we were moving here for "our plans", but God got us here for Zach and His plans and He is continuing to handle this situation with Zach every day. We have been lead to some awesome drs, to a research hospital which networks with Boston Childrens hospital and dana farber cancer hosp in boston and other facilities throughout the united states, collectively called COG- childrens oncology group. (http://www.curesearch.org/)
As devastating as it was at first to hear the news, we are very blessed and thankful that he has leukemia because there are so many other things, worse things, that he could have....without cures. I'm not sure where this journey is leading us, but Jim and I both feel that good will come out of this experience. Our hope is that Zach will do something new and different which will facilitate further research and help other kids. He was caught very early and he was perfectly healthy all his life .
Zach is doing incredibly well. The dr's just shake their heads. Dr Homenz stated yesterday "I've never seen such a health neutropenic kid in my career". He eats, drinks, plays and acts as normal even though he just completed a 10 day course of intense chemotherapy. We pray several times daily that the side effects are minimal, that he is protected from any infection, and that his blood counts recover quicker and better than they expect. He has had no side effects except 2 episodes of dry heaves which last all of 5 secs each and maybe a little more tired than usual (on a few occassions). Otherwise, he acts just like Zach. He has gained weight, eating well, drinking well. He loves to play Wii, which is provided by Child Life services here at the hospital. At his time he isn't allowed to leave his room, so they bring things (bleached and cleaned) right into his room. They expected for him to have sores in his mouth, but he has not. We had one night when he started to spike a fever, which is bad, but they started him on antibiotics immediatley and he hasn't had a fever since. He has psychologically adjusted amazingly well. He is just now starting to lose his hair, but that is expected and he is ok with it. We told him we could use a biker skull cap, knit caps or regular hats if he wants; he says "no, thats ok". We have decorated his room like we would at home. everyone here is wonderful.
We continue to ask for prayers. Zach has 2 further criteria to meet before he continues with chemo vs transplant. We need prayers that his blood counts (which are all manufactured in his bone marrow) come back within or before the time frame they expect and prayers that on the 29th day, when they redraw his bone marrow, the leukemia cells (or blasts) are 15% or less. If those criteria is met, he will continue with chemo. If they are not met, he will have to go for transplant (now that we found out his sister is a match). I'm hoping for the chemo route. And always, prayers that he does not have an infection during this time when he has no immunity. We are waiting for his blood counts to come up and this is the most dangerous time for him as his own bacteria can cause him to become sick. again: we are isolated to his room for now, we can't even go outside with a mask on, but he is amazing. We keep busy and he understands. For a 6 year old, having your whole world changed in a blink of an eye, he is fabulous.
We did find out last week that if needed, Ashley is a match for Zach. They don't feel that we are headed that way. They tested the chromosomes of the leukemia and they know exactly what they are dealing with and it most favorable to continue chemo, as long as the above criteria is met.
JIm comes up when he has time off. He started at home depot 92 miles from here and they haven't worked with him yet on his schedule. He just worked 7 days straight with 2 days off. he wanted work 4 days, 2 off etcc.....to maximize his time here. We hope the scheduler gets it together.
I stay with zach 24/7 , watch everything like a hawk. I have left a few times for an hour, like yesterday (jim was here), to get groceries, but I feel like I have panic attacks when I'm not here. Lorraine has been coming and keeping me company when Jims not here, which I really appreciate. We have had lots of family here in the initial 2 weeks as Josh, Tina and Ashley were here, Aunt Yvette and Uncle Bob came up with Phil and Lorraine and Karen, Bob and girls were here for a week and popped in often. All this is great and keeps things "as normal" as possible. We also are very thankful for all the support from friends and family who are not here but support us by phone calls, prayer and cards/gifts. Sharon, my sister, thanks for the zeal and zest you give when you are on a mission. Evelyn Richer's mom already knew about Zach before Evelyn told her of us as she had seen Sharons name on the church prayer list( Sharon had called the church's in our area here in vermont to make them aware of Zachary and have him added to all the prayer lists). Thanks for all the prayers.....keep them coming!!
They have been wonderful with providing us with a refridgerator in our room. There is also a Ronald McDonald Family Room on this floor where I can do laundry and cook food. There is a Ronald McDonald House 1mile from here and thats were josh and tina stay. We have a room for whenever family or friends come. I make all of Zachs food. I don't know who touches it in the hosp kitchen or if the plates/utensils are clean. So we are self sufficient with food, plates and utensils
Ray and Evelyn Richer have been a blessing in the midst of this. The Richer's are Jims parents neighbors. We always knew they were special people. The Richer's are planning a benefit on August 14th at Danville School where Zach is to go to school. All money raised will go to Zach. Ray is a wildlife photographer and is an expert on Loons. He will give a presentation on Loons complete with rare photos of these wonderful birds during nesting season. ( The Richers email: rloonnest@fairpoint.net and their website is: http://www.photosbyrayricher.com/ )
So, not only have they organized the benefit, they have prayed, let us store our stuff in their garage,and NOW they have found a home for us to stay in. Evelyn's Aunt Louise has a home in St Johnsbury that she has totally renovated, however, she is not living there. She currently lives in West Virginia. Aunt Louise has offered to have us stay in her home, rent free, for Zach. She states we have answered her prayers. Not only is it exactly what we need for Zachs sake, its only 1 mile (3 minutes) from the hospital, so when we bring Zach home, if he develops a fever we are very close to the hospital where the blood cultures and antibiotic could be given to Zach ASAP and we would be off to Burlington. Evelyns mom, Doris Demick, has also jumped right in and has been wonderful in showing the house and taking the time to clean and move things along with Ray, Evelyn and neighbors. Doris is a retired school teacher and realizes Zach will have to be home schooled/tutored for some of the 1st grade and is gathering the information for us. Thank you Ray,Evelyn, Doris and Aunt Louise.....God is good!
Thats the update for today. Feel free to email or make comments on this site for Zach to read. Today he wants me to tell everyone that he feels good and that he is having a great time beating his Dad at hockey on playstation 2!!
With God all things are possible
We have seen God's hands working in our lives over the past year, very obvious looking back now. We thought we were moving here for "our plans", but God got us here for Zach and His plans and He is continuing to handle this situation with Zach every day. We have been lead to some awesome drs, to a research hospital which networks with Boston Childrens hospital and dana farber cancer hosp in boston and other facilities throughout the united states, collectively called COG- childrens oncology group. (http://www.curesearch.org/)
As devastating as it was at first to hear the news, we are very blessed and thankful that he has leukemia because there are so many other things, worse things, that he could have....without cures. I'm not sure where this journey is leading us, but Jim and I both feel that good will come out of this experience. Our hope is that Zach will do something new and different which will facilitate further research and help other kids. He was caught very early and he was perfectly healthy all his life .
Zach is doing incredibly well. The dr's just shake their heads. Dr Homenz stated yesterday "I've never seen such a health neutropenic kid in my career". He eats, drinks, plays and acts as normal even though he just completed a 10 day course of intense chemotherapy. We pray several times daily that the side effects are minimal, that he is protected from any infection, and that his blood counts recover quicker and better than they expect. He has had no side effects except 2 episodes of dry heaves which last all of 5 secs each and maybe a little more tired than usual (on a few occassions). Otherwise, he acts just like Zach. He has gained weight, eating well, drinking well. He loves to play Wii, which is provided by Child Life services here at the hospital. At his time he isn't allowed to leave his room, so they bring things (bleached and cleaned) right into his room. They expected for him to have sores in his mouth, but he has not. We had one night when he started to spike a fever, which is bad, but they started him on antibiotics immediatley and he hasn't had a fever since. He has psychologically adjusted amazingly well. He is just now starting to lose his hair, but that is expected and he is ok with it. We told him we could use a biker skull cap, knit caps or regular hats if he wants; he says "no, thats ok". We have decorated his room like we would at home. everyone here is wonderful.
We continue to ask for prayers. Zach has 2 further criteria to meet before he continues with chemo vs transplant. We need prayers that his blood counts (which are all manufactured in his bone marrow) come back within or before the time frame they expect and prayers that on the 29th day, when they redraw his bone marrow, the leukemia cells (or blasts) are 15% or less. If those criteria is met, he will continue with chemo. If they are not met, he will have to go for transplant (now that we found out his sister is a match). I'm hoping for the chemo route. And always, prayers that he does not have an infection during this time when he has no immunity. We are waiting for his blood counts to come up and this is the most dangerous time for him as his own bacteria can cause him to become sick. again: we are isolated to his room for now, we can't even go outside with a mask on, but he is amazing. We keep busy and he understands. For a 6 year old, having your whole world changed in a blink of an eye, he is fabulous.
We did find out last week that if needed, Ashley is a match for Zach. They don't feel that we are headed that way. They tested the chromosomes of the leukemia and they know exactly what they are dealing with and it most favorable to continue chemo, as long as the above criteria is met.
JIm comes up when he has time off. He started at home depot 92 miles from here and they haven't worked with him yet on his schedule. He just worked 7 days straight with 2 days off. he wanted work 4 days, 2 off etcc.....to maximize his time here. We hope the scheduler gets it together.
I stay with zach 24/7 , watch everything like a hawk. I have left a few times for an hour, like yesterday (jim was here), to get groceries, but I feel like I have panic attacks when I'm not here. Lorraine has been coming and keeping me company when Jims not here, which I really appreciate. We have had lots of family here in the initial 2 weeks as Josh, Tina and Ashley were here, Aunt Yvette and Uncle Bob came up with Phil and Lorraine and Karen, Bob and girls were here for a week and popped in often. All this is great and keeps things "as normal" as possible. We also are very thankful for all the support from friends and family who are not here but support us by phone calls, prayer and cards/gifts. Sharon, my sister, thanks for the zeal and zest you give when you are on a mission. Evelyn Richer's mom already knew about Zach before Evelyn told her of us as she had seen Sharons name on the church prayer list( Sharon had called the church's in our area here in vermont to make them aware of Zachary and have him added to all the prayer lists). Thanks for all the prayers.....keep them coming!!
They have been wonderful with providing us with a refridgerator in our room. There is also a Ronald McDonald Family Room on this floor where I can do laundry and cook food. There is a Ronald McDonald House 1mile from here and thats were josh and tina stay. We have a room for whenever family or friends come. I make all of Zachs food. I don't know who touches it in the hosp kitchen or if the plates/utensils are clean. So we are self sufficient with food, plates and utensils
Ray and Evelyn Richer have been a blessing in the midst of this. The Richer's are Jims parents neighbors. We always knew they were special people. The Richer's are planning a benefit on August 14th at Danville School where Zach is to go to school. All money raised will go to Zach. Ray is a wildlife photographer and is an expert on Loons. He will give a presentation on Loons complete with rare photos of these wonderful birds during nesting season. ( The Richers email: rloonnest@fairpoint.net and their website is: http://www.photosbyrayricher.com/ )
So, not only have they organized the benefit, they have prayed, let us store our stuff in their garage,and NOW they have found a home for us to stay in. Evelyn's Aunt Louise has a home in St Johnsbury that she has totally renovated, however, she is not living there. She currently lives in West Virginia. Aunt Louise has offered to have us stay in her home, rent free, for Zach. She states we have answered her prayers. Not only is it exactly what we need for Zachs sake, its only 1 mile (3 minutes) from the hospital, so when we bring Zach home, if he develops a fever we are very close to the hospital where the blood cultures and antibiotic could be given to Zach ASAP and we would be off to Burlington. Evelyns mom, Doris Demick, has also jumped right in and has been wonderful in showing the house and taking the time to clean and move things along with Ray, Evelyn and neighbors. Doris is a retired school teacher and realizes Zach will have to be home schooled/tutored for some of the 1st grade and is gathering the information for us. Thank you Ray,Evelyn, Doris and Aunt Louise.....God is good!
Thats the update for today. Feel free to email or make comments on this site for Zach to read. Today he wants me to tell everyone that he feels good and that he is having a great time beating his Dad at hockey on playstation 2!!
With God all things are possible
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