Ok so its been WAY to long sense I last updated, but having not computer makes it kinda tricky. Ok so last time I wrote it was one week after Devin's surgery, he was doing great and we were due to go home very soon. Yeah well things didn't exactly happen that way.
Here is a list of events that have happened.
Ok Sept 10th Devin's surgery, Sept 15th round 6 Chemo. By the tie Devin recovered enough from the chemo for it to be safe for him to fly it was time for round 7 of chemo, so we decided to just do it here. After round 7 of chemo Devin got sick and ended up in the hospital on breathing treatments due to him wheezing. At this point the Dr's decided by looking at his history of breathing issues to give him the diagnosis of Asthma along with everything else lol. So now he is on 2 addition meds, including an inhaler. Ok so by the time all of this is over its time for follow up scans and tests to see how the chemo has worked. So again we just did them here. Well we got all the results back and still no change, still in the bones and bone marrow. SEVEN rounds of chemo and still no change, it was a very discouraging day.
After the Dr's read over the scan results they decided chemo was not working for Devin and wanted to move to something called Hot 3F8 (131 - 3F8) Basically its a radioactive monoclonal antibody that attaches itself to the cancer cells and allows the body's defense system to attack the cancer itself, along with radiation. It is transfused over a 1/2 an hour, then 24 hours later he gets a drug called Bevacizumab. This drug then blocks the blood supply to any cancer cells, thus helping the process of killing the cell. He will also receive the Bevacizumab 14 days later. There are less side effects with this treatment than chemo, the cell counts will still drop and there is risk of damaging his thyroid. Pain is the major side effect from this treatment, the children are in extreme pain during the infusion itself, but the pain disappears shortly after. They pre medicate them with pain meds, but the pain is hard to control. So Devin started this treatment yesterday. Let me just say wow...... that 45 minutes Devin was in pain was probably the hardest in my life. He curled himself up in a little ball and was in to much pain to even scream, he more like grunted. He got red and sweaty and it was just horrible. He broke out in hives, but they disappeared shortly after. Due to the treatment being radioactive, u have to limit you exposure to him, so the further away you stand the better. Yeah right, even the doctor was like no you need to hold his hand so he doesn't loose reality. Basically the pain was so intense they were scared that if Devin didn't see me for even 2 minutes he would loose it and even if I came back in he wouldn't know whats going on. Currently he is still giving of radiation, so he has to stay behind a lead wall and I have to limit how much I can go in with him. Now any of you who know Devin and how clingy he is too me KNOW that this is a very hard task lol. Well at least the worst is over. It takes 28 days to complete this cycle and he'll get another dose on day 29. Dr. Moedak hopes to be able to do 4 of these treatments, but it all depends on if he creates and antibody to the 3F8 called HAMA. If he does then he won't be able to do more 3F8 until it goes away. This is all very confusing stuff lol, its like starting all over again. Just when I was understanding the chemo and knew what to expect and the definitions of EVERYTHING, they throw this world of 3F8 at me. I feel like my brain can not retain anymore of this stuff lol.Ok so that's were we are treatment wise.
All together is has been a long couple of months. My grandmother went into the hospital, she was on a ventilator for a while and they didn't think she was going to make it. She's doing a little better now, they transferred her to a nursing home last week. She will not get to go back home. My mom went home when she went into the hospital because we really didn't think she was going to make it, but seeing she is more stable she is coming back this weekend. My sister Crystal was diagnosed with the worst kind of lupus this month. She was in the hospital for a while too, they couldn't figure out what was wrong with her. So last week they started her on Oral Chemotherapy. She is already loosing hair, so her and Devin can be bald buddies lol. This has just been a good year for our family. It seems like on thing after another. My poor dad one daughter with cancer the end of last year, his grandson gets cancer in May, mother goes into the hospital in Oct, and other daughter gets Lupus in Nov. Well I am staying positive, the year is almost over and next year is going to be different. I just know it lol. One day at a time....some times its one hour at a time lol.
Ok well now that i have everyone up to speed I will try to find a way to keep updating. I really need a laptop seeing we are going to be here for AT LEAST another 4 months, but we have no fundraisers in the works with all the stuff going on, not to mention we found out not everyone who wants to help us has the best intentions.So anyway we'll see what happens.
Hope all is well. Please keep Devin in your prayers. And say an extra prayer for my Grandmother and Sister. Thank you!
Melissa and Devin Deschaine
Thursday, November 20, 2008
November 20, 2008
Ok so its been WAY to long sense I last updated, but having not computer makes it kinda tricky. Ok so last time I wrote it was one week after Devin's surgery, he was doing great and we were due to go home very soon. Yeah well things didn't exactly happen that way.
Here is a list of events that have happened.
Ok Sept 10th Devin's surgery, Sept 15th round 6 Chemo. By the tie Devin recovered enough from the chemo for it to be safe for him to fly it was time for round 7 of chemo, so we decided to just do it here. After round 7 of chemo Devin got sick and ended up in the hospital on breathing treatments due to him wheezing. At this point the Dr's decided by looking at his history of breathing issues to give him the diagnosis of Asthma along with everything else lol. So now he is on 2 addition meds, including an inhaler. Ok so by the time all of this is over its time for follow up scans and tests to see how the chemo has worked. So again we just did them here. Well we got all the results back and still no change, still in the bones and bone marrow. SEVEN rounds of chemo and still no change, it was a very discouraging day.
After the Dr's read over the scan results they decided chemo was not working for Devin and wanted to move to something called Hot 3F8 (131 - 3F8) Basically its a radioactive monoclonal antibody that attaches itself to the cancer cells and allows the body's defense system to attack the cancer itself, along with radiation. It is transfused over a 1/2 an hour, then 24 hours later he gets a drug called Bevacizumab. This drug then blocks the blood supply to any cancer cells, thus helping the process of killing the cell. He will also receive the Bevacizumab 14 days later. There are less side effects with this treatment than chemo, the cell counts will still drop and there is risk of damaging his thyroid. Pain is the major side effect from this treatment, the children are in extreme pain during the infusion itself, but the pain disappears shortly after. They pre medicate them with pain meds, but the pain is hard to control. So Devin started this treatment yesterday. Let me just say wow...... that 45 minutes Devin was in pain was probably the hardest in my life. He curled himself up in a little ball and was in to much pain to even scream, he more like grunted. He got red and sweaty and it was just horrible. He broke out in hives, but they disappeared shortly after. Due to the treatment being radioactive, u have to limit you exposure to him, so the further away you stand the better. Yeah right, even the doctor was like no you need to hold his hand so he doesn't loose reality. Basically the pain was so intense they were scared that if Devin didn't see me for even 2 minutes he would loose it and even if I came back in he wouldn't know whats going on. Currently he is still giving of radiation, so he has to stay behind a lead wall and I have to limit how much I can go in with him. Now any of you who know Devin and how clingy he is too me KNOW that this is a very hard task lol. Well at least the worst is over. It takes 28 days to complete this cycle and he'll get another dose on day 29. Dr. Moedak hopes to be able to do 4 of these treatments, but it all depends on if he creates and antibody to the 3F8 called HAMA. If he does then he won't be able to do more 3F8 until it goes away. This is all very confusing stuff lol, its like starting all over again. Just when I was understanding the chemo and knew what to expect and the definitions of EVERYTHING, they throw this world of 3F8 at me. I feel like my brain can not retain anymore of this stuff lol.Ok so that's were we are treatment wise.
All together is has been a long couple of months. My grandmother went into the hospital, she was on a ventilator for a while and they didn't think she was going to make it. She's doing a little better now, they transferred her to a nursing home last week. She will not get to go back home. My mom went home when she went into the hospital because we really didn't think she was going to make it, but seeing she is more stable she is coming back this weekend. My sister Crystal was diagnosed with the worst kind of lupus this month. She was in the hospital for a while too, they couldn't figure out what was wrong with her. So last week they started her on Oral Chemotherapy. She is already loosing hair, so her and Devin can be bald buddies lol. This has just been a good year for our family. It seems like on thing after another. My poor dad one daughter with cancer the end of last year, his grandson gets cancer in May, mother goes into the hospital in Oct, and other daughter gets Lupus in Nov. Well I am staying positive, the year is almost over and next year is going to be different. I just know it lol. One day at a time....some times its one hour at a time lol.
Ok well now that i have everyone up to speed I will try to find a way to keep updating. I really need a laptop seeing we are going to be here for AT LEAST another 4 months, but we have no fundraisers in the works with all the stuff going on, not to mention we found out not everyone who wants to help us has the best intentions.So anyway we'll see what happens.
Hope all is well. Please keep Devin in your prayers. And say an extra prayer for my Grandmother and Sister. Thank you!
Melissa and Devin Deschaine
Here is a list of events that have happened.
Ok Sept 10th Devin's surgery, Sept 15th round 6 Chemo. By the tie Devin recovered enough from the chemo for it to be safe for him to fly it was time for round 7 of chemo, so we decided to just do it here. After round 7 of chemo Devin got sick and ended up in the hospital on breathing treatments due to him wheezing. At this point the Dr's decided by looking at his history of breathing issues to give him the diagnosis of Asthma along with everything else lol. So now he is on 2 addition meds, including an inhaler. Ok so by the time all of this is over its time for follow up scans and tests to see how the chemo has worked. So again we just did them here. Well we got all the results back and still no change, still in the bones and bone marrow. SEVEN rounds of chemo and still no change, it was a very discouraging day.
After the Dr's read over the scan results they decided chemo was not working for Devin and wanted to move to something called Hot 3F8 (131 - 3F8) Basically its a radioactive monoclonal antibody that attaches itself to the cancer cells and allows the body's defense system to attack the cancer itself, along with radiation. It is transfused over a 1/2 an hour, then 24 hours later he gets a drug called Bevacizumab. This drug then blocks the blood supply to any cancer cells, thus helping the process of killing the cell. He will also receive the Bevacizumab 14 days later. There are less side effects with this treatment than chemo, the cell counts will still drop and there is risk of damaging his thyroid. Pain is the major side effect from this treatment, the children are in extreme pain during the infusion itself, but the pain disappears shortly after. They pre medicate them with pain meds, but the pain is hard to control. So Devin started this treatment yesterday. Let me just say wow...... that 45 minutes Devin was in pain was probably the hardest in my life. He curled himself up in a little ball and was in to much pain to even scream, he more like grunted. He got red and sweaty and it was just horrible. He broke out in hives, but they disappeared shortly after. Due to the treatment being radioactive, u have to limit you exposure to him, so the further away you stand the better. Yeah right, even the doctor was like no you need to hold his hand so he doesn't loose reality. Basically the pain was so intense they were scared that if Devin didn't see me for even 2 minutes he would loose it and even if I came back in he wouldn't know whats going on. Currently he is still giving of radiation, so he has to stay behind a lead wall and I have to limit how much I can go in with him. Now any of you who know Devin and how clingy he is too me KNOW that this is a very hard task lol. Well at least the worst is over. It takes 28 days to complete this cycle and he'll get another dose on day 29. Dr. Moedak hopes to be able to do 4 of these treatments, but it all depends on if he creates and antibody to the 3F8 called HAMA. If he does then he won't be able to do more 3F8 until it goes away. This is all very confusing stuff lol, its like starting all over again. Just when I was understanding the chemo and knew what to expect and the definitions of EVERYTHING, they throw this world of 3F8 at me. I feel like my brain can not retain anymore of this stuff lol.Ok so that's were we are treatment wise.
All together is has been a long couple of months. My grandmother went into the hospital, she was on a ventilator for a while and they didn't think she was going to make it. She's doing a little better now, they transferred her to a nursing home last week. She will not get to go back home. My mom went home when she went into the hospital because we really didn't think she was going to make it, but seeing she is more stable she is coming back this weekend. My sister Crystal was diagnosed with the worst kind of lupus this month. She was in the hospital for a while too, they couldn't figure out what was wrong with her. So last week they started her on Oral Chemotherapy. She is already loosing hair, so her and Devin can be bald buddies lol. This has just been a good year for our family. It seems like on thing after another. My poor dad one daughter with cancer the end of last year, his grandson gets cancer in May, mother goes into the hospital in Oct, and other daughter gets Lupus in Nov. Well I am staying positive, the year is almost over and next year is going to be different. I just know it lol. One day at a time....some times its one hour at a time lol.
Ok well now that i have everyone up to speed I will try to find a way to keep updating. I really need a laptop seeing we are going to be here for AT LEAST another 4 months, but we have no fundraisers in the works with all the stuff going on, not to mention we found out not everyone who wants to help us has the best intentions.So anyway we'll see what happens.
Hope all is well. Please keep Devin in your prayers. And say an extra prayer for my Grandmother and Sister. Thank you!
Melissa and Devin Deschaine
Monday, September 15, 2008
September 10, 2008 Surgery
Ok so Devin went to surgery yesterday morning about 8am. They had a lot of prepping and stuff to do like his bone marrow aspirates and placing an epideral catheter for pain management. So they didn't actually begin the surgery and make the first incision until around 10am. They were antisipating a 12 hour surgery. Well only 4 hours later around 2 30 they called to tell me they were closing up, they got the tumor out!!!!!!!!!!!!
So he was being moved to recovery while my mom and I talked to the the surgeon. He told us the tumor practically wanted to come out lol. They removed he right adrenal gland, but thankfully were able to save the kidney. So before the surgery they told me he would be on a ventilator (a tube down his throat that breaths for him) for about 24 hours until he can start breathing on his own. Well not een an hour after surgery still in the recovery room, Devin was fighting the tube down his throat so they took it out! The nurses in the ICU call him the Neuroblastoma Rockstar, that they've never seen a kid with his diagnosis after 5 rounds of chemo and surgery look that good. Plus NOT be on a vent. So all is very well we are being transfered back from the ICU to Sloan Kettering today ( was supposed to be in 3 days DEVIN ROCKS) Still no sure when we are going home but at least my lil man made it through surgery and is doing well. Thank God and thank you to every one that prayed for my lil guy!
We took a grand tour of Manhatten before surgery Devin LOVED it... shoot I loved it. We went to china town, little italy we rode the subway, it was awesome. I want to move here lol, if only it wasn't so expensive!!!
We took a grand tour of Manhatten before surgery Devin LOVED it... shoot I loved it. We went to china town, little italy we rode the subway, it was awesome. I want to move here lol, if only it wasn't so expensive!!!
I have like 500000000000000 pictures to upload so I will do that later tonight or tomorrow!!!!
Talk to you all soon!!!
Missy and Devin!!!
Talk to you all soon!!!
Missy and Devin!!!
Thursday, September 4, 2008
September 04, 2008
Devin @ 5am going in for his stem cell harvest! That smile is what keeps me going!Hey everyone!
So things have been pretty good with devin right now. He's been feeling ok and no hospitalizations lately which is always a great thing lol!
Surgery is FINALLY booked for the 10th of Sept which is this Wednesday. We are leaving for NY on Monday. Looking at whats going on I can't believe that its already time for surgery. He's already had 5 rounds of chemo. I looked at my counter today and Devin has been diagnosed with cancer for 119 days. Wow I can't believe it. Everyday seems to crawl by but now looking at how far we already are is crazy. In one way I am scared shitless of the surgery.. it makes my stomach turn just thinking about it. But on the other hand it is one more step towards this being over. BUT all at the same time, I'm keep thinking its almost over after the surgery, but its not. Not even close. we still have months of chemo bone marrow transplant and only god knows that else. I am a person who likes to know the who what when wheres of things and that what sucks about this is there is no definite answers. Devin could have cancer for weeks months YEARS!! Uhh I guess I am just OVER all this, this week. I'll have a different look on it next week lol.. as crazy as it sounds.
Well I don't know what the computer situation in NY will be so I don't know if I will be able to update until I get back but I wil try.
Again I ask for everyone's prayers now more than ever. Please pray for a successful surgery and a speedy recovery!!!!!!!
Thank you
Melissa and Devin
Monday, August 11, 2008
August 11, 2008
Ok so Devin had a MIBG scan a Ct scn and a bone marrow aspirate on Thursday of last week, like the 7th I think.
WELL we got the results today and the cancer is 100% gone from his bone marrow!!!!!!!!!!!!!!!!! No neuroblastoma cells present!!!!
The tumor has shrunk by about a cm, which isn't much but its something!
The cancer in the bones hasn't changed any, but thats ok one step at a time!!!
I am filling recharged today! I need a little good news from time to time to keep be going in this fight! I am so happy for my lil fighter! He's ont he way to kicking cancers butt!
We go in for ROund 5 of chemo tomorrow and should be home Fri or Sat. Then Surgery in NY is scheduled for either Sept 4th or 11th we don't a a for sure whihc on yet, but either was its soon.
So in a month there will be no tumor... no bone marrow and hopefully a decrease in the amount of cancer in the bone!!!!
Thank you for everyone who prayed for good results! Keep the prayers coming they are def. working!!!!!!!!!!!!!!!
Thanks Everyone
Missy and Devin!
WELL we got the results today and the cancer is 100% gone from his bone marrow!!!!!!!!!!!!!!!!! No neuroblastoma cells present!!!!
The tumor has shrunk by about a cm, which isn't much but its something!
The cancer in the bones hasn't changed any, but thats ok one step at a time!!!
I am filling recharged today! I need a little good news from time to time to keep be going in this fight! I am so happy for my lil fighter! He's ont he way to kicking cancers butt!
We go in for ROund 5 of chemo tomorrow and should be home Fri or Sat. Then Surgery in NY is scheduled for either Sept 4th or 11th we don't a a for sure whihc on yet, but either was its soon.
So in a month there will be no tumor... no bone marrow and hopefully a decrease in the amount of cancer in the bone!!!!
Thank you for everyone who prayed for good results! Keep the prayers coming they are def. working!!!!!!!!!!!!!!!
Thanks Everyone
Missy and Devin!
Friday, August 1, 2008
August 01, 2008
Uh I am horrible on keeping up with this thing. It just seems like I am so worn down lately. Well Devin finished round 4 of chemo, doing well so far. He did end up back in the hospital for 3 days because of a fever, but thats just become a normal thing.
So Devin was scheduled for another bone marrow aspiration and ct scan today, but because he is sick (congestion and cough) they decided to hold off until Wed. and Thursday is another MIBG scan. Sense his 5th round of chemo was scheduled for Monday they are putting it off until the 11th. So we will know if there is any improvement Around Friday of this week.
He surgery has been pushed back until Sept. 11th, at Sloan Kettering in NY ( ironic right we'll be in NY on sept 11th) So we'll be going up there about 10 days before that. I am anxious and scared shitless all at the same time. It makes my stomach tuen just thinking about them cutting my baby open. But we have to do what we have to do right? Something I've come to live by lol.
Ok Well I will write more when I know more!
Thanks for reading!
Missy and Devin
So Devin was scheduled for another bone marrow aspiration and ct scan today, but because he is sick (congestion and cough) they decided to hold off until Wed. and Thursday is another MIBG scan. Sense his 5th round of chemo was scheduled for Monday they are putting it off until the 11th. So we will know if there is any improvement Around Friday of this week.
He surgery has been pushed back until Sept. 11th, at Sloan Kettering in NY ( ironic right we'll be in NY on sept 11th) So we'll be going up there about 10 days before that. I am anxious and scared shitless all at the same time. It makes my stomach tuen just thinking about them cutting my baby open. But we have to do what we have to do right? Something I've come to live by lol.
Ok Well I will write more when I know more!
Thanks for reading!
Missy and Devin
July 09, 2008
The nurse left Devin's chart in the room for a little while, so me being me decided to read it. I skimed through to the part about his scans when he was originaly diagnosed back in May. It said there was cancer on the adrenal gland, femor, hips bone marrow and SKULL!!! I was shocked the Dr's never mentioned the skull to me before this. So I found one of his doc's, but it was the bone marrow dr and asked her. She confirmed that yes the cancer is in the base of his skull and the portion of the skull above his Left eye brow. I was shocked I thought all the suprised were over. I haven't seen the oncology doc sense but I am certainly going to stress why this information wasn't given to me prior.
So Devin had his stem cell harvest on Tuesday. I posted pictures. He went to surgery at about 8am and they put a catheter into the jugular vein in his neck. They started the stem cell collection about 12pm. They had him hooked up to a machine that pulls blood out and seperates the stem cells then buts the rest of the blood back. Afterwards he needed a platelet transfusion otherwise he could have bled out the site where they took the line out. Devin slept through most of this because he was heavily medicated, but he didn't go down without a fight. You know Devin lol.
Well on Monday they did another bone marrow aspiration to check if the cancer has decreased from his bone marrow and there is no change. So the Dr. decided we are going to do one more round of chemo and if it isn't gone from his bone marrow we are going to try something different. More then likely we will go to sloan kettering in NY for there protocal with monoclonal antibodies. But they feel with the cancer in his bone and bone marrow not improving we need a new approach.
So this has been a long discouraging week. We were doing really good with recovering and then boom, we at a stand still. We won't know anything for another 3 weeks, but just pray for MAJOR improvement!
I'll keep everyone posted!
So Devin had his stem cell harvest on Tuesday. I posted pictures. He went to surgery at about 8am and they put a catheter into the jugular vein in his neck. They started the stem cell collection about 12pm. They had him hooked up to a machine that pulls blood out and seperates the stem cells then buts the rest of the blood back. Afterwards he needed a platelet transfusion otherwise he could have bled out the site where they took the line out. Devin slept through most of this because he was heavily medicated, but he didn't go down without a fight. You know Devin lol.
Well on Monday they did another bone marrow aspiration to check if the cancer has decreased from his bone marrow and there is no change. So the Dr. decided we are going to do one more round of chemo and if it isn't gone from his bone marrow we are going to try something different. More then likely we will go to sloan kettering in NY for there protocal with monoclonal antibodies. But they feel with the cancer in his bone and bone marrow not improving we need a new approach.
So this has been a long discouraging week. We were doing really good with recovering and then boom, we at a stand still. We won't know anything for another 3 weeks, but just pray for MAJOR improvement!
I'll keep everyone posted!
June 27, 2008
So we are home from our 3rd round of chemo and Devin isn't feeling as good as he usually is. I mean he's still feeling good but he's vomiting and just a little more laid back. But don't worry he's still Devin!
Ok so we got some not so good but not so bad news today. The results from his MIBG scan came back and the cancer in his bones hasn't improved any, its the same as it was when we started chemo. . But as least its not worse right? We are going to continue treatment and pray that it improves with a few more rounds.
The past couple of days have been hard for me, I think all the stress of this is building back up with Devin's surgery right around the corner. But I am sure this "crying stage" will pass again. I'm just trying to think positive and know that my baby is going to be alright.
Ok, but thats all for now, I will write more later!
Keep the prayers coming! Thank you everyone!
Devin and Missy
Ok so we got some not so good but not so bad news today. The results from his MIBG scan came back and the cancer in his bones hasn't improved any, its the same as it was when we started chemo. . But as least its not worse right? We are going to continue treatment and pray that it improves with a few more rounds.
The past couple of days have been hard for me, I think all the stress of this is building back up with Devin's surgery right around the corner. But I am sure this "crying stage" will pass again. I'm just trying to think positive and know that my baby is going to be alright.
Ok, but thats all for now, I will write more later!
Keep the prayers coming! Thank you everyone!
Devin and Missy
June 25, 2008
Shrinking Tumor!
Ok so Devin went to CT scan yesterday, to check the size of the tumor. We got the results today and the tumor has shrunk a great deal. It was large enough that it was causeing the kidney to be pushed to the side, but its back in its place!!! I am so happy that we are finally getting some good news. First his bone marrow is improving now this. The doctors say that sense the tumor has shrunk it will give us a better chance of the surgery ( after 2 more round of chemo) being successful. So thank you to everyone who is praying for my baby boy, the prayers are working, keep them up!!!
Round 3 of chemo is so far so good, but its not usually until the 3 or 4th day after chemo do you see any effect on Devin. He IS eating which is a big suprise with him..lol.. so the doctors are suprised he is. Devin does the opposite of everyone else lol. Oh speaking off let me tell you about yesterday. They gave him a dose of ativan ( which is like an anti anxity medicine) to calm him for his ct scan.. nothing happened, so they gave him Benadryl figuring the 2 would calm him down...NOPE! Another dose of ativan......umm he just got crazier..lol... So they decided to give him a dose of Vercet ( I may have spelled that wrong its a sedative) again he became a little loopy, but still fought going in the machine. So Devin got
Ativan X 2 doses,
Benadryl 1 dose
Vercet X 2 doses
and did not fall to sleep for another 4 hours! This just proves how much of a fighter my son is. He doesn't go down with out one heck of a fight and I would not want him any other way!
Don't forget magic show Sat. email me for details! I'll keep everyone updated on any changes! Thanks! Keep the prayers coming they are working!!!
Ok so Devin went to CT scan yesterday, to check the size of the tumor. We got the results today and the tumor has shrunk a great deal. It was large enough that it was causeing the kidney to be pushed to the side, but its back in its place!!! I am so happy that we are finally getting some good news. First his bone marrow is improving now this. The doctors say that sense the tumor has shrunk it will give us a better chance of the surgery ( after 2 more round of chemo) being successful. So thank you to everyone who is praying for my baby boy, the prayers are working, keep them up!!!
Round 3 of chemo is so far so good, but its not usually until the 3 or 4th day after chemo do you see any effect on Devin. He IS eating which is a big suprise with him..lol.. so the doctors are suprised he is. Devin does the opposite of everyone else lol. Oh speaking off let me tell you about yesterday. They gave him a dose of ativan ( which is like an anti anxity medicine) to calm him for his ct scan.. nothing happened, so they gave him Benadryl figuring the 2 would calm him down...NOPE! Another dose of ativan......umm he just got crazier..lol... So they decided to give him a dose of Vercet ( I may have spelled that wrong its a sedative) again he became a little loopy, but still fought going in the machine. So Devin got
Ativan X 2 doses,
Benadryl 1 dose
Vercet X 2 doses
and did not fall to sleep for another 4 hours! This just proves how much of a fighter my son is. He doesn't go down with out one heck of a fight and I would not want him any other way!
Don't forget magic show Sat. email me for details! I'll keep everyone updated on any changes! Thanks! Keep the prayers coming they are working!!!
June 24, 2008
Hey everyone. I woudl like to say thank you to everyone who has been writing Devin and leaveing all of the beautiful comments. I promise I am reading them all I just never seem to find the time to get back to anyone. But It makes us feel good to know you all are thinking and praying for Devin.
Devin is in the hospital until Friday ( as long as theres no complications) for his 3rd round of chemotherapy. This round is different medications than the last 2 so the side effects are going to be different. Last 2 rounds Devin didn't experiance any nausea or fatigue ar pretty much anything. But this round the doctors have warned me that very few children don't get sick with these medications. Also a very common side effect of the new medication is hearing loss, so they are monitoring his hearing very closely. He he starts to experience hearing loss they will need to adjust the dosage right away or Devin could easily become deaf.
I am praying that Devin stays himself through this round, the only thing keeping me sane is the fact that Devin doesn't "seem" sick. I mean I know inside he's a mess, but outside he is the same lil boy ( minus a little hair..lol..)
Well thank everyone for your prayers and please keep them coming
Devin is in the hospital until Friday ( as long as theres no complications) for his 3rd round of chemotherapy. This round is different medications than the last 2 so the side effects are going to be different. Last 2 rounds Devin didn't experiance any nausea or fatigue ar pretty much anything. But this round the doctors have warned me that very few children don't get sick with these medications. Also a very common side effect of the new medication is hearing loss, so they are monitoring his hearing very closely. He he starts to experience hearing loss they will need to adjust the dosage right away or Devin could easily become deaf.
I am praying that Devin stays himself through this round, the only thing keeping me sane is the fact that Devin doesn't "seem" sick. I mean I know inside he's a mess, but outside he is the same lil boy ( minus a little hair..lol..)
Well thank everyone for your prayers and please keep them coming
June 16, 2008
Ok so Devin is home from the hospital, they did a culture of his stool and blood because he had a fever. The blood came back fine, but his stool came back that he has c-diff. Which is a bacteria in his small intestine that usually the good bacteria fights off but because he's been on so many antiobiotics lately, its killed all the good bacteria. So they put him on yet another antiobiotic..lol.
Ok so Devin was scheduled to have a stem cell harvest tomorrow. Thats where they put a catheter in the vein in his neck and take the stem cells and freeze them to be used later for a bone marrow transplant.
Well they did a bone marrow aspiration on friday to check to see if the cancer in his bone marrow has improved enough to do this. We did get the results till this morning, but they can't to the stem cell harvest because there is still to much cancer in the bone marrow. BUT there has been a significant decrease in the amount. Which is a really good thing. When they first looked at the bone marrow the doctor said she didn't see any healthy cells that it was all cancer cells. Now she said there is mostly healthy cells with a few cluster of neuroblastoma. So even though we can't do the procedure, he is still getting better. So I am a little bit relieved.
He is scheduled for his next round of chemo Monday the 23rd. ....14 days after that they will check the bone marrow again and see if they can do the stem cell harvest then.
So keep your fingers crossed and Devin in your prayers!
Ok so Devin was scheduled to have a stem cell harvest tomorrow. Thats where they put a catheter in the vein in his neck and take the stem cells and freeze them to be used later for a bone marrow transplant.
Well they did a bone marrow aspiration on friday to check to see if the cancer in his bone marrow has improved enough to do this. We did get the results till this morning, but they can't to the stem cell harvest because there is still to much cancer in the bone marrow. BUT there has been a significant decrease in the amount. Which is a really good thing. When they first looked at the bone marrow the doctor said she didn't see any healthy cells that it was all cancer cells. Now she said there is mostly healthy cells with a few cluster of neuroblastoma. So even though we can't do the procedure, he is still getting better. So I am a little bit relieved.
He is scheduled for his next round of chemo Monday the 23rd. ....14 days after that they will check the bone marrow again and see if they can do the stem cell harvest then.
So keep your fingers crossed and Devin in your prayers!
June 05, 2008
Ok so its been a while sense I updated. Sorry guys seem like I never get a break anymore.
Ok so Devin is back in the hospital for his 2nd round of chemo and he's doing awesome. That boy amazes me everyday. He never lets this stuff get him down. He adjust to whatever situation he is in and seems to make the best of it. The cancer has not changed him one bit, and I am loving that.
Ok so I go sent hom because I am sick, go figure. So my mom is there with him until he comes home or I get better. So I am just going to sit back, relax and hopefully feel better soon. But I miss my booger already.
The bone marrow Dr. came and talked to us yesterday about his future surgery. Well first let me tell you the plan of action
Friday June 13th ( yea fri the 13th) Bone Marrow Aspiration to check for improvement.
Monday June 16th We meet with the doctors to go over the improvement or if he's not improving. (but he will be so we don't even need to worry about that =] )
WHEN THEY SEE THERE IS improvement in the cancer in the bone marrow we go to surgery on Tuesday to have a line places in the vein in his neck and he has a stem cell harvest on the 17th. Then they freeze the stem cells for later use of a bone marrow transplant.
Then theres 3 more rounds of chemo ( approx. 1-2 months worth)
Then he flies to New York to Sloan Kettering Memorial Hospital to have his tumor removed. The doctors here decided there is a surgeon there that is the best at removing this type of tumor. So I am happy we're going to the best.
Now just to give you all there coarse of action if it isn't improving (but again we don't have to worry about this)
If it shows some improvement but not exactly how much they want, they will go on with another round of chemo then check the bone marrow again. If there isn't much improvement at all, the doctors will then more then likely be sending Devin for a new treatment in New York at the Sloan Kettering Memorial ( some one whose doing the surgery). There they use a different type of treatment, but we'll get more into that if that time comes.
So right now I need everyone to pray that there is MAJOR
Ok so Devin is back in the hospital for his 2nd round of chemo and he's doing awesome. That boy amazes me everyday. He never lets this stuff get him down. He adjust to whatever situation he is in and seems to make the best of it. The cancer has not changed him one bit, and I am loving that.
Ok so I go sent hom because I am sick, go figure. So my mom is there with him until he comes home or I get better. So I am just going to sit back, relax and hopefully feel better soon. But I miss my booger already.
The bone marrow Dr. came and talked to us yesterday about his future surgery. Well first let me tell you the plan of action
Friday June 13th ( yea fri the 13th) Bone Marrow Aspiration to check for improvement.
Monday June 16th We meet with the doctors to go over the improvement or if he's not improving. (but he will be so we don't even need to worry about that =] )
WHEN THEY SEE THERE IS improvement in the cancer in the bone marrow we go to surgery on Tuesday to have a line places in the vein in his neck and he has a stem cell harvest on the 17th. Then they freeze the stem cells for later use of a bone marrow transplant.
Then theres 3 more rounds of chemo ( approx. 1-2 months worth)
Then he flies to New York to Sloan Kettering Memorial Hospital to have his tumor removed. The doctors here decided there is a surgeon there that is the best at removing this type of tumor. So I am happy we're going to the best.
Now just to give you all there coarse of action if it isn't improving (but again we don't have to worry about this)
If it shows some improvement but not exactly how much they want, they will go on with another round of chemo then check the bone marrow again. If there isn't much improvement at all, the doctors will then more then likely be sending Devin for a new treatment in New York at the Sloan Kettering Memorial ( some one whose doing the surgery). There they use a different type of treatment, but we'll get more into that if that time comes.
So right now I need everyone to pray that there is MAJOR
May 20, 2008
I'M HOME!!! WOO HOOO!!
Ok but first I want to thank everyone that has helped my mommy and I in anyway. Big or small whether it be prayers to helping with the yard sales, it is all GREATLY appreciated! My mommy says she is so happy to see how many good people there still are int he world. She also tells me a lot of people asks about me and I am loved by many! So from my mommy and I THANK YOU!
So back to the medical stuff. When youe getting chemotherapy it kills not only the cancer cells but the good cells too, basically it can't tell the differance so it kills them all. So the doctors have to watch carefully that the cell levels don't go too low. Because if they do I can get really really sick because my body doesn't have anything to fight off an infection. What they mainly look at is what is called the ANC or Absolute Neutrophil Count. In a normal person is like 5 -10 thousand, in a chemo patient they like it over 500. Well friday mine was "0" I had not one neutrophil in my blood which basically means I have NO immune system at all so I can't be around anyone thats sick. Yesterday it went up to 34 which is still really low. Well today they took blood and it was at 2,796!!!! That means I have a lot of healthy cells back and I can go to whatever I want and not have to worry about being sick!!!!!
With this being said as long as my Dr. says its ok at my appointment on Friday I will be at the car wash, so make sure you are all there so I can spray you with the hose =)
So I have one more round of chemo which will be in probably 1 week or 2 and then they will do some tests to see if they have killed all the cancer in my bone marrow. If they did it will be a really good thing! This means my body will respond better to the chemo therapy because it will be making healthy white blood cells. So lets pray its gone from my bone marrow by then!!!!!!!! The next step will be to shrink the tumor a little more to go to surgery and have it removed. But that won't be for a few more months.
Ok but I will keep everyone updated on whats new!
Thanks again
devin and mommy
Ok but first I want to thank everyone that has helped my mommy and I in anyway. Big or small whether it be prayers to helping with the yard sales, it is all GREATLY appreciated! My mommy says she is so happy to see how many good people there still are int he world. She also tells me a lot of people asks about me and I am loved by many! So from my mommy and I THANK YOU!
So back to the medical stuff. When youe getting chemotherapy it kills not only the cancer cells but the good cells too, basically it can't tell the differance so it kills them all. So the doctors have to watch carefully that the cell levels don't go too low. Because if they do I can get really really sick because my body doesn't have anything to fight off an infection. What they mainly look at is what is called the ANC or Absolute Neutrophil Count. In a normal person is like 5 -10 thousand, in a chemo patient they like it over 500. Well friday mine was "0" I had not one neutrophil in my blood which basically means I have NO immune system at all so I can't be around anyone thats sick. Yesterday it went up to 34 which is still really low. Well today they took blood and it was at 2,796!!!! That means I have a lot of healthy cells back and I can go to whatever I want and not have to worry about being sick!!!!!
With this being said as long as my Dr. says its ok at my appointment on Friday I will be at the car wash, so make sure you are all there so I can spray you with the hose =)
So I have one more round of chemo which will be in probably 1 week or 2 and then they will do some tests to see if they have killed all the cancer in my bone marrow. If they did it will be a really good thing! This means my body will respond better to the chemo therapy because it will be making healthy white blood cells. So lets pray its gone from my bone marrow by then!!!!!!!! The next step will be to shrink the tumor a little more to go to surgery and have it removed. But that won't be for a few more months.
Ok but I will keep everyone updated on whats new!
Thanks again
devin and mommy
May 18, 2008
Hey everyone!
As you all probably know I ended up back in the hospital on friday because I spiked a fever and they had to make sure I didn't have an infection. HOPEFULLY I get to go home tomorrow. We'll see!
I wish I could have been at the yard sale this weekend, but my mommy and I wanted to thank everyone who showed up, and helped. It really means a lot to both of us. a special thank you to MRS. HEATHER who has worked her but off this weekend. THANK YOU! YOUR THE BEST!
Over all I am feeling pretty good. I had one down day which was friday that I didn't feel like doing much, but I am back to my usually little wirey self! My blood cell count dropped dramatically which the doctors say is normal. My Neutrophil count ( which is the white blood cells that prevent you from getting sick or an infection) dropped down to ZERO which means I had absolutely NO immune system. The count should be like 3-4,000 but on chemo they like it to stay at the least above 500. But its gone up over the last couple days which is really good.
Ok but I will let everyone know if I go home tomorrow or if I am still here!
Thanks again!
As you all probably know I ended up back in the hospital on friday because I spiked a fever and they had to make sure I didn't have an infection. HOPEFULLY I get to go home tomorrow. We'll see!
I wish I could have been at the yard sale this weekend, but my mommy and I wanted to thank everyone who showed up, and helped. It really means a lot to both of us. a special thank you to MRS. HEATHER who has worked her but off this weekend. THANK YOU! YOUR THE BEST!
Over all I am feeling pretty good. I had one down day which was friday that I didn't feel like doing much, but I am back to my usually little wirey self! My blood cell count dropped dramatically which the doctors say is normal. My Neutrophil count ( which is the white blood cells that prevent you from getting sick or an infection) dropped down to ZERO which means I had absolutely NO immune system. The count should be like 3-4,000 but on chemo they like it to stay at the least above 500. But its gone up over the last couple days which is really good.
Ok but I will let everyone know if I go home tomorrow or if I am still here!
Thanks again!
May 15, 2008
Hi Everyone!
Let me just start off by telling you how great it is to be home! It's so nice to be able to run around and play!
So far I am still feeling pretty good. I threw up today, but I felt fine after. No fever, no fatigue, no hair loss. So far so good. Everyone just pray it stays this way for a little while longer anyway.
We have recieved SOO much stuff for the yard sale this week! PLUS someone from Fox 13 called and is going to send a camera crew to the yard sale tomorrow. So hopefully lots of people will show up! Mrs. Heather and Papa have beens SO busy this week trying to get everything ready for the yard sale, they are both great!
AND don't forget the car wash next week!
Oh and some people from the Moose Lodge in Holiday called and are doing a benefit for me on May 28th! Its going to be a Bike Show! Mommy went and met with them today and she said they are such nice people and they are trying to do a lot to help out!
I have a doctors appointment tomorrow at 1:30 they're going to check to see what my cell count is, if it is too low I will have to stay home until it comes back up, or I could get really really sick. So everyone pray my counts up, because if they are my meme and gee-pa are taking me to the aquarium to see the fishies!!!!!!!!!!
Ok so everyone who can't make it to the yard sale tomorrow tune onto fox 13 news and look for me!!!!!! Thanks everyone!!!!!!!!!!!!!!
~Devin Cruz~
Let me just start off by telling you how great it is to be home! It's so nice to be able to run around and play!
So far I am still feeling pretty good. I threw up today, but I felt fine after. No fever, no fatigue, no hair loss. So far so good. Everyone just pray it stays this way for a little while longer anyway.
We have recieved SOO much stuff for the yard sale this week! PLUS someone from Fox 13 called and is going to send a camera crew to the yard sale tomorrow. So hopefully lots of people will show up! Mrs. Heather and Papa have beens SO busy this week trying to get everything ready for the yard sale, they are both great!
AND don't forget the car wash next week!
Oh and some people from the Moose Lodge in Holiday called and are doing a benefit for me on May 28th! Its going to be a Bike Show! Mommy went and met with them today and she said they are such nice people and they are trying to do a lot to help out!
I have a doctors appointment tomorrow at 1:30 they're going to check to see what my cell count is, if it is too low I will have to stay home until it comes back up, or I could get really really sick. So everyone pray my counts up, because if they are my meme and gee-pa are taking me to the aquarium to see the fishies!!!!!!!!!!
Ok so everyone who can't make it to the yard sale tomorrow tune onto fox 13 news and look for me!!!!!! Thanks everyone!!!!!!!!!!!!!!
~Devin Cruz~
May 13, 2008
Today was a REALLY good day!
Well to start off with my newspaper atricle was published in this mornings paper! We've had so many responses so far today! So many people have called for the address to send donations and also with stuff to donate to this weekends yard sale!
Well the doctors came in and said I am doing really good and SAID I COULD GO HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So i have to go back for a follow up and some blood work on friday and then a couple times next week too, but it doesn't matter I GOT TO GO HOME! I came home and took a bath for the first time in almost 3 weeks! I got to see my favorite cousins Envy and Kyra and my papa! If everything goes well with my blood work I will be back in for chemo again in 2 weeks.
But thats not all the good news! Mommy got a call from a lady who works and a condominium complex and the lady said the owner wants to offer us a 2 bedroom 2 bathroom condominium free of charge for one year! My mommy was so happy she cried ( i don't get adults they cry when they're happy they cry when they're sad) So mommy is going to meet with the lady tomorrow and look at the place. She is sooooo excited about how nice people have been and how many people are trying to help us. She says its because I'm so cute!
So thank you to everyone that is praying for me and helping with the fundraisers and donations! My mom says this is only the begining to a long journey, and its nice to know she has so many people that care!
I have new pictures but mom's camera needs batteries so they'll be on tomorrow!
Night everyone I am going to sleep in MY BED tonight Oh YeAh!
Well to start off with my newspaper atricle was published in this mornings paper! We've had so many responses so far today! So many people have called for the address to send donations and also with stuff to donate to this weekends yard sale!
Well the doctors came in and said I am doing really good and SAID I COULD GO HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So i have to go back for a follow up and some blood work on friday and then a couple times next week too, but it doesn't matter I GOT TO GO HOME! I came home and took a bath for the first time in almost 3 weeks! I got to see my favorite cousins Envy and Kyra and my papa! If everything goes well with my blood work I will be back in for chemo again in 2 weeks.
But thats not all the good news! Mommy got a call from a lady who works and a condominium complex and the lady said the owner wants to offer us a 2 bedroom 2 bathroom condominium free of charge for one year! My mommy was so happy she cried ( i don't get adults they cry when they're happy they cry when they're sad) So mommy is going to meet with the lady tomorrow and look at the place. She is sooooo excited about how nice people have been and how many people are trying to help us. She says its because I'm so cute!
So thank you to everyone that is praying for me and helping with the fundraisers and donations! My mom says this is only the begining to a long journey, and its nice to know she has so many people that care!
I have new pictures but mom's camera needs batteries so they'll be on tomorrow!
Night everyone I am going to sleep in MY BED tonight Oh YeAh!
May 12, 2008
Lets see a few things have happened sense my last blog. I started my chemotheropy on Friday, I get the threatment for one hour a day for five days. So tomorrow will be my last day for now. Then hopefully I will get to go home soon. After that I will get chemo every other week for 5 days at a time. So basically on 5 days off 7 days, and I will have to stay in the hospital everytime I need chemotherapy. Which really sucks!
I'm on day 4 of my chemo and so far so good! I still have all my hair..lol.. My mommy says she thinks there giving me liquid energy instead of chemo..lol...My blood cell count did drop yesterday to 8.1 and it is supposed to be 12, so the doctors had to give me a blood transfusion lastnight, so I'm feeling much better.
Mommy is looking pretty tired and I think she is just as ready to go home as me. We have been in here for 2 weeks and one day. That doesn't seem very long but boy it is when your stuck in this room.
Oh and a lady from the St. Pete Times called and talked to my mommy and then came and took pictures. So I am going to be in the Pasco Edition of the St. Pete Times tomorrow morning so everyone get the paper!
Thank you to everyone who has written and put me in their prayers. My mommy said she will write back to everyone soon!
I'm on day 4 of my chemo and so far so good! I still have all my hair..lol.. My mommy says she thinks there giving me liquid energy instead of chemo..lol...My blood cell count did drop yesterday to 8.1 and it is supposed to be 12, so the doctors had to give me a blood transfusion lastnight, so I'm feeling much better.
Mommy is looking pretty tired and I think she is just as ready to go home as me. We have been in here for 2 weeks and one day. That doesn't seem very long but boy it is when your stuck in this room.
Oh and a lady from the St. Pete Times called and talked to my mommy and then came and took pictures. So I am going to be in the Pasco Edition of the St. Pete Times tomorrow morning so everyone get the paper!
Thank you to everyone who has written and put me in their prayers. My mommy said she will write back to everyone soon!
May 06, 2008
Surgery
So I went to my first surgery today. They put a port into a vein in my chest so that they can give me medicine through it and take blood if they need to. Which is a good thing, because they won't have to keep giving me IV's, I've already had 5! They also took more bone marrow when I was in surgery so that they can do more tests. So with any luck we will have everything in line to find out if I am going to St. Judes tomorrow morning. So just pray I do!
On a happier note I had a really good visitor today. I had Andrew Economos who plays for the Tampa Bay Buccaneers come see me at the hospital! He brought me some really cool stuff too! Thank You Andrew!
So I went to my first surgery today. They put a port into a vein in my chest so that they can give me medicine through it and take blood if they need to. Which is a good thing, because they won't have to keep giving me IV's, I've already had 5! They also took more bone marrow when I was in surgery so that they can do more tests. So with any luck we will have everything in line to find out if I am going to St. Judes tomorrow morning. So just pray I do!
On a happier note I had a really good visitor today. I had Andrew Economos who plays for the Tampa Bay Buccaneers come see me at the hospital! He brought me some really cool stuff too! Thank You Andrew!
May 03, 2008
Yesterday the doctors came and talked to mommy and told her that they found the tumor and it is on my adrenal glands and spread to my spine, but its only touching my spine and not in it so this is good. They also found cancer in my hip and my bone marrow, which puts me at stage 4 Neuroblastoma. I go to surgery Tuesday to have a prot put into my vein so they don't have to keep giving me new IV's because they really hurt. The doctors are moving really fast to get me better so i will start chemotherapy on Wed. so they can try to shrink the tumors so that they can take them out. Soon after they are going to do something called radiation therapy to get the cancer out of my bone marrow. Also mommy had been working with the doctors on getting me to St Judes childrens hospital in Tennessee because that is supposed to be the very best hospital for kids with my condition. We will know about that on Tuesday also, so hopefully I get to go.
Now the good part of today. The doctors let me go home until tomorrow so I am at home with my Memma and Papa and my cousins and puppy. So i am very happy about that! I don't have to go back to the hospital until tomorrow!
Ok but mommy will keep everyone posted on how I am! PRAY FOR ME!
Now the good part of today. The doctors let me go home until tomorrow so I am at home with my Memma and Papa and my cousins and puppy. So i am very happy about that! I don't have to go back to the hospital until tomorrow!
Ok but mommy will keep everyone posted on how I am! PRAY FOR ME!
May 01, 2008
Ok so I'll sum up all the events leading to me getting here,
2 weeks ago I starting draging my left foot, so my mommy took me to see my doctor, My doctor sent me to the hospital to have xrays because she thought there was an infection in my hip. The hospital said I was ok and sent me home. The next day they called my mommy and told her she needed to take me to an orthopedic doctor. This doctor did more xrays then sent us back to the hospital to have an MRI done. The MRI results came back and showed that I could possibly have leukemia. So to determine this the doctors did a bone marrow aspiration to check. Well the tests came back that is don't have leukemia but I have another type of cancer called neuroblastoma.They are still doing tests and other stuff to find out more, and I have surgery on Tuesday to put a central line in to make it easier to give me medicine. My mommy will write more as we know more, please keep us in your prayers!
2 weeks ago I starting draging my left foot, so my mommy took me to see my doctor, My doctor sent me to the hospital to have xrays because she thought there was an infection in my hip. The hospital said I was ok and sent me home. The next day they called my mommy and told her she needed to take me to an orthopedic doctor. This doctor did more xrays then sent us back to the hospital to have an MRI done. The MRI results came back and showed that I could possibly have leukemia. So to determine this the doctors did a bone marrow aspiration to check. Well the tests came back that is don't have leukemia but I have another type of cancer called neuroblastoma.They are still doing tests and other stuff to find out more, and I have surgery on Tuesday to put a central line in to make it easier to give me medicine. My mommy will write more as we know more, please keep us in your prayers!
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