T-cell ALL patient new to the board

Plecofan

Hi everyone,

I joined CSN about a month ago, and am now just able to post here because I've been in the hospital. I've written two blogs about me and my experience. I have T-cell ALL/Lymphoma. It sounds bad, and it is bad. However, I'm doing great with my treatments. I've read some posts already and I'm thinking about you all and praying for you. I hope my story inspires you and gives you hope. But remember, nothing can give you more hope and comfort than God! Looking forward to meeting you all.

Jason
(Plecofan)

CrystalW

Leukemia Sucks
Hello Jason,

I joined this board as survivor myself. Breast Cancer in 2002. I am now here as a caregiver to my 17 year old son who was diagnoised with Acute Childhood T-Cell Lymphoblastic Leukemia on June 6 2009, first day of his summer vacation of school before he graduates. I was able to read your profile and found that most all of the drugs you have received he has as well. We have spent many weeks in the hospital so far and we are only half thru with consolidation. I am finding my sons cancer journey so different from my own, but aren't they all. His is considered childhood only because of his age (he will be 18 next month) although he has a man sized body. It has been so hard to not been in control of any of this. At least with my cancer my husband and I had an active roll in all that was done. This was so sudden and completely unexpected that it took us several weeks to get out of the fog that seems to consume a family when someone is newly diagnoised.

Well I just wanted to say thank you for your post. I have just now started exploring other than just on the breast cancer site. We are a family who likes to know our enemy. Take care of yourself and never give up the fight...If you have any advice for me please feel free to share. It seems as though you have a head start on us...

Crystal

Plecofan

CrystalW said:

Leukemia Sucks
Hello Jason,

I joined this board as survivor myself. Breast Cancer in 2002. I am now here as a caregiver to my 17 year old son who was diagnoised with Acute Childhood T-Cell Lymphoblastic Leukemia on June 6 2009, first day of his summer vacation of school before he graduates. I was able to read your profile and found that most all of the drugs you have received he has as well. We have spent many weeks in the hospital so far and we are only half thru with consolidation. I am finding my sons cancer journey so different from my own, but aren't they all. His is considered childhood only because of his age (he will be 18 next month) although he has a man sized body. It has been so hard to not been in control of any of this. At least with my cancer my husband and I had an active roll in all that was done. This was so sudden and completely unexpected that it took us several weeks to get out of the fog that seems to consume a family when someone is newly diagnoised.

Well I just wanted to say thank you for your post. I have just now started exploring other than just on the breast cancer site. We are a family who likes to know our enemy. Take care of yourself and never give up the fight...If you have any advice for me please feel free to share. It seems as though you have a head start on us...

Crystal

Hi Crystal
I'm glad you survived your breast cancer, and I hope your son's ALL gets cured. I believe he will have a good chance since he's young. My family and I can relate to what you said at the end of the first paragraph. When I started getting sick, they begged me to go to the doctor. They thought I had some nasty virus, but when I told them it was leukemia they were devastated and they had lots of questions and concerns. I think now after five months since diagnosis, they are getting used to everything.

The best advice I can give to you, your son, and your family is to pray to God for strength and a cure. Many people from church including my family have constantly prayed for me, and I've felt it especially when I survived some of the bumps in my treatment and everything else I've been through.

I go in for a bone marrow biopsy and cat scans tomorrow. I'll get the results in two weeks. If everything turns out good, I'll let you know so that it will be encouraging to your son.

Thanks for the reply and God bless you and your family,

Jason

CrystalW

Plecofan said:

Hi Crystal
I'm glad you survived your breast cancer, and I hope your son's ALL gets cured. I believe he will have a good chance since he's young. My family and I can relate to what you said at the end of the first paragraph. When I started getting sick, they begged me to go to the doctor. They thought I had some nasty virus, but when I told them it was leukemia they were devastated and they had lots of questions and concerns. I think now after five months since diagnosis, they are getting used to everything.

The best advice I can give to you, your son, and your family is to pray to God for strength and a cure. Many people from church including my family have constantly prayed for me, and I've felt it especially when I survived some of the bumps in my treatment and everything else I've been through.

I go in for a bone marrow biopsy and cat scans tomorrow. I'll get the results in two weeks. If everything turns out good, I'll let you know so that it will be encouraging to your son.

Thanks for the reply and God bless you and your family,

Jason

Thank You
We to our strong beleivers that God can heal with prayer. We have so many churches and people (including us) praying for Sam (my son) that I know he will be healed. The road getting there is a long one for any one but for a 17 year old boy who was looking forward to his Senior year in high school, it seems like there is no light at the end of the tunnel. I must say that he has never been the kind of kid to complain about anything, thus the reason it took so long for us to discover he was even sick. In fact here is the kind of kid he is, he was freshly diagonsed on June 6 and after all the tests and chemo done that day, he was laying there in his bed and looked up at me and said "Mom, I know why I got this, (I said Why)so some other little kid wouldn't have to suffer with it". He is a very unique young man and his father and I have always believed that he has a greater purpose in life that God has not shown him yet.

The hard part is for us, his parents and sister. We all just live day by day again and thank God each day we get out of bed. Our community has completed engulfed him. People who know him and know his family are so supportive and doing fundraisers for him all over the place. It is truely amazing how his illness has brought our small community together.

You sound to me to be a strong man yourself. I know you will get thru this bump in the road we call life. I know my son will as well.

Have you ever heard of the website called caring bridge? If so great, if not you should visit it. It is a website for people who are going thru life threating illness to go and post to their on websites their stories, and updates in their treatments and friends can go to it and post words of encouragement. If you would like, go to my son's website. Like I said go to caringbridge.org and it will take you to a "front page" of the website. It will prompt you to enter a website...In that box put Leukemiasucks, It will take you right to Sam's website. There you can read his story and read posts in his journal and guestbook and look at pictures. This website is a fabulous tool for keeping people informed about your progress. You can create your own webpage there for free. I set his up so no one needs a passwrod to view it or leave messages. Check it out.

Well, Take care Jason and I will be praying for you as well. Keep us posted on your latest bone marrow biopsy. I will be praying that there are no leukemic cells in it!

Crystal

sunrise4vic

Survivor of ALL for 19 yrs & still going strong so be encouraged
Hi Jason, I was diagnoised with ALL (Acute Lymphoblastic Leukemia)at age 19 after 3 semester of college. Back in May of 1985 only 2% of the population were going through the option of a BMT (Bone Marrow Transplant) in which my 1 year younger brother was my donor. It took place at Sloan Kettering Memorial Hospital in Nov. 20, 1986. I was in and out the hospital for 11 months with efforts for my new immune system to build itself back up for 11 months. I had a more agressive treatment and was in remission the first 3 months and stayed in remission regardless of the treatments afterward but Faith carried me through the whole time. When you are taking Chemo or any type of radiation, just pray and think about God zapping out the bad cell and renewing your new cells. Do this also when you feel a little sick knowing that you are actually getting better. Back then, the percent rate for survival was much lower and they did not have networks like the internet or post treatment programs for cancersurviors to connect with other survivors or current patient who have been recentaly diagnoised. Because of the advancement of technology and research, the survior rate of ALL Patients is at a all time high of 89% and I am living proof of 19 1/2 years. I am 43 years old and have lived on my own. I work and have been able to finish college at 28 and live a normal life with the exception that I cannot have children (I should have perserved my eggs when I had a chance) but it was giving up a future life to save my own. Today, you have more options and more hope. I have very bad allergies due to the body radiation but today, people going through treatment today do not have to have the more agressive treatment. Keep your "Faith" and know you can do this as I have - 1 day at a time and sometimes, 1 moment at a time. God will be your strength and the one on one relationship you have with Him going through this will carry you through this regardless of what the optionis for the standard medicine is for that day. Take your medicine but know there is a force greater and use it as a tool. I can also be your bridge should you have any questions. My email is sunrise4vic@yahoo.com or victoriabarrow@msn in which you can get be quicker. My prayers are with you as you ride through this journey my friend. God bless.

Plecofan

CrystalW said:

Thank You
We to our strong beleivers that God can heal with prayer. We have so many churches and people (including us) praying for Sam (my son) that I know he will be healed. The road getting there is a long one for any one but for a 17 year old boy who was looking forward to his Senior year in high school, it seems like there is no light at the end of the tunnel. I must say that he has never been the kind of kid to complain about anything, thus the reason it took so long for us to discover he was even sick. In fact here is the kind of kid he is, he was freshly diagonsed on June 6 and after all the tests and chemo done that day, he was laying there in his bed and looked up at me and said "Mom, I know why I got this, (I said Why)so some other little kid wouldn't have to suffer with it". He is a very unique young man and his father and I have always believed that he has a greater purpose in life that God has not shown him yet.

The hard part is for us, his parents and sister. We all just live day by day again and thank God each day we get out of bed. Our community has completed engulfed him. People who know him and know his family are so supportive and doing fundraisers for him all over the place. It is truely amazing how his illness has brought our small community together.

You sound to me to be a strong man yourself. I know you will get thru this bump in the road we call life. I know my son will as well.

Have you ever heard of the website called caring bridge? If so great, if not you should visit it. It is a website for people who are going thru life threating illness to go and post to their on websites their stories, and updates in their treatments and friends can go to it and post words of encouragement. If you would like, go to my son's website. Like I said go to caringbridge.org and it will take you to a "front page" of the website. It will prompt you to enter a website...In that box put Leukemiasucks, It will take you right to Sam's website. There you can read his story and read posts in his journal and guestbook and look at pictures. This website is a fabulous tool for keeping people informed about your progress. You can create your own webpage there for free. I set his up so no one needs a passwrod to view it or leave messages. Check it out.

Well, Take care Jason and I will be praying for you as well. Keep us posted on your latest bone marrow biopsy. I will be praying that there are no leukemic cells in it!

Crystal

biopsy results and joined CareBridge
Hi Crystal,

I just finished my sixth treatment and am back home. I had to go back to the hospital to get platelet transfusions and neupogen shots because my white cells are zero, and platelets are extremely low. It's a drag driving back and forth to the hospital, but I'd rather do the shots and transfusions as an outpatient instead of being in the hospital all the time.

I got the preliminary results of my bone marrow biopsy/aspiration. The report looks good. There were no leukemic cells present and my bone marrow cells looked normal. The blast cell count is still above average, but my oncologist is not too worried. I have two more treatments left, so that should take care of any blast cells remaining. I was very happy to hear that good report.

I joined CareBridge today and created my own website named "ALL will not beat me." It's a good helpful site. Also, I signed the guestbook on Sam's page. I hope the news of my bone marrow results will be encouraging to him.

Thanks for the prayers. I'll keep praying for your family for strength and Sam's cure.

Jason

Plecofan

sunrise4vic said:

Survivor of ALL for 19 yrs & still going strong so be encouraged
Hi Jason, I was diagnoised with ALL (Acute Lymphoblastic Leukemia)at age 19 after 3 semester of college. Back in May of 1985 only 2% of the population were going through the option of a BMT (Bone Marrow Transplant) in which my 1 year younger brother was my donor. It took place at Sloan Kettering Memorial Hospital in Nov. 20, 1986. I was in and out the hospital for 11 months with efforts for my new immune system to build itself back up for 11 months. I had a more agressive treatment and was in remission the first 3 months and stayed in remission regardless of the treatments afterward but Faith carried me through the whole time. When you are taking Chemo or any type of radiation, just pray and think about God zapping out the bad cell and renewing your new cells. Do this also when you feel a little sick knowing that you are actually getting better. Back then, the percent rate for survival was much lower and they did not have networks like the internet or post treatment programs for cancersurviors to connect with other survivors or current patient who have been recentaly diagnoised. Because of the advancement of technology and research, the survior rate of ALL Patients is at a all time high of 89% and I am living proof of 19 1/2 years. I am 43 years old and have lived on my own. I work and have been able to finish college at 28 and live a normal life with the exception that I cannot have children (I should have perserved my eggs when I had a chance) but it was giving up a future life to save my own. Today, you have more options and more hope. I have very bad allergies due to the body radiation but today, people going through treatment today do not have to have the more agressive treatment. Keep your "Faith" and know you can do this as I have - 1 day at a time and sometimes, 1 moment at a time. God will be your strength and the one on one relationship you have with Him going through this will carry you through this regardless of what the optionis for the standard medicine is for that day. Take your medicine but know there is a force greater and use it as a tool. I can also be your bridge should you have any questions. My email is sunrise4vic@yahoo.com or victoriabarrow@msn in which you can get be quicker. My prayers are with you as you ride through this journey my friend. God bless.

thanks
Thanks for your message Sunrise! Sorry I took so long to reply, but I just finished a chemo treatment. Congratulations on your long remission. God was definitely with you during your treatment back then. I agree with you about keeping faith and leaning on God for strength. I've been a Christian for 11 years now. I can't think about what I'd be going through if I wasn't a Christian.

It was suggested to me that I get a bone marrow transplant, but because of my multi-national background and because I have half siblings, that may not be likely. I probably will get both an autologous (transplant of my own cells) and cord blood transplant. The chance of cure is less than a bone marrow transplant, but if I pray hard enough and ask God to get cured, He will do it. He has already done so much for me. He has gotten me through a bad staph infection, many doses of strong chemo, and my recent bone marrow biopsy shows clean bone marrow.

Thanks for your prayers and God Bless You.

Jason

CrystalW

Plecofan said:

biopsy results and joined CareBridge
Hi Crystal,

I just finished my sixth treatment and am back home. I had to go back to the hospital to get platelet transfusions and neupogen shots because my white cells are zero, and platelets are extremely low. It's a drag driving back and forth to the hospital, but I'd rather do the shots and transfusions as an outpatient instead of being in the hospital all the time.

I got the preliminary results of my bone marrow biopsy/aspiration. The report looks good. There were no leukemic cells present and my bone marrow cells looked normal. The blast cell count is still above average, but my oncologist is not too worried. I have two more treatments left, so that should take care of any blast cells remaining. I was very happy to hear that good report.

I joined CareBridge today and created my own website named "ALL will not beat me." It's a good helpful site. Also, I signed the guestbook on Sam's page. I hope the news of my bone marrow results will be encouraging to him.

Thanks for the prayers. I'll keep praying for your family for strength and Sam's cure.

Jason

Congratulations
Way to go Jason. I am happy to here of your good news. Those neupogen shots work wonders. I had to have those with my cancer treatment as well. Sam has only had to have one so far.

I here you about it being a drag driving back and forth to the hospital for treatment. I hope in your case that the hopsital is not to far away. We live about 3 hours from our treatment facility. Once a week driving back and forth can really way on a person. I should be used to it as I did it myself for a year and a half for my own treatment. Oh well, one small sacrifice to help save Sam's life...I'm not complaining.

We read your post on caringbridge. I did respond to your kind words and Sam said he will probably be e-mailing you soon. We spent the day yesterday travling and at doctors appointments with some Chemo thrown in there to. His counts were good yesterday but that will soon be changing. He has about 2 more weeks of consolodation and then to Interim Maintenence (2 months long) then Delayed Intensification Maintenence (3 month long) then we get to Maintenence which is a 3 year program. Long road but doable.

Well Jason Take care and I will be visiting your web site on Caring Bridge. Keep us informed of your progress. You continue to be in my prayers...

Crystal