adult medulla blastoma

mabowes11

medulloblastoma caregiver
Hi my name is Clarece, my husband was diagnosed April 17th 2010 with stage 4 non operable medulloblastoma, 3 tumors, has just completed 7 weeks of full brain and spine and also targeted radiation, will be starting chemo in a few weeks. We are just trying to find out as much as we can on this he is treated at UCSF and we were told they had never seen anything like what he has so it has been difficult to find someone to compare with. If you have any questions for us feel free to ask. Hope things are moving along in a good positive direction for you. (This was initally in response to Riverland o1 post)
Thanks Clarece

mabowes11

andreakrivera said:

I am a survivor of
I am a survivor of medullablastoma. I was diagnosed at 22 and I am currently 24. I was diagnosed 7/4/07 and had my surgery on 7/7/07. I have had chemo and radiation. I would like to talk to someone.

Andreakrivera/your post
I would like to hear more from you, my husband was diagnosed with a rare stage 4 medulloblatoma non operable, just finished 7 weeks of radiation, will start chemo in a few weeks. Really trying to find someone that has had the same diagnosis or similar. His Dr's at UCSF said they have never seen this in adults. On this site it seems to be more common than I realized or it may be that his type is in different rareity? Not sure?? Would love to hear from you. Hope things continue to get better for you good luck.
Clarece

positivesisterone

gary142 said:

hi
i am a 27 year old male. was diagnosed with medulloblastoma when i was 20. give me a shout if you fancy a chat or e-mail me at garkennedy@gmail.com

good news?
My brother was Just diagnosed at age thirty of this type of cancer. Had the tumor removed five days ago. Waiting to hear what stage etc. its at. Can you give me any hope?

Shells065

mabowes11 said:

medulloblastoma caregiver
Hi my name is Clarece, my husband was diagnosed April 17th 2010 with stage 4 non operable medulloblastoma, 3 tumors, has just completed 7 weeks of full brain and spine and also targeted radiation, will be starting chemo in a few weeks. We are just trying to find out as much as we can on this he is treated at UCSF and we were told they had never seen anything like what he has so it has been difficult to find someone to compare with. If you have any questions for us feel free to ask. Hope things are moving along in a good positive direction for you. (This was initally in response to Riverland o1 post)
Thanks Clarece

36 year old husband with medulloblastoma- response for Clarece

Hi Clarece,

I'm so sorry to hear about your husband. I'm in a very similar situation as you are. My husband was diagnosed with medulloblastoma in June of 2010 and since that time spent over 45 days hospitalized. He did undergo surgery and they were able to remove the tumor. He is now going through intense chemotherapy and will have radiation treatment soon after he is finished with that.
I'm interested to hear about what your husbands symtoms were before being diagnosed. My husband was vomiting for 7 weeks straight, lost a lot of his coordination- had a very difficult time walking straight and slept for many hours each day. Finally, after having visited numerous emergency rooms, they did a CT scan and found a golf ball size tumor on his cerebellum.
He has had a very difficult time trying to recover form the surgery and has been weakened even more by the chemo. I sure hope things turn around for him. We have a one year old son and our world has been flipped upside down. Just starting our life and our family and this happens out of nowhere.
The doctors told us the same thing they told you...that basically, this type of tumor usually occurs in children and is very rare in adults. However, one bright spot is that this type of tumor responds very well to chemotherapy and radiation treatments and is less likely to grow back after having gone through it.
I hope things are improving for you and your husband. I will say a prayer for you tonight.

Sincerely,
Michelle

deuces

hope4787 said:

hi my mother was diagnosed
hi my mother was diagnosed with this type of tumor in nov 2005. my parents are divorced and i was her primary care giver. she is now finished with radiation and chemo treatments and all of her mris are coming back clear. let me know if i can help you in some way.

Medulla Blastoma
Hi, my name is Everett and in May 2010 my wife was diagnosed with Medulla Blastoma.We went to
UCSF to remove the tumor. She has been thru Radiation and is going thru chemo. It would be nice to actully talk to some one that has been thru what we are going thru. My wife and I have been married 27 years ans we have a 10 year old son.I need some advice and may be a little boost of confedence.

deuces

mabowes11 said:

medulloblastoma caregiver
Hi my name is Clarece, my husband was diagnosed April 17th 2010 with stage 4 non operable medulloblastoma, 3 tumors, has just completed 7 weeks of full brain and spine and also targeted radiation, will be starting chemo in a few weeks. We are just trying to find out as much as we can on this he is treated at UCSF and we were told they had never seen anything like what he has so it has been difficult to find someone to compare with. If you have any questions for us feel free to ask. Hope things are moving along in a good positive direction for you. (This was initally in response to Riverland o1 post)
Thanks Clarece

SPOUSE WITH MEDULLO BLASTOMA
Hi Clarece,
My name is Everett,My wife was at UCSF in June to have her tumor removed. She has gone thru
pretty much every thing your husband is going thru. She is still doing Chemo. This sounds as if it is a little more comon than they say. My wife is 47 years old. The Doctors at UCSF said
they had never seen it any one here age. My wife had leasons spotted on her Brain 4 years ago. Our Doctors here said it was (central nerivous system sarcoid).A multi organ disease,
they could not find it any were else in her body. I pray you husband is doing will?
If I can help you please contact me. I would like to compare with you what things your we
both are experiencing.
Thanks,
Everett

deuces

mabowes11 said:

medulloblastoma caregiver
Hi my name is Clarece, my husband was diagnosed April 17th 2010 with stage 4 non operable medulloblastoma, 3 tumors, has just completed 7 weeks of full brain and spine and also targeted radiation, will be starting chemo in a few weeks. We are just trying to find out as much as we can on this he is treated at UCSF and we were told they had never seen anything like what he has so it has been difficult to find someone to compare with. If you have any questions for us feel free to ask. Hope things are moving along in a good positive direction for you. (This was initally in response to Riverland o1 post)
Thanks Clarece

SPOUSE WITH MEDULLO BLASTOMA
Hi Clarece,
My name is Everett,My wife was at UCSF in June to have her tumor removed. She has gone thru
pretty much every thing your husband is going thru. She is still doing Chemo. This sounds as if it is a little more comon than they say. My wife is 47 years old. The Doctors at UCSF said
they had never seen it any one here age. My wife had leasons spotted on her Brain 4 years ago. Our Doctors here said it was (central nerivous system sarcoid).A multi organ disease,
they could not find it any were else in her body. I pray you husband is doing will?
If I can help you please contact me. I would like to compare with you what things your we
both are experiencing.
Thanks,
Everett

zunigan

hi
I am the wife and was caregiver for my husband who passed away August 22, 2010. If I can answer any questions please feel free to ask. It was Dx in 1999 and he lived 11 1/2 years before he finally died.

globia

zunigan said:

hi
I am the wife and was caregiver for my husband who passed away August 22, 2010. If I can answer any questions please feel free to ask. It was Dx in 1999 and he lived 11 1/2 years before he finally died.

Medullablastoma REOCURRENCE IN LOWER SPINE AFTER 7 YEARS

I am attempting to contact everyone who I know who has had or has a loved one who has had medulloblastoma. My husband had a brain tumor in his cerebellum (about the size of a golf ball) in Feb 2007 which was completely resected and subsequently had 37 sessions of radiation to his brain and spine. He was left slightly handicapped (balanced issues, left side a bit spastic, and a slight speech inpediment. His brain MRI's were repeated every 3 mo, then every 6 mo then every year always came out great. Just after the brain surgery he had a spinal tap to test the spinal fluids and he also had a PET scan which did not indicate any cancer cells in his spinal column or anywhere else. The neurosurgeon thought he was free and clear especially with the repeat brain scans. Kevin started having urinary symptoms: first frequent urination, then progressed to OAB and bladder retention. He didn’t tell me about the symptoms for quite a while. I saw that his “stream” was very weak one day and urged him to go to a urologist. The first urologist wrote his symptoms off to radiation damage. We sought help with another urologist who thought the same thing but took things a step further and did a TURP procedure to open up his bladder neck. This did not relieve his symptoms and in the mean time he developed numbness in his feet and buttocks. This is when he sought help from his neurosurgeon who ordered 6 MRI’s: 3 with contrast, 3 without. Kevin turned out to have a rather large tumor in his lower spine (L4-S2). He had surgery on New Year’s Eve: The doctor was not able to remove much of the tumor at all due to the nerve involvement as my husband made it clear that he didn’t want to risk being left a parapalegic. The surgeon didn't believe he could have gotten enought of the tumor anyway to merit the damage to the nerves. The pathology reports confirmed that it is grade IV medullaoblastoma again. The doc believes that the cancer cells dropped down into his spinal column before the tumor was even removed and remained dormant for years.

I want to get the news out. I strongly believe that anyone who has had medulloblastoma should be sure to have a full spinal MRI. If Kevin had a spinal MRI done every year they could have caught this early before the nerve involvement was too great to operate.

Could you offer any advice? The future is so uncertain. Radiation is supposed to happen within the next couple of weeks. We have yet to schedule the consult with the radiologist. We live in Camarillo California.

My husband was first diagnosed in Feb 2007, he is 49 years old.

Kind regards,

Gloria Studley
(805) 660-0439

globia

mabowes11 said:

Andreakrivera/your post
I would like to hear more from you, my husband was diagnosed with a rare stage 4 medulloblatoma non operable, just finished 7 weeks of radiation, will start chemo in a few weeks. Really trying to find someone that has had the same diagnosis or similar. His Dr's at UCSF said they have never seen this in adults. On this site it seems to be more common than I realized or it may be that his type is in different rareity? Not sure?? Would love to hear from you. Hope things continue to get better for you good luck.
Clarece

UCSF Dr. Larson Treated someone with Medulloblastoma in 2004
Hello, my husband had medulloblastoma in 2004 at that time I was searching for other adult medulloblastoma survivors and came across a man who's wife had just been treated at UCSF. They lived in Washington State and traveled to San Francisco for treatement after doing some research. They found an article that was published on Medulloblastoma in which Dr. Larson was one of the doctors that wrote the article (Medline Search). Also, my husband's radiologist in Ventura just last week said that he knows Dr. Larson well. You may want to check into this.

Here is my husband's background as of 15Jan2011:
He had surgery in Feb 2004 to remove a tumor the size of a golf ball in his cerebellum. Stage IV Medulloblastoma. The doctor (Ventura CA) was able to remove the entire tumor but he was left with some slight handicaps (balance problems and left side uncoordinated). Just before having 36 sessions of IMRT radiation to his brain and spine he had a PET scan and a spinal tap to test the fluids in his spine. They did not detect any cancer cells. They were considering whether to do radiation and chemo or just radiation and decided that the chemo was probably not necessary. He had been getting regular repeat brain MRIs since the original surgery and we thought he was cancer free. Kevin started having bladder issues about 1-1/2 years ago and his urologists (3 different ones) thought it was due to radiation damage. Recently (about 3 months ago) he started having numbness in his butt and bottom of his feet so he went to his neurosurgeon. The neorosurgeon ordered a series of MRIs to his spine and found in December that he had a large tumor inside his spine at the bottom (L4-S2). This was the cause of his urinary problems (bladder retention, incontinence and OAB). This is the first series of MRIs to the spine...the rest were all done on his brain previously. He had surgery on December 31st to attempt to remove the tumor. The doctor could not get much of the tumor at all because of the intense nerve involvement so he took some samples and closed him back up. He has Stage IV Medulloblastoma again. They suspect that cancer cells slipped down his spine before the brain tumor was removed and that they were probably dormant until a few years ago and so small in 2004 that they were undetectable. He is recovering well but is facing an uncertain regimine of Chemo and some sort of radiation. He has to get a PET scan first to see if any cancer has spread. I believe that if Kevin had been having MRIs of his spine all along they would have detected the cancer when it was easily treated. I hope that your husband is doing well. Do you have any details on what type of Chemo and what type of radiation your husband went through? How are you holding up? It is a tough road as a caregiver, I've been through it once and now facing it again. You need to find some time for yourself.

God Bless,

Gloria

steph0steph

globia said:

Medullablastoma REOCURRENCE IN LOWER SPINE AFTER 7 YEARS

I am attempting to contact everyone who I know who has had or has a loved one who has had medulloblastoma. My husband had a brain tumor in his cerebellum (about the size of a golf ball) in Feb 2007 which was completely resected and subsequently had 37 sessions of radiation to his brain and spine. He was left slightly handicapped (balanced issues, left side a bit spastic, and a slight speech inpediment. His brain MRI's were repeated every 3 mo, then every 6 mo then every year always came out great. Just after the brain surgery he had a spinal tap to test the spinal fluids and he also had a PET scan which did not indicate any cancer cells in his spinal column or anywhere else. The neurosurgeon thought he was free and clear especially with the repeat brain scans. Kevin started having urinary symptoms: first frequent urination, then progressed to OAB and bladder retention. He didn’t tell me about the symptoms for quite a while. I saw that his “stream” was very weak one day and urged him to go to a urologist. The first urologist wrote his symptoms off to radiation damage. We sought help with another urologist who thought the same thing but took things a step further and did a TURP procedure to open up his bladder neck. This did not relieve his symptoms and in the mean time he developed numbness in his feet and buttocks. This is when he sought help from his neurosurgeon who ordered 6 MRI’s: 3 with contrast, 3 without. Kevin turned out to have a rather large tumor in his lower spine (L4-S2). He had surgery on New Year’s Eve: The doctor was not able to remove much of the tumor at all due to the nerve involvement as my husband made it clear that he didn’t want to risk being left a parapalegic. The surgeon didn't believe he could have gotten enought of the tumor anyway to merit the damage to the nerves. The pathology reports confirmed that it is grade IV medullaoblastoma again. The doc believes that the cancer cells dropped down into his spinal column before the tumor was even removed and remained dormant for years.

I want to get the news out. I strongly believe that anyone who has had medulloblastoma should be sure to have a full spinal MRI. If Kevin had a spinal MRI done every year they could have caught this early before the nerve involvement was too great to operate.

Could you offer any advice? The future is so uncertain. Radiation is supposed to happen within the next couple of weeks. We have yet to schedule the consult with the radiologist. We live in Camarillo California.

My husband was first diagnosed in Feb 2007, he is 49 years old.

Kind regards,

Gloria Studley
(805) 660-0439

Husband with Medullobastoma grade 4 we live in Canada
Hi I'm looking for anyone that may have info on this or just to talk. We are both 27years old and from Alberta,Canada he has a blog about everything that he has been through @ www.ryanalewis.com but has not posted in it for awhile as he has been very sick lately and today we found out he has meningitis. He has been in palliative care now since May. We have 2 boys 1 and 3 year olds.

globia

steph0steph said:

Husband with Medullobastoma grade 4 we live in Canada
Hi I'm looking for anyone that may have info on this or just to talk. We are both 27years old and from Alberta,Canada he has a blog about everything that he has been through @ www.ryanalewis.com but has not posted in it for awhile as he has been very sick lately and today we found out he has meningitis. He has been in palliative care now since May. We have 2 boys 1 and 3 year olds.

Ryan
Steph,

I am so sorry to hear of Ryan's illness. My heart goes out to you and your precious boys. I hope that Ryan will recover soon. He is an amazing inspiration to others with his unselfish dedication to helping others get through their fight with medulloblastoma. Please lean on your friends and loved ones for emotional support and help through this most difficult time. You are all in my thoughs and prayers.

Gloria (wife of Kevin dx Feb2004)

steph0steph

globia said:

Ryan
Steph,

I am so sorry to hear of Ryan's illness. My heart goes out to you and your precious boys. I hope that Ryan will recover soon. He is an amazing inspiration to others with his unselfish dedication to helping others get through their fight with medulloblastoma. Please lean on your friends and loved ones for emotional support and help through this most difficult time. You are all in my thoughs and prayers.

Gloria (wife of Kevin dx Feb2004)

Thank u
Thank u Globia that is very kind of u. My husbands fight has been hard and we are near the end the doc told me today He was found to have a tumor in nov of 2010 as a mri showed us he was puking all the time and dizzy for a couple months be4 they did the mri. After that mri he had surgery about 5 days after my 3 year son had his 3 year old bday in the hosp 1 day be4 my husband had the surgery. The surgery went well and they were able to remove most of the tumor in the back of his head right above the spine. When he woke from surgery he had double vision and google eyes he still has double vision to this day.2 days after the surgery they told us the bad news that it was cancer the highest grade. About a month after surgery he started radiation to the whole spine and head 32 rounds of that. He had a spinal tap done be4 radiation started and there was cancer tumor cells in his spine. He also could not walk well after the surgery and would use a wheelchair to get around,he would wear a eye patch to help to double vision. After the radiation they waited two months to do a mri and during that time Ryan would puke everyday once or up to 6 times a day. He was losing so much weight he is 6'4 and got down to 145pounds. The mri was done and it came out clean everyone was so happy and I was trying to feel like everyone else happy but something was holding back the joy,I had a feeling something was not right he was still so sick puking all the time and dizzy. 3 weeks after the mri I almost had to call for help to get him to the hosp he say to me I'm on deaths door he was so sick one night. This next morning his mom picked him up and took him to the hosp it is called the tom baker cancer center where we live they took him in right away and did a mri and the tumor was back and there was another tumor wrapped around his pituitary gland. He was now going to start 6 cycles of chemo they said his tumors where inoperable so they waited about 2 weeks to put weight on him and got the chemo going he was on so many drugs steroids and about 18 other meds. He was on the most aggressive chemo drugs there are he was on 5 different chemo drugs. He was almost done his 1st cycle of chemo and then he got ammonia and end up in icu on life support this was just @ the start of this month it happen 3 days in icu and he came back to us.he was better so they finished off the last round of the chemo to complete the 1st cycle. The pic line was what gave him the ammonia so that was removed in icu. During the first cycle of chemo he had 4 blood transfusions and his white cell counts would sometimes reach 0 so he was in the hosp all the time. He had a week off and the 2nd cycle was going to start so they put in a port line no pic line this time. He also has fluid in the brain that might needed to be drained with a shunt oh ya and the cancer was still in his spine they did more spinal taps along the way. So this last mon the 2nd cycle was a go but then a couple nights be4 he was losing his mind and talking weird making no sense it became worse. So chemo was canceled and they ran test after test spinal tap,mri.pet scan.ct scan,and so on they thought it was the time for the shunt to be put in but they said they might have found meningitis so they have canceled the shunt that was today and he is on antibiotics they are still waiting to find out if this is what is the problem it takes about 3 days for the cultures to come back. I was with him today and it is very hard because he talk to himself and makes no sense his mind is lost and I miss him. He does sleep most of the time, the doc told me we all need to get together his parents,docs,and others to decide on some very hard stuff about making him as pain free and comfortable as possible he most likely is near the end. This is aLl written very scatter and poorly sorry about that my mind is full of worries. He does have a blog about his journey www.ryanalewis.com he is a very good @ writing he did stop posting anything new about 3 weeks ago as he became more and more sick. Thanks for reading and please ask me for contact info if anyone would want to chat.

4theloveofmysis

steph0steph said:

Thank u
Thank u Globia that is very kind of u. My husbands fight has been hard and we are near the end the doc told me today He was found to have a tumor in nov of 2010 as a mri showed us he was puking all the time and dizzy for a couple months be4 they did the mri. After that mri he had surgery about 5 days after my 3 year son had his 3 year old bday in the hosp 1 day be4 my husband had the surgery. The surgery went well and they were able to remove most of the tumor in the back of his head right above the spine. When he woke from surgery he had double vision and google eyes he still has double vision to this day.2 days after the surgery they told us the bad news that it was cancer the highest grade. About a month after surgery he started radiation to the whole spine and head 32 rounds of that. He had a spinal tap done be4 radiation started and there was cancer tumor cells in his spine. He also could not walk well after the surgery and would use a wheelchair to get around,he would wear a eye patch to help to double vision. After the radiation they waited two months to do a mri and during that time Ryan would puke everyday once or up to 6 times a day. He was losing so much weight he is 6'4 and got down to 145pounds. The mri was done and it came out clean everyone was so happy and I was trying to feel like everyone else happy but something was holding back the joy,I had a feeling something was not right he was still so sick puking all the time and dizzy. 3 weeks after the mri I almost had to call for help to get him to the hosp he say to me I'm on deaths door he was so sick one night. This next morning his mom picked him up and took him to the hosp it is called the tom baker cancer center where we live they took him in right away and did a mri and the tumor was back and there was another tumor wrapped around his pituitary gland. He was now going to start 6 cycles of chemo they said his tumors where inoperable so they waited about 2 weeks to put weight on him and got the chemo going he was on so many drugs steroids and about 18 other meds. He was on the most aggressive chemo drugs there are he was on 5 different chemo drugs. He was almost done his 1st cycle of chemo and then he got ammonia and end up in icu on life support this was just @ the start of this month it happen 3 days in icu and he came back to us.he was better so they finished off the last round of the chemo to complete the 1st cycle. The pic line was what gave him the ammonia so that was removed in icu. During the first cycle of chemo he had 4 blood transfusions and his white cell counts would sometimes reach 0 so he was in the hosp all the time. He had a week off and the 2nd cycle was going to start so they put in a port line no pic line this time. He also has fluid in the brain that might needed to be drained with a shunt oh ya and the cancer was still in his spine they did more spinal taps along the way. So this last mon the 2nd cycle was a go but then a couple nights be4 he was losing his mind and talking weird making no sense it became worse. So chemo was canceled and they ran test after test spinal tap,mri.pet scan.ct scan,and so on they thought it was the time for the shunt to be put in but they said they might have found meningitis so they have canceled the shunt that was today and he is on antibiotics they are still waiting to find out if this is what is the problem it takes about 3 days for the cultures to come back. I was with him today and it is very hard because he talk to himself and makes no sense his mind is lost and I miss him. He does sleep most of the time, the doc told me we all need to get together his parents,docs,and others to decide on some very hard stuff about making him as pain free and comfortable as possible he most likely is near the end. This is aLl written very scatter and poorly sorry about that my mind is full of worries. He does have a blog about his journey www.ryanalewis.com he is a very good @ writing he did stop posting anything new about 3 weeks ago as he became more and more sick. Thanks for reading and please ask me for contact info if anyone would want to chat.

steph
Reading this brings about all the feelings Im feeling today. No one really knows this pain other than the people here that are dealing with it.My sister cant seem to get a break with this either. One thing after the other is going wrong. My heart goes out to you...

steph0steph

4theloveofmysis said:

steph
Reading this brings about all the feelings Im feeling today. No one really knows this pain other than the people here that are dealing with it.My sister cant seem to get a break with this either. One thing after the other is going wrong. My heart goes out to you...

4theloveofmysis
Thank u for the kind words of support. I will pray for u and ur sis and please take care. Are u from the states?or canada?

BabsOregon

steph0steph said:

4theloveofmysis
Thank u for the kind words of support. I will pray for u and ur sis and please take care. Are u from the states?or canada?

Your posts
Steph,
I read your posts over the past few days. I am so sorry that your beautiful young family is going through this horror. I live in Oregon and found out exactly two months ago that my 46 year old husband has inoperable GBM. He has been going through radiation and chemo, including one Avastin treatment, but he has had several set-backs and it isn't clear that he will be able to continue the treatments on schedule.
We don't have any children together and my only child, a 24 year-old daughter, has been a tremendous help to us. I remember so well how much strength it took to be the mother of a toddler and wonder how you are holding up. I hope you have lots of support - even with that, I am sure that your are pretty tapped out.
I will continue to watch for your posts and try to be responsive. Take care.

4theloveofmysis

steph0steph said:

4theloveofmysis
Thank u for the kind words of support. I will pray for u and ur sis and please take care. Are u from the states?or canada?

steph
We live in Calif. Thank you for the prayers. This is the worst thing ever. My sister doesnt want the family to know, so I feel pretty alone. Our father and our kids know and thats it. So hard Ive dropped out of site from the rest of my family out of respect for my sister. I find my comfort here with the people on this site that know how I feel.

globia

steph0steph said:

Thank u
Thank u Globia that is very kind of u. My husbands fight has been hard and we are near the end the doc told me today He was found to have a tumor in nov of 2010 as a mri showed us he was puking all the time and dizzy for a couple months be4 they did the mri. After that mri he had surgery about 5 days after my 3 year son had his 3 year old bday in the hosp 1 day be4 my husband had the surgery. The surgery went well and they were able to remove most of the tumor in the back of his head right above the spine. When he woke from surgery he had double vision and google eyes he still has double vision to this day.2 days after the surgery they told us the bad news that it was cancer the highest grade. About a month after surgery he started radiation to the whole spine and head 32 rounds of that. He had a spinal tap done be4 radiation started and there was cancer tumor cells in his spine. He also could not walk well after the surgery and would use a wheelchair to get around,he would wear a eye patch to help to double vision. After the radiation they waited two months to do a mri and during that time Ryan would puke everyday once or up to 6 times a day. He was losing so much weight he is 6'4 and got down to 145pounds. The mri was done and it came out clean everyone was so happy and I was trying to feel like everyone else happy but something was holding back the joy,I had a feeling something was not right he was still so sick puking all the time and dizzy. 3 weeks after the mri I almost had to call for help to get him to the hosp he say to me I'm on deaths door he was so sick one night. This next morning his mom picked him up and took him to the hosp it is called the tom baker cancer center where we live they took him in right away and did a mri and the tumor was back and there was another tumor wrapped around his pituitary gland. He was now going to start 6 cycles of chemo they said his tumors where inoperable so they waited about 2 weeks to put weight on him and got the chemo going he was on so many drugs steroids and about 18 other meds. He was on the most aggressive chemo drugs there are he was on 5 different chemo drugs. He was almost done his 1st cycle of chemo and then he got ammonia and end up in icu on life support this was just @ the start of this month it happen 3 days in icu and he came back to us.he was better so they finished off the last round of the chemo to complete the 1st cycle. The pic line was what gave him the ammonia so that was removed in icu. During the first cycle of chemo he had 4 blood transfusions and his white cell counts would sometimes reach 0 so he was in the hosp all the time. He had a week off and the 2nd cycle was going to start so they put in a port line no pic line this time. He also has fluid in the brain that might needed to be drained with a shunt oh ya and the cancer was still in his spine they did more spinal taps along the way. So this last mon the 2nd cycle was a go but then a couple nights be4 he was losing his mind and talking weird making no sense it became worse. So chemo was canceled and they ran test after test spinal tap,mri.pet scan.ct scan,and so on they thought it was the time for the shunt to be put in but they said they might have found meningitis so they have canceled the shunt that was today and he is on antibiotics they are still waiting to find out if this is what is the problem it takes about 3 days for the cultures to come back. I was with him today and it is very hard because he talk to himself and makes no sense his mind is lost and I miss him. He does sleep most of the time, the doc told me we all need to get together his parents,docs,and others to decide on some very hard stuff about making him as pain free and comfortable as possible he most likely is near the end. This is aLl written very scatter and poorly sorry about that my mind is full of worries. He does have a blog about his journey www.ryanalewis.com he is a very good @ writing he did stop posting anything new about 3 weeks ago as he became more and more sick. Thanks for reading and please ask me for contact info if anyone would want to chat.

Steph, my heart goes out to
Steph, my heart goes out to you and your sweet boys. I wish I could give you a great big hug. If you ever want to talk I'm here. Cell #805-660-0439.

Gloria

globia

4theloveofmysis said:

steph
We live in Calif. Thank you for the prayers. This is the worst thing ever. My sister doesnt want the family to know, so I feel pretty alone. Our father and our kids know and thats it. So hard Ive dropped out of site from the rest of my family out of respect for my sister. I find my comfort here with the people on this site that know how I feel.

Hi we live in CA also, Ventura county
Where in CA do you live? My thoughts and prayers are with you and your sister.

Gloria

4theloveofmysis

globia said:

Hi we live in CA also, Ventura county
Where in CA do you live? My thoughts and prayers are with you and your sister.

Gloria

Globia
We live in the bay area northern Ca.