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Kevin Monsell

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Raised by 85 people in 3 months
This is my Dear Husband, Kevin Monsell! My name is Cathy and we've been married for nearly 23 years. Kevin was in a very serious car accident on November 22, 2017...the night before Thanksgiving. Unfortunately, Kevin's car was totaled, but really didn't sustain any visible injuries. However, after the hospital gave Kevin a CAT scan to check for a concussion...they found a brain tumor! Kevin's brain tumor is large (the size of a plum) very deep in the right hemisphere of his brain in the thalmus....and it's inoperable. Kevin is unable to work, drive or do anything that he did that was considered "normal," since the accident. We really need help from Kevin's Dear Friends, his Theater Friends, Co-workers and his Facebook Family for things that our medical insurance does not provide....that he needs. We wish we could do everything all by ourselves, but it just isn't possible, because I have been disabled physically for 17 years and counting. and Kevin took care of all of my needs and everything else we needed. Kevin is unsteady on his feet, and he has serious vision impairment due to the brain tumor. He starts radiation and chemotherapy on January 11, 2018, but Kevin's Neo-Oncologist at Sloan-Kettering in Commack, NY told us that this tumor is "life-limiting!" Even with treatment! Dr. Andrew Lin, told us that he has 15 months to live! We definitely don't want to believe that, but we were told that it's probable. The doctor said that 50% of people who have this kind of tumor can do better with treatment and that 50% do worse even with treatment, but that this cancer cannot be destroyed or cured! As you might imagine, this has turned our world and lives upside down and shaken up like a half-broken snow globe! We hate to ask you for financial help, but under these circumstances, Kevin and I don't really have a choice. Anything that you can do will be a tremendous help! With hugs, love and many many thanks! Kevin & Cathy
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My apologies for not updating you all since March 13th. I am doing that in this update.

Please bear with me with this long update, but it will tell you everything that's been going on with Kevin and me.

Kevin is doing ok.

I'm in a lot of physical pain at the moment.

Kevin will be starting a 5 days treatment of a boosted up level of the chemo drug Temodar, which he can take at home once we get the OK from the doctor when he sees the results of blood tests from Monday.

Kevin won't be having any more radiation.

Another change to Kevin's treatment is also having a monthly infusion of a targeted chemo drug that's called Avastin.
It stops new blood vessels from forming in and around the tumor. It's supposed to slow the tumor from growing more or becoming more aggressive.

We saw Kevin's neurosurgeon this week and it really made us feel better about what we are dealing with.

Kevin's Neuro-Oncologist has a way of not explaining what is going on in layman's terms....which made us leaving the appointment we had on March 13th very scared and making us all feel even more bleak about Kevin's future and life expectancy.

But talking to Dr. Harrington, Kevin's neurosurgeon, this week pretty much turned EVERYTHING around!

He was able to "translate," what Dr. Lin (the Neuro-Oncologist) was unable to get across to us.

Here's what Dr. Harrington told us:

Kevin tumor is not a Glioblastoma which is stage 4 and the worst tumor and it's extremely aggressive even with treatment.

I asked him why he thinks that Kevin's tumor is not a Glioblastoma.

He said that "Kevin is the same man I saw back in November. If Kevin had a Glioblastoma he'd have a marked personality change and something else we would see for example is that it would be highly likely that Kevin's whole left side of his body could or would be completely paralyzed or not be able to function."

Those kinds of symptoms are not what Kevin is experiencing from the tumor he has, 4 months after Kevin's initial brain tumor diagnosis.

Kevin had an MRI at Sloan-Kettering on March 12th.

Dr. Lin said that it's too soon to see what effects of the radiation and chemotherapy treatments Kevin finished up on February 22nd.

Dr. Harrington agrees with that.

But Dr. Lin scared us by telling us that he saw "enhancements," on the MRI, and it made him believe that Kevin's tumor may be more aggressive than he first thought.

Dr. Harrington does not agree with this.
He said that it's still way too soon even though Dr. Lin saw "enhancements," on Kevin's MRI.

He also said that Dr. Lin is also making these assumptions based on the report which was read then written by a radiologist at Sloan-Kettering and it's like Dr. Lin is working with second-hand information.

Again it's still way too soon to know how this tumor will behave and how it will react to the radiation and chemotherapy treatments Kevin had from January 9th to February 22nd.

There is still a lot of swelling in Kevin's brain that needs time to go down.

Dr. Harrington said that with the new infused targeted chemo drug Avastin, coupled with the boosted levels of the Temodar for 5 days is Dr. Lin's way to "go to the mat," for Kevin in fighting against this tumor!

In other words, he's "throwing everything at it to help Kevin fight against this tumor!"

Another glimmer of hope is that Dr. Harrington sees Kevin having years in front of him...to live!

Dr. Lin didn't give us that when we saw him.
Instead he brought up the 15 months time frame and hopes Kevin will make it to that.

Dr. Harrington said that Dr. Lin doesn't want to give false hope to us, but that with the years of experience that Dr. Harrington has over Dr. Lin, he can understand why Dr. Lin didn't tell us the kind of things that he told us in this appointment.

Dr. Lin is also a very academic, cerebral and a very analytical man. That he just doesn't seem to have the capability of expressing himself in the same way that Dr. Harrington is able to.

Again, I also chalk that up to the many more years of experience that Dr. Harrington has compared to Dr. Lin.

That doesn't mean that Dr. Lin isn't a brilliant Neuro-Oncologist with whom we truly trust with Kevin's care and treatment of his brain cancer!

Dr. Harrington is a brilliant neurosurgeon who operates daily on people's brains and spines, and we trust him to guide us while Kevin is having treatments at Sloan-Kettering.

Dr. Harrington wanted Kevin to go to Sloan-Kettering and nowhere else! It's what we wanted to do when we found out about Kevin's brain cancer.

He made it happen, and we're extremely grateful for him and his expertise and his complete honesty with us.

That brings us to something we needed to know from Dr. Harrington. He was the one who said that Kevin couldn't work for the next 3 months, when we first saw him in early December.

We found out from both Dr. Lin and from Dr. Harrington who both have said that Kevin can't return to work, and that Kevin can't drive anymore.

Kevin's vision deficit or Hemianopsia (a cut in the field of vision) is too great in Kevin's left eye.

Also Kevin's dexterity and weakness in his left hand arm and weakness in his left leg
would be too difficult to try to work around.

Kevin can't ambulate alone. He needs the rollator when we go out of the apartment plus he needs me to be by his side to give him cues so he can get to where he needs to safely.

From the recommendation of the physical therapist and especially the social worker from Catholic Home Care we ordered a Phillips Life Line.

If Kevin ever fell again or needed help that I can't give him...he will have a pendant with a button to push to get help here for Kevin.

We received it last week and I have to set it up.

It would be the only way I would or could ever leave Kevin here in the alone for a very short period of time.

Even with it, I don't want to leave Kevin alone and take any chances in the case where he could/would need help.

I'm tired and stressed out and worried about a lot of things.

One more thing Kevin has been having a problem with is his voice.

Ever since he had the brain tumor biopsy and was intubated and extubated....he barely has any voice.

Dr. Harrington referred us to an ENT who we will be seeing next Thursday.

Dr. Matar will look for vocal cord paralysis and also see if either or both vocal cords were scraped or torn by the breathing tube going in or coming out before and after the brain tumor biopsy Kevin had on November 27, 2017.

It's crazy how fast the time has flown by!

That's the whole scoop for now!

Thank you all for your support and for your love and kindness. Every bit of positivity that you can send our way, we do and will continue to appreciate!

With much love and many many thanks!
Cathy and Kevin
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Dear Friends and Family,

Later today Kevin is getting blood drawn for labs locally, here in Center Moriches.

I have scheduled blood draws ahead of time, every Monday each week. That's what Dr. Lin wants.

We will be receiving Kevin's chemo medication tomorrow from U.S. Specialty Pharmacy.

The new dosage of Temodar for this new course is 300mg for 5 days...then 23 days off.

Then we see Dr. Lin on Tuesday April 10th which will be a long day for us. We also will see Dr. Cahlon for a post-treatment follow-up, and getting the Avastin infusion done that day as well.

We're still waiting to hear from Carrie the physical therapist from Catholic Home Care on when her appointment with Kevin this week will be.

It's supposed to be her last appointment with Kevin, unless Dr. Lin feels that Kevin needs to get more PT. She's working on getting authorization for this last visit. Hopefully she will get it.

Otherwise, that's what will be happening...which is much different than the first course of treatment Kevin had.

We love you all!
Thanks for everything!
Cathy and Kevin
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Dear Friends and Family,

I don't know what else to feel....except stunned by learning what we did today....and feeling completely heartsick as a result.

When we found out that Kevin had brain cancer, after Kevin's accident....I held myself together as best I could.

I had a severe "Cathy finally lost it and cried for 8-10 straight hours," on Christmas Day...about Kevin and what we first learned on December 19th from Dr. Lin at Sloan-Kettering, and what were about to face.

I didn't expect to learn that the "15 months with treatment," statistic that Dr. Lin had told us in December about how "life-limiting," this tumor is....is now a goal we're hoping to reach!

And now what we face is:

-No more work for Kevin.
-No more radiation.
-5 days of boosted doses of chemo and 23 days off.
-Avastatin infusions every 3 weeks to treat the *probable glioblastoma* tumor, even though it's not a chemo medication, per se.
- Weekly blood draws done locally at Quest Diagnostics in Center Moriches.
-seeing Dr. Lin even month.
-Having another MRI in May.

This link below explains about how the Avastatin infusion works, and what it does.

I didn't hear all of this information when we were in with Dr. Lin today. Maybe it will help you all understand what it does too....and how it will hopefully be a benefit for Kevin.
I'm hoping this drug gives him more time!

I'm glad that they had room in the schedule due to the storm, to give this to Kevin today.

But, I don't even know how to think about this.

I had to write this down for myself...as well as for you.

I'm really hurting.
I'm sorry.
Cathy
+ Read More
Dear Friends and Family,

I don't know what else to feel....except stunned by learning what we did today....and feeling completely heartsick as a result.

When we found out that Kevin had brain cancer, after Kevin's accident....I held myself together as best I could.

I had a severe "Cathy finally lost it and cried for 8-10 straight hours," on Christmas Day...about Kevin and what we first learned on December 19th from Dr. Lin at Sloan-Kettering, and what were about to face.

I didn't expect to learn that the "15 months with treatment," statistic that Dr. Lin had told us in December about how "life-limiting," this tumor is....is now a goal we're hoping to reach!

And now what we face is:

-No more work for Kevin.
-No more radiation.
-5 days of boosted doses of chemo and 23 days off.
-Avastatin infusions every 3 weeks to treat the *probable glioblastoma* tumor, even though it's not a chemo medication, per se.
- Weekly blood draws done locally at Quest Diagnostics in Center Moriches.
-seeing Dr. Lin even month.
-Having another MRI in May.

This link below explains about how the Avastatin infusion works, and what it does.

I didn't hear all of this information when we were in with Dr. Lin today. Maybe it will help you all understand what it does too....and how it will hopefully be a benefit for Kevin.
I'm hoping this drug gives him more time!

I'm glad that they had room in the schedule due to the storm, to give this to Kevin today.

But, I don't even know how to think about this.

I had to write this down for myself...as well as for you.

I'm really hurting.
I'm sorry.
Cathy
+ Read More
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