Two and a half years ago my husband started to have focal seizures at work. They did an MRI and he went to Jefferson in Pa and was told , " this right here.....if anything is a benigne tumor and we don't do anything about those. If it bothers you or continues to grow come back."
Right then and there he should have been offered a biopsy anyway but did not get offered one.
He then had a few more focal seizures and again was given an MRI under a new insurance group he had for work. The imaging showed growth in that spot and they did nothing. Said we don't know what it is we will keep an eye on it. Again no biopsy offered at first sign of change in size. They monitored it for 2 years and did nothing. All we got was "well we don't know what it is, we are stumped." Yet offered no biopsy. Finally in aug 2017 his neurology doctor said he still isn't sure what it is and he wants it biopsied. Over 2 years this "benigne tumor" grew and all they did was watch and wait. Monitor with many MRI's every few months and just watched and waited.
Finally on September 2017 he had his biopsy. His neurology surgeon came to me and gave me news I knew was coming. I had already braced myself before but you always want to hope and wish and pray it's benigne or something else.
Astrocytoma grade lll.
My Heart Sank!!!!
A man that ate very healthy and went to the gym daily. 6 feet tall and great build. Healthy as anyone can ever be, ends up with brain cancer????
After his biopsy and a few days in the hospital for observation He came home. He was healing well and still up and about. Upbeat and very positive. He was my rock when I was falling apart when it should have been the other way around. Don't get me wrong, I tried to stay positive and strong but sometimes I fell apart and he still told me it all will be ok and everything will be fine, caressing me and comforting me in his arms.
Then we go to his oncology radiology dr and she confirmed the diagnosis from surgery. She wanted to treat him immediately but we had to wait almost 2 months for his chemo pill to get approved and sent to him. 2 months!!!! 2 moths waiting to start treatment for a very aggressive tumor! !!! Why? Why the wait, why all the confusion, why? Meanwhile his cancer grew while they waited 2 months for his chemo pill to be approved and sent to us so he could start the radiation treatments. You have to do both together for many weeks in hopes for a better outcome.
He tolerated it well in the beginning then in mid November 2017 he got cellulitis in his leg from being on steriods so long, even before his biopsy he was on them to help control brain swelling.
Once the cellulitis hit, he had infection after infection. Cellulitis, sepsis several times, mrsa, uti's, you name it he got it from the weakened immune system from the steriods. There were times he was so weak he couldn't even lift his head and speak. In and out of hospitals from November to january, only home maybe 4 days total in that time frame.
In December my dear friend came to marry us. My kids came to witness. We had an ICU wedding. Doctors, nurses, social workers, amd staff congratulated us and tried to make us happy in a time of sadness.
Jimmy was so happy. All he wanted to do was marry me and he could not wait to do it. He cried as my friend read a nice letter to us she wrote while she married us. I kissed his cheeks and forehead and wiped away his tears as we married. God I love this man!!! Why, why am I not allowed to keep him forever?! It's not fair! We just started as husband and wife!!
The hospital recommended hospice the day we got married. We wanted a second opinion so I had him sent to MD Anderson at cooper in hopes they could do something, or at least something different for more time, even if it's a few months, he'll I'll take it. Wishful thinking.
They also recommend hospice.
I'm reaching out to Johns Hopkins but I already know their answer but I'm still going to see what they have to say. Even if it's clinical trials to help him feel better during this time.
I brought him home on hospice last week (mid Jan 2018).
I work for hospice so I know exactly what's coming but you never want to listen when it's your own loved ones. I want more time with him, I need more time with him!! It's not fair!!! We both waited for happiness and real true love our whole lives so why is he being taken awayso young so soon?
I took off work to care for him which I cherish deeply. I care for him, i feed him, i bath him, massage him, kiss him constantly, spend all my time with him. I sleep on the sofa every night next to his hospital bed with my hand on his chest.
He mostly sleeps. Wakes up usually to eat , sometimes not, but then will go right back to sleep. When he is awake he is there and appropriate with the conversation and questions and answers. He is aware.
I watch him constantly. Every breath, every sound, every facial expression, I watch. I want to burn him and his gorgeous face and his sounds into my brain so I remember him forever.
I do not know how long he has, nor do I want to know.
I'm making this page to ask for some help. He is greek orthodox and needs to be burried when the time comes. Him and I discussed the options and need to start making the arrangements. I don't want to, but I have to follow through and really need some help with funding.
Jimmy has helped everyone he ever came across any way he could. Now it's time for him to get help even if it's for this. Sadly.
Funeral home expenses plus the space and burial all add up especially if you don't have things prepared because you are still so young and were healthy a few months prior. Who thinks about that so soon? We didnt.
I wouldn't wish this on anyone and hope when the time does come for you yourself it goes easier because I'm a wreck over here and feel like I'm swimming up stream with broken arms.
My heart hurts.
I'm not demanding the donations, but I am asking so it helps me with costs of his final resting plus medical bills that come from out of his network.
Any little thing will help. Any amount.
If any of you know me you know how happy this man has made me in what little time we had and continue to have, so it's only fair that I do right by him and give him the greek burial he needs and deserves.
Thank you all for reading and listening to our story.
We love you all.
James and Charon
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