Hello, my name is Shannon and my little family needs your help.

My husband Joseph just started palliative care and will be moving to hospice very soon. Almost 4yrs ago he was diagnosed with kidney cancer. We were advised that removing the whole kidney would give him the best shot at fully removing the cancer, and hopefully no reoccurrence. After his kidney was removed his doctor said “things look great, go start living life.” After each follow up test we were told he was still great, and he was good to go.

But things were definitely not great. He kept complaining of pain, and blood in his urine, after not being heard and multiple trips to the ER, he switched kidney doctors. After the initial tests with the new kidney doctor he agreed things were not great and have not been great. My husband was actually in Kidney failure. The doctor went onto tell us that his test results from his old kidney even showed his remaining kidney was “stable” not great, and only for about 3 months after surgery and then had a huge decline.

We immediately started testing for transplant and this testing showed something else was going on. After more scans we were told the cancer was back and in his one and only remaining kidney, and he was no longer a candidate for transplant.

If that wasn’t hard enough to hear, we were also told there were no treatments available to him because his kidney was in such bad shape. They said any chemo or strong treatments would kill him even faster because his kidney could not handle it. They didn’t even want him taking ibuprofen or eating too much protein. At this time his oncologist told us he’s more worried about his kidney failing and killing him than his cancer.

Over the next year, he started having heart attacks and was In and out of the hospital. At one point, they thought they would need to put in a pacemaker because his heart rate was so low. But before they moved forward with that we met with his heart doctor and he wanted to do some testing for one more thing…pheochromocytoma.

After lots of tests it was confirmed he now also had this very rare type of cancer called pheochromocytoma. His endocrinologist here says this is so rare, that she doesn’t know what to do with it so she sent him to the endocrinologist at the big hospital near us, OHSU.

His latest pet scan showed cancer in his kidney, head of the pancreas, both adrenal glands, and his pituitary glands.

There are no treatments for my husband, and the doctor told us that most likely he will now pass from a major heart attack or stroke. With this new diagnosis he has major adrenaline spikes that cause a lot of pain and mimic heart attacks. His heart rate during spikes will go from low 30s and will shoot up between 170-187. Then drop back down to low 30-40s and just keep going back and forth. This is causing a lot of strain on his heart. At night when he sleeps it will drop as low as 32. These spikes used to mostly happen during the early evening and through the night, giving him a small break during the morning and afternoon. But now they progressed to happening all throughout the day. His heart constantly hurts. And it’s super scary because we never know if it’s a heart attack or an adrenaline spike. So we spend a lot of time in and out of the ER. Hes exhausted, and in ton of pain. Which were still working on getting controlled.

At this point with no treatments options, he has signed a DNR and he does not want to do any more testing. He’s lost an extreme amount of weight and is barely eating. He was told that when he eats his stomach expands, which is causing extreme pain in his pancreas. Because of this, most the time it has become too painful to eat. At most he eats once a day and only a small amount. He has decided he just wants to be as comfortable as possible to enjoy what time he has with his family.

Since diagnosis I have been the only one working and this has caused an extreme financial strain for our family. He applied for disability when he was first diagnosed and It took over a year to get the first denial, (his attorney didn’t even have the newest diagnosis in the paperwork when it was turned in the first time) and now we’re almost 6 months since denial and the the paperwork has still not been looked at for the appeal. So who knows if we will even see an approval before he passes.

I currently have no money in savings, and each month we are living paycheck to paycheck. All my monthly bills are past due. I am paying the past due amount and shut off notices just to keep everything on.

My biggest fear right now is losing him and not having the money for the end of life expenses. Such as his cremation, urn, and memorial service. I do not want to worry about these expenses while grieving the loss of my husband. As is I will not be able to take time off work to properly grieve because I cannot afford to. But I can’t imagine trying to deal with the stress of coming up with money for his cremation while grieving and working.

We appreciate every penny. It all adds up and every penny truly helps.

Thank you for taking the time to read our story. If you are not able to donate sharing, also helps tremendously.

Thank you from the bottom of our hearts.

The Gravon Family