Our Dearest Clark

I'm sorry that it has been so long since I have updated the blog. When my Dad started treatment on September 26th at Mayo Clinic our whole world was turned upside down. He was hospitalized day one and never left the hospital. As radiation went on he became weaker and more things began to stop working in his brain and body. The radiologist said it could take weeks after treatment for radiation to show it's benefits and reverse some of the symptoms my Dad was having. 2.5 weeks into the 3 week long radiation treatments the radiologist came and said he usually sees some improvement by then and he didn't think my Dad was going to get better. My Dad finished the radiation on Friday October 18th and became unresponsive by Tuesday October 22nd. They then told us they thought he only had a few days to live and we have been waiting for his time to come since.

The past month has been the most traumatic time in our family's lives. We tried day and night to help my dad feel safe and loved and supported through this experience. There were so many times he cried and said how grateful he was for us and how he could feel our love and that's all we could really do. It pained us that we couldn't help him more and save him from this horrible cancer, but we do know we did all we possibly could.

Our Clark is the absolute sweetest and silliest soul to walk the planet. He made those close to him laugh and feel loved and important. He was an extremely smart mechanical engineer who could engineer just about anything (including my parents massive pond and bog system in their yard and their entire home). He is a lover of sports (especially football and basketball), and lover of nature and plants, a lover of birds and animals, and a lover of his family most of all. We are all forever changed to have known him and have him in our lives and will keep him with us in our hearts forever and ever.

We will be having a celebration of life for him at my family's home. Time and date to be announced later on.

Again, thank you for all of your words of love and support to my family and for the donations to cover the costs of this family emergency.

Standard Care & New Symptoms

A lot has happened since I last posted. Things change every day with my dad and when I am able to be with him I don't want to be writing blog posts. When I am unable to be with him I am constantly researching, talking to people, and trying to find the right answers and connections, so that we can quickly make the very best choice for my dad.

Sadly, on our trip to CA every place we visited told us we have to do the Standard Care (chemo + radiation) and then have the cancer begin growing again to be eligible for any trials in the future. They also said it was unlikely he would even qualify for those due to the leptomeningeal spread. They all urged us to begin full brain and spine radiation at Mayo immediately. They said that tiny tumors are beginning to form through my dad's brain and spine and even a tiny amount of growth from these in the spine can be major symptoms for my dad. Since Mayo has proton radiation we are going to begin this radiation on Thursday at their facility. There are only a few proton radiation machines in the country and Mayo has one! This radiation is known to have far less symptoms than Photon radiation and won't go past the spine to his organs like the Photon does. He will be doing chemo along with this daily radiation.

Over the weekend my dad has gotten worse. It is so painful waiting for the care to start. We requested Friday to start on Monday, but they said Thursday was the earliest they could start. Each day we wait is scarier and scarier.

Over the past few days he began to have double vision in his left eye, along with the worsening vision loss. He requested to start wearing an eye patch to cover this eye and we are hoping this will start to help with the migraines he is getting. He is now saying that even his right eye isn't processing sight right. He says he can tell it's his brain not processing it right and that it is hard for him to explain.

He is having increasing confusion and it has become very hard for him to walk, even assisted by us, starting yesterday. We got him a wheelchair and are working on buying him a nice walker for when he feels like trying to safely walk (still with our help). Walking brings him so much joy. We are devastated about this new symptom.

The trouble swallowing is still a big issue, as well. We have been trying to get him into a swallow study for a week now and they say they sent the order to TMC and to call and schedule, but no one calls us back. We decided to just go to ER there yesterday to say he needs one done and they said he could do it. We waited hours and after calling him fully back from the scan they said never mind they couldn't do it anymore. It was such a waste of time and so much energy wasted for dad. After that is when he started to not be able to walk well.

Another new thing is he seems unable to regulate temperature. He will be absolutely freezing and unable to get warm out of no where, etc.

The other night he suddenly seemed unable to talk and started just nodding, shaking his head, and holding his throat in pain. He did this the rest of the night. We were so scared this symptom would stay, but it seems to have left and he can talk again. PHEW. This cancer is so up and down with different symptoms, we never know what to expect at a given moment.

In his confused state he remains so brave and sweet and caring. He blows us all away being such a great example of strength and we hope we are able to keep making him feel as comfy, loved, and happy as we possibly can.

My Uncle Robert came to visit over the weekend and we all took this photo right before he left to go back home. We loved having him.

Trip to CA & Big News

My parents and brother just left on a trip to CA to visit City of Hope, UCLA, and USC to see if my dad is eligible for any of their Glioblastoma trials. We had been pretty discouraged because at our Mayo appointment last Friday they told us it's very unlikely we will find a trial until he has recurrent Glioblastoma, which means we have to do something to get rid of it already and it came back (or began growing again). Since we were told by multiple places my dad's wasn't operable and the Standard Care wasn't going to be good, due to the full brain and spinal spread and the way they'd have to radiate his whole brain and spine, we lost a lost of hope over the weekend. Mayo also made it clear to act quickly with our decisions because my dad has little time left. We got very excited to possibly get the CancerNeo vaccine and then found out it could take 12 weeks to get back and that is too long for my Dad to wait. Again, we were in full panic mode. Last night my Dad's pain level was at an 8 and we were all unsure if he should even go to California, especially when it was unlikely they had any trials for him, traveling is so hard right now, and hearing more places tell him they can't help him would be too hard for all of us. City of Hope even called us yesterday and told us the trial that wasn't for recurrent already closed and we were all spiraling out of control about what to do.

7 pm last night my brother got a call from the Ivy Brain Tumor Center at Barrow. We have been trying to get a second opinion from them for weeks, you guys. WEEKS. They reviewed my dad's scans and medical records and DO think they can operate on the tumor. This changed literally EVERYTHING and it is the night before they left on this trip they found out. Now when we go to these places in CA we can find out about the trials for recurrent and do these after he does the surgery. They said they think they can get him in by October 1st and take out maybe 80% of the tumor which will buy him some time to figure out how to tackle the left over cancer in the brain and the spine.

My dad was in a lot of pain when the call came in and kept his eyes closed the whole time laying down, but still kept saying how happy he was that someone finally thinks they can help him. Every doctor we have seen for this so far has told us they cannot help him and he won't survive this. Hearing someone say yeah they do think they can do something to help the process start is major for my dad's dwindling hope.

The Mayo appointment was on Friday and he was there from 9am-5pm and all they heard was bad news from everyone we met with. We are very grateful that we kept pushing and got a second opinion from Barrow and we hope that we just found the first thing we are going to do to try to stop the spread of this tumor!

Please send positive energy that the trip goes okay and isn't too confusing, hard, painful, or hope dwindling for my dad.

Much love to all!

Donations go to his wife, Frances Young:

Zelle/Apple Pay :: 520-808-0081

Venmo :: Fran-Young-12

Paypal :: fatfreestuff@yahoo.com