Thank You

Thanks to everyone for exploring your contacts and sending us so many ideas. Unfortunately, Kevin isn’t able to travel anywhere for appointments because he is so immobile and fragile, and we’re finding that he qualifies for virtually no clinical trials because of how ill he is. Most clinical trials have requirements regarding mobility, bloodwork, having been off chemotherapy for a certain amount of time, and so on. The tragic thing is that today's cancer treatment and support network hasn’t yet evolved to deal with such an aggressive medulloblastoma that essentially paralyzes patients within a few weeks.

The most recent chemotherapy that Kevin tried did not sit well with his GI tract; acid reflux, indigestion and heartburn made him very uncomfortable for the past week. Kevin’s doctors decided to switch him to yet another chemotherapy that we will attempt to administer from home. Today was the first day we gave him this agent, and we hope it won’t upset his digestive system as much as the previous chemo.

Today we also made the switch to Hospice. The switch was a bit more hectic than we had anticipated, for they came into the house to switch out hospital beds, wheelchairs and other equipment. After adding the Hospice transition and the new chemotherapy onto the general duties of taking care of Kevin, everyone is exhausted.

Kevin has remained in bed most every day for the past several days, and he is still unable to speak. He has been listening to a lot of audiobooks, and he wants to spend nearly every waking moment holding Kathlin’s hand. She is an incredible source of strength and support for Kevin. Kathlin’s mom has been out here this week, and she has also been a huge help.

Again, thank you to you all for your research and love. Keep sending Kevin your best wishes and prayers.

Note from Kathlin

Kevin has been relatively stable over the past couple of days. On Thursday, we had people from palliative care come over to talk with Kevin and the family. This doesn't mean we've given up on the situation and are only preparing for the worst-case scenario. We still plan on fighting. However, these experts helped us talk through some important issues. Although understandably emotional, the talk went well. We've taken a few measures to make Kevin more comfortable, including anxiety medication and tools to help manage his secretions if his swallowing becomes even more impaired.

I mentioned that we all still want to fight. While we're reaching the bottom of the barrel of "conventional" treatments, we're starting to explore alternative and experimental options. Below is a message from Kathlin, asking about any connections you may have to such options. It was originally going to be an email, so she gives a good synopsis of the history of Kevin's situation. If you have any connections or ideas for less conventional treatment options, please leave a message on the blog or email us at KevinWilliamsBlog@gmail.com. Thank you all for your help, love and support.


Hello Everyone,

My name is Kathlin Ramsdell. My fiancé, Kevin Williams (both Colgate class of 2010), has been fighting a battle against an aggressive brain tumor since last fall. After seeming to respond to therapy, his tumor is now progressing again. He is at home with his family and me in northern California and is very disabled (unable to speak or move much at all). His oncologists have just started him on a different chemotherapy that is supposed to help, but only in the short term. The type of tumor he has is medulloblastoma/PNET and it was never resected (it is in his brainstem where they can't operate). If you need more detailed information about his clinical history in order to help, please let us know.

Kevin and his family want to try nearly anything (experimental drugs, for example) to prolong his life, give him a better quality of life and, ideally, to treat the tumor. Does anyone know or have ties to people in the medical field, pharmaceutical companies, or anyone that may be experimenting with brain tumor or cancer treatments? Compassionate use of a drug or therapy that we could administer at our local hospital or at home would be ideal, but Kevin would also want to participate in a clinical trial if he were eligible. I would greatly appreciate any information or contacts you may have. Kevin wants to fight for as long as possible and we are trying to give him that chance.

Sincerely,
Kathlin Ramsdell
kramsdell@students.colgate.edu

Another Chemotherapy

With the recent news of further tumor growth in mind, Kevin’s chemotherapy schedule has increased from once every two weeks to once every week. This additional chemotherapy, however, is seen more as a temporary “stop-gap;” it is not something that will work over a long period of time. We are hoping this will buy us some more time to research other possible options. The neuro oncologists seem to be running out of ideas for treatments, which is very disheartening. However, we’ll take anything that may buy Kevin a bit more time.

Some of you may be thinking about the fact that Kevin’s actual diagnosis was “better” than the original. True, medulloblastomas are more successfully treated than glioblasotmas. However, we have heard from other neuro oncologists that inoperable medulloblastomas, especially in pediatric cases (which Kevin basically is) tend to act like glioblastomas. That is, chemotherapy and radiation treatments often don’t do much to kill the tumor. It breaks my heart to report it, but this is exactly what we’re seeing in Kevin’s case.

We have all been focusing on living day by day and appreciating the little things that we can. Kevin still can’t talk and has been using the letter board to communicate, but he has watched the webcam and heard the voices of a few of his closest friends who now live far away. He’s also been able to eat some milkshakes and other pureed foods that he’s been craving. He assigned the Butterscotch Swirl milkshake from Marianne’s 4 ½ stars—I guess he really enjoyed that one! Kevin also requested a New York style cheesecake and homemade Almond Roca from our very culinarily gifted neighbor. To our surprise, he was able to chew and swallow small pieces of Almond Roca. Immense motivation can produce some stellar results!

Thank you all for hanging in there with us throughout this rollercoaster journey. Maybe it’s more of a haunted house ride with a track that winds through the dark and takes giant drops, always catching us by surprise. We have desperately needed your support, and we still need it now. Please send Kevin good wishes and prayers. Thank you so much for your love and support.

Tough News from Stanford

The Stanford medical team that has been working with Kevin’s case over the past several months got back to us Friday with a ruling on the latest MRI results. They had presented Kevin’s case at “tumor board,” a weekly meeting of Stanford oncology physicians, and had decided that the MRI shows tumor progression. We did not want to hear this news, and we’ve all been pretty upset by it. It’s heartbreaking to watch Kevin struggle after he’s been working so hard to improve. This is another steep drop in the rollercoaster of Kevin’s illness, and we’re trying to readjust to the new reality of the situation.

We’re not yet sure how this news will affect the treatment Kevin is receiving. The chemotherapy will most likely increase, and there may be a change in medications used, but some physicians need to talk and decisions need to be made before we know anything for sure. We haven’t yet exhausted the options for treatment, but this provides little comfort when we must progress to treatments that are riskier or have historically had lower success rates.

Kevin is extremely depressed by this news, but he was having a rough day yesterday even before receiving the bad news. He was exhausted throughout the day. He had a difficult time with speech, swallowing and throat-clearing, which may be due to a number of reasons ranging from exhaustion to the tumor pressing against nerves that control those functions.

Despite all the bad news, Kevin has been able to find some bit of pleasure in tasting certain foods; he has started requesting numerous “junk foods” that he is craving. He is not able to eat solid food at this point in time, but we have been pureeing things to give him the tastes he craves. In the last few days, he's gotten to taste an Its-Its ice cream sandwich, breakfast burritos and a KFC meal. Kathlin has been amazingly loving and patient while feeding him; even though we’re only feeding him purées, he takes a very long time, and a lot of coaching, to get through a few bites. For the millionth time, we are eternally thankful for Kathlin and the love and support she’s given to Kevin and our family.

Thank you to all of you for keeping Kevin in your thoughts and prayers. Please send him a bit of extra hope during this rough time.

A Possible Turnaround?

The difference between yesterday and today should hopefully be a sign of things to come. Yesterday, Kevin went into the hospital for chemotherapy. The local oncologist didn’t like the way Kevin looked; it was the first time this doctor had actually seen Kevin since the downturn a couple weeks ago. Of course, we all knew Kevin didn’t look great, but the reaffirmation of that fact can echo around an already tense atmosphere and severely bum everyone out. Yesterday, therefore, was another downer. Kevin was exhausted and didn’t feel up to doing much, and everyone was pretty depressed.

Apparently, the jury is still out on the topic of the tumor growth (sorry for misleading you in the last post, that’s what we thought the situation was at the time). There are some radiologists who think the tumor has slightly grown since the previous MRI, but there are some who think the change is negligible. However, even if the tumor appears slightly larger on this MRI, there is the possibility that the “growth” is due to swelling that would have been suppressed by steroids, had Kevin remained on a steady dosage of steroids over the past few weeks. Our attempts to get him off the steroids may have caused this swelling to flare up, which may appear as tumor enlargement on the MRI. I’ll update you all when we have a more definitive answer as to what the MRI actually shows… but for now, know that the tumor is about the same size, but we may adjust the chemotherapy regimen if it is decided that the tumor is growing slightly.

Yesterday, we started an even larger dosage of IV and oral steroids to see if that could boost Kevin’s energy. So far, the results seem to be positive. Kevin was more energetic today, and he even did a few exercises at home. When Mom asked if he wanted her to cancel tomorrow’s occupational therapy appointment, he said not to cancel yet, but to see how he feels in the morning. I think that answer shows that he’s feeling a bit better, both physically and mentally. We hope this trend continues so he can resume therapy, return to eating and reclaim his fighting spirit.

Another MRI

Despite an increased steroid dosage, Kevin’s symptoms haven’t improved much over the past few days. This has caused our stress level to rise and the questions to grow exponentially. We decided that the unknown was more harmful than the known; we were so worried about what the tumor was doing that it was difficult to brainstorm new ideas, questions and solutions to the problem at hand. To give us some answers, we took Kevin in for one more MRI today.

The good news: the tumor hasn’t grown much at all over the past five weeks. The mass of the tumor is the same size, but there is a bit more swelling in one area. This may be swelling from an agitated area that arose once the steroid levels got too low—the steroids could no longer act as an anti-inflammatory to that certain spot. This swelling is most likely affecting Kevin’s control of his left side. We hope this swelling will decrease with longer exposure to a higher dosage of steroids.

The MRI answered a lot of questions, and quelled a few of our main fears. We were afraid that this setback was due to tumor growth, and today we learned that is not the case. Therefore, our best guess is still critically low levels of steroids. We have been giving Kevin larger dosages for about 5 days. His stomach has been upset for many of those days, so the steroids might not have been in his system long enough to be fully absorbed. Therefore, even though we’ve been giving him more oral steroids, he may still be suffering from a lack of steroids. Go figure. We will continue to give him the increased dosage of oral steroids, but we may tinker with medications and diet to help his upset stomach and steroid absorption.

In sum, despite the good news today, our minds are still working overtime to figure out what’s wrong and what we can do to fix it. Thank you for keeping Kevin in your thoughts!

Continued Exhaustion

Kevin’s energy level unfortunately has not increased since my last post. He is still utterly, totally and completely wiped out. Thankfully, his swallowing and coughing reflexes have kicked back in, so we are no longer too concerned about him aspirating something. However, there hasn’t been much of anything in his mouth to aspirate because he hasn’t had the energy to eat or drink. Thankfully, Kevin still has his “tummy tube” in, so he’s been receiving nutrition through that for the past few days. Kevin loves food, so when he’s too tired to eat, that says a lot.

Yesterday, we decided to give Kevin a larger dose of oral steroids to hopefully reverse this downward trend. It’s now been about 24 hours since his first larger dosage, and it is still a bit soon to see the effects of this dosage on his energy level. We are trying to wait for enough time to go by so we can better grasp the situation. The atmosphere here is so tense that it seems like a week since we started him on a larger dosage of steroids, and it was only yesterday afternoon! We’re extremely eager for Kevin to turn the corner and start trending upwards, so every hour that Kevin is lethargic seems many times longer.

The past two days, Kevin has been too tired to attend outpatient therapy. This is the first time he’s missed any outpatient therapy since he started in July. That shows both how fantastic things had been going for a couple months and how poorly he feels right now.

The next couple of days will be very telling in terms of how Kevin responds to the extra steroids. We hope that his energy will bounce back sometime soon so that his muscles don’t atrophy too much during this setback. Plus, it will be wonderful when he feels up to eating, exercising and talking once again.

We are all being consumed by the same worry that’s sitting in the back of our minds and chewing away at our sanity, but we’re all afraid to shine light on that worry and voice it aloud. Many medical clues point to the conclusion that this setback is most likely due to the steroid issue. Yet, we are constantly threatened by the possibility of the tumor growing larger. We dislike discussing this possibility, and we prefer to leave it in the dark corners of our minds. We’ve had to bring this idea out into the open during the last couple of days, which is probably why we are all so tense. However, even with the possibility of tumor growth now openly on the table, Kevin’s symptoms still point to critically low levels of steroids. We’re desperately hoping his symptoms over the next couple days point to this conclusion as well.

Thank you for keeping Kevin in your thoughts all these months. Right now he needs a bit of extra hope, prayers and good vibes sent to him through the atmosphere, so please keep up the support!

Steroid Speed Bump

Over the last couple of days, Kevin has been struggling from what appears to be the result of tapering off the steroids. He has had increased difficulty swallowing, maintaining his saliva and speaking, and he has been extremely tired. This morning, Kevin is pretty freaked out because he is not able to move his left side as well as he could yesterday. Kevin went a couple of days without any steroids whatsoever, and we’re guessing that these increased symptoms are due to this absence of oral steroids. Getting off the steroids could cause a bit of initial swelling around his tumor, since the steroids had been keeping that swelling down. Furthermore, since he’s been on steroids for nine months, his adrenal glands that produce his natural steroids may be significantly atrophied. It is fairly common for people who have been on oral steroids for a long period of time to have decreased natural steroids when they finally get off the pills. This decreased amount of natural steroid production can cause severe exhaustion, weakness and many other symptoms that Kevin is displaying at the moment.

Along with the overall regression in progress that we’ve seen over the past couple of days, the symptom that is most concerning is his decreased ability to swallow. His cough has also become less productive in clearing his throat, so we are worried about his chances of aspirating something. This was a concern for a very long time in the hospital, because aspiration can lead to pneumonia. Since Kevin has been home, his cough has been so productive and he regained significant control of his swallow, that aspiration hadn’t been much of a concern. Last night, however, his symptoms were combining to increase the risk of aspiration, so that’s what ultimately led us to restart him on a low level of oral steroids.

We gave Kevin a low dosage of steroids last night and again this morning. We’ll keep you all posted on how he progresses over the next few days. We hope this road block is temporary and will be cleared away soon, but we never know with this very tricky disease and situation.

A Good Week

*This is Mom updating again. Stacy drove to Kirkwood to prepare the cabin for our upcoming planned excursion.

It has been a good week. Chemo went well on Tuesday. One IV drug was administered, the pic line dressing changed, and a meeting with the Oncologist all accomplished in 90 minutes. Nice.

Kevin passed 2 more kidney stones today! We suspected he might have more. Now we have an explanation for that trace of blood in his last urinalysis.

Outpatient therapy is proceeding quite well. Kevin came to an impressive stand with the "minimal help" of his OT. We were all a bit teary eyed. Speech and Physical therapy are also keeping Kevin challenged.

We are continuing with Kevin's slow steroid taper. He is almost free of them, hopefully by our next entry, he will be completely off one more medication.

Another first took place this afternoon. Kevin's close friend Romain, who is currently in his native France, Skyped with Kevin. Isn't modern technology wonderful?