Thank you time

This post is all about you all. I want to give a huge thank you to all the supporters out there that keep us going. From comments on the blog to people bringing me and the "crew" food (which has been sooo yummy), to all the monetary donations that have been made, the cards that have been sent, the prayers and well wishes, the love and devotion of our closest friends and family. I honestly do not know how to thank you or repay you for all of your kindness, support and generosity. I will tell you one thing, it has made not only me, but everyone else in this house evaluate how we treat others and the impact we can have on others. My heart swells with every act of kindness. For all your generosity, I promise you all, I will pay it forward.

Now I know I can't make a post without a quick update on our boy. We are following the same pattern of no two days being the same. He woke in the wee morning hours, had a bit to eat and was a bit ornery. Slept a little more and then woke a little more. In his waking hours we had a really good talk. We talked about fears and the future. He knows and is starting to accept the fact that he has a very limited time left with us. Moreover, he feels and senses he is turning a corner. We have had this conversation several times, but each time he gets a little more reassurance that we will be ok. He has also been able to communicate his fears with his best friends, and thankfully they have been able to listen to them and help reassure him that they will be ok as well. Nobody is saying it will be easy, but we will be ok. Still taking care of others till the very end. There is a quote in the hospice handbook that I thought described Cleve's life perfectly and I thought I would share it with you all.

"You can't do anything about the length of your life, but you can do something about its width and depth"
                 ~Even Esar

Well, it seems no two days are the same. Yesterday Cleve was awake for a good portion of the day and today he slept most of it. It was difficult to get him to take his medication because he was so asleep, and that also made it hard for him to swallow. He did wake up in the evening when his oncologist stopped by to see how he is doing. It was such a nice surprise. Unfortunately, later in the evening he had some anger issues which seems to be yet another side effect of the cancer. Damn cancer. But in between these instances we get to see little glimmers of Cleve here and there. Denise, the hospice nurse came by the house today as well and it is always a pleasure to see her. She has a very comforting, soothing nature. We reviewed Cleve's medications, noted the drastic difference between yesterday and today, and she also noticed that his breathing is starting to slow down as well. Because of this, as I said before in my last post, we are limiting visitors. I think what me and my fellow caregivers have decided is that if you are notified, you are welcome to visit for a short amount of time, otherwise we ask for your understanding and cooperation in helping us create the most quiet, comfortable environment as possible for Cleve to finish out his days. I'm sure this is disappointing to some of you, and I am truly sorry, but he most likely won't remember your visit, and I would like you all to remember him as he was. As always, the tremendous out pouring of love and support has been phenomenal and we thank you so much.

It has been an incredibly long weekend and we have made some truly wonderful, beautiful memories. The birthday balloon celebration coordinated by my friend Susie was fantastic and truly a surprise for Cleve. We've had some wonderful visits with friends, and an awesome "unplugged" private acoustical show put on by Dr's Holderman, Bobek and Eaton that brought tears to our eyes. It was truly amazing to see these musicians put their heart and souls into singing and playing for us. I can't thank you guys enough.

With all that activity, Cleve has actually been handling it pretty well. However we cannot maintain that level either. As a family, which includes my big burly guys helping me with caregiving we are deciding to dramatically reduce the amount of visits we receive and when a visit does occur it will be for a very short time. We all know Cleve and how much he likes to be around people, unfortunately he needs his rest too. When we have too much going on, he tends to be hyper vigilant and cannot relax, which is the opposite of what we need. Whether it is effects of the medication or due to the progression of the disease (I think it's a combination of both) Cleve has been increasingly confused and can get agitated easily. He does have his clear moments of thought, and it is these times that we, as a family, would like to take advantage of. We still have some things to talk about and do which require him to have a lucid period of time. Among these things are writing letters to the kids to be opened at a later date, discussing certain personal effects he would like the children to have, and simply spending time alone as a family. While commotion can be a wonderful distraction, we need to enjoy every last moment together.

Many have asked how the children are doing, and the short answer is that they are doing as well as can be expected. I have talked with them, they know daddy has an illness that cannot be cured and that he will be joining grandma up in heaven. I have been completely open and honest with them, answering any questions they have and holding them and wiping away their tears. By being open and honest the kids are not afraid to be around daddy and even feel free to ask him questions which is also therapeutic for Cleve as well. Because of this we are able to go on as a family and even laugh and be silly. Unfortunately I am having to witness, especially Walker, having to grow up and experience grown up feelings at a much to early age. But I am so impressed with how he is handling the situation, with understanding, caring, and compassion, and even some stoicism. I think thats pretty amazing for a seven year old. And in Gavin, I can see him coping by his willingness to be around daddy and climb on him and give hugs and kisses. For a five year old, seeing his dad in a hospital bed in the living room, I would imagine that would be pretty scary. I have two incredibly amazing little boys.

Hospice care has been absolutely wonderful as well. I can't thank the nurses enough for being there. They never ever make me feel bad or stupid for calling with questions, and when they visit, they seem like part of the family too. They have made this huge transition very easy. They are a remarkable breed of people who do this for a living with such little recognition. Denise, Barb and Brenda...you are truly wonderful individuals. Thank you.

44th birthday party

Yesterday was Cleve's 44th birthday and what a party it was. We started with a pre birthday Baja fog the night before, which is a Corona with tequila up to the cap line, topped with lime juice. Then on his birthday, a giant balloon release for his birthday times two! Close friends, dinner and dessert. Such a wonderful day so I thought I would share some pictures with you all. Thank you so much for making his birthday such a wonderful memory for everyone. I hope you enjoy the pics!

Home

It has been a very long and eventful day. We finally got to bring Cleve home. He had some apprehension about coming home because he didn't want to be a burden to me and the kids. He now realizes that home is the best place to be and the most comfortable. We got to leave at about 3pm. and unfortunately got a little car sick on the way home, but once we got home he drifted in and out of sleep which he really needed. We also met the hospice nurse who brought us all of our medications and basically gave us an introduction to how hospice works. Wow, what an orientation, its all a bit surreal. I wake up in the morning realizing, no, it hasn't all been a dream. We will be meeting with the hospice social worker tomorrow, who will help with more of the family issues and not the meds issues. There are people taking care of all aspects of this process, and I am so happy I have them to fall back on.

The amount of support we have received has been incredible and I honestly do not know how to even begin to thank everyone. Everyone from friends, to hospital staff, to friends and fellow caregivers...it humbles me to see everyones generosity and I am so thankful to you all.

As I review my day, it seemed hectic and crazy but as I write about it, I think, is this really all we did? why am I so exhausted? But yes, we spoke with doctors and we came home and then spoke with hospice. Thats about it. But the truth is, is that I am tired, and so I apologize for the short posts. I want to keep everyone up to date even if our days are not as eventful as they may seem. We continue to work on pain control, a never ending cycle it seems, especially now that I am taking care of administering the meds without a nurse being right there. And I am sure this is what we will be doing tomorrow. And we will be taking advantage of and cherishing every lucid moment that we are blessed with. So...until tomorrow...good night.

We had a very busy day of visitors, every one wanting to show their love and support, and trust me, we felt it. Here are a few pictures from the day.

I guess i didn't ask if i could post other peoples pictures on the blog. If you want yours removed, tell me which one you are in and i will remove it katiekendall01@yahoo.com  But please know that if you came to visit Cleve, you are a special person in his life and i just wanted to document it. It means a lot to him.

Hospice

Today we got the news that nobody wants to hear. Dr. Poisson asked to meet with both Cleve and I. When he arrived he performed tests on Cleve's vision and neurologic function with the outcomes coinciding with his suspicions that he does in fact have cancer cells in his cerebral fluid. I can't remember the name he called it but it was something like carcinoma meningitis. Basically this is cancer cells in the fluid surrounding his brain and spinal column. He conferred with several of his colleagues as well as Dr. Hwu down in Houston, and even though the spinal tap was negative, the clinical findings are positive. I could tell he was having as hard of time delivering the news to us as we were receiving it. Unfortunately there are no options for us at this point. We could do whole brain and spinal radiation with very toxic side effects, and this would only be to reduce the pain he has in his head, neck and back area. Instead we opted to control his pain through medication. We are hoping to have him home tomorrow and enlist the help of hospice.

Ive broken the news to several friends and family, but the hardest thing I have ever had to do was have this discussion with my children. It is something a parent should never have to talk to their small children about. Gavin, I think understands to a point but doesn't know what to do with the information while Walker is reacting a bit more like I would expect. Unfortunately this isn't the end and there are many more emotions to come. My poor babies.

I brought the boys in tonight to see daddy. They haven't seen him since Friday.

Hey folks, just wanted to give you todays update. Not much has changed. We were hoping for some improvements but aren't seeing any today. He is still very lethargic, sleeps most of the day and eats minimally. It looks like he will be staying at least another day if not longer. We are not really taking visitors because of this and want to thank everyone for respecting our wishes. Its not because he doesn't want to see you or want you there, its because he is sleeping most of the time and he really needs his rest. So please do not take it personally. He knows how much you love him.

Today should be my last day for wound care for a bit, tomorrow one of the wound care nurses will be checking in on him to change his dressings. The oncology nurses have been very accommodating, getting me what ever supplies i need, but quickly leave the room...its actually pretty funny, and so it seems I'm still useful.  I am looking forward to getting back to a somewhat normal state tonight with my kids and a routine again. A big thank you to my parents for taking the kids for me and entertaining them. I know they can be a handful.

Well, that seems to be about it for now. until later....bye

The weekend

Well, its been an interesting 24 hours. The last week Cleve has been feeling increasingly more pain and more fatigue, so we contacted our oncologist here and he set up an MRI which showed no new brain metastasis but a small lesion at L1 in the back. Yesterday Cleve went in for a spinal tap to check the pressure in his brain. The results showed that Cleves meninges are enlarged. While having Dr. Traul repack his wound, we had decided to make a trip into our oncologists office as well. It was thought at first that the lesion in L1 could be due to a drop down effect of cancer cells in his cerebral fluid but we would have to wait on the test results to confirm. Since Cleve has not been eating much or drinking and vomiting, he was very dehydrated so Dr. Poisson had Cleve admitted to the hospital last night. He has received non stop fluids along with some antibiotics and steroids to hopefully help Cleve get to feeling better. The results came in negative this morning for the cerebral fluid, so it has been decided that the swelling of the meninges is due to a too rapid of a taper off of his steroids in order to get ready for the ipilumimab treatment we were supposed to receive this week. So the plan is to increase steroids to get him feeling a little better and eating and drinking better and then come home. Then we will start a taper off of the steroids again, only going much slower. Steroids are a contraindication for the ipilumimab treatment, so at this point I'm not sure that we will be doing treatment this week or even next week. We will have to wait and see about starting any new treatments until he is feeling better. This is just a quick update and i will keep y'all posted on any changes to the plan. And don't worry, Cleve is getting some much needed rest and is doing fine.

Nurse Katie to the rescue

My nursing capabilities knows no boundaries. Tonight, for the first time, I rinsed Cleve's wound with saline and peroxide and then packed it with gauze. Yes, I got my hands right in there, sopped up the solution with 4x4 gauze and then wrapped him back up. Could this be a career change for me? Nope! I think i'll stick to dental hygiene. But, at least I know I can take care of his wound without throwing up now. Here is what it looked like after I rinsed it out. Notice how spic and span clean it is

All that grey stuff is dead tissue that is starting to slough off too which I was able to remove a bit of. We are starting to play around with Cleve's medications as well. Cleve has been experiencing some tremors and muscle spasms in his limbs that we think are attributed to the oxycontin. It makes for a very unrestful sleep since he jerks all the time. They look like tiny little seizures that he's having. So we are trying a different combination of medications that hopefully stop these spasms and allows him to be a little more coherent as well. When he's taking the oxy, I honestly don't know what he's talking about half the time.

Today was the last radiation treatment for Cleve. It has been exhausting for him and he has some slight radiation burns to his skin, just redness and some grey encircling his wound. On May 23, we will begin the Ipilumimab infusion. It is a once weekly infusion for three to four weeks. As I said before, we are able to have the treatment done here in town which is really wonderful. I did forget to mention that May 4th marked the one year anniversary of the recurrence being diagnosed. One year survival for recurrent metastatic melanoma is pretty darn good. We look forward to seeing what kind of time we can get out of our next treatments.

Upcoming plans

Hey folks, just checking in again. Cleve is receiving two units of blood as we speak, hopefully this will give him a little boost for extra healing. While our medical oncologist from Houston, Dr. Hwu is vacationing she asked Cleve to email her weekly so she can keep an eye on him. We just heard from her a few days ago and her plan for us is to finish radiation this week, taper down on his steroids and then she would like us to start Ipilumimab. Ipi is an intravenous medication recently approved for the treatment of melanoma that is used to help activate the immune system in order to fight the cancer. Im not quite sure of the protocol at this point, but I think it can be repeated a few times if it seems to be working. The best part is that we can do this at home with our oncologist here. Finally, a traveling break, whew! This will probably make Cleve tired, colitis is also a side effect so its good Cleve is replenishing some of his blood supply. We will start this probably next week as soon as radiation is over with.

pic

Just wanted to share a pic of what the wound looks like now. A dramatic difference from the previous pics.

Update...

Hey folks, I thought I would give a quick update. I know so many of you have been wondering how Cleve is doing, calling, and texting. Thank you all so much for your concern. The day we started radiation, a week ago, the wound began "leaking" in the shower pretty heavily. We let it run its course and went to visit Cleve's boss, David, at the office before heading off to radiation. The idea was to simply drain the sight as best we could using a small gauge needle. When it was inserted however, the skin broke apart a bit from being so necrotic and we had made quite a mess. Im pretty sure we owe David a new pair of shoes and pants. We got it all drained and then packed with gauze and bandages and headed over to Dubs cancer center for radiation. From that point on we have been dealing with it bleeding pretty constantly, changing bandages every three hours. So, in the previous pictures, the reddest part of the lump is now gone and remains an open wound. It was a very long weekend of keeping up with the bleeding, but early this week, Cleve went to visit his friend who is the director of the wound clinic. Our friend, Dr. Holderman has since fixed Cleve all up. Dr. Holderman's staff was able to deposit a gel at the bottom of the wound to keep it moist to try and achieve some healing, and then lightly packed it. Tuesday, Cleve also received two units of blood to replenish what he had lost. This benefits both the healing of the wound and the effectiveness of the radiation. At todays visit, Dr. Holderman (Jim), said it looks like we are starting to get some healing and also the amount of bleeding has decreased dramatically. We still change his dressings about every three hours, but the fluid that is collecting is a clear serous fluid rather than blood, which is great. Cleve also had some labs done today to check his blood count, if he is still anemic, he will receive more blood to boost his levels. Cleve is still being a good patient and taking his pain medication to stay ahead of it. And the love, help and support has been amazing. Thank you to all. Hopefully this helps to put your minds at ease. We are just chugging away here and doing well.