Terrible, terrible truth.

From Mommy, Loiss.


Hi all. I want to thank everyone for the love, prayers, supportive words, and loving thoughts.

As my mom mentioned in her post on Friday, we are inpatient at City of Hope.

I don't have any creative, frilly, beautiful words to describe or poeticly phase what it is that we are all going through. All I can say is that my baby is nearing the end, and that my heart hurts to the extreme.

Williams little body is so weak, frail and heart breaking. BUT his heart and spirit stay true to the warrior he is. The tumors are starving his body, they are causing him pain, and they have hijacked his organs, but William keeps on keepin' on. Even through the pain, the heartache, the fear, the reality I still see the strong, silly, fun loving, caring and kind nature of Sir. William

William's comfort is the number 1 concern for everything and everyone. He is getting a continuous IV cocktail of pain medication and Ativan to help calm and relax him.

Randell and I have bridged the conversation regarding death and heaven. The first conversation was the hardest and William stated that he was not yet ready to talk about it. The next day he opened up a little more and he asked questions about heaven, why people died, who would be waiting for him, how he would talk/communicate with us when he wanted to ask us something. He asked if God gave the angels special powers and if so, if God would allow him to use his special powers to keep firefighters and pilots save. He cried a lot, we all cried a lot. He is scared about dying, we are doing everything we can to ease his fears and give him peace.

I want to give you all the facts and try not to throw any emotions in to the picture but after rewriting the first paragraph a few times I decided that you can have it all. Deal with it. You want to know what is going on – you will know it all.


My daughter’s instincts have been honed the last two years and I have trusted her when she said last week she was going to take Will back to COH. I don’t know what they would have done at home with the way Will’s pain has increasingly gone out of control. Dr Andersen and his team at COH took control immediately and Will was checked back into hospital. Scans showed that the cancer has multiplied beyond expectation and has invaded his heart and lungs too. His one kidney has completely shut down.

They had a terrible night last night with fevers coming and going and Will’s blood pressure going up, sore muscles and constant headache. Eventually the right sleeping and pain meds kicked in and he is comfortable now.

The feelings of hopelessness and anger are my constant companions. My heart and chest is physically aching with despair when I think about Lois, my baby girl, who is this amazing mother that has to go through this horrible heart ache that nothing in the world can help her to endure.

We get the same supportive emails and messages from most of you about prayers and love. Thank you –we appreciate the thoughts. I sometimes think I get it – God and love and cosmic presence. But right now I think it makes no sense. Do you think you can walk in Lois’ shoes for at least the last month and still say your usual prayers?

Randell is with his wife and son right now most probably feeling more hopeless than he ever felt in his life before. But Lois and Will love him and having him there makes them feel stronger and give them more courage to face the beast.

I will join them early next week and Jacques will follow a couple of days later. Dr Andersen thinks we have another few days before it is the end.

Grandma Sally

I spoke way too soon about the week being uneventful. We are going through a difficult period trying to keep William’s pain under control. And it is obvious how the pain is draining him from energy; physical as well as emotional. More and more he longs for consistency, predictability and sameness in his live. And the little control he has, he demands to keep. When William’s IV pole fell over and one of the hooks scratched his face, he allowed me to treat the scratch and wipe the tears, but when he afterwards sat down on the couch and started sobbing, the biggest sadness came over me. His thin shoulders stooped forward and he cried with despair. He later told his mom that grandma cried more about the scratch than him. Lately I cry easily. I thank God for good friends that lift us up; good people that we can call who will encourage us and remind us that we are so blessed to be with William and to focus on the precious moments.


Randell and Lois created an opportunity for a small group of very special friends and family to get together on Saturday while we still have William with us. She had a budget on a string, and with the help of family and friends the day was a success. And all the time while Lois is planning and coordinating, William was there, always getting the attention he needs. And yet his pain got out of control slowly but surely starting on Wednesday. The feeling of hopelessness comes over all of us when Will is folding double with pain. Jacques (Grandpa) walked off a few times to go cry where he would not upset William more. We took Will to ER on Wednesday evening. We have not found hospice pediatrics in home treatment yet and have to go to ER every time the required treatment exceeds our limits. And so on Friday evening, Lois and Randell took him back to ER. My sleep stayed away on Friday night and when they came back from hospital at 4am I had to go downstairs. The morphine he got at ER was four times the strength he had before. Exhausted we all went to bed just to wake up a few hours later to get ready for the day. We let Will sleep until 12pm and with the help of Grandpa got him dressed for the guests. William was a very special person on Saturday.

Randell’s sister Miranda came all the way from Mississippi to visit and she did not want to go back when she saw the bad shape William was in. She wanted to know from me what to do. Go home I said. Nobody knows how many more days we have with William, but when things get closer to the end we will call everyone. I am sitting on my flight home while writing this, going home with Jacques. I plan to spend some time with my husband and catch up with all our wonderful friends and neighbors, see the dentist and doctor, and get back to the office where the most amazing people have been supporting me in very unique ways the last month. We are so blessed by the kindness, the encouragement, the positive messages sent our way by all of you reading this blog. We will pass it forward.

My flight back to CA is booked or May 1. But I have learned that plans are just that – plans. What William needs, is really what is determining our next action. Lois and William left this morning for City of Hope where they will be for the rest of the week for treatment re-assessment and scans.


Grandma Sally.

Will has a goatee..

This week is reasonably un-eventful compared to last week. Wednesday around noon William went upstairs to my room but missed the first step and his chin hit the 3rd step. His tongue was involved in the accident too and within a minute after seeing the bloody mouth and split open chin Lois, William and I were in the car and off to ER. A couple of hours later we are back home and packed the car to go to COH in LA. We got to Pasadena around 9 but instead of Ronal MacDonald Home we went straight to the Fire Department (they are family by now) where a welcoming party fussed over the new scar and the five stitches. William also shared photographs of his Hermit crabs called ‘The Dudes’. The next day at COH was just routine labs and a doctor’s visit as we still don’t have a hospice arrangement that offers in-home care. The good thing is that since last week we now have an agreement to visit Marshall Hospital (10 miles from home) for medical care and get support from Partners in Care who provides the rest of the hospice support - just not medical service. Apart from scans in two weeks the trips to City of Hope might come to an end as we can now get medical treatment here close to home.


We now also have in place a POLST form - The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes. Lois has to carry this form with her at all times.

When showing this document to any doctor that treats William in the future they have to abide – no more arguments about blood transfusions or other treatments being in-appropriate at this stage.

There are subtle changes in William; lack of energy being the biggest change. He also tends to withdraw from us on occasion and I think it could be depression. He is easily frustrated with things and would then cry. However when he sees friends the old William is back. Now that spring break is over we can hook up again with old friends.

Thank you all for your ongoing emails, prayers, encouragement and love.

Photos : Will eating cookies and milk. Will has a split open chin.

Blogs

For those that are new to our blog, William has two blogs. To read the blog from William's first year of treatment, feel free to go to http://www.caringbridge.org/visit/williamklopper. Active entries on that blog ended on January 22nd 2011.

2 years

It's been 2 years since William got diagnosed. No, this is not a day that I am celebrating but it is a day that I will allways remember.

William is doing well. All things considered, he is doing really well. He still argues with his grandma. He still gets frustrated with me when we play Xbox together, he still loves being outside with the dogs and his BB Gun, he is still passionately obsessed with airplanes, and most importantly - he is still my funny, kind, caring, cuddle searching, mischief finding, curious Sir William.

Being home is wonderful, but equally challenging. We take our daily challenges as they present themselves and often wonder about our decisions and their future impact. I still believe that our decision to come home was the right decision, even if it does present some unexpected hurdles. As always, Randell has been loving, protective, realistic and soothing - somehow he instinctively knows when I am about to crack, and reminds me that William is still here, we still have the now, we can still hug him, love him, kiss him, and surround ourselves with his laughter. Its easy to get caught up in the anger and the questions that surround our current situation, but I decided to not be bitter or filled with anger. Yes, I hurt. Yes, I cry. Yes, I have moments of terror. But I refuse to contaminate my precious time left with William with negative emotions. If there is one thing I know for sure, it's that my child feeds off of the emotional action and reaction of others. When we are calm and at peace, he is too. When we are crying and angry, he becomes withdrawn and somber. When his pain flairs up it's easy panic and stress, but I have learned that soothing words, distractions, calm actions and slow/deliberate reactions result in William's calm and more cooperative behavior.

In reading William's blogs from the past 24 months I am reminded of so many memories, challenges we overcame and friends that we have made. If I knew 24 months ago what I know today, I would still make the same decisions! I don't regret any of them. My son fought a brave, brave battle and even though he will be in heaven soon, I know that he has lived more, accomplished more, touched more hearts, and shown more love than most adults ever do! When William's journey has come to an end, I ask that none of you ever say that he lost his battle with cancer, because he did not. He won his battle against cancer! He never allowed cancer to dictate his level of laughter, his passion for airplanes, his love in others, or his joy of life! William beat cancer because even after everything he has endured, he still loved and laughed unconditionally and without reserve. William beat cancer because even though the tumors may have claimed his body, the ugliness of cancer never tainted the essence of who he is and always will be.

Loiss

Just another day

All the Facebook messages and texts and emails have let us know that the lack of news from our side is frustrating and worrying to most of you. It is safe to say that William’s progress is good. He was in ER on Wednesday with pain out of control, but otherwise Lois manages to keep his pain under control 99% of the time. Her mother’s instinct is trained and very good and we have learned to trust her with decisions regarding William’s treatment. The narcotics have side effects; lack of appetite is just one. When William eats something there is a round of high-fives.


We mostly stay home and do what William wants to do. Most of our time together is in the family room around the fireplace, TV, Xbox and Wii. Lois does some reading after Will’s bedtime. That is my ‘me’ time too and once or twice we crossed paths after midnight on my way to the refrigerator. We don’t have any conversations anymore about what is happening here. Honestly – I have no desire to share my most sacred feelings. I don’t even ask questions anymore. We talk about the weather, what we can feed William next, has he taken all his pills, the dogs, news from family, who is going into town next, and tidbits from Facebook. We do what we have to do – we go with the program.

I am thankful for my job – for the best part of the day I can ‘escape’ into my job. It helps me keep some balance and also saves me from mental boredom. A couple of times while I was on conference calls or just doing admin Will would come and sit next to me and just lean on my shoulder – just sitting. Quiet.

It is Sunday afternoon and William and I are sitting in front of the fireplace watching cartoons and William is stacking all his coins in $10 heaps.

I don’t know what else to write and asked Sir William for news he wants to share with all of you. Well here we go: “ Tell them I won $15 on a lotto scratcher today…. Breakfast at the El Dorado Café was okay…mmmm…Grandma, I don’t know what else..”

His dad calls him to the workshop to help him finish building that new gun. The coins go unceremoniously back into the bag. He will start counting them again later tonight.