For those that have been asking. William's obituary can be located on the Legacy.com website.

http://www.legacy.com/obituaries/sacbee/obituary.aspx?pid=157688382

Loss for Words

I have Attempted to update the blog more times than I care to count. Each time I sit down and get ready to type, my mind goes blank and the tears start flowing.  What do i say? What do I type? Where do I begin and at what point to I stop?

I guess a good starting point would be to say thank you to everyone! Thank you for the love and the donations that made William's funeral and memorial services possible, the hugs, the phone calls, the cards, the flowers, the food, the emails, the friendship and the prayers.

A special thank you to all of the Pasadena Firefighters. Your love for our son is humbling and inspiring. Thank you for your friendship and continueing kind words.  We also wish to express our enternal gratitude to Don Juvet for not only making William's casket, but devoting so much time, energy, love, and prayer towards our little family.

Its been 25 days since William passed. 25 days since I held his had and kissed his soft little face. I have spend the past 25 days grieving and mourning the physical loss of my lil' man.  I still wake up in the morning expecting to hear the sound of IV pumps and/or cartoons. I still wake up in the middle of the night to check on him. I still find myself walking into his room to see why the house is so quiet. The reality of his absence never gets easier.

For the past two years William and I were each others constant shadow. We were hardly ever apart. We were each other's side kicks, entertainment, singing buddies, encouragement and motivators. He was my navigator on road trips, my helper in the kitchen, my voice of reasoning and often my soothing reality. William was more than just my son, he was purpose, my reason, my explanation, and my future. Now, he is my angel.

I miss my son tremendously. I miss and mourn the loss of his laughter and the giggles that came from deep inside his belly. I miss his wisdom and insight that often surprised and humbled me. I miss the feel of his little arms wrapped tightly around me. I can list a million things that I miss, and I would probably still miss a thousand special things - the bottom line is that I miss my son more than words can ever come close to explaining.

To honor William's memory I have decided to to turn Sir.WilliamsCross into a foundation. I will post more information about this later. Also, on September 29th, the 1 year birthday of William's Bone marrow Transplant,  I will be running my first 1/2 marathon. 

For those that were not able to attend William's service, please click on the link below to view the memorial video.

https://dl.dropbox.com/u/81965543/William%20Klopper%20Memorial%20Service%20Mp4.mp4

William's Eulogy from Loiss and Randell

"Most of us understand hope as wishful thinking, as in "I hope something will happen." This is not what the Bible means by hope. The biblical definition of hope is "confident expectation." Hope is a firm assurance regarding things that are unclear and unknown. Hope is a fundamental component of llife.


Along with faith and love, hope is an enduring virtue of the Christian life. Hope produces joy and peace.
Through the entire journey with William there was never an absence of Hope. Even now, at the end of William's journey our hope is still present. Our hope now is that everyone will remember and honor the memory of our son by finding joy and passion in your lives. Remember and honor our son by facing your troubles and your burdens but don’t allow them to determine your worth or your potential. Honor our son by approaching everything with a smile compassion and kindness.


Our hope is that everyone affected by William’s passing finds their hearts at peace. We openly express our sadness and heartache about William passing at such a young age, and it has been excruciating to experience his physical absence. But it is important for everyone to know that we have an absolute calming peace in our hearts. We are at peace with the young man our son became, the angel he is now, and the hero he will forever be. We are at peace because there is a beautiful knowledge that he is in heaven. We hope that you can all share our peace. We hope you will honor our son. We hope you will celebrate our son's short but very full, memorable, charismatic and impactful life"




Keep on Keepin' on.
Loiss and Randell.
William's proud Mommy and Daddy.

Funeral

I've received some communication in regards to people being concerned about attending Williams funeral.....please don't feel restricted from attending! Everyone is welcome!

Also, our preferred florist is Judy at Flowers On Main Street +1 (530) 622-1121

Funeral arrangements for William Nicholas Klopper (06/22/02 - 05/03/12)
Everyone is invited. Please notify the school and the Scouts - we arranged the funeral to be on Saturday May 12 so all William's friends can make it.

Funeral is at at 12 noon on May 12, 2012 at :
Green Valley Community Church
3500 Missouri Flat Road
Placerville, CA 95667
Phone: 530-622-3231
Fax: 530-622-5706

To help with catering please notify me if you are attending. Respond to SallyKlopper@aol.com

Donations can be sent to:
R Stowe
6120 Union Mine Rd
El Dorado
CA 95623

Flowers can be sent to:
Green Valley Mortuary
3004 Alexandrite Road
Rescue, CA 95672
Tel: (530) 677-7171
Fax: (530) 677-5979

William went to Heaven this morning around 8:30

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.

what is normal..?

To some extend we have settled into a routine and Lois and I share caregiving responsibilities. Now that we have figured out how and when to give pain meds we have had a very good 24 hour period so far; Meaning it was good for Will and for us. I want to run away when he is folding double with pain and I cannot make it stop. At least he lets me rub his back when he is in pain – it sooths both of us. Not having all the hospice support agreements in place is also a source of frustration for me. We are in need of strong leadership to guide us in unity in doing the right thing for Will. Our instincts prompt us to do one thing and yet at this time we are supposed to ignore those instincts. Will is also frustrated (Bored? Scared? Angry?) and is more often moody and rude. In my heart is huge conflict about how to handle him. By nature he is a funny, kind and smart boy, and I am thinking his mood swings must be because of the pain and the different narcotics. Lois reminded me of Dr Andersen’s words two weeks ago ‘ we should continue as normal and discipline him if necessary’. Really? I mean REALLY? Have the ones that have made these rules been in a situation like this? It is getting harder and harder to remind him of his manners – it is easier on my own emotions to remain kind and patient; Just the thought of making him cry close up my throat. Making him cry is not the kind of memory I want for myself! Is it really important to expect him (and hence us) to behave normal when nothing else is normal?


I know there are folks reading this blog who have walked a similar road in the past. Let’s hear it first hand from you, please. And I can reasonably understand that there are no one solution or way to react, but please let me hear from you.

Grandma Sally

Mommas thoughts

As you know, my mom has been updating the blog on my behalf. I have asked her to do so because the storm of emotions that I face when I attempt to type everything out is just too much. Updating the blog means reliving each experience, each emotion, every fear and every nightmare.....something I don't particularly have the strength for right now.

I have received some emails asking exactly what was going on. From what I can gather, some of you are confused about the events from the past two weeks. Here is a brief synopsis.

William was cancer free for 4 months. Scans in January showed one small new active tumor in abdominal. Radiation was scheduled to treat new cancer activity and permanently kill old calcified tumors. Two weeks ago William started loosing weight and complaining of abdominal pain. CT revealed that the cancer returned and it came back in the form of 12+ new tumors (all attached to vital organs) the tumor seen in January had grown 300%. William's body is too weak and fragile to do any sort of aggressive chemo. Please read my mom's blog entry to find out more about what we are doing and why http://www.williamkloppersjourney.com/2012/03/meeting-with-panel-of-doctors-is-never.html

Right now our biggest frustration is batteling Williams's health insurance to pay for the items he needs while on hospice. Secondly, we don't have a hospice facility that will except William- most say he is either too young for them, or they won't accept his insurance. We have faith that Dr Andersen and his staff will come to a workable arrangement with local institutions. We will keep you informed.

Road trip...

It is Friday march 16th and I am in the car with Lois and William. We are on our way to El Dorado. I am joining them for a few weeks and will then go back to Indiana for a couple of weeks. My main short term objective is to make sure that we effectively settle in with Hospice support which Dr Andersen and his staff is now coordinating. William will need IV’s and we need to get the process worked out smoothly at home.


Lois’ girlfriends have once again showed their love and commitment and have during the last few days cleaned the house. They offered to go buy groceries, send gas cards, and more, but I stopped them. They have done enough for now, and all we need from them now is a girls’ night out. Thank you - Erin, Hope, Emily, Scotty and Scott for supporting my children. And a special thank you to Noni and Ron for taking care of Heaven and Halo. We will pass it forward. We love you all.

William has fallen asleep in the back of the car listening to Augustana, Maroon Five and a few others of his favorite musicians. I watch my daughter as she drives and speaks. She looks very different from yesterday – her hair is gone! But let me start at the beginning. Yesterday morning they went to the Pasadena Police Department’s helicopter field where Will and Randell got into the helicopter and went for a flight over LA for more than an hour. The boys could not be happier when they got back. The Chief of Police was there and handed William his cap he received when he was first made Chief of Pasadena’s Police Department. And then the Air Patrol Captain took Will on a tour of the hanger and gave Will a PPD t-shirt and baseball cap. Thank you PPD for helping my kids making memories – you are awesome.

Lois is switching the music to her favorites : Johnny Clegg (sweet South African rythm) Wilson Phillips and a few jazz songs. William wakes up and asks us to change it to his songs. Lois hands him the remote to the iPod and he is a happy boy; Lincoln Brewster is entertaining us loud. Very loud. ‘Today is the day You have made, and I will rejoice and be glad in it…where You lead I will follow…today is the day’. And we all sing along for a while.

… back to the story. After the great time with PPD they went to City of Hope (COH) and there was a stage set up. No silly, not for the band. It is St Baldrick’s day and the stage is for the folks getting their heads shaved. Dr Andersen was there and his hair was bleached! Boy he looked funny. But to raise funds he accepted the bets from colleagues and nursing staff. First the bleach, then the W for William cut into his hair, then color it pink and last: shave it short. We adore this man with the big heart and great sense of humor. We have more than one year extra with William because of this man. Please God continue to bless him with wisdom to serve the Pediatric Oncology department at COH the best he can.

So Lois got in the chair on the stage and Will got to shave his mom’s head. After shaving heads of 12 fire fighters two days prior, he is the pro. She was nervous at first and then, all of a sudden remembering why she was doing it, very tearful. Jacques and I are so proud of our daughter; she is a strong woman and a good mother.

I asked her how it feels with no hair. “It’s like having Velcro on your head – when I put on my t-shirt this morning it got stuck a little. And my head was cold last night – I had to wear Will’s beanie. And I am getting a lot of stares”

William said earlier that his mom looks like a dude with boobs. She said that it was not a very nice thing to say. His comeback was: I’m sorry. I meant you look like a dude with fat nipples. 

Four hours gone. Four more to go before we get home. We talk about Lois and Randell getting married within the next few weeks. We talk about movies, about buying groceries tomorrow and having a photographer over tomorrow late afternoon. We stop for a bathroom break and watch Will drink his medication - lately he is hiding his pills but says that he has taken it. More music, more sing-alongs. Why does everything feel so normal and right when actually my heart is broken?

Grandma Sally.

It is mid-afternoon on Tuesday and Jacques and I are on our way to Disney. The kids are in their own car behind us. We have just left City of Hope. Again. For the second time in 24 hours. Yesterday around 5pm we all got to go ‘home’ to Ronald McDonald Home (RMH) in Pasadena. William was weaned off all the IVs and got patches and oral meds for pain. When we got to RMH a small crowd and a surprise party was waiting for us. There was a Magician, friends, ‘family’ from RMH and most of the guys from Pasadena Fire Department. About 40 people. They have all pulled together to pay and put together this event for William. What a great time we have had - the magician had us rolling with laughter and I enjoyed watching Will’s face. He did not have a lot of energy and yet could muster enough together to laugh and enjoy the moment. After the show Will had the honor to shave the heads of 12 of the Fire Men. It was funny, it was awesome, it was heartbreaking.

 We all know why they were doing it and yet none of that was talked about; we watched William as Slim’s apprentice nervously shaving the first two heads and after that he was the pro. He even laughed at his own handy-work when a few of the heads came out really unique. There was a back-up team that fixed the funny hairstyles. It was around 8pm when Will came to sit next to me on the couch and when I asked he admitted he had pain. He said it was about a 6 (on the kids scale of pain) and it was everywhere. We gave him his blanky and a Dilaudid. He was asleep with in 1 minute. It actual scared me how quickly he went to sleep and I kept on watching his breathing. He had a fever of 100 by the time Jacques and I went back to our hotel.

 The next morning Lois woke us up early to say they are taking Will to ER. William had a night of hell; a lot of pain, crying, panic attacks and muscle spasms. By the time Grandpa and Grandma got to ER the nurses have figured it out; it was a combination of pneumonia in both lungs and withdrawal symptoms from the strong narcotics. A quick IV, stronger patches a couple of hours of monitoring, more antibiotics and a few Kodak moments with the clinic staff, and we are on our way again. As the day was almost over we have missed the Character Breakfast at Disney but we were ready for the rest of the day as VIP visitors.

On our way out of the hospital we ran into Dr Anderson. He reminded us that we always have an open door to him and COH facilities no matter what. He understood that we want to go home, but also said that if we change our minds that William will have access to the best medical and psychological treatment.

Thank you to all the amazing people at COH that have touched William’s live.

Tuesday afternoon – so we made it to Disney after all. We were all tired. Will is in a wheel chair but we had to walk. Knowing that this was for William we kept on reminding each other to Cowboy-up. And after the first ride it was easier – the adrenaline got me going. After four rides we were all done. It was 6pm and we had to go take a nap before the 8pm Character dinner at Goofy’s.

Tuesday evening – Goofy’s was sooo much fun. Lot of attention, photographs, comfort food and laughter.

The amazing men at Pasadena Fire Department (PFD) have made this all possible; The access to the park, shuttle tickets, hotel, and dinner. The whole caboodle. Or rather the whole VIP exclusive treatment. You guys rock. Thank you so very very much for making it possible for us to make memories.

Fast forward to Wednesday – Jacques and I decided to give the kids some space. They went back to the park late morning and spent most of the day there. At 6pm we picked them up to go to the ice hockey game, Anaheim Ducks against the Red Wings (Detroit). William’s eyes were shining and he was happy to fill us in about all the rides they did but the 12 minute drive to the arena was not enough time for them to tell us everything they have done. We had a private hospitality suite with food and drinks, all paid for – again arranged by the PFD. Wow! They are awesome! William spent time with Ducks’ #8 player and received a signed shirt and a hockey stick. About 90 minutes after we got there some of the PFD guys and their better-halves arrived. It was touching to see their interaction with William – there was a special bond. About 45 minutes later Will told his Mom he had pain. It was time to go back to the Hotel.

Tomorrow the kids are doing a helicopter trip in the morning and later the day Dr Andersen’s and Lois’ hair will be buzzed. Yip – it is St Baldrick’s day. I will send you photographs, but I will not be there.

Grandma Sally.

Travel bugs....Within 24-hours after landing at LAX last week I had a runny nose that I nursed with Zycam and Sambucal. By Friday afternoon I felt really groggy and was not allowed to see William. While I was at the hotel doing laundry Will went to the fishpond with his parents and Grandpa. Randell carved William’s name in the Bamboo. And Grandpa was trying to catch the Koi with his hands. The turtles were a lot easier to handle. After an hour of sunshine and 85degree weather Will was energized and the family enjoyed a movie together before bed time.


It is Sunday, the Zycam did its job, and Jacques and I are back with William. The time with him is so bitter-sweet. I drink in every moment. When cuddling next to him on his hospital bed I try to imprint in my mind the feel of his hand in mine. I kiss and smell his head and cannot stop my tears. Today William sleeps a lot. When he is awake it is for 15-20 minutes at a time. It is the combination of the Fentanyl patch and Dilaudid pill he is on – both pain killers and narcotics. The coughing is also getting worse and every now and then Will wakes up with blood in his mouth – his platelets are very low and his throat is bleeding.

We don’t really try to control any situation and plans are discarded easily in exchange for something that Will wants to do. This afternoon while grandpa was cuddling with him on the hospital bed William made a remark about the hair growing in Grandpa’s ears. Grandpa blamed the hectic business travel schedule for falling behind with his grooming and told Will that if it bugs him so much he must pull the hair. Lois passed Will the tweezers and the grooming started.
It is good to hear them all laugh.

We still plan on checking out of hospital tomorrow. Just hope that the medical staff agrees that Will is okay to go without IV.

Happy week to all of you. Grandma Sally.

Will grooming Grandpa

Bashing furniture and stomping on the floor

Update by Grandma. March 8 2012 9am. I stayed with Will in hospital last night giving Lois and Randell a well-deserved break. It was so much fun being in a bed next to Will. We played IPod games, Xbox games, flew little airplanes and catching up on personal news and watched a movie on TV. And giggling about a few ‘do you remember when’ stories from the past. Grandpa Jacques is traveling in from Arkansas today - for the first time since Washington DC (Will’s Make a Wish Trip) we will all be together again; making memories.


Life should continue as if normal. That is what the Dr and staff said in the meeting yesterday. Keep up the discipline. So this morning when Mike, the nurse, brought medicine to be taken by mouth Will refused to take it. At first I just sat there watching Mike’s face, and I could see he is going to back off. I took a deep breath and told William in the sternest voice I could make up – you will take this medicine- it is not negotiable. And so a 2 minute long argument started and at the end Will took the medicine and pulled his worst ‘this taste bad’ face. I told him to fix his face and he did. Normal feels right.

Will is in constant pain and is receiving Fentanyl (a narcotic similar to morphine with fewer side effects). One of our daily objectives is to strike a balance between managing the pain and him being alert enough to be sociable. He also has a button that he can press to control his own medication when pain gets worse. Starting today he will wear a Fentanyl patch and the IV will be turned down slowly and eventually unhooked. We are preparing Will to be mobile and free from all the IVs for when we go to Disney and the long travel back home next week. Back home we will start the necessary IVs again with the help of Hospice.

I am learning to play Lego: Indiana Jones, original adventures on Xbox. Ever played it? Quite an aggressive game – the little character have to destroy a lot of things to get points. Kinda what I feel like doing right now; bashing furniture and stomping on the floor.

The meeting with a panel of Doctors is never to give you good news..

Hi all William’s friends, supporters and family. This is Grandma Sally. I arrived in LA today(March 7), and after our meeting with the doctor and his support staff Lois asked me to please update the blog and post on Facebook. Posting today and all the days that follow will be my responsibility. I will give you the updates as it is.

About the meeting this afternoon: Randell, Lois, myself and Jacques (on the phone from Arkansas ) met with Dr Andersen and discussed Williams prognosis. We looked at Will’s scans from a month ago and we looked at the scans from Monday. There are new tumors everywhere in his stomach cavity, liver, above the adrenal glands, lungs, spleen bladder, etc. And we could see the impacted lymph nodes on the scans too. One small tumor in the lumbar area grew 300% in 4 weeks. The tumor that is causing the most concern is next to/attached to the bladder. It is close to a lot of nerves and is the cause of discomfort; painful bladder spasms are chronic. We discussed all treatment options, and I will give the man his due, he did his homework and called on his mentors and experts and laid it all out on the table for us. Treatment choices are limited because of Will’s low platelet count. He also has a nasty cough with fluids in the lungs with low grade fever. Surgery is not an option, regular chemo protocol is not an option and radiation is a small maybe.

We met Dr Andersen a year ago after Loiss and Jacques went on a road trip to get 3 second opinions. Through the grace of God, this man has used his medical skills and knowledge to give us one extra year with William. In today’s meeting he reminded us that the treatment option we now decide on is to improve quality of life. The medicine’s purpose now is to make him comfortable and if possible slowdown the growth of the tumors. He suggested a low dosage of chemo to slow down the tumor growth and anti-angiogenesis that prevents the flow of blood to the tumors. Neither will impact the platelets negatively. Both these medications and other treatments can be done in the comfort of the Stowe-Klopper family’s home. Dr Andersen said that things will get a bit better before it gets real bad.

The City of Hope staff already reached out to Snowline Hospice in Diamond Springs close to home. We should have a conference call with them soon. In the meantime the process has started to get Insurance approvals.

Focus now is to get Will well enough to do a few things that are on his bucket list. The first thing is to go to Disney World next week. And we plan to then drive back home to El Dorado before the week is out.

It was a very emotional day. A day full of gut wrenching, life changing news. It’s hard not to get overwhelmed.

One day at a time.

It's just a bad dream, this can't really be happening.

I don't have the words to describe what is going on....the scan results are horrible. Doctors are talking about hospice care......

There are a lot of new tumors.


We need a lot of prayers for a miracle.

Is it over yet?

Last week William started complaining about tummy pains. At first we though the pain was associated to his new found intolerance to lactose, so I changed our diet. Unfortunately, by Thursday morning William's pain had gotten worse, his appetite had disappeared and he lost approximately 3 pounds (he was at 53 pounds the previous week)

On Thursday night William was admitted into the Helford Hospital at City of Hope. On Friday morning Randell drove down to be with us, and on Friday afternoon William had laparoscopic endoscopy (at both ends). The endoscopy revealed that William had a bowl obstruction. The doctor cleared the obstruction; we were also told that William appeared to have a lower bowl paralysis. Randell and I were told that although the new diagnosis could be serious, it was nothing overly concerning, and the doctor was confident that we would be able to treat and heal William…..  Unfortunately, it would appear that William’s little body is hiding something a little more difficult to diagnose…. Long, long, long story short – the bowl obstruction has been cleared and treated however the pain in William's tummy is getting worse. Even with a "happy button" to give him the needed fentanyl as needed for pain, and a constant IV infusion of pain medication, William's pain is barely being managed. The doctors ordered some additional scans this afternoon - the fear is that there is a new tumor that has sneaked up on us and is causing some serious discomfort....


I will post an update once the scan results are made available and discussed.

Monday's are the worst

This morning William started his first phase of Radiation, measurements and casting. I wish I could say the process for simple, easy and quick -IT WAS NOT.

William dislikes being held down, pinned down, strapped down, and/or or anything else that requires him loose control over his body's movements. Unfortunately, part of this morning process required the use of an immobilization device to create an abdominal mold. Being strapped down and having his arms pinned above his head resulted in a panic attack. I got mad at every one in the room because they did not listen to my warning about this happening, the nurse got mad at me because I acted like a momma Bear protecting her scared cub........needless to say, it was not a pleasant morning.

We will be returning to the radiation oncology clinic tomorrow for simulation. This time, they promise to be nicer, and have some IV relaxers available.

The good news is that William will not get the Radiation tattoos :) Insurance refused to cover the cost :( William is happy about not having the tattoo, I am not so happy about insurance once again being so (insert your own word of choice) so, instead of tattoos, William will get marked by stickers and markers every day.

Keep on keepin' on.

First off, I want to thank every one that has been calling and sending cards. William is an extremely social child, and it does him a lot of good to know that he has not been forgotten by all of his friends an scout buddies.

Things here at the Ronald McDonald House have been going as expected. We spend most of our non-treatment days doing school work, catching up on some much needed laughter and smiles, and occasionally going a an adventure (museums, parks etc.)

William loves that we are here at the Ronald McDonald House. He loves knowing that when we are here, he will never be bored. There are always other kids for him to play with.  I love knowing that he is getting the social stimulation that he needs.


April 1st, William's 2year diagnosis anniversary is approaching fast! This year we will be spending the day with our Ronald McDonald Families at LA Expo for the Annual Ronald McDonald House Walk for Kids. The Walk for Kids™ is a 5K event to raise funds and awareness for the services and programs provided by Ronald McDonald House Charities of Southern California. There are two teams that are walking in honor of William. ;)  The day promises to be a lot of fun and all proceeds go towards the Ronald McDonald House Charities. For more information, please feel free to to go to

www.walkforkid.orgWalk for Kids

I encourage all of William's friends and supporters to either come out and join us, or please support the cause.


Another important date to remember will be March 12th. Along with a group of friends (SacTown Baldies) I will be shaving my head! Yes, that is correct - I will voluntarily be shaving off all of my hair. The annual St. Baldricks event is held at various locations across the nation. The event is used to raise funds and awareness about Childhood Cancer. As I mentioned, I will be participating at the event inDowntown Sacramento at DeVeers Pub. As a precautionary Plan B, if we are not able to travel home for the event on March 12th, I will then be participating in the St. Baldricks event scheduled for March 17th at LAFD Station 89. Eitherway, my head will be shaved ;) William is eager and delighted at the prospect of his Momma having no hair. He is extremely happy about the fact that I told him that he will have the honors of shaving my head.


Tomorrow is a big day - William will finally be doing his body cast and tattoo markings for the much anticipated radiation treatments. Radiation has been postponed so many times--I am eager to get this started. We were originally supposed to start at the end of December, two months later we are finally doing it. The new tumor on William's intestine is causing William a lot of discomfort ---- Hopefully the pain will start getting better as the tumor dies off from radiation.


The bigget concerns with Radiation is the fact that William's body is not 100% ready to take the hit. Ideally, the doctors would have prefered to have William's hemoglobin above 10 and his platelets above 50. As of Friday, William's hemoglobin is at 10.8 and his platelets were below 20. William's body will take a huge hit with the upcoming treatment, and I have been told to prepare myself for the most severe kind of side effects and hospitalizations.


Fortunately, William still has some Stem Cells left over from his bone marrow transplant. Therefore, after his radiation treatmet has been completed, William will be getting something called a Stem Cell Rescue . The Stem Cell Rescue will assist William's body with developing the much needed cells to develop platelets, white blood cells, and hemoglobin.

I will update again later this week. Until then, this is Williams's journey. We will keep on keepin' on.

Movin' forward

I promise to do a more thorough update later this weekend, I just wanted to do a quick posting to let everyone know that William is doing okay. His chest infection seems to be healing, and apart from the occasional pain at the tumor site (intestinal), he has no complaints. Radiation was postponed due to the chest infection, but it is back on again. Monday morning William will start with his radiation measurements, marking and simulation. A huge thak you to the fire fighters and paramedics at 31 for continuing to keep William's spirits high. I will post photos of William's adventures with them at a later time. :) Also, I want to thank Linda and her nephew Tony for taking a special interest in William and spoiling him with your kindness and gifts. Keep on keepin' on

Thursday Update

This will be real quick- William is still in isolation. We were hopeful for a possible discharge today, unfortunately William has spiked a couple a really high fevers so I am anticipating a min. Of 2 more nights here. Doctors have ordered daily chest xrays - fear of pneumonia. Nasal Flush test results for several common bacterias have all come back negative, more results (hopefully all negative) are anticipated today. Keep on keepin'on.

Happy Valentines Day

The City of Hope Hospital is not exactly where we thought we would be spending today, but we are. I keep reminding myself that the location is meaningless, it's the people we are with and the memories we make that are important (but I still feel a little melancholy about the situation).

William is doing so much better today. His coughing and wheezing fits have been drastically reduced (thanks to some great oral steroids and the oxygen face tent) William 's trademark spunky and feisty personality is slowly returning and his fever is finally gone too. As of earlier this afternoon William's blood pressure, heart rate, and oxygen saturation levels are all within normal levels -yippee- All-in-all he is once again surprising and humbling me with his determination and courage .

I am not yet certain about the amount of time we will be spending in the hospital, but something tells me that we will be here for 5-ish days (sigh .....)

Thanks for checking in on William :) I will update the blog again tomorrow.

This is William's journey. We will keep on keepin' with God in our hearts and courage in our souls.

Happy Valentines Day

Expecting the unexpected

Today is not the day we anticipated - instead of radiation prep- William is in patient and being treated for possible whopping cough. He initially got admitted due to shortness of breath and low grade fever but since arriving he has been battling high fevers , high blood pressure , inconsistent oxygen saturations, extremely high heart rate and lots of chest pain.

We would really appreciate your thoughts and prayers!

I will update blog again tomorrow

This is Williams's journey and we will keep on keepin' on with God in our hearts and courage in our souls

Weekend Update

WOW what a weekend! William has been surrounded by so much love, laughter, and pure joy!

Thanks to several different organizations, The Pasadena Ronald McDonald House has been overflowing with fun activities and yummy buffet-style meals all weekend.

As you already know, William spent Friday with some of the local firefighters. Well, last night, a different group of fire fighters showed up and took William out for dessert :) As you can imagine, William is thriving with all of the "mucho guy" attention and is extremely proud of the fact that he has now not only been on the Fire Engine but also the Fire Truck! Kevin, a Captain from the Fire department is a cancer survivor and his treatment consisted of 35 rounds of radiation and the marking tattoos. Upon hearing about William's upcoming radiation, William's fear of needles and William's anxiety associated with the tattoo process, Kevin had an extremely comforting conversation with William. Kevin's words of encouragement and personal experience soothed a lot of William's fears and even somehow managed to elicit some newfound excitement about the marking tattoos. ;) Thank you Kevin - Your words were a much needed balm for William's raw fears.


To the entire crew with Engine and Truck 31 - You are truly amazing - Your interest in William has given him the jolt of energy needed to face his upcoming treatment with determination, courage and a big smile - THANK YOU!

This is William's journey, we will keep on keepin' on with God in our hearts and courage in our souls.

Tattoos, Doctors, Firefighters, and Laughter

Yesterday, William and I met with our medical team. The conversation covered a lot of information, and for obvious reasons I am not going to cover the entire conversation verbatim; However, if you have any questions, feel free to shoot me an email and I shall respond accordingly. Here is a quick synopsis - William will not have surgery to remove the tumor in the abdomen area. Instead, radiation will be used as a first line defense to combat and eliminate the tumor.
On Monday, William and I will be meeting with the radiation team to start the measurement, marking, and simulation process. Simulation is the first step in William's radiation treatment and it is the method by which all parameters are set up and used for each and every one of his treatments. From what I understand, the day will be spent taking films and measurements and marking William's body with tattoos (Yes, I said tattoos). The actual radiation itself will start the following week on the 20th. The markings (AKA Tattoos) that William will be getting are really small and are used to mark the corners of the treatment areas. Due to William's immense love of needles (and I would assume tattoo pens/machines too)  I have asked that they knock him out for the "marking" phase. The markings are essentially a guide to help the technicians line up the radiation treatment fields the same way each time.


We have been at the Pasadena Ronald McDonald House for almost a week now and as always we are enjoying life and making happy memories.
Even though we still have a lot of medical restrictions (diet, exercise, etc.) William and I have taking full advantage of the amazing weather and spending as much time outside of the Pasadena Ronald McDonald House as possible. Below are some of the photos -

Today, the adventure seeking, kind hearted firefighters of the Pasadena Fire Station 31 took William (and I) on an amazing adventure. William, named "Big Will" for the day due to his will power, had the opportunity to wear some the items associated with the uniform, demonstrate and operate a hose (with the proper hand signs), play football with the guys on the infamous Rose Bowl field (and partake in some other top secret cool activities on the field)We even went on two emergency calls and then got spoiled with a delicious Tri Tip BBQ lunch, and Ice Cream from Baskin Robbins. I want to give a special thanks to Sarge, Pipes, Cuz'n Larry, Zee, Tony and Ava for the extreme kindness, delicious food, customized T-shirt and hat, happy memories, and lots of laughter. Thank you for taking a special interest in my Big Will and allowing him the opportunity to share your day with you.
Here are some of the photos from today….Pictures say more than may words can.








For those that have been asking, YES the donations made on this site and on SirWilliamsCross.org do go towards William and the expenses related to his care, our travel, and our accomodation in Pasadena.  I want to give a special THANK YOU to Linda in Hong Kong. Your kindness had me in tears of gratitude. I gave your nephew a big hug and asked him to please express our sincere appreciation to you.

This is William's journey. We will keep on, Keepin on.