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.