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.