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.

Much Anticipated Scan Results

On Tuesday,William had his PET scan, and the following day I received the official report via email from our amazing Dr. Clarke Anderson.

"HEAD AND NECK: There is normal distribution of uptake within the face, salivary glands, oral cavity and neck. .

CHEST: Previous non-FDG avid diffuse interstitial infiltrates have since cleared.. No abnormal chest sites of FDG uptake is seen. Normal myocardial uptake is seen

ABDOMEN AND PELVIS: Stable scattered rounded low-attenuation non-FDG avid liver defects remain present consistent with treated metastases. No new FDG avid lesions in the liver are seen. Again noted is moderate splenomegaly which is not hypermetabolic. There is a new rounded focus of FDG uptake SUV maximum = 5.0 localizing to the low left para-aortic retroperitoneum and correlating with developing 0.9 x 1.6 cm soft tissue mass adjacent to a posttreatment dystrophic calcification series 3/133, most consistent with new/recurrent metastatic tumor. There remains a coarse densely calcified residual rectovesical pouch deep pelvic mass that is non-FDG avid consistent with treated tumor series 3/157. However at the inferior most margin of the mass there is a subtle small focus of FDG uptake series 401/160 just cephalad to the normal bladder activity. It is not associated with a distinct mass on CT but subtle recurrent tumor here cannot be excluded. No other abnormal sites of increased FDG uptake in the abdomen or pelvis are seen.. Normal bowel activity is present

PROXIMAL THIGHS: No abnormal uptake identified. Bone marrow FDG uptake is homogeneous. REGISTRATION NONCONTRAST CT:[ Pertinent findings on the whole-body registration CT scans in addition to those outlined above include --right-sided central venous line in situ. [The visualized portions of the orbits are unremarkable in appearance. No enlarged nodes are seen within the face or neck. The visualized neck structures including the hyoid bone, cricoarytenoid, larynx, trachea, and thyroid gland are intact. No enlarged mediastinal or hilar nodes are identified. The heart and pericardium are unremarkable. No axillary adenopathy or chest wall lesions are identified. No pulmonary nodules or infiltrates are identified. No pleural effusions are seen. The gallbladder, pancreas, adrenals, and kidneys are intact . No retrocrural, or mesenteric adenopathy is seen. The stomach and bowel loops are grossly intact. No ascites is noted within the abdomen or pelvis.The bladder is unremarkable. No pelvic masses"

IN A NUT SHELL - ALL PREVIOUS CANCER/TUMOR IS STILL DEAD, BUT ONE SMALL NEW TUMOR HAS BEEN FOUND ON THE para-aortic retroperitoneum .

It's been more than 4 months since William had received any chemo, a blissful 120 days. In 3 we will once again travel down to the LA area and start the radiation process. As of right now it appears that the new tumor can and will be removed via surgery before they start radiation. I am anxiously waiting for the surgeon and radiologist to call me and discuss confirmed schedules and timelines.

Please keep praying for William's complete healing!


For the past few months I have been working on a design- a graphic that displays Williams journey through his treatments during the past 2years. What I came up with was a combination of a treble clef, celtic cross, fleur de lis, and childhood cancer awareness ribbon. I posted a rough draft of the graphic on FaceBook and then a wonderful family friend, Don Juvet, put his amazing talent as an artist to work and drew this for us. Because of Williams affectionate nickname of Sir William (a title bestowed on him by Don) the graphic has been named Sir Williams cross :)

Don has also created a website (www.sirwilliamscross.org.) Please visit the website to read about the meaning behind each item in the graphic and what they symbolize :) The website was created as an online store, and a secure hub for donations. The store will be selling amazing items (most of which are handmade) donated by our friends and church family. All of the funds will be put towards the expenses of Williams treatment and our continuous travel between Placerville and City of Hope Hospital (Los Angeles).

I want to thank everyone that has continued to send William words of encouragement and letters in the mail, receiving your correspondence does help with his healing process and certainly places a big smile on his face. Upon our return to the hospital, we will no longer be living in one of the on-site apartments instead, we will be moving back to the Ronald McDonald House in Pasadena. If you wish to send William future mail, cards, and/or words of encouragement, please do so by using the Pasadena Ronald McDonald house's in address (Located on the Contact Us Tab)

As always, this is Williams's journey and we will Keep on, keepin' on with God in our Hearts and courage in our souls.

There is no place like home.

William and I are going home for a week. YIPPEE ... Since treatment has been postponed, the doctor has been kind in allowing us to spend some much needed time with Randell ;)

Rumor has it that there will be a snow storm in the Sierra Mountains this weekend.. I am so excited. I cannot think of a better way to spend the weekend than to be surrounded by home cooked food,  the company of both my boys, playing in the snow, and as always - Making happy memories.

William is recovering well from the Sepsis. His body also seems to be having an easier time with the c-diff, unfortunately the combination of the c-diff and sepsis has caused some weight loss and I am once again struggling to add weight back to his little body - He is down to 51 pounds.

This is William's journey, and we will Keep on Keepin' on with God in our hearts and His courage in our souls.

Good times.

William was released from the hospital on Friday. I am happy to report that both of the gram positive bacteria he tested positive for appear to be responding well to the antibiotics treatment.

Dr. Anderson and I have discussed the decision to postpone scans and radiation. Sepsis (blood infection) tends to cause swollen lymph nodes and organs. If we were to proceed with scans this week the reading MD could see the swollen nodes and/organs as being cancer related. Also, the reading MD could overlook something thinking it was related to sepsis when in fact it could be related to the cancer. So, with a hard lump in my throat I have agreed to wait 2-3 weeks before proceeding with the scans.

As you know, when it comes to William`s future treatment, I am a nervous and anxious momma. Postponing scans and radiation has been a hard reality for me to accept. Refusing to lounge around the Hope Village and dwell on the “what ifs, and then what’s?” I decided to occupy our time – and my mind-with some adventure. William and I spend Saturday driving up Pacific Coast Highway spotting possible hiking spots and familiarizing ourselves with some of the best seafood in Santa Monica. On Sunday morning, William`s honorary uncle, D, and his girlfriend joined us for what turned out to be an extremely memorable day. William hiked Pacific Cove, chased seagulls, collected sea shells, and wrestled with his uncle. The day was ended with a couple of hours in the arcade at Santa Monica Pier and some of the best Gumbo I have ever tasted. (My appreciation and gratitude to Jerome for inviting us into his home, for great food, good wine, and excellent company)

So, what started out as a weekend bordering on tears, broken nerves, anxiety, and fears, ended in a weekend filled with happy memories, good friends and William`s laughter.

As always, we will Keep on Keepin' on. We will live strong with God in our hearts and His courage in our souls.

Frustration and Nerves.

Since Monday night, William has been inpatient at City of Hope.. On Monday morning William spiked a sudden high fever. Symptoms included stiff neck muscles, headache, dizziness, nausea, increased heart rate and low blood pressure. To rule out Meningitis, the doctor did a lumbar puncture and ordered blood tests.

I am relieved to say that the tests came back negative for meningitis. Williams blood tests did unfortunately test positive for Gram Positive bacteria in his blood. Actually, he tested positive for 2 Gram Positive infections.

The good news is that the antibiotics that have been prescribed will able to fight the infections and should have William healed in a few days. Unfortunately, the antibiotics will almost certainly cause the C-Diff to return. The return of C-diff will cause a delay in radiation.....SIGH.

I don't like postponing treatment. The thoughts and nightmares that come to mind about the disease relapsing is HORRIBLE.

Please pray that the cancer stays away and dead. Please pray that the blood infections are healed and that the C-diff does not return.

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

Quick update!

I am happy to write that we were fortunate enough to spend Christmas at home. Actually, William and I have been spending a lot of time at home. Unfortunately, we have also spent a lot of time traveling back and forth to the hospital for routine appointments and transfusions. As you can imagine the eight hour commute (each way) is exhausting.  Yes, the 16 hour commute gets daunting, but it is well worth it when we get to spend nights in our own home and in our own beds.

Health wise William is doing really great. Although he still requires two platelet transfusions per week, his energy level and personality seems to be at an all-time high! From what I can tell it seems like we have been able to successfully treat Williams's tummy problems (c-diff). Yippee! Tuesday (next week) we will be returning to the City of Hope as long term resident outpatient patients. We will once again stay in one of the onsite apartments and prepare ourselves for the upcoming treatments. My understanding is that the tentative plan starts with a set of scans and radiation measurements / markings. Radiation itself will start a few days after the prep is done, and the Angiogenesis inhibitor treatments will start at approximately the same time.

I will update the blog again within a week. Until then, keep on keepin' on with God in our hearts and His courage in our souls!

Overdue Update

Wow, I can't believe that it has been a month since I updated the site.....but as always, no news is good news.

Since our last update William has been struggling with c-diff (yes, it returned again) Due to the intestinal problems that usually result from radiation, the treatment team has decided to postpone radiation and angiogenesis inhibitor treatment - proceeding with treatment while he has c-diff can be extremely dangerous. We are hopeful that by the end of December the c-diff will be gone (for good) and treatment can proceed as anticipated. It's been three months since the bone marrow transplant conditioning - Considering how aggressive this cancer is, I get anxious about moving forward and not giving the cancer the opportunity to return.

Our continued treatment will occur at City of Hope in southern California. Our hopes of receiving the treatment closer to home has not become a reality - HOWEVER, I am a huge City OF Hope supporter and am therefore I am not really disappointed at the prospect of staying here.

Please continue to keep William in your prayers.

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

Day + 50

For those that were asking - please continue to send mail to the following address

City of Hope
Patient- William Klopper
1500 Duarte rd
Duarte CA 91010



William and I are hoping to return home for a few days next week.... We really don't want to sound Thanksgiving here :( but, then we will return for continued treatment.



William is doing well, he still continues to receive multiple transfusions per week but, this is all part of his body recovering and restoring itself after going through so much. Even though we are no longer in the hospital, we are still at City of Hope and living in a small onsite condo. Our current accommodation is part of the Hospital's Hope Village, a small community of houses that provides long distance transplant patients and care providers a reliable, safe, sterile, and affordable housing.



I think I have mentioned this before, but in case I have not....The City Of Hope is an AMAZING. I am truly proud of this place! The doctors, professors, child life, social workers, nurses, volunteers and counselors are all truly dedicated to the mission of curing cancer and providing the best treatment.



A huge thank you, and humble gratitude to the Drias family. They recently went to Jerusalem for Josh's Make a Wish trip and while they were there, Josh placed a prayer for William at the Wailing Wall. Below are photos. Thank you Drais family - you guys had me in tears of gratitude when I read your email.

Update on scan results and future treatments

My apologies for the delayed posting, it has taken me almost 5 days to get an affirmative answer and agreement amongst from all doctors involved in Williams health, future treatment and results from the scan.

Scan results -
Yes, the results showed that there were NO tumors that "light up" on the PET scan which means that the tumors are dead/calcified.
HOWEVER, the doctor did remind me that just because the tumors themselves are dead, it does not mean that we are "cancer free" zone. There are still microscopic cancer cells that "hide" and/or become dormant. The presence of these cells are a major concern because it only takes 1 cell to grow into a monster of a tumor, and because it is DSRCT the cancer is aggressive and spreads extremely fast.

Future treatment-
Starting in mid-December William will be receiving the treatment listed below. In an attempt kill any lingering cells, from all possible angles the different treatment techniques listed below will all be combined into 1 potent cocktail/treatment road map. The total estimated time of treatment will be for 6 months to 1 year.


Treatment 1.
Angiogenesis inhibitors
Angiogenesis is a normal and vital process in growth and development of blood vessels. However, it is also a fundamental step in the transition of tumors from a dormant state to a malignant one. To inhibit angiogenesis and prevent tumor growth (new or existing) William will be receiving 4 daily oral medications. The drugs are:
-Temodar (temozolomide) - basically this is a low dose, maintenance chemotherapy.
-THALOMIDTM (thalidomide) - really strong angiogenesis inhibitor.
-Accutane (isotretinoin) - Normally a prescription Acne drug, also a angiogenesis inhibitor.
-Celebrex (celecoxib)- Normally a prescription arthritis drug, also a angiogenesis inhibitor.

Treatment 2.
Whole Liver Radiation
Number of treatments will depend on how his body recovers from the bone marrow transplant and also the above mentioned angiogenesis inhibitors.

Treatment 3.
Nutrition
Dr. Anderson recently witnessed one of his oncology doctors/friend go through testicular cancer and he witnessed the benefits of Ph Balance eating habits and taking supplements. So, once we get out of here, We will once again return to our Ph Balanced, no gluten, no sucrose/dextrose/glucose, raw fruits and vegetable lifestyles :)

Ooh and I almost forgot to mention that the best part of this treatment plan is the fact that it is all OUTPATIENT, meaning that unless there is infection, fever, and/or complications, we won’t be spending nights in the hospital..YIPEE!

Miracles

Below are photos from last week's PET scan report that was finally made available to me today!


I still need to talk to William's primary oncologist, Dr. Anderson but, from my understanding this report states that the cancer is Gone/dead!


The good news is a shock and I think I am too scared to really believe it.....I need actually hear the words coming out of Dr. Anderson's mouth.Silly, I know.


When William was first diagnosed, his biggest tumor was the size of a football (pelvic area) today's report clearly states that there is no tumor, nor is there any sign of it! In the beginning, William's Liver was classified as TMTTC ( too many tumors to count), today's report had me so surprised that I had to read it over and over a dozen times. William has not had any kind of surgery to debulk or remove tumors so the findings from this scan is nothing short of a miracle.


Thank you for all the prayers, they have been answered. Please keep them coming!

Day +31

TGIF - in my last update I mentioned that we would be allowed to leave today, well once again that is not the case. Earlier this week William started suffering from strange abdominal discomfort, nausea, fevers, cramping and sensitivity to abdominal examinations. Long story short, the doctor ordered some blood tests and we were told that William had pancreatitis and a kidney infection. So, we will remain in the hospital for at least another week.

I am happy to report that even though he has faced so many challenges, disappointment, and strong treatment, William is dealing with it all like a champion! My lil man in so strong, stronger than me. William's stubborn, witty, tenacious and loving personality is back to normal and definitely keeping me and the nurses on our toes. :)

Yesterday, City Of Hope hosted it's 17th annual Halloween parade for all the oncology kids. I have to say that I was in awe at the amount of effort, team work, joy, and dedication that went into making this event such a huge success. For a couple of hours, the kids were rolled around the majority of City of Hope's campus in their wheel chairs(iv poles in tow) trick-or-treating around a constructed maze of executive level employees, board members, volunteers, nurses, administrative staff, Disney Channel celebrities, doctors, researches, medical students, interns and local politicians. Every single person was dressed in coatumes and enjoyed the event, laughter, endless candy, games, and jokes. Even with Williams fragile immune system, he was allowed to participate in the event and secure himself more than 4 kg of candy.

As you know we have started the process of re evaluating William's disease/cancer. Obviously we pray that all the tumors are dead- there is nothing that we would love more than for William to return to a lifestyle that does not involve doctors, hospitals, painful treatment, and icky medicine. We hope to receive at least a preliminary report by this afternoon....I will be sure to update the blog as soon as we know anything.

I sincerely hope and pray that Williams health will continue to improve, we are all eager to get out of the hospital but William definately deserves a break from all of this.

This is Williams journey and we will keep on keepin on, with God in our Hearts and His courage in our souls.

Day + 26

It's day +26 and we are still in the hospital which means that we have been for 36 day.....ARGH!

We were hoping to be released this past Friday, unfortunately William's BK virus took a turn for the worse and William started peeing blot clots. So, unfortunately our stay in the hospital got extended by 7-10 days. This entire week was consisted of treatment, anti-viral medications and a lot of hydration- all in an effort to heal the his bladder and permanently get rid of the stupid BK virus. By the time Friday came around, Williams bladder seemed to be healing and his overall health appeared to improving too. Yesterday I met with the transplant doctor and it was agreed that William's body showed evidence of healing and therefor the doctor felt comfortable with a forecasted discharge date of 10/29. Yeah!!!

Unfortunately, our smiles and excitement about the upcoming release was short lived. Last night William spiked an extremely high fever, started urinating blood and blood clots, and to battled constant tummy problems and nausea. Needless to say, the sudden change in his health is concerning and a lot of tests/analysis are being done to determine the primary cause to all of this. The doctor suspects that the BK Virus lead to a possible kidney infection...but that is just speculation and I won't have a definite answer for a few more hours. The only thing we really know for sure is that our stay in the hospital has once again been extended 7-10 days......

Thank you for your continued love and support