Monday, February 27, 2012

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.

Sunday, February 26, 2012

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.





Friday, February 24, 2012

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, February 16, 2012

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.

Tuesday, February 14, 2012

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

Monday, February 13, 2012

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

Sunday, February 12, 2012

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.


Friday, February 10, 2012

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 -
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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.
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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.

Friday, February 3, 2012

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.