Fun, Fun, Fun!

Our day started with some WWII airplanes that were on display in Long Beach, and ended with big smiles after spending an exhausting 5 hours at Knotts Berry Farm.
I am so grateful that my son is able to enjoy all of the fun things that we experienced today!

Keep on Keepin on.

Live Strong in God's love and healing.

Making Memories

In prep. for all of the time we are going to be spending indoors and in isolation, we are absorbing all of the fun and son that we can. Treatment starts on Monday so we plan on spending this weekend at the WWII Air Show and the beach.

Here are a few photos.
Please remember to keep praying. We have a difficult road ahead of us in the next 3 months.

Scan Update

PHOTOS IN THIS POST ARE OF WILLIAM AND SOME OF HIS NURSES FROM SUTTER.

Yesterday, William had a PET scan done at City of Hope. Shortly after the scan was completely my mom, William and I met with Dr. Anderson. Now, before I get into the preliminary results from the scan, let me explain how it works. In a PET scan, William is given a nuclear sugar mixture that the cancer cells absorb. The uptake amount of the nuclear mixture into the cells are measured in the densities or brightness levels that appear on the scans. Normal cells have an SUV (standard uptake value) of around 1 to 2. Cancerous cells are higher and are normally around a SUV of 5.  The more uptake a cell has, the brighter it shines on the PET.  So basically, an active, thriving and living cancer cell eats a lot of the nuclear mixture and therefore appears as a bright spot on the scan. If a cell has an SUV of around 2 to 4 then the brightness of the cancer is not as apparent.  

 I am happy to report that Dr. Anderson was extremely excited about what he saw in yesterday's scan. Even though the radiologist has not yet done his official review on the scan results, Dr. Anderson said "William did not light up like a Christmas Tree" as he did in February of this year. 

I cannot tell you how happy we all were to hear the news! Even though William does still have a few bright bright spots,  they are significantly less than they were! The spleen, pelvic lymph node, and one large tumor in the liver were the only bright spots ;)

Dr. Anderson took the time to actually bring up all the scan on a computer monitor and show us the amazing results! The chemo that the Sutter team did on William worked, there is no denying it but, Dr. Anderson did tell us that now, before the cancer becomes chemo resistant, it was time for us to start on our path down aggressive treatments. On Monday, William will start 5 days of Ifosphomide and VP16 with a bladder protection Rx, Mesna. William's extreme bladder damage caused by the first two rounds of chemo (P6) in April of 2010 forces us to be careful with the types of chemo used, however we also need to be aggressive enough to shock and kill the remaining caner. Dr. Anderson is working with his colleagues to determine the best dosage for William.

Step 2.  After 5 days of Chemo, we will return to the Long Beach house for approximate 10-14 days. During that time William will receive daily Neupogen injections to stimulate the growth of white blood cells. Around day 10, we will return to the hospital for daily blood draws. Like fertility tests, there is a "magic hour" or a window of opportunity during which William's body will have produced enough stem cells for the doctors to go in and "rescue" them so that they can be used in his bone marrow transplant.  

Step 3. 5 Days of chemo
Step 4. 21 days of recovery

Step 5. 5 Days of Chemo

Step 6. 21 days of recovery

Step 7. BONE MARROW TRANSPLANT!

If all goes as planned, the BMT (Bone Marrow Transplant) will be done in Late June or Early July.

IT IS IMPORTANT TO NOTE THAT WILLIAM WILL BE NEUTROPENIC FOR A LONG LONG LONG LONG LONG LONG LONG LONG TIME AFTER HIS BMT.  
As you can imagine there will be plenty of other medical procedures and events happening after the BMT is done. = Whole liver radiation and surgery is obviously going to be a big part of treatment but, for now our road map for the next 3 months is set in stone!

Keep on Keeping on.

Live Strong in the evidence that miracles are happening in Sir. William's body!

 

Overdue Update

HAPPY EASTER!

I hope everyone has a wonderful, safe, memorable Easter Sunday.

Randell, William and I arrived in Long Beach on Friday night. The boys and I have spent the last two days enjoying the beach and making wonderful memories. Unfortunately Randell had to fly home today but, we hope to see him again in a couple of weeks. 

Our first appointment at City of Hope is tomorrow - I am looking forward to the new chapter in William's treatment plan, and I am no longer scared, nervous or anxious

After tomorrow's meetings we will have a clear understanding and outline of William's new protocols. We will also have a rough schedule and calendar to work with so that we can plan a trip to Camp McDonald, Disneyland and Lego World. Obviously we will also be planning a couple of trips back to Sacramento but, I think it is safe to assume that Randell will be coming here more than we go there.

I want to send a HUGE thank you to all of the fabulous, loving, and wonderful nurses at Sutter Hospital.  Over the last year we have spent more time with those nurses there than we did with our families. The care and love that was given to William is just amazing, and I truly believe that a big part of William's success in fighting this disease has been due to the friendship, love and commitment he received from his nurses. Thank you to all of the Sutter family members for everything you did... You will be dearly missed!

I have received some emails asking for our new mailing address, I promise to get that posted here the site within the next week. In the meantime, please continue to post messages of encouragement for William here on the blog. He truly loves reading your messages!

Keep on Keeping on. LiveStrong in God's love and promise of healing. LiveStrong in the good memories that get us through the tough times, and LiveStrong in the kindness, Love and commitment of our friends and family.

Presents in April

we are home

Yesterday, William received two realy LARGE presents!
A family friend of ours worked some magic and to our extreme delight, William is now the proud owner of an Ipad.

Also, William received an envelope in the mail from an anonomous friend. The return address is a PoBox in Single Springs but, there was no name, no card an no note. SEE PHOTOS BELOW.
Whoever you are, THANK YOU, THANK YOU , THANK YOU, THANK YOU.

The support from everyone has been extremely overwhelming and equally appreciated!
Please remember that we need prayers!

ENJOY THE PHOTOS! William's smile was so big yesterday that his cheek muscles hurt at bed time last night.

Making Plans

Our departure date for the long awaited transfer to City of Hope in LA is approaching fast and I am getting nervous.  We are still in the hospital! I was really hoping that we would be home by today but, it looks like we will be here until Friday. I am a little stressed out about still being at Sutter, I am feeling so pressed for time and I fear I may not have enough time to pack, plan and prepare for our move. I have already started making a list of all the things we need to pack and do before we leave. HOPEFULLY I don't forget anything.

Yes, we are still in the hospital. ARGH! William is still extremely neutropenic and is therefore "behind double doors" He is not allowed walk around, participate in activities in the play room, or even visit with buddies in their rooms (but they do sneak into ours ;)  ) William's frustration and boredom is at an all time high, unfortunately there is nothing I can seem to do to make it better. Poor lil' man is tired of playing XBox or Wii Games and every time I mention playing a bored game, building a puzzle, or doing some crafts, he looks at me the same way he does when I tell him to do homework or read a book.

If you would like to say good bye to us before we leave (and I have not already contacted you to set something up) please let me know.  As long as you have not had ANY vaccinations or  immunizations  in the last 6 weeks, not currently congested or sick, in perfect health and willing to entertain William ,then you are welcome to visit us while we are in the hospital here at Sutter. I just ask that you please check in at the nurses station and then "sanitize" before entering our luxury suite ;)

I have had a couple of you ask about our new mailing address in Long Beach. Once we get settled in, I will let everyone know what our new contact information is. My mom will be joining William and I in LA. I don't think that I would be able to go through the next few months without her by my side helping out and giving support. 

I am absolutely sad about the thought of being so far away from Randell. It's a horrible thing when a family needs to be split like this. Obviously we will try to have him visit  when possible. I just don't like the thought of William being so far away from daddy and me away from my husband for such an extended period of time. It makes me sad just thinking about it. . . .

Thank you for all your continued love, prayers, support and friendship.

Keep on Keepin on.
Live Strong in God's love

The Lessons We Learn

Lesson for today - Miracles happen! Today a year ago William was in the ICU, his belly was extremely swollen (72cm), his testicles were the size of large oranges, he had a bladder that was so damaged by chemo that a catheter had to be inserted. Today a year ago William walked for the first time in weeks. This is a link to his old Blog and the entry Blog from 365 days ago

I don't often read the old entries as they make me extremely emotional but, I am glad that I read this one because it gave me some much needed perspective.

William and I are still at Sutter Resort and Spa but, it looks like we may go home tomorrow or on Wednesday. I am happy to report that all of the viral nasal swabs and blood cultures have come back negative, this is great news. Unfortunately I still don't know what caused his fever spikes, I guess it is just one of those weird things that happen to ChemoKids.

I am not sure if any of you read the news in USA Today regarding Exide Technologies in Frisco Texas and the EPA investigation into DSRCT diagnoses.... Long story short, Exide is one of the largest producers of stored energy batteries. The company has more than 631 locations in the US and it is also spread out among 80 countries. The report got me extremely interested and I started doing my down digging and research. This is a link to a map I created on google. Purple thumbtacks indicate the location of a DSRCT patient and the blue markers indicate and Exide Technology location. I am not saying that there there is a definite link but I encourage you to take a look at the map and come to your own conclusions. NOTE - Zoom in on the USA to get a good idea of what I am talking about.DSRCT and Exide Map

I am happy to report that William's hair is growing so fast and it is so beautiful! His hair is pure white and extremely soft ;) Unfortunately it will all be gone within a few weeks. The chemo that awaits us in LA is extremely strong and hair loss sure to happen.

While doing some research on DSRCT I stumbled across the following "Important Lessons" that a DSRCT dad wrote shortly after his son passed away from this horrible disease. I wanted to share this with you for no reason other than my hope that it may help someone, comfort someone, or answer a question that has been lingering in the mind of a parent (Like me).

Lessons:

1.      Always get second or third opinions. Doctors are used to it. They won’t be mad with you.

2.      One of your best chances is when the disease is not metastatic or is only locally metastatic. Ask for a very aggressive surgery with wide margins. Couple it with radiotherapy (IMRT/proton/ etc). Maybe an autologous transplant. Radiotherapy later in the treatment increase/prolong neutropenia (low neutrophils) and thrombocytopenia (low platelets). Transplant later may not be a good decision.

3.      The treatment has to be holistic. By it I mean using the traditional medicine for sure but coupling it with alternative medicine (attention: when there is no conflict!!), biotech, spirituality and love.

4.      Monotherapy doesn’t work most of the time. The disease is so aggressive that a cocktail has to be used continuously. Try to use chemo to activate the death pathways of the tumor cells and use other drugs/herbs/ etc. that block as many survival pathways as possible.

5.      Take the initiative. Study. Research. Take the articles to your doctors. Give them ideas. Conduct as much as possible the treatment. The Internet is an amazing tool. By studying you will be able to know more about the disease that any doctor since they don’t treat only DSRCT patients and see only a very few DSRCT patients in their lives.

6.      Choose a doctor that has experience with the disease. Choose a doctor that is not afraid of testing new protocols, a doctor that never gives up. Choose a doctor who is not afraid of what their peers will say about his recommendation/ treatment.

7.      Listen to everything. Talk to everybody. Read whatever is available. Most of the time a good advice comes from the least expected place/person.

8.      There is no defeat in advance. Every case is different. Even among all of you. Statistics are not useful at all. Don’t listen to them.

9.      Believe all the time. Get the strength from inside you. Make plans for the future. Look how placebos work! I personally believe that you can cure/treat yourself as well as any doctor/drug. Talk to your body!

10.   Don’t live the disease. Run away from it. Enjoy life. Enjoy every day and every moment.

Keep on Keepin' on.
Live Strong in God's miracles - They happen every day!

Back at Sutter Resort and Spa.

Yesterday William and I arrived at the hospital for a routine transfusion; however, before the transfusion even began William spiked a low grade fever of 100.5.  For a normal healthy person a temperature of 100.5 is nothing to be concerned about but, because William is neutropenic (has not immune system) any fever at all raises red flags and also requires an admit into the hospital for a mandatory 72 hours of antibiotic and observation.

As much as I was trying to haggle and bribe our way out of an admit, I am happy that we are here because William had some seriously high fever spikes last night.  As per protocol with fever spikes, William had a couple of blood cultures drawn (with each fever spike).  Should the cultures come back positive with any sort of bacteria growth, we will get an automatic 10 day stay filled with antibiotics. However, I don't think that this will be the case as William has a brad new central line and we have been extra sterile and careful with the maintenance. 

William has had a croupy cough all week so last night the doctor ordered a chest x-ray, and this morning we were told that  William has bronchitis.  Anyway, as long as the blood cultures keep coming back negative for growth, we should be able to go home in a couple of days.

Our first official appointment at City of Hope has been confirmed and set in stone! YIPPEE!

We really need everyone to please keep their prayers focused on a few things-
1-William's body will be able to provide us with the stem cells needed to do a rescue
2-William is a viable candidate for a bone marrow transplant
3-William's treatment at  City of Hope is successfully, safe, and pleasant.
I realize that praying for a "pleasant" treatment may be a little weird but, the last thing we want is for William to be miserable and/or unhappy.

Randell gave William one of his old cell phones and now William is the coolest kid around ;) with the promise of being able to talk to his friends, sutter nurses, family and "fans" whenever he wants,William feels a lot better about our move down to LA.  For those of you interested, William's cell phone number is 530-919-4459. PLEASE keep in mind that this is a pre-paid phone and so William has limitations on the amount of calls and texts that he can receive and make. 

Thank you for your continued love, friendship, prayers and support.

Keep on Keepin' on.

Live Strong in God's healing and miracles.

LA here we come!

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My apologies for the delayed response but, there have been so many changes during the past 48 hours that I wanted to make sure that all my facts are correct before I posted any updates.

This morning I discussed William's future treatment with Dr. Lee, one of William's current oncologists.  Long story short, William will be transferring to City of Hope in Duarte (LA area) Unfortunately it does not look like William's current oncologists would be able to remain as a part of the treatment plan, so William and I will be relocating  to the LA area for least 3 months.

Thanks to the generosity of family friends, William and I have a house that we will be renting in the Long Beach area while doing treatment. Hopefully my mom will be able to stay with us and help out with the chaotic treatment plan that awaits us. 

We are incredibly grateful to Sutter and all of the amazing nurses and doctors that have treated William during this last year; our move is in no way a negative reflection on anyone here. Our decision to transfer is based on the fact that  City of Hope has more treatment options, experience with DSRCT, and they also have some of the best technology and resources available.   Dr. Clarke Anderson will be William's new oncologist.

The decision to transfer William has not been easy one; my family and I have spent multiple sleepless nights and tear filled conversations discussing the pros and cons.  The cons are terrible and heart breaking but, the pros out weigh them.. Basically, what it comes down to is the fact that we can continue the current course of maintenance chemo knowing the  ultimate outcome, or we can seek some controversial treatment  that will provide us with a chance to beat this thing and give William a real fighting chance. 
This was not an easy decision and I am sure that there will be times that we may regret making it, but it's the decision that Randell and I did a lot of praying, fact finding, crying and soul searching about. 

A big part of the new treatment plan involves a stem cell rescue so that a future bone marrow transplant may be performed with William's own stem cells. Because William has already been through so much chemotherapy and cancer has spread to the bones, there is no guarantee that his body will be able to provide us with the amount of stem cells needed to do a rescue but, we are going to try our hardest! 

Our tentative plan to start treatment at City of Hope around the end of April.  I am sure that there will be plenty of changes and updates between now and then so I promise to try my best to keep everyone updated and informed. If anyone should at anytime be confused, please let me know so that I can try my best to explain.

Please keep us in our prayers! We have an long road a head of us and we could use all of the love, prayers, friendship and hugs in the world.

Keep on Keepin' on.
Live Strong in God's promise of healing!

Update to let everyone know that we have been home for a little more than a day.

Late yesterday afternoon I had a brief phone conversation with one of William's nurses, on our behalf she discussed William's bone scan with the oncologists here at Sutter. It seems that the oncologists are not convinced that the new finding in William's sinus is cancer (at least not DSRCT). Their reasoning  is "DSRCT does not occur in that area". The doctors don't have an explanation of what the new finding is but statistics and medical facts tell them that it is not cancer.  So, after hearing this from the nurse and speaking with Randell, we have decided that we want a new diagnoses. 
In January a fellow DSRCT patient was re diagnosed with Ewings sarcoma, a cancer that is extremely similar to DSRCT but occurs in the bones. No one knows if his initial diagnoses was wrong or if his cancer changed into Ewings; eitherway, it is something that has me wondering if William has Ewings too.
If William does have Ewings then this would explain the rapid cancer growth in the bones and also the cancer in the sinus. 
I am not sure if our current oncology team would be willing to do a re diagnoses, nor am I sure that I would want them too...... Long story short, City of Hope in LA will most likely be our new home hospital. There are still a lot of facts for us to consider, questions to ask and statistics/logistics for us to workout but, there is a strong possibility that William and I will be relocating to LA. I will have more details on Monday afternoons.

Keep on keeping on.
Live Strong in God's promise of healing.