T.G.I.F.

I am happy report that today is our last day of chemo for the round 11. Woo Hoo. I want to thank all of our supporters that wrote to use with advice about the relentless hiccups. Fortunately we were able to get a prescription muscle relaxer and within 30 minutes of William taking his pill, the hiccups stopped!

Tomorrow, if the weather and fog cooperates, there is a possibility that William will go on an airplane ride. One of our kind blog readers, Lynden, has offered to give William a ride in his Piper taildragger Bush plane. As you can imagine, William is super excited about this and because the entire thing depends on the weather, he has been anxiously watching the weather channel all morning. If tomorrow's plane ride does get postponed due to bad weather, we will try to reschedule the trip for the following weekend.                                                                         Sunday is race day - YIPEE!!! There has been so much excitement in our household about this race. All of the conversations between Randell and William seem to be related to gravity, weight, speed and aerodynamics. If you have ever played a card or a board came with William, then you know how absolutely competitive he is and how determined he is to be the best at everything he does. I believe that during the last several months filled with hundreds of board games, we have taught William how to be a humble and gracious loser. I hope that William does well in his race but, if he does not end up being one of the fastest racers, I hope that he remembers that the fun and adventure is in the actual activity itself and not the trophy.

We have been so blessed by the kindness of others. As you know Jeff Gonsalves, author of the Subnorm series, will be donating all of the February profits from his book, Fork in the Road to Apocalypse, to William. Purchases can be made via Amazon.com.

Also,thanks to the kindness and perservearance  of a 17year old young lady named Steph, the Chicago Fire restuarant on J street in Downtown Sacramento will be donating 15% of their profits for one night to William.

I beleive that this will be on February 21st, but I still need to confirm this. I will keep you posted!

Now for some BIG NEWS! GiftToCure is in the process of putting together a grand and regal masquerade ball.  We will have several local celebrities and public political figures attending the event. If all goes as planned, we will raise a lot of awareness about DSRCT and a lot of money for the much needed research and family assistance.  There will be a lot of information about this event in the upcoming weeks!!!

As you know, Grandpa is flying in from NC on Sunday and therefore William is counting down the hours until he gets to goof around with his partner in crime. We will be spending the few days that my dad is with us in the LA area. We have a couple of consult meetings scheduled with DSRCT experienced oncologists and radiologists. Hopefully we will return from LA with good news and a treatment plan that provides hope and a treatment plan....

We ask that everyone please keep their prayers for us focused on save travels, helpful and willing oncologist and healing of all of William's cancer and tumors.

Keep on Keepin' on. Live Strong in God's miracles and the healing in William's body.

Hiccups, Road Trips and the Green Hornet

Good morning everyone!
Today William will be receiving his 9th day of chemotherapy for round 11. I am happy to report that he has no side effects well, at least that is according to the doctors. ;)  For the past three days William has been dealing with some very persistent and annoying hiccups. Our doctors tell us that hiccups are not side effect of the chemo, but we are not convinced ;) We have tried everything we can think off to get rid of the hiccups, nothing seems to work. If you have any advice to share with us…. Please let us know….Anyway, if a few days of hiccups are the only side effect that we have to deal with, then I will not complain!

During the next 7 days, the entire family will be very busy with several exciting events and adventures. On Sunday William will be racing his derby car, the Green Hornet, and William’s infamous partner in crime A.K.A. Grandpa will be flying in from NC.  While grandpa is here we will all travel down to LA where we will have two days of appointments with DSRCT experienced oncologists. William and I love road trips, grandpa says it’s because our family has gypsy blood and we feel the need to explore roads and travel the world ;). We are both extremely excited about spending a time with Grandpa and being in LA…..

Last night William received a gift from a group of kind and BIG HEARTED people in Houston - The following video shows William opening the box and loving the presents

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

Chemo Recipe - Answering some Email Questions

I have received some e-mails from other cancer patients wanting to know the dosage and protocol that William is on.

This is the information I have:

Days 1 - 5
Temozolomide PO  100MG dose daily 1 hour prior to Irinotecan
Irinotecan        IV    10MG dose daily

Day 6
Rest

Day  7-12
Irinotecan       IV    10 MG dose daily

Day 12 -21
Rest

I hope this helps...

Day 5 of Chemotherapy Round 11

It is a beautiful sunny Saturday in Sacramento and we are spending the first half of the day receiving chemotherapy at Sutter.  Fortunately, as I am typing this update, William is finishing up on his chemo and we anticipate being out of here within the next hour - Yipee.

The great part about doing chemo on an outpatient basis is the fact that William is now once again able to participate in cub scout events.  Last night we attended a den meeting and William was presented with two red beads that count towards his progress and rank. ;) I am so proud of my little man. Even though we have spent a ridiculous amount of time in hospital during the last 10 months, he still progresses towards the accomplishment of achievement of his Bear Cub rank. 

The much anticipated Pinewood Derby race is in 8 days. Two of our hospital buddies, William M. and Spencer P. are also cub scouts  and they will have their races around the same time that William has his so, all three boys will be keeping track of their race times and the next time they see each other they will compare times amongst themselves and determine who had the fastest car :)

I have an update on our quest to find a Sarcoma Center. Yesterday I received a call from City of Hope  and it looks like they might be interested in treating William. So as a preliminary action plan, William and I will be spending the first week of February in LA during which time we will have consult meetings and tests with the oncology teams at City of Hope, UCLA Jonsson, and Cedar Sinai . I am still waiting to hear back from CHLA and CHOC, hopefully they return my calls and emails soon.  I am most interested in hearing back from Dr. Marcio Malogolowkin who is apparently an internationally renowned expert in liver tumors and pediatric cancers. Dr. Malogolowin  is the Division Head of Pediatric Oncology/Hematology at CHLA.

I want to remind everyone about the wonderful fundraising event that will start on February 1st. Jeff Gonsalves, author of the Subnorm series will be donating the profits from all February sales to William ;) Books can be purchase on Amazon .

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

One day at a time!

It's Thursday night and we are done with day 3 of chemotherapy round 11.

For those that do not know, William and I got discharged from the hospital yesterday evening. Due to the length of this protocol, we decided that it would be best  if we switched to an outpatient setting. William and I will drive to the hospital everyday for the next several days where he will receive Irotecan via IV for 90 minutes. Temador, the second drug in this chemo cocktail, is taken at home via oral pill.

I must admit, I was extremely hesitant about doing the chemo-thing at home. I have become extremely reliant on our fabulous night nurses at the hospital and to be honest, I was not sure if I would be able to handle everything on my own. BUT, after spending a very quiet and relaxing night at home, I quickly realized that we made the right decision.  After all, there is nothing more therapeutic and comforting than having the entire family together :)

I want to thank all of you that wrote to us regarding the Irotecan and Temador combo. Now that I have received confirmation that this protocol has indeed been used without the presence of Avastin or Vincristine  in other DSRCT patients, I feel significantly better and my nerves have calmed a little. I am still upset that the doctors did not feel that it was not necessary (or cordial) to consult or inform me about the changes in advance.

For those that are interested, the major and most anticipated side effect of the two chemotherapy drugs are as follows :

Temador

• seizure (convulsions)

• numbness or tingling on one side of your body
• loss of appetite
• nausea and vomiting
• unusual weakness
• pain or burning when you urinate
• white patches or sores inside your mouth or on your lips
• hair loss
• diarrhea
• mild skin rash
• dizziness, blurred vision
• sleep problems (insomnia)
• unusual or unpleasant taste in your mouth.

Irotecan

• Hair loss
• Poor appetite
• Fever
• Weight loss
• Constipation

• Shortness of breath
• Insomnia (see sleep problems)
• Cough
• Headache
• Dehydration
• Chills (see flu-like symptoms)
• Skin rash (see skin reaction)
• Flatulence (see abdominal pain)
• Flushing of face during infusion
• Mouth sores
• Heartburn
• Swelling of feet and ankles

Fortunately, we have not yet had to deal with any side effects.  I pray that William continues to do well with this chemo yet at the same time I mentally correlate bad side effects with effective cancer cell death (I know that I sound twisted)

For those of you that live in Northern California, William now has a donor club with BloodSource. It does not matter what your blood type is, please donate! William's donor club number is X158.
The donor club allows us to get William's transfusions at a discounted rate.. so please donate.

With the assistance of my mom, we have been reaching out to all of the Sarcoma cancer centers in California.  MD Anderson in Houston, Texas no longer seems to be a viable and realistic treatment center for us. It appears that due to the policies of the hospital's Insurance and Medical Contracts Department they are not willing to go through a necessary step that is needed for William's insurance company to approve out of state coverage. So, in a nut shell we are in a horrible catch 22 position with MD Anderson and William's Insurance. So, in order for us to move on to our next options for treatment we are veraciously looking for the "best" location and oncologist.  Our possible options are as follows:

University of California Davis Sarcoma Program
(Sacramento, CA)

www.ucdmc.ucdavis.edu/cancer/Specialties/bone_softtissue.html

Cedars Sinai Sarcoma Page
(Los Angeles, CA)
http://www.cedars-sinai.edu/Patients/Programs-and-Services/Sarcoma-Program/

UCLA's Sarcoma Program
(Los Angeles, CA)http://www.cancer.ucla.edu/index.aspx?page=662

Children's Hospital of Los Angeles
(Los Angeles, CA)

www.childrenshospitalla.org

City of Hope Sarcoma page, adult and pediatric
(Duarte, CA)

www.cityofhope.org/ccc/db

University of California, San Francisco
(San Francisco, CA)cancer.ucsf.edu

I would appreciate prayers for us to find the ideal Oncologist and Hospital. Thankfully, because William will have to finish this current chemotherapy round and recover from neutropenia before we to transfer out, we have some time to get everything arranged. 

I can't help but to get extremely overwhelmed and weighted down by the enormous task of researching and contacting all these doctors and hospitals, if anyone has any suggestions for us, please let me know.

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

Mass Confusion

It's Tuesday evening and we are at Sutter Resort and Spa.

The boys and I had a wonderful weekend together. Randell and William finished the exterior body of William’s derby car and the first few layers of spray paint is on. The only thing left to do is add the lead (weight), add the roll cage, final exterior paint and decor, and test drives ;). William's car is green so he named it the Green Hornet!

Ever since William’s diagnoses 10 months ago I have not been able to sit through an entire sermon at church without becoming a crying blubbering mess. Church is one of the few places where I don’t find myself holding my breath in a futile attempt to not cry. Instead, it has become the one place where I can take that deep breath, expand my lungs, and soak Randell’s shirt sleeves and shoulders with tears. This Sunday’s message by Pastor Tim was amazing and it stirred some emotions and thoughts that I have not wanted to deal with for a long time, if you are interested in hearing it, you are welcome to listen to the podcast on iTunes or you can listen online : http://www.gvcconline.com/audiofiles.aspx.

Towards the end of the service while Pastor Tim was finishing up on his message I started drying off my tears, blowing my nose and emotionally putting myself back together again. And then it happened, the music team started to sing a song that instantly sent tears to my eyes and a hard knot in my throat. “Through It All” is a song that I vividly remember hearing my grandma and grandpa singing.  My maternal grandparents were pastors in the communities that they lived in. I remember being a small child and thinking that my grandpa was an angel because he always had sick, sad and broken people coming into his home so that he could pray for them and fix their problems :)  I have such fond memories of my grandparents repeatedly singing this song while going through everyday things like cooking and sewing.  I know that this must sound silly to some, but hearing that song yesterday was the encouragement, the sign, the message, the prescription I needed… If any of my cousins are reading this I wonder if you too have good memories of hearing Ouma and Oupa singing this song. .

After having a very emotional Sunday and  leaving church with a renewed sense of hope and faith  I was certain that I could face anything.  We have now been at the hospital for less than 6 hours and all the hope and faith that was so abundant yesterday is now completely gone.

Before I get into the detail of this chemo, I want take a moment to remind you about the conversations I had with the oncology team last week. 
Conversation 1 : I asked the team to please consider doing Irotecan, Temador, and Avastin.
Conversation 2:  Team came back with a suggestion of doing Irotecan, Temador, and Vincristine. Using Vincristine made sense because it is a widely used chemo in sarcoma patients and William had great success on it with the P6 protocol.
Conversation 3: I agreed to do the chemo with the understanding that once I provide supporting information for Avastin , then the team would give it a shot. 

Okay, so moving on....We got to the clinic today and found out that the team had decided to take treatment in a completely different direction. Yes, this was all a complete surprise to us.  I think that Dr. Hsu saw my immediate shock and anger and therefore quickly started explaining to me that this new protocol is actually a protocol that Dr. Anderson @ MD Anderson designed, approved and wrote medical articles on.. I think that Dr. Hsu thought that by him providing us with this chemo protocol from MD Anderson that I would somehow be happy. Maybe he though that I would be grateful for the new information. Truth is, I am not happy or grateful. I am furious and during my melt down in the clinic I was on a rampage of verbally puking all the words of betrayal, disappointment, anger, frustration, confusion and anxiety that I have stored in my heart for 10 months... 

There are certain unwritten rules between oncology doctors and oncology mom. Two of those rules are as follows:

Rule No. 1  - Don't decide on treatment plan without consulting the "Momcologist". Treatment plans are to be discussed and decided on collectively before implementation.
Just because you are a doctor it does not mean that I trust you and therefore I am not going to submissively agree with a treatment plan that you have not made me aware of and I know nothing about

Rule  No. 2- You do not give a "Momcologist" a last minute treatment plan, especially not when the treatment starts in 2 hours and she knows nothing about the treatment, side effects,   etc.
Just because you are a doctor it does not mean that I trust you and therefore I am not going to submissively agree on a treatment plan that I not only know nothing about, but that I just found out about 5 minutes ago.

I asked Dr. Hsu why the treatment plan changed and he stated that it was because one of the chemo's is now oral vs. IV.  I asked him why this made a difference in whether or not he received the Vincristine and he told me "Well, I don't know, but that is how the study was written and studied" I don't like getting answers like that - AlI take away from that is that this doctor who is supposed to be saving my son's live can't even give me an educated answer as to why IV chemo is different from oral and why one method vs. another means that Vincristine needs to be completely excluded.

The new treatment is Temador and Irotecan....nothing else....and it is done in a two week treatment plan  vs. a five day treatment plan with the Temador,Irotecan and Vincristine.

What I am really angry about is that the decision to change treatment was decided on last week during the weekly team meeting. Why didn't any one bother to call me? Why did no one give me heads up and tell me that we will be in the hospital for 2 weeks instead of 5 days?

 After leaving the clinic I sat in car considering our options
Option 1-Go home, pack bags and leave for Houston. We would wait in Houston for the insurance to get figured out. This would mean that William would be without chemo for an unknown amount of time.....
Option 2-Go home, pack bags and drive down to LA and get admitted into a sarcoma center...This would mean that William would be without chemo for an unknown amount of time....
Option 3-Stay at this hospital, start this weird chemo that I know nothing about and put together a plan of action.......

I decided on option 3. It's been more than 30 days since William's last chemo and it would be too risky to wait for another treatment. So, from what I know and from what I have read we will be here for about 10 days. Hopefully during the next 10 days I can make some sort of progress for with the transfer to MD Anderson. If MD Anderson does not become an option for us within 7 days then I will move to Option 2.  UCLA Jonsson Comprehensive Cancer Center has one of the busiest sarcoma centers in the nation; Cedars-Sinai has a really good sarcoma center too. Both of my backup hospitals have experience with DSRCT and both are sarcoma center.

The reason why it is so important for William to get treated at a sarcoma center is because sarcoma cancer centers are far more educated on the cancer, they are more willing to take necessary risks, they have a better understanding, they know the chemo better, they have the resources for a wide range of treatments, procedures and studies.

So, here we are at Sutter going through day 1 of 10 in a new chemo protocol. So far so good.

Keep on keeping on. Live Strong in God's love for us

Less T.V. and more books.....

We hope everyone is enjoying the weekend, we certainly are. 


A very special opportunity has been presented to us and I am extremely excited to share this with everyone.  Jeff Gonsalves, the author of the Subnorm series, sponsors a child with chronic illness every month on his website.  All profits made from sales of his books in the month of February will be donated to William.  YIPEE!!!!

"The Subnorm series focuses on adults and children who are psychic due to infection by the Klepto virus, which has been rumored to cause enhancement of a neglected portion of the brain, or development of an extra lobe with extrasensory abilities. Every mutation serves a purpose–such as cutaneous respiration in a boy who has trouble breathing due to asthma attacks, or a pinwheeling third arm in a child who is grossly obese. Unlike X-Men, the characters are not superheroes, but frightened people trying to hide their affliction from the Genetics Bureau.

For more information about Jeff and his books, please visit his website at http://jeffgonsalves.com/ Books can be purchased online at Amazon or through the publisher at http://www.wildchildpublishing.com/

William gets 100% profits from the books  Jeff sells in February. Needless to say, the more people who buy Fork, the more money is generated.  Did I mention that Jeff was not only a talented author but that he is also one of William's fav oncology nurses ;)

Please support this great opportunity and buy Jeff's books in February!

Keep on Keepin' on. Live Strong in God's miracles!

No Place Like Home

Good morning everyone!

Today will be our second day at home an d it is wonderful!

Yesterday William and I spent a sunny winter California day walking around our property with the dogs. We explored all of the overflowing seasonal streams and collected buckets full of dirt. We live in an area where gold was abundant during the gold rush era and for that reason William is convinced that we have some undiscovered gold in the streams. Most of the day was spent gold panning in icy cold mountain stream water. Unfortunately William was utterly surprised and complety disappointed when he did not find any gold.
After a brief period of feeling sorry for himself, William came to the conclusion that all the gold is still hidden in the tons of quartz rock that we have lying around everywhere so, today our time and mental energy will be spent on finding a way to crush the quartz and extracting gold. Yes, in William's mind it is just THAT easy to find gold.
It's so entertaining watching the thought process of a little 8 year old. A few minutes ago he was in his father's shop comparing a regular hammer, sledge hammer, rubber mallet and ax. I could actually see his little curious brain working on the mechanics of which tool would work better. William has finally decided to use one of his wood carving tools and the regular hammer to chisel away at the quartz... I will get the band aids and ice packs ready ;)

It is William's favorite time of the year and the annual Cub Scout Pinewood Derby race is fast approaching. This weekend Randell and William will be working on building William's derby car and hopefully we will have some time to do a few test drives ;) William is scheduled to start chemo next week Tuesday so we have high hopes that he will be done with neutropenia by the 30th, the day of the race. Actually, now that I am thinking about it, the race is such a big and long anticipated event and if by some small chance William is still neutropenic, we will slap a mask on his face and participate in anyway ;) Besides, these are the memories that last a lifetime and I am not about to allow this stupid cancer to stand in the way of something that is so important to William.
Keep on keeping on. Live Strong in God’s miracle of cancer healing that he is working in Sir. William (The 2011 pinewood derby race winner)

;)