The good, the bad, the kind, the love, and the unknown.

Day 10 of Chemotherapy round 12.

Yesterday William was scheduled to receive platelets; however, when we arrived on the 5th floor
(pediatric outpatient) we discovered that all of the rooms were full and the waiting room was filled with 6 additional families waiting for beds to open up. We decided to not wait around and chance William being exposed to hospital germs, instead we decided that it would be best to return in the morning.  So, here we are on the 5th floor waiting for William's platelets to arrive.  The transfusion of platelets is normally a 30minute to 1 hour process but, we usually wait an additional 2-3 hours for the the paperwork to get completed, platelets to arrive, benadryl to get administered etc. etc. It is normally during this waiting period that William and I do homework and catch up on his cub scout activities.

This morning's activities in the room is different, William is sleeping off a strong dosage of Dilaudid and I am desperately trying to catch up on some much needed insurance paperwork. UGH! When we arrived at the hospital this morning William had a slight low grade fever (99.0) If his temperature rises above 100.5 

 a 0.6 degree difference, it would be an indication that his little neutropenic body is trying to fight off an infection, and that means that we would get admitted for observation and antibiotics. We recognize that a low grade fever admittance is a safety precaution, but we really don't want to stay here for the weekend.

Next week William is scheduled to start phase two of the new chemo regimen. Phase two is the outpatient combination that we get to do at home and on the 5th floor. Fortunately this combination allows us to spend nights at home with Randell. Unfortunately, we are not sure how William's his body will react to receiving the two two different combinations(Carboplatin and VP 16, and Irinotecan and Temador), so close to one another. Last month William had no side effects with the Irinotecan and Temador, but then again his body also had 30 days of rest and recovery in between the previous Carboplatin and VP 16 chemo treatment, this time there is only a 12 day break. I can't help but to get anxious and scared. I like to be prepared for all of William's medical needs, unfortunately it is hard to be prepared for the unknown.

My mom will be coming to California in March- WOO HOOO - During her stay here Randell and I will be able to take a much needed break. Together we have done an amazing job in coping with reality but, we are both tired and in desperate need of RandR. On March 25th GiftToCure will be hosting a Masquerade Gala at the Arden Hills Spa and Resort. The event will be strictly black tie (and mask) and will focus on the awareness of DSRCT and much needed research funding.  A silent auction, live music, and local celebrities are a few of the evenings attractions ;) Arranging an event of this magnitude is exhausting. Stacie Hubbard, one of the wonderful volunteer's with GiftToCure has taken on this project and sacrificed a lot of her time and energy...Thank you Stacie for being so kind and gracious -  You are truly and angel!

Emails and blog posts about the event and ticket sales will be sent out in the near future.  In the meantime, please keep an eye out for an email from GiftToCure regarding silent auction items.

William and I want to send out a special thank you to all of our friends at Chevron in Houston - This group of strangers has in the last few months become a big part of our lives. Their unconditional love, support, prayers, positive words of encouragement and kindness has made a big difference in our lives. They say everything is bigger in Texas, well this is true because this group of strangers have the biggest hearts. To all of our faithful  prayer warriors, supporters and friends in Houston, Thank you! Thank your for William's gracious gifts,kind cards, and Thank you for the love!

We appreciate every one's continued prayers and love! It is the kind words that get us through the toughest times!

Keep on keepin on! Live Strong in God's unconditional love and the miracle of healing!

Gloomy winter days

William is on day 8 of his protocol and I am sorry to say that the side effects are creeping in on us.

William is on a 24/7 feeding regimen of Zofran and Reglan (+benedryl) both of these drugs are used to prevent and/or stop nausea, unfortunately their side effects are headaches UGH!  Dilaudid, William's pain medicine,  is usually the drug of choice for his headaches and other pain; however, Dilaudid causes nausea so we are staying clear of that. Tylenol would be great for stopping the headache but unfortunately it could also mask any fevers. So, the next best option is Motrin but, Motrin does have the side effect of causing serious bleeding in chemo kids.... So, the big question for the day is WHAT DO I GIVE WILLIAM THAT WILL MAKE ALL THE PAIN GO AWAY AND HAVE MINIMUM SIDE EFFECT?  I have called the doctor and I am waiting on him to call me back with some hopeful answers, in the meantime all I can do is rub his head and give him hugs.

This morning I noticed that William's knees and ankles all have small bruises from them rubbing together while he sleeps. So, when you add it all up:

bruising+tears+tired+nausea+headache+constipation = BAD CHEMO SIDE EFFECT

Tomorrow afternoon William and I will be returning to the hospital for transfusions, hopefully he feels better after that. It is the worst feeling in the world when you, a mom, can  do nothing to make the pain and chemo monsters go away. 

That's all for today.

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

Happy Valentine's Day

To all of our friends, supporters, aunts, uncles, grandpas, grandmas, cousins, sisters and extended family members...................

Chicago Fire Restuarant - February 21st.

If you are attending the Fundraiser - Please click on the below image, a new screen will open up and you will be able to print the flyer from that screen.

The best day ever!

Today one of our hospital buddies, Kaleb Phillips, had a fundraiser at Airsoft Battlegrounds. Some of the activities and attractions at the event included face painting, jumping castles, airsoft battles,  various karate demonstrations, photo booths and food vendors.

From all of the conversations leading up to today I knew that William was excited; however, I did not expect the amount of energy that came exploding out of his little body! From the time we arrived at 11am until the time we left at 3pm, William was constantly running around, participating in all the events and having an absolute blast.

William officially finished chemo on Thursday night and knowing that his platelets have not yet been affected, Randell and I decided that it would be okay for him to participate in the Airsoft games. For those of you that do not know, Airsoft is a team sport similar to paintball where replica firearms shoot plastic BB rounds. The location we were at today was an indoor arena specially designed for the game. William did two rounds and had an amazing time.  Yes, it does hurt. Yes, William was shot. Yes, William has bruises. Yes, William had a lot of fun!

Somehow even after almost a full hour of running around playing airsoft games, William still had enough energy to bounce around on a jumping castle, participate in jousting games and get his face painted.

Here are some of the photos from today............

 

William and Kaleb!

Kaleb is 7 and he is fighting his second battle with Rhabdomyosarcoma.

While we were driving home this afternoon William exclaimed that he had the best day ever!  The comment and the memories we have from today is the reason why we keep fighting. The laughter, giggles, smirks and smiles is the emotional fuel that we all needed to refill our emotional gas tanks!

It is sometimes necessary for me to function with my emotional fuel gage on empty so I am grateful for today's refueling because not only did it fill me up, it provided me with some reserves ;) I read something the other day that stuck with me "You don't know how strong you can be, until being strong is your only option"  The strength I have is not always shown or expressed in ways that are appreciated by everyone and this leads me to something that I need to say ----------

Even though this blog was intended to communicate William's medical treatment and updates, it has become so much more. The blog has been a journal of my thoughts, fears hopes and dreams. It has been a memoir of events, both happy and sad. It has been a medical journal for treatment options, and it has been a dictionary of explanations and terminology. What this blog was never intended for was the use of a weapon or a tool to be used against me or my boys.

Lately, I feel like there may people out there that criticize and judge me. Some criticism has to do with William's medical treatments, some of it has to do with my relationship with Randell, and some of the criticism even surrounds my intentions with this blog. Sometimes the criticism is valid and I will do my best to correct the error. Yes, there are a whole lot of raw emotions and feelings floating around and it is sometimes easy to loose sight of love, compassion and forgiveness. What I am trying to say is that during the last 10 months I have been consumed with William's diagnoses and somehow, without my intention to do so, I have neglected important relationships.  I don't want to make excuses for the lack of contact, the missing connection or the missed opportunities, what I want is my apology to be heard and for all the anger to just go away!  I am exhausted and I struggle for the energy to defend my family, my relationships and my decisions. My apology is sincere and I hope everyone accepts it.

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

Laughter is the best medicine!

Day 3 Chemotherapy Round 12
William will be finishing up on his third dose of VP16 tonight and if everything goes smoothly, we'll be headed home around 11pm. YIPEE!!

For the past three nights we have been sharing a room with Kenji, an extremely sweet 8 year old little boy who is also fighting cancer. We've roomed with Kenji once before so fortunately the two boys are familiar with each other and they get along fantastically! It is great to see the two boys sharing jokes, playing Wii, and comparing spelling skills (the hospital teacher gave them a verbal spelling test) During the past couple of nights there has been a of laughter and giggles between the two boys. Having a buddy to share the room with makes all the difference in William's treatment! Thank you Kenji for being a good buddy!

Speaking about hospital buddies, William M. one of my William's hospital buddies, is currently at UCSF where he is going through the long and dangerous process of getting his bone marrow transplant. - We would appreciate it if you would please keep William Murdock and his entire family in your prayers. 

I almost forgot to tell you about William's stardom! In an effort to raise awareness about DSRCT, William was featured on the KOVR3 6pm news on Tuesday night. William has been on the news a couple of times during the past year but, this is the first time that the report was focused solely on him. Due to the attention and feedback received from everyone regarding the interview, William's self-esteem has raised so much that I now call him Justin Bieber Jr :-)  For the past 11 months there has been a lot of stares and comments from peers and strangers that left William embarrassed about his little bald head and diagnoses (BTW, people need to teach their kids to not stare). Walt Gray did such a great job with William's news story that William is now walking around with a big goofy smile and gleaming pride! There is no more shame about his lack of hair!  Nothing beats the amazing feeling of your child's happiness and it is the bright, cheery, happy and memorable moments like these that give us our strength and courage to continue the fight.

Please remember that there are two fundraising events this month for William.

Fork in the Road to Apocalypse is a book written by Jeff Gonsalves, one of William's fabulous nurses and a talented author. All the profits from February sales will be donated to directly to William.  The book can be purchased on Amazon.com

On 2/21/11 All 3 of the Chicago Fire Restaurants will be donating 15% of their sales to William. If you would like to participate in this event, you will need to download and print the flyer. The flyer must be presented to your waiter when placing your orders. 

I want to thank everyone for the continued prayers and kind emails! William loves reading your messages, emails and cards!

Keep on Keepin on. Live Strong in God healing all of the cancer in Sir. William's body!

Here we go again!

Day 1 Chemotherapy Round 12
William started round 12 of chemotherapy last night and fortunately everything seems to be going really well. The chemotherapy he is receiving has in the past given us problems with neusea, constipation, headaches and fevers, hopefully we can avoid them this time.

I am exhausted and don't feel like writing, I will try to write more tomorrow....

LOOK AT THE WILLIAM'S BEAUTIFUL HAIR!!!

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

The good, the bad, the ugly and some hope.....

It has been brought to my attention that with all the excitement about our LA trip, I completely forgot to update everyone on William's pinewood derby last week.  DRUM ROLLLLLL......William won his first four elimination races; unfortunately he lost his 5th race by .003 seconds..... Such a bummer. Out of all the participants (40+ total), William placed 15th. We all thoroughly enjoyed the day and William was proud of his accomplishements!

Our trip to LA was a memorable and relaxing experience! William had a lot of fun hanging out with his grandpa and exploring the interesting beaches of Santa Monica, Venice and Long Beach.  We also had the oppertunityt to take William to "Hollywood". William was a little dissapointed that Hollywood was not filled with celebrities walking around everywhere but, he had a great time exploring all the stars, visiting the chinese theater, and taking photos with some of his favorite characters, Spongebob, Shrek,Elvis and Elmo.

William and I returned to Sacramento yesterday afternoon. Unfortunately our day yesterday started at
4:30 am yesterday as Grandpa had a 6am flight out of LAX; Fortunately, the drive was back was filled with little traffic, a lot of eye-spy games, and countless jokes courtesey of William's imagination.

Upon our arrival in Sacramento, William had a clinic visit to check his blood counts and ANC levels.  During the appointment I asked the Dr. if he had spoken to either of the doctors in LA? Long story short, the conversation between us ended up in the parent conference room (nothing good ever comes from that room) where I had an emotional melt down. .........................Before I get too side tracked with my emotional jibber jabber, let's review some facts from the consults we had this week.

Consult number 1

Dr. Clarke Anderson at City of Hope.  

The meeting was extremely positive and discussion included stem cell rescue, whole liver radiation, and high dose chemo.
Consult number 2
Dr. Marcio Malagolowkin at Childrens Hospital of LA.

This consult was not as positive but, treatment options included debulking surgery, Chemobilization, and possibly doing a stem cell rescue.  O' and I need to mention that due to some confusion at the hospital, Dr. Marcio did not have the opportunity to view William's scans prior to the meeting; therefore, everything discussed during our consult was based on assumptions and estimations

The meeting yesterday was a detailed and honnest review of the following: 

William's disease is in the following areas

*Lungs -microscopic

*Mediastina

*Liver-Bulk of the disease
*Spleen

*Retroperitoneal Lymph node

*Left Testes
*Multiple bone masses including spinal cord

Yes, this is a lot but keep in mind that this is a drastic positive improvement from the initial diagnoses 10 months ago.

We have two treatment options:
*Balance and maximize quality and quantity of live, knowing the inevitable outcome.
*Pursue cure at all costs knowing that historical statistics on this disease are not good.

If you know me, then you know that I am not going with option 1. We are fighting this!! William is an amazingly strong little boy and he deserves the chance to grow old! I am not naive, I understand the odds, but 1% is still more than 0.

Now, let's go over how the above mentioned facts correlate with the treatment options discussed with both doctors in LA.

*Whole liver radiation

Not an option. Radiation would mean a delay in chemo and a delay would allow the cancer in all the other areas of the body to grow and spread.

*Chemobilizatin

Not an option. Due to the fact that the cancer is in both lobes, 80% in right and 20% in left lobe
*Debulking surgery

Not an option. There are too many disease sites and recovery would delay chemo.
*Stem Cell Resue
Not an option. Progressive disease in bones

The current and realistic treatment plan:

For the next 3 months, William will do a combination of the following:
Temador and Irotecan for 10 days in an outpatient setting.
VP16 and Carboplatin for 5 days inpatient at Sutter

Temador and Irotecan prevent the cancer cells from growing and spreading.
VP 16 and Carboplatin kill the cancer cells.

Our goals with the new plan is to accomplish the following:
*Shrink all disease to microscopic levels
=Stem Cell Rescue
*Kill the 20% cancer in left liver lobe
=Right liver lobe can be removed and Chemobilization would be done in left (remaining) lobe to kill any microscopic disease
*Stablize disease in all organs
=Remove spleen, testes and retroperitoneal mass
*Completely kill disease in lungs
=No further treatment needed for lungs or mediastina
*Radiate bone disease
=Bone marrow transplant

Once all the removal, radiation, chemo and bone marrow transplant has gone as planned, William will need to receive a liver transplant. Because of the strict FDA regulations regarding transplants, William will not be allowed to receive a transplant in the US. Basically, our best chance for liver transplant is for us to find a reputable doctor, surgeon and hospital outside of the US that would take 1/3 of my liver and transplant it into William.

As you can imagine, there is a lot to think about and a lot of information to process...

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

















Theraputic break from reality...

William and I have been in southern California with Grandpa for 48 hours and already we feel like different people. It is amazing how some sleep, a relaxed schedule and a lot of sunshine can change your entire outlook on life. 

Yesterday we spent the morning hours on the beach where William was fascinated by seagulls, seashells, and sea enenemies. William's laughter and bright smile made me realize that he needed this break from reality as much as we did.  Yesterday afternoon Granpa, William and I spent several hours at City of Hope Hospital where we met with Dr. Clarke Anderson. The meeting with Dr. Anderson was very encouraging and  extremely informative. The following are some of the main items that we discussed:

-1. City of Hope is willing to do whole liver radiation;Whole liver radiation is extremely rare and practically unheard off, but due to the miracle of some new technology that happens to be at City of Hope, Helical Tomotherapy is a valid option for destroying all the cancer is William's liver.

-2. City of Hope believes that a stem cell rescue and bone marrow transplant is William's best resource in beating this monster. Due to the reality that William has undergone 11 rounds of chemo, there is no guarantee that we would be successfull in getting enough stem cells BUT, at least they are willing to try YIPEE!!!!

-3. Ph. Balance diet has done a lot for William's body. Dr. Anderson mentioned that William's bladder recovered as well as it did because of the specialized diet.

-4. Natural supplements that we are using are probably doing more harm than good. The natural remedies that William is taking works by placing the cancerous cells in a "sleeping" or "hibernation" state. Chemotherapy is only effective against active cells and won't do anything to destroy the cells are not.

-5. The current chemo that William is on should be changed immediately. Dr. Anderson recommends VP16 and Ifosphomide as both of these drugs are aggressive in killing cancer cells and the combination is a good recipe for preparing his kidneys and bladder for stem cell harvest.

-6. City of Hope has extensive experience with DSRCT
-7.  I like Dr. Anderson and William seems comfortable with him.
-8. Patients have private rooms with beds for parents and a refrigerator.
-9. Monthly housing is available on campus at a low rate.
-10. City of Hope will be willing to transfer us in as soon as mid February.

 ------Most importantly, Dr. Anderson reminded us how amazing William's progress has been. William's tumor cell death and shrinkage is amazing and I believe that it is due to William having such good response that Dr. Anderson is so eager to help us-------You go William, I am so incredibly proud of you!!!

Tomorrow the tree of us will travel to downtown LA where we will be meeting with Dr. Marcio Malogolowkin, an internationally known oncologist that specialized in rare pediatric liver tumors. We were told by Dr. Anderson that Dr. Malogolowin provided him with 1/2 of this knowledge on Sarcoma cancers and that he is one of the best he has ever met....  I am eager to hear what Dr. Malogolowkin would suggest and recommend...

Today was our only day that was free of appointments. We spent the wonderfully warm and sunny exploring the Santa Monica pier, chasing seagulls on the beach and people watching at Venice Beach (YIKES). Venice Beach is an interesting location, that's all I am going to say about that....

Anyway, thank you for checking in on us!

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

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)

;)