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.