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!