Tuesday, February 1, 2011

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!

6 comments:

Anonymous said...

Such great news!!! I love the pics of Will! He looks so happy. I've been waiting for an update all day and I'm go excited for you guys!

Will,
Tyler can't wait to play with you again so I hope we can get together for some fun soon!

Kim and Tyler Armstrong

Anonymous said...

Such good news! You are to be commended for pursuing the best treatments for William. Your strength and resolve are going to be what beats this cancer. I am so hopeful for William! Best of all you will be getting a team that is willing to GO FOR IT! And not so concerened about - well you know what I mean. It will be nice to have a team on your side.
Blessings!
Kirsten

Judy D. said...

FINALLY, some encouraging news!!! So good to hear!!! Have fun on the beach and with Grandpa! Love you guys!

Mary Jo Swinehart said...

I think this is really great & I really wish I had started something like this when my Ashley was diagnosed! I really hope you get the best treatment possible!
Mary JO

Janae said...

So glad to here you guys have some good news and a few hours of fun. This sure is a hard cancer to go through. I think of you guys all the time.
we have been in Houston Tx since Dec 26th and maybe can go home ( Nevada ) Feb 12th ??? Cody has been getting radiation & different Chemo's. We can't wait to go home.
Please take care & know you are in our thought & preyers all the time.
Janae Nielson ( Cody Nielson's Mom )

Anonymous said...

Good to hear from you,Sir William!I am praying that this is the answer to our prayers. I am so proud of you and your mom. You are very lucky to have each other. By the way...watch out for those sea gulls overhead. They tend to drop things on people when we aern't looking. Sometimes I think they see a bullseye on the top of our head :o) Love you Steve and Kelly