Thursday, June 19, 2008

Going Forward

Ok...so yesterday was a pretty groggy day for Lisa, they gave her anesthesia and did the MIBG scan. The bad news is it lit up pretty much everywhere, meaning she has cancer cells in many, many places...her spine, clavicles, ribs, pelvis, legs, shoulder....the good news is because she lit up almost all the areas, she doesn't have to get the second scan done today (probably because there is nothing left to light up). She was pretty cranky after and didn't eat much.

The 5:00 meeting went well. Thank you so much to Uncle Tony, Larry and Matt who joined us as extra ears and brains to help us decipher. Dr. Castle did a very good job of explaining the cancer and the treatment options available. Basically there is a standard of care and a trial standard of care (it has been well tested and many of the doctors believe this will become the new standard in the future). Both treatments involve 6 cycles of chemo which take place every 21 days. The standard vs. trial differs in the "cocktail" of drugs they give. With the trial, the drugs (which have been used for years) have proven successful in treating other cancers. If the chemo is successful in shrinking the tumors, we then will go back to the drawing board to figure out the next steps. There are some other options out there, but Docs/researchers are not as solidified on what is the best way to beat it. They have the tried and true standard which statistics show as only 20% successful, but there are some other options available that we might want to consider. At this point, we will cross that bridge when we get to it.

So....today should be an easy day for Lisa..and according to Mike who was with her last night, she's up and about. She will be seen by a dentist to get cavities filled (could lead to infection if not taken care of) and to get hearing tested for baseline readings.

I will be adding a link for those of you who would like to read the treatment plan in detail. The first pages give really good explanations about the phases of treatment.

Please keep up the prayers....the chemo will last for about 5 mos and while aggressive, it really is the easiest portion of the treatment. If Lisa responds well to it, her fight is far from over, because the next phases are much tougher.

Again, thank you to all of you for your prayers and help. We could not do this with out everyone's support. Many of you have provided meals and gifts and we are truly grateful. I've heard that some of you are feeling bad because you've not had a chance to "help out", don't despair, just by reading and posting to this blog you are helping us by reminding us we are not alone. Meals and other things we need will most likely be ongoing for this long, tough battle. While we are adjusting and starting to find our new "normal" we still need your love, support and help.

Thank You

P.S. A special thank you to my co-workers at Borders. They have been awesome! Their thoughts and concern have helped me get through the day. They are doing everything they can to help me cope with my personal life, as well as, supporting me in my work responsibilities. I am so blessed to have joined Borders when I did....you guys are great!

3 comments:

Anonymous said...

Dear Linda and Mike,
Sounds like you have a wonderful team to support you. Know that we continue to keep Lisa, your family, friends and the Doctors in our prayers. May God give you all strength and faith in the months to come. Dr. Castle sounds like a wonderful doctor. I checked out her biography at Mott. Did you know that she did her residency at McMaster University and Neuroblastoma tumor biology is her research interests? Its as if God knew you would need her one day.

The Kreagers

BookMama said...

Somehow I didn't know about this until late this afternoon. I knew about the leg pains, we've talked about them several times, but I didn't hear about the diagnosis until today. What a shock that must have been (and no doubt still is).

It sounds like you've got a great support network at home, and I know you have good support at work. Please, please let me know if there is anything I can do for you, work-related or otherwise.

And thanks for setting up this blog so that we can keep up to date without making you repeat everything multiple times a day.


Andrea S-R

Anonymous said...

Dear McMaster Family,

We want you to know that you continue to be in our thoughts and prayers. I (Ashley) have always had an interest in pediatric oncology and I know kids with the same diagnosis as Lisa that have beat the odds and continue to do so. With God's help, anything is possible.

Love,
Ashley (McMaster) & Luke Loboda