Cryogenetics, Gene Studies, and appointments

THE GOOD NEWS OF TODAY IS.....
Shayla is doing well, was able to play both the trumpet and French horn tonight at a concert without too much trouble; it was a beautiful spring day in Boise!, Dr. Beck called with no new information, but more detail about what we do know and what the experts are looking and why.

Phone Call from St. Luke's MSTI

Call came in this afternoon from MSTI. I thought it was the call, the one that would tell us what Shayla is dealing with so we could get rolling, but not so. Dr. Chang ordered a 2nd CT scan and a bone scan to 1) compare with the first CT to monitor for changes, if any, in the tumor and 2) make sure there is no metastasis, or spread to other parts of the body. Shayla is scheduled for both scans next Friday. Lucky her, she gets to miss the whole day of school. (luckily it is a half day!)

Call from Dr. Beck
Dr. Beck called around 5:45p.m. to see how we were doing. I told her I am starting to go a little crazy with the waiting to find out what this tumor is. She sympathizes with us. However, there is a little more clarification and detail Dr. Beck shared that helps understand where we are now, so I will share that:

First off, Shayla has stumped the experts at University of PA, Pittsburg! They have not been able to positively identify this tumor. They are performing Immuno-stains on the biopsy material for all sarcoma (there are apparently many, many types out there). Tomorrow Dr. Barnes and his team will be doing some genetic studies to try to pinpoint the true identity of the tumor. One thing Dr. Beck did say was that Dr. Barnes will look more closely at Ewing's Sarcoma. This does not mean Rhabdomyosarcoma( a name Dr. Chang suggested last Monday) is ruled out, nor is inverted papilloma (but Dr. Beck is "pretty sure" we are not dealing with a benign tumor anymore).
[Now please, don't go "Google-ing" those terms and then email us with all the bad news!]

What Dr. Beck does know about Ewing Sarcoma is that it is a muscular tissue tumor. This is the first time she has encountered it, and will be researching it tonight so she is prepared should that be what this turns out to be.

Time for some specific prayers tonight and tomorrow: please pray for Dr. Barnes and his team specifically, that they will be inspired in their choice and direction of testing tomorrow so a positive ID can be made and we can move forward with treatment. I told the kids I imagine Dr. Barnes having lots of dreams tonight inspiring him to do the right tests tomorrow. It could be a sleepless night for him. ;-)~but not so sleepless that he can't work tomorrow!

Dr. Beck showed Shayla's first CT scan and MRI to Dr. Churney today (neurosurgeon). Dr. Beck said he is willing to help out on Shayla's case in whatever way he can. I asked if he thought it looked like the tumor had moved into the brain tissue and Dr. Beck replied that Dr. Churney is convinced it is not in the brain. A positive thing to hold on to! Dr. Beck also said Dr. Churney gave the suggestion that the blood to the tumor be embolized prior to surgery to reduce or eliminate the amount of blood loss during surgery for removal of the tumor itself. Embolizing the tumor would, in essence, kill it (but not eliminate the threat, you understand), making it less messy, I would guess, to remove.

Thinking Positive:
Dr. Beck expressed her confidence again that Shayla's tumor is treatable and cureable. We just need to get a proper name on it so we can begin the process of getting to the end of treatment and cure! I am grateful for the confidence both Dr. Beck and Dr. Chang have expressed to us. I told Dr. Beck there are people praying all around the country for Shayla, so there will be some extra help for the doctors when they need it! Dr. Beck indicates that treatment will most likely consist of chemo, radiation, and surgery. To what extent and in which order will be determined by the diagnosis. What we don't want is a 'best guess' diagnosis. A specific, 100% positive ID will make sure the best possible treatment plan is developed and carried out for Shayla. So, pray for specifics, please!