MOMENTUM...

...the roller coaster is moving quickly now. We can see twists and turns up ahead...ahhhh, we're upside down! If you're the queasy type, this ride is the wrong one to be on!

Consultation with Dr. Chang:

Tuesday, after 12:00p.m. we got 'the call', as I had blogged. Shayla's diagnosis is in. Her actual diagnosis is PRIMITIVE NEUROECTODERMAL TUMOR (PNET), in the family of Ewing's Sarcoma. Her tumor is a soft-tissue tumor.

Why so long for the diagnosis? Dr. Chang explained that the test for Ewing's Sarcoma and all its family members is really quite simple and quick; IF you have live tissue to test. The problem with Shayla's biopsy was the lack of live tissue. Even though Dr. Beck had the pathologist present in the OR to make sure the sample was going to be effective. Unfortunately, the tissue was already dead because the tumor is so fast-growing. If I understand it right, aggressive tumors characteristically have dead tissue around them because that tissue feeds the new growth. Okay, so no live tissue meant no chromosomes to test for the Ewing's abnormalities. So, 'Plan B' was a flourescent staining of the DNA to find the little bugger that would identify it. Absolutely, with next to no margin for error.

Shayla's Response: ANGER!

Yes, we know this is a normal and healthy response! This tumor has messed up her world dramatically. The most devastating news to Shayla was not so much that she will absolutely lose her hair in two weeks, but rather that she may not be strong enough to participate in the youth pioneer trek this summer with her church group. That's when she cried. However, I must tell you that she is determined to go on this trek. Dr. Chang has not said no, but that we will see how treatment is going in July, see where she is in treatment, etc. and then make the decision. I know Shayla's determination will take her a long way in her treatment, recovery and cure, so we are grateful for her strong attitude.

Mom and Dad: we cried when Shayla left the room so Dr. Chang could tell us the 'gory details' of how chemo will affect her. Not so much due to the effects she will endure, but just because this is happening to our child, not to us. If only we could take her from this trial! But, the Lord has His reasons. He also has His strengths to give us. That is what we are functioning on now!

SCANS, SCANS, and more SCANS!

Now the ride is on 'fast forward'. We have a CT scan and a bone scan today. The bone scan will tell us the cancer is contained in her sinuses. That is what we expect and pray for. Friday, 4/10, it is a bone marrow biopsy and a spinal tap, as well as a port implant for the chemo administration.

TREATMENT:

Shayla's chemo treatment will consist of 14 treatment cycles, given at 2 week intervals. She has a 3-day regimen and a 5-day regimen. Each treatment will be administered in the hospital so she can be monitored as she progresses through her treatment and also because some of her drugs need to be administered over a 48-hour or 5-day period. Doesn't that sound like a lot of fun?!

The 3-Day Combo: Vincristine, Doxorubicin, Cyclophosphamide

The 5-Day Combo: Ifosfamide, Etoposide

All of the drugs have side effects. Shayla may have none, a few, or more of them. The most outward one will of course be hairloss (the Cyclophosphamide will do that for her ;-( She will also most likely need to be sure she drinks lots of fluids to keep her plumbing flowing normally. Dr. Chang went over all the side effects of each drug separately, so don't worry, we have the notes. Feel free to research it for your own information, however!

Family Council

We gathered the whole family together Tuesday evening to tell Shayla's siblings of her diagnosis and how we anticipate it will change things for our family. It was an emotional time for us all, especially Shayla. She opted not to be in the family room with us, but stayed in the next room dealing with her own emotions. Her siblings cried with us.

Shayla Today: Thursday

Okay, so she has cancer. She accepts that, and she will be glad when the chemo starts to work and shrink the tumor to the point that she can breathe through her nose again. She is ready to get to work. Her attitude is one of confidence, determination and no-nonsense. She opts to particpate in everything she normally does. She is not feeling sorry for herself. If anything, I think Shayla's positive attitude on this will carry all of us through this incredibly terrifying ordeal! She is one strong girl, mature beyond her 13 years. We love our Shayla!