Catching Up

I am glad Shayla posted. Things just keep going at their non-stop pace and I find it hard to keep up much of the time!

Let me first tell you how last week went with all her appointments, then fill you in on 'present day' Shayla stuff.
Lab Appointment, Visit with Dr. Chang:
Originally the Nurse Practitioner, Marni, came in to do the office visit part of the appointment, but I had to politely request Dr. Chang since we needed to discuss with her Shayla's Trek adventure. Thankfully, Marni got Dr. Chang to come in. (I told the nurses when we scheduled the appt. that we needed to speak to her Dr. specifically about the trek, but I guess schedules have to be juggled around there with so many children being seen here in Idaho). Anyway, Shayla's labs came back great.Dr. Chang was actually surprised at how high her neutrophil level was last Thursday. We told her of Shayla's trek plans and asked that the chemo scheduled to start tomorrow (7/31) be postponed until she return. I was so ready to go to battle on this and Dr. Chang said Okay! So, Shayla has been upbeat for the past week just anticipating the journey.

Dr. Chang and I had a discussion about Shayla's needs emotionally and we 3 (Jase included) decided to add another medication to her daily regimen to try to help the chemo be more bearable and edurable. It will be short-term, temporary, and low dose.

Dr. Chang also discussed her desire to have Jase, Shayla and I meet with Dr. Dorn (radiology oncologist) to consult with him regarding possible radiation treatment (remember Boston?). I asked why since we got the great news that the margins were clear from the tumor removal surgery. As Dr. Chang explained her reasons I started to get a knot in my stomach. Just the thought of needing more invasive (and damaging) treatment for my 'little girl' (sorry Shayla, you'll always be one of my 'little girls') makes me ill. Fear of the unknown I guess.
Anyway, everyone reading this probably wants to know the 'why' too. Right?

Dr. Chang explained that the 'typical' treatment for Ewing's Sarcoma calls for centimeters of clear margins, not millimeters that Dr. Beck was able to get so skillfully. With typical Ewing's cases (arms, legs, ribs), centimeters of clear margins can easily be taken when the tumor is removed by resecting a large part of the bone involved. However, since Shayla's case is in the 2% of rare cases because of the location (in her sinus), centimeters of margin just don't exist. Therefore, in comes Dr. Dorn. Dr. Chang is not a radiologist and wants an expert in that area to answer the questions like "what if radiation is done, what if it isn't, what are the risks of doing it versus the risks of not doing it, are the margins Dr. Beck got sufficient to provide a good level of confidence that there will not be a recurrence? And all those other questions. Dr. Dorn's experience is 'over 20 years', but dealing with Rhabdomyosarcoma of the face, not Ewing's. However, if you look back at the early entries in this blog, I think we mentioned that type of cancer as one Dr. Chang was originally concerned about. Apparently they are similar. I don't know if that means treatment is similar. A question to ask, I know.

I can say that Dr. Chang feels confident (I can't remember now if she said 'very') that radiation will not be needed, but wants to make sure we ask the expert. Her slight hesitancy is in the fact that there are so few cases of Ewing's like Shayla's that there is nothing to compare to, no proven protocol. She doesn't want to have to do the radiation because of the long-term, permanent damage it would cause to her sight.

So, we (the French family) walk by faith and pray that this little bump is just that, a bump which can easily be stepped around or over without much 'to do'. If Dr. Dorn feels we should go ahead with radiation, we will seek a second opinion from someone (a radiation oncologist) who has treated Ewing's in the face. Then the search for the proverbial needle in a haystack will begin. We meet with Dr. Dorn on Monday, August 11th.

Physical Therapy: Dr. Morris seems like a nice enough guy. Shayla's first PT session with him was fair. She really didn't see a need to even be there, so she was reluctant to participate in the appointment (by actually responding to Dr. Morris' questions, or offer information about her current mobility in her jaw, etc.). Her mouth is limited to an opening of about 31 cm. Normal for her age is 40-50, but closer to 50 according to Dr. M. That she was so limited surprised her. Dr. did some stretching of her jaw muscles and she had heat therapy (electrodes were attached to her cheek in 4 places) done too. She was shown a stretching exercise to do of 5 repetitions, 5 seconds each, twice a day....she didn't even open the bag to the heat pack Dr. M. gave her to warm up the muscles before the stretching, so guess how many times she did the therapy before our second trip (44 miles round trip) yesterday? None. hmph...grr... I have to remember that she is old enough to understand what she needs to do and give her the power to control what aspects she can in her treatment and cure, so this one is all hers. I just wish she would try a few stretches so we wouldn't have to commute in the road construction every week. Oh well, she is a teen and wants to do things her way, right?

Opthalmologist: Visual Field test was 'perfect'. No need to elaborate there. I guess we go back in 6 months for a check-up, depending on what Dr. Dorn says and what happens regarding radiation.

Shayla today: First and foremost, I believe Shayla is happy today. I imagine she is exhasuted too! She left with her dad and brother and 148 other youth and leaders for their 30 mile handcart trek at 10:00 this morning (after another post-op visit with Dr. Beck). The temperatures were pleasant enough that I don't think heat will be so much of a concern. I will post a few pictures of her and Jase and Jarin so you can see how they looked heading out the door. I could tell she was excited, a little nervous about her own abilities to complete the trek, but happy to be getting out of here. One thing is certain: Boise will never be a favorite place for Shayla; at least not while the reality of her cancer, treatment and cure are so fresh in her mind and consume every moment and aspect of her life! I do hope that changes since I don't anticipate Jase and I will go anywhere else!

Jase was like a little kid getting ready to go. I am glad they are going. Honestly, it will be nice to have a break from giving shots, nagging about doing sinus rinses or taking meds, or drinking enough, or eating enough....even if only for a few days!