A Bad Case of Claustrophobia ...

The first six months of Lauren's treatment were followed by occasional CT scans and MRIs, so you can imagine my dismay when week before last she went in to get an MRI of her spine and she had not one but three panic attacks when she was being slid into the machine. Now, take into consideration that this time she had a cage strapped over her face/head to keep her head and neck from moving and was also going in head first instead of feet first, as she has done in the past. We decided that it was probably best to do IV sedation (Twilight sleep is what they call it. You are "awake" but pretty much don't care.). I reschedule for the following Wednesday and off we went. Unfortunately, as some children/adolescents do, she burned through the meds too quickly and each time she would close her eyes I would gently let go of her hand and she would automatically open her eyes and start to cry. According to the nurse, she had already given her three times the amount of what she would normally give someone Lauren's size. After four tries, we disconnected and decided general anesthesia it would have to be. Luckily they worked us in to Friday and after three crying fits of "Mom, I really can do it! Put me back in!" we left the hospital. Friday the 13th I took her in for a noon appointment an hour early to get ready for the anesthesia and was told they were running about two hours behind. Sigh. Like I am not used to that. She was finally taken into the room around 1:30 and I sat alone in the waiting room for three VERY long hours. The difference in having all of her previous surgeries at a children's hospital is that as soon as they come out to recovery, the parents are allowed in. This is not true at a normal hospital. I had to wait until they extubated her and she woke up before they would let me in to see her. Frustrating to say the least. Anyhow, we were there for eight hours and let me tell you, when Lauren is NPO (nothing by mouth), I am NPO. Needless to say we stopped for food on the way home. And I saved the good news for last ... there is NED (No Evidence of Disease) in her spine. It was all clear. So no real reason, yet, as to the tingling, but assuming it is nerve related as of now. YAY!!!!!

 Lauren in PACU - wish I would have got a video as she was telling people she loved them

We spent Saturday at a private fishing reserve in Markleeville, CA with other cancer survivors (both young and old) compliments of Reel Kids, Real Fishing and NNCCF. Lauren was set up with a buddy and taught how to fly fish from the shore of a stocked stream. After lunch, we took a ride out into the meadow, up stream a bit, and the kids waded in the water cooling off after a warm day. The beauty of being out in nature, not a care in the world, was exactly what we needed. The time spent with family is so precious and I cherish it with all my heart. I wish every day could be like that.

 Being pulled on a "make-shift" trailer out to the reserve

Lauren was supposed to have a PET CT next week to find out if she is still stable. Unfortunately the clinic called on Tuesday to let me know that Anthem BCBS is denying the study based on the fact that it is too soon since she had one only two months ago. She will have to wait until the end of August for the next scan. Now, I am trying really hard not to worry, but those of you in cancerverse know that it is important to find out if early if there is active disease. This is the kind of crap I hate about insurance companies, but if I consider appeal, it probably won't even be resolved until the end of August. So I am just going to try and relax and get to the end of August so I can breath easier.


Unlike the week that I turned 30 (I think I was drunk the whole week. Talk about not being able to come to terms with my twenties gone...), this week has been pretty low key. I guess the fact that I don't drink anymore makes it a little easier =) Ten years come and gone. WOW. Next month is my 10 year anniversary. I would be lying if I said I didn't feel 40 at times. But my kids keep me feeling young and honestly, my cup is more full than it has ever been.


I will leave y'all with a quote from Lauren on one of our sarcoma boards to all the survivors out there. She really is wise beyond her years.


"So today someone commented on a picture of mine asking if I still had cancer/going through treatment and I said yes, I will always have cancer. She said "aww, I'm sorry". I told her don't be sorry. Having cancer changed my point of view on life and I feel I am happier now than I have ever been, even with the stuff that I may not be able to do. I just want all of you to know that having cancer should not ever slow you down or keep you from enjoying every second of what you have."


xoxo
-cherri

Happy Independence Day!

Happy July 4th family and friends!

As I sit here writing this, Lauren and her friend Lexi are down at the swimming pool enjoying the sun and having a grand ole time =) These are the days I am thankful for! <3 She has been feeling really good, getting some really good exercise and PT time in and hopefully will be ready to start back to school in September. (fingers crossed)

Next steps for her will be:
1) MRI tomorrow. There will be three 45 minute scans on her spine to check for metastasis. Last week, at her chiropractic appointment, she mentioned that when she bends her head up she gets tingling in her toes. Now, this isn't every time, but it is something to be alarmed about as it could be indicative of something pushing against her spine. God forbid she has new tumors there as that IS NOT the path we envision. Please pray we get good news and this is nerve/neuro related (geez, never thought I'd be wishing for one bad thing over another).
2) Follow up PET CT. This will be scheduled towards the end of this month. If there is no new growth (and of course, the MRI results are good), then she will begin a new protocol based on some suggestions from her ND. "Stable" to us would mean that she is once again in remission (the Oncs say "stable" because there is something showing up on the scan where the lung nodules were, but they are not "lighting up" so we "assume" they are dead (can you see me putting up the quote fingers when I write this? LOL).

Her physical therapy has been going really well and we are in the market for a new device that will stimulate her nerves via the calf and help her to pick her feet up when she is walking. People reading this from the cancerverse will be nodding their heads when I mention that Lauren has a severe case of the slap foot. It's a huge side effect of chemo and the peripheral neuropathy. We are still waiting to see what, if any, insurance will cover.

The video below is of her testing out the device. Pretty cool =)

 Three drugs we are considering for next protocol are Noscapine, Tetrathiomolybdate (TM) and Parzopanib. Noscapine works via microtubule inhibition, similar to Taxotere, without the side effects.  Tetrathiomolybdate selectively chelates copper to reduce ceruloplasmin and inhibit cancer related angiogenesis. It will work best once she fully returns to a state where there is no evidence of disease. Finally, Parzopanib in a non-cytotoxic targeted agent that was recently approved by the FDA for use in metastatic, treatment resistant sarcoma.

I will try to post on Friday if we get results from the MRI that soon. Please keep us in your prayers. I have asked before that you all also pray for Ariel and for Clayton. Ariel's journey has become beyond complicated and she and her family are in need of some prayer and positive energy. Clayton's family is spending each moment loving and kissing on him, knowing that a miracle needs to happen soon.

Also, I would like to offer my deepest sympathy to the White family. I mentioned Cynthia in my last post. Cynthia earned her angel wings last week and I know her family is hurting and still have many questions as to why and how this could happen. I have no words of comfort except to just know that cancer did not win. Cynthia did. She is now cancer free, running and playing in the fields of Heaven for eternity, waiting until one day when she is reunited with her family.

I hope all of you are having a wonderful holiday spent with family and friends making amazing memories. Love you all!

peace and love
-cherri