Those first days

after Shaylee's port was placed were - - crazy. I can distinctly remember the FEAR, the uncertainty and unknown. I'm sure that sounds redundent but there was just so much we didn't know! We didn't know that the surgery would take an hour longer - WITHOUT anyone telling us why at the time! We didn't know she'd react to the codeine and start seeing and hearing things that weren't there - a man in the window who was out to get her, the cat that was going to eat her (and this is a VERY placid laid back cat!), all the agresssion and anger she showed. Stopped the codiene, and the behavior stopped - only needed regular tylenol once but my it was easier on everyone!

I remember my father in law came to visit right after her port was placed (did I mention that was done the day before our anniversary??) for the first time since either of the girls were born. He'd never met our girls, but this was enough for him to come out to see them. I remember the look on his face when Shaylee showed him her scar and bruise from the port placement, and how very gentle and protective he was of her after that moment. To this day, he's always extra gentle with her. He told me just before he got ready to leave to go back to Colorado that he didn't know WHY he'd waited so long to come out (it had been almost 3yrs I think) but that it would NOT be that long again....and he has come out once a year since then.

I can remember the fear of knowing we were choosing to put all those chemicals into her little body - and the fear of what they'd do to "SHAYLEE" the personality. At that point, we'd talked to all the doctors, we knew all the risks - both of doing the chemo and NOT doing the chemo. We'd talked to our family, prayed, so many things. Now it was almost time to start the real part, the hard part of the journey. We posted on Sept 11th about being close to starting time.....

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Thursday, September 11, 2003 3:54 PM
Today is Shaylee's big brother Thane's birthday! Happy Birthday Thane!!!!Shaylee has been doing good. All the steri-strips came off without any problems. She is MUCH more comfortable talking about her port now and will show people where her surgery was. She talks about going for surgery, and how she's going to the doctor for her medicine soon, and they'll put it in her port. Its a real relief to see her more comfortable with it. I know this isn't going to be easy but it is comforting to see her adapting. She's an amazing girl.Her first Chemo treatment is next Tuesday, on the 16th. I think we're all a little nerveouse about it. How can we not be?? Daddy and I will take her to the hospital and Grandma/Grandpa will come stay with Narissa and be here when the boys get home from school. We are blessed to have them so close and willing to help. Its a big relief to know the kids are taken care of.Will update agian when we can. Many thanks for the prayers and love.

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James wasn't working at the time, things were VERY very tight financially, but I'm so greatful that it worked out that he could come to the first few appointments with us. It made things "easier" in many ways. Its funny - not "haha funny" but "hmmm, strange funny" the way things happen sometimes. Just before time to go in for her first chemo, my dad ended up in the hospital. He had an IV, the whole shabang. So when the time came for Shaylee's chemo, the IV and pole were familiar, and she was comfortable with them......... That helped alot! She was still a bit scared, and did NOT like the "poke" of them accessing the port site, but that was mostly fear of the unknown and unfamiliar. I remember wanting to cry, but not being able to because I didnt' want to upset Shaylee...............

First post

I guess I should back up...... At some point towards the end of 2002, we noticed that Shaylee's left eye was protruding a bit more then her right eye. Beings as she'd be diagniosed with Neurofirbromatosis when she was about 6months old we knew we needed to have her seen right away. She was due for her check up anyway, so we mentioned it to the doctor, who commented that they hadn't noticed it - until we said something. Appointments were made with the pediatric opthimologist and for cranial MRI focusing on the orbits (that means they wanted to look at her head, especially the eyes).

The MRI was in December. December 31st about 2:30 pm we got the call from the doctor. There was a tumor. It completely surrounded the left optic nerve (the nerve that sends the signals to the brain), involving the chiasm (where the right and left nerve cross as they enter the brain) and "looks like it might be involving the right optic nerve as well". It was all I could do to finish the phone call. But you know what? God was taking care of us even then, he'd placed special people around us. Our regular pediatrician was out on maternity leave, and the boys old pediatrician who'd retired was covering. So Dr B was the one we'd seen and who called with the results of the MRI. His neice has NF, so he KNOWS first hand what was involved. He called and schedualed all the appoitnments we needed himself, so we wouldnt' have to deal with things. Personally, I think Dr B was an angel placed by God to help us through those first terrifying moments and days.

What a way to start a new year, doctors appointments with doctors who had scary titles such as "oncologist". We had our first meeting with the doctors up at the clinic. Again amazing people. They showed us the MRI films and explained what they showed, what they'd mean for Shaylee. After talking with them, it was decided we'd "watch and wait" for a while. Based on the opthimologists exam they didn't think it was affecting her eye sight at that point, and they'd prefer to wait a bit, to see if the tumor was growing. We'd have a repeat MRI in two months, and then review. ....

Two months later, the tumor has grown a bit, but we'll watch and wait abit more.....repeat.

Nine months after that, the tumor continues to grow - but now the opthimologist feels it IS impacting her vision and the decision is made to start chemo. I honestly don't know the words to tell you the fear of that. The uncertainty...IS it the right choice?? Do we have the right to choose something that could, downline give her secondary cancer? Something that could cause her to have fertility problems? Not to mention a host of other possible side effects. But what if we choose NOT to? Minimum, she'll loose vision in her left eye (questionable even then what quality of vision she had), possibly loose vision in both eyes, and if not treated who KNOWS where else in her brain this tumor will extend to. Surgery is NOT an option because of the location......Chemo is the most logical positive option. Its a version of hell knowing your going to be poisoning your child in effort to save them.

The port for recieving chemo was placed on August 20th. Here is our first posting to the caringbridge site that we created to share with friends and family.

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Tuesday, August 26, 2003 9:41AM PDT
Well, thoguht this might be slightly easier way to keep in touch with so many of our online friends. Shaylee had the surgery to place the port last wednesday. UGH! Took an hour longer than they'd thought, they had some trouble accessing the vein they'd wanted to use and ended up using the one in her neck instead. She did really really well all things considered. HOWEVER, we will NOT be giving her tylenol w/ codeine again! Oh my word!! YUCK, I do not like how it affects her at all. She was scared of EVERYTHING and having visual "disturbances" (read Seeing things not there) and was angry about everything. It was not fun for anyone. She didn't seem to be in pain really so we stopped taking it and our SWEET Shaylee was back the next day. WHEW!She's healing well. Her bruise is getting better. The steri-strips are starting to curl up, so they'll be off in a matter of days. She's a bit shy about it, doesn't like people looking at it, although she did let me help wash it off last night in her bath. Shaylee continues to amaze me with her spirit and her openess to go see all the doctors etc. She's an amazing child!

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Life Means So Much....

Every day is a journal page
Every man holds a quill and ink
And there's plenty of room for writing in
All we do is believe and think
So will you compose a curse
Or will today bring the blessing
Fill the page with rhyming verse
Or some random sketching

Teach us to count the days
Teach us to make the days count
Lead us in better ways
That somehow our souls forgot
Life means so much
Life means so much
Life means so much

Every day is a bank account
And time is our currency
So nobody's rich, nobody's poor
We get 24 hours each
So how are you gonna spend
Will you invest, or squander
Try to get ahead
Or help someone who's under

Teach us to count the days
Teach us to make the days count
Lead us in better ways
That somehow our souls forgo
tLife means so much
Life means so much
Life means so much

Has anybody ever lived who knew the value of a life
And don't you think giving is all
What proves the worth of yours and mine
Teach us to count the days
Teach us to make the days count
Lead us in better ways
That somehow our souls forgot
Life means so much

Every day is a gift you've been given
Make the most of the time every minute you're living

This is a song by Chris Rice, it also happens to be one of my all time favorite songs. The last few years have been, in a word, HARD - but like this song tells us LIFE MEANS SO MUCH. Simply being 'alive' is a gift, and I can tell you after watching my daughter go through 60weeks of chemo, LIFE MEANS SO MUCH.