Family

Family

OUR JOURNEY

This is our family's journey- the story of our daughter's fight with cancer. Along the way, we will have some tears, lots of love, and even more prayers going up to heaven. We know that our Heavenly Father is aware of us. We know that he will help us fight, fill our hearts with peace, and send angels to give us aid. We send praise to HIM. Join us in this battle. This battle of courage, determination, and most of all faith in God that all is well and will be well.
This is where I will record my feelings- raw, real, and unfiltered. Welcome all.
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Sunday, August 18, 2013

Mustard Gas...

August was the beginning of phase 4.  Another intense phase of 2 rounds of methotrexate and then 5 days of VP16 chemo, then 2 days of high dose Ara-C.  As much as I didn't want it to begin...time marches on.   Friday, August 2nd, she made count and the methotrexate began.  After a morning surgery of replacing her central line with a port.  A port is completely inside the body; which means the risk of infection is lower and she can swim and take baths!!  But it was a long morning and her port area will be very sore for a month or so.

 Friday through Monday morning; a quick stay.  Not too bad, but it the side effects of the nasty drug that can be a dousy.  Our couple of days home, she was tired and a bit pale, but all in all not too bad.  By Thursday, I was a bit worried, my sister and I noticed a rash on her bottom.  Possibly a type of yeast infection (probably from all the antibiotics she has been on).  So I called up the clinic and set up an appointment with her doctor before she began her next methotrexate treatment later that afternoon.  We don't mess with diaper rash (diaper rash and not making counts is the only thing that will stop chemo after you have started a phase).  Our doctor didn't seem concerned and insisted that we push ahead and that we would "just slap some diaper cream on it".  So the last round of methotrexate began as scheduled.  Over the weekend through her treatment, her diaper rash got worse.  I didn't know that diaper rash could be so bad.  None of my kids have ever had diaper rash before.  Hers was bad.  It broke my heart.  She was in so much pain.  After asking about the methotrexate drug, I was told that it actually mustard gas.  That made me sick.  It was so hard to watch the "poison" being dripped into her body.  No wonder it had such awful side effects.  Then her fevers began.  Her body was going through so much.  Although she cleared the methotrexate at record speed by Sunday night, we were not allowed to go home.  The doctors couldn't figure out why she was getting fevers as her blood cultures showed nothing and her diaper rash was not improving.  By Monday I was discouraged and frustrated.  I should have pushed for them to hold the chemo...that is why I had made the appointment with her doctor.  It was so hard to see her in so much pain.  James switched me off that night.  I desperately needed a break.  Going home was nice and it revamped my spirits to fight out was ahead.  On Wednesday, while talking with a good friend, she told me that air does wonders for diaper rash.  Of course.  So I starting letting Evalette go diaper free in her crib at least 3 times a day for an hour or so.  It did the trick and her rash began to heal, along with the aid of anti-fungal cream.  Her temperature finally went back to normal and on Saturday we were discharged to go home.

 Friday was supposed to be the day we started the 5 day chemo, but we were told it would be pushed back due to her low counts, low platelets, and diaper rash.  Not sure when we will finish the phase, but I am so glad this nasty, nasty methotrexate is behind us!!!  No more MUSTARD GAS!!! YUCK!!!

Friday, August 2, 2013

Happy 16 Months


16 months of joy.
16 months of these blue eyes.
16 months of this beautiful smile.
16 months of 2 girls in the house.
16 months of lots of pink things.
16 months of precious time with this precious girl.
Love you forever and always.
Heres to a million more months of joy with you.
Happy 16 month birthday, Evalette.


We took these pictures at the end of June.  We never had a chance to get her one year pictures. And it is too hard to take her into a studio and so we did it on our own in our basement.  She was a bit grumpy that day, but they turned out cute!