Tuesday, February 21, 2012

My Rose in the Rain

Well we made it through her 28th anesthesia with flying colors.  She woke up happy and hilarious.  At one point she had 3 people standing around her bed staring at her and oohing and ahhing over her.  She was as high as a kite.  Luckily she drank some juice right away and so we were able to get to our oncology appointment rather fast.  We made up to the clinic and were only 15 minutes late.
The oncologist came in and told us that there was minimal growth from her tumors.  We haven't gotten final results yet but the preliminary results show anywhere from 1 mm to 3 mm growth.  Doesn't sound like much but when you are comparing it to only 2 months ago and the fact the tumors around vital organs in a very small child, that growth was not what we wanted.  It wasn't all horrible though.  It could have been worse.
We were then told that the neurosurgeon wanted to meet with us to discuss her next surgery.  He went over the results even more in depth with us once we got to his office.  He wants to do surgery in the next couple of months to remove the tumors at the base of her spinal column.  He is worried if we wait too long, there wouldn't be much time between her showing symptoms and it being too late to do anything about it.  The only hold up with this surgery is if her urine levels are elevated again.  In that case then we would have to look at restarting chemo before the surgery.  At that point, surgery would become a minor issue and the chemo would take precedence.  He also talked about doing maintenance chemo after her surgery to try and stop any growth.  There really is nothing they can do though.  Once we do this last surgery, we will have gotten to the last of the tumors we can surgically remove.  Not to mention the fact that these tumors are not removed completely.  She still has tumor outside of her spinal column in the cervical spine and will have tumor left over in lower spine after this next surgery.  This tumor is still growing and will eventually grow back into her spine.
I don't really like the idea of restarting chemo.  I have said from the beginning that my stance on LIFE is quality over quantity.  I'd rather have 5 enjoyable years with her than 10 years where she is constantly sick from chemo, frail, and in pain.  Turns out that I don't have to make that decision right now though.  Today my biggest decision is whether or not I start a load of laundry.  My reality is that my child will die before me.  I can never imagine thinking that about Braden but I have faced reality with Kendall.  In a sense it is freeing because it takes away all of the worry about if she will make it.  I don't imagine her in kindergarten, grade school, or high school.  I just think about today.  You may think this is a negative way to live but I have to tell you it is not.  It is simply freeing.  It shows my true beliefs in what lies after death.  I 100% believe that she will be in a better place.
On another note, her diarrhea has increased 100%.  I'm hoping and praying it is just from her antibiotic.  They have done that to her in the past.  She is still keeping her food down, so that is good news.  For now I am just waiting for the antibiotic to be finished.  If she's still have diarrhea after that then I will retest her stool.  The test is way too expensive to do right now when I know this could possibly be from the antibiotic.
She is also still sleeping horribly.  We are once again working with the palliative care team to tweak her medications.  I'm not too hopeful that the new doses will work but we will see.  Matt and I are beyond tired.  My energy level for Braden is running at about 0.  It makes it so hard to be a fun mom when I'm exhausted mentally, physically, and emotionally.  THe poor kid doesn't get to do anything anymore.

To explain my title.  Kendall is truly my rose during the rainstorm.  She has everything stacked against her. Her insides are just plain ugly with all of her nasty tumors.  Yet, through it all, she continues to be beautiful.  Her smiles inspires me to fight through the storm and keep my eyes on the sun.  No matter what is going on in the rainstorm, the sun is always there just waiting for the chance to peak out.  The clouds will fade away and the sun will shine bright once again on the rose.  The rose will then again grow from the rain and the sun.  Kendall will be healed one day.  God will use the rain to mold her and be the sun that saves her.  Until that day, I will keep looking for the glimpse of the sun to help me through the times of the rain.



  1. That's just beautiful, Stephanie. I think what you've said makes sense, and it's a true testament to the strength you have as a family. I see that little smile once and I'm completely taken with her....I can only imagine how wonderful it is to get to see it more often. It's worth it...the fight...

  2. Stephanie- My name is Tracy Galloway and I was referred to you site by Anita. My daughter has NF2 and she is 19. I am so sorry that you are having to deal with this with your girl at such a young age....I get every and understand every word that you have written, and no, you are not being negative. Acceptance is freeing..I wish there was something I could do to be supportive. I am on the board of CTF and I also am constantly meeting with researchers, etc. trying to find treatments that offer our children a better quality of life. God bless Stephanie. Please try to find a moment here or there for yourself....take care...best- Tracy

  3. Steph, I thought of you instantly when my cousin posted this on her facebook and thought I would share it with you after this very touching post. Please know we are constantly thinking of you and praying for you and your family. My cousin has lost both of her babies, her baby girl to SIDS and her little boy to cancer...

    This is from another DIPG mama.....I must share! "I was listening to a sermon this morning about the little girl who died in the bible. Jesus took her by the hand and said to her, "Talitha koum!" (which means, "Little girl, I say to you, get up!") And immediately she woke up and was healed. It was not this that struck me. But what the preacher said next. He said to all those parents who have lost a child and prayed to Jesus... yet your child died. You may ask why? Why did Jesus not heal your child as well? As it was explained, in this bible story Jesus had compassion on the parents. But in stories like mine, when a parent's child dies ... Jesus had compassion on our children. Heaven is the ultimate goal." Thank you Janna for shaing this!!!!

  4. Copied quote: "It takes rain and sunshine to make a rainbow." The Lord will continue to give you the strength for every trying hour for He never slumbers or sleeps and He has great compassion for you.

  5. I am so glad she did so well with the anesthesia. We are still praying and will continue to pray for healing, for pain free moments and days and weeks and for wisdom. God is with you, and He will sustain all of you.

  6. Hi Stephanie, I'm a close friend of Keli's and she has kept me updated on Kendall. Your strength is so inspiring. I'm sure you have your moments but the clarity in your words makes me believe without a doubt that you are Kendall's gift here on earth. What an amazing mom you are. Thank you for sharing and inspiring and I will continue to keep your family in my thoughts and prayers. Nicole