Tuesday, February 28, 2012

Sleep

Kendall has been sleeping horribly.  We have increased her medications again as of last Monday and she hasn't changed at night at all.  If anything, she's even gotten worse.  I finally decided to try melatonin last night.  The palliative care team wanted me to hold off because we all still believe it is more of her being uncomfortable with nerve pain or itching.  I went ahead and did it anyways because we are desperate.  Unfortunately, it seemed to have the opposite effect on Kendall.  It is leaving me stumped because I've never seen anyone react to melatonin like this.  I gave it at 7 pm right before her bedtime.  She went to sleep like normal.  (Going to sleep has never been the problem).  By 9, she was playing in her crib as happy as could be.  I brought her into our bed because I knew she would start screaming and wake up her brother if I didn't.  She didn't go back to sleep until after 10.  She was so excited, happy, playful, funny, and cuddly while she was awake.  I gave her another dose while she was awake, hoping this one would do the trick.  She slept for about 3.5 hours and then was up every hour for the rest of the night.  LOVELY!

I have been picking up a few half shifts at work this week to bank a little extra PTO for her upcoming surgery.  I'm hoping I can survive my full shift tonight and half shift tomorrow night with little sleep from last night.

On another note, her cdiff is back.  I'm not 100% yet but I dropped the stool off at the lab this morning.  I'm still hopeful that it will be negative, although reality is staring me in the face.

I'm waiting on a date for her surgery.  I've requested sometime at the end of April.  My first option would be never but since we have to, April would be nice.  I just want to get her recovered before summer.  Last summer was spent in and out of the hospital.  It would be nice to be able to enjoy a few months with her and Braden together.

Keep your fingers crossed I can survive my work week.  Also pray that Matt survives more sleepless nights.  He is just as exhausted.

Love,
Steph

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.

Love,
Steph

Sunday, February 19, 2012

MRI # ??. Even I Can't Remember this Number Anymore.

Tomorrow is Kendall's big day.  Her formula feeds get shut off at midnight and her clear liquids get shut of at 0600, which is about when we leave.  Tonight we start preparing by taking Braden to a friend's house to stay the night.  Anymore, it isn't even something we talk much about anymore. The day comes, and Matt and I both know our roles in the morning.  We have a routine for packing for all day trips down to Cincinnati. Luckily, this time he is coming with me.  I'm glad because I have a feeling we are going to be making some changes with her care.

I can't really even explain the worry.  I can't even say it is worry.  We know she is full of tumors.  We know her tumors are growing.  We know she needs more surgery.  We just do these scans to appease the doctors and help them determine when she needs her next surgery.  Her oncology doctor is still searching for the cancer.  He will redo the urine test to check for an elevated HVA/VMA, which would again lead him to believe even stronger there is still cancer in her, growing, somewhere.

Kendall's sleep has been worse than in the past.  If I think about her demise from sleeping, it all started about the time she had her surgery to remove her bladder.  In fact, I can say that she has not slept through the night more than I can count on one hand.  On average, she is up about 5 times a night now.  It is not just moaning and fussing, it is screaming so loud like something is immediately wrong.  As soon as we go in and turn her, she is fine.  We are racking our brains trying to figure out a solution.  We have bought her a memory foam pad for her mattress.  We have tweaked her meds.  We have changed the way we do her feeds.  None of it has made a difference.  Part of me wonders if she is having nightmares or is scared when she wakes up.  The last time she slept through the night was when we were in Daytona and her and Matt shared a bed.  Funny thing was that I worried she wouldn't sleep at all while we were there.  Turns out she slept the best while we were there.  So it was either sleeping with Matt or it was the healing nature of the ocean air.  I wish I could test the second theory out right about now, but I don't really think that is possible seeing as we are stuck in cold Indiana.  As far as the first theory goes, we can't really test that out either because our bed is just not big enough for the 3 of us.  I have a feeling that where there is 3 of us, there will eventually be 4.  Braden wouldn't want to miss out on the fun.  Hopefully we can find a new solution to try or an answer as to why she will not sleep.

I thought you might all enjoy this video of Kendall.  Matt made it this morning as I was recovering from my night at work.  You can get a really good view of her left leg and what I am talking about with it.  I have just noticed over the past few days that the left leg is about 1.5 inches longer than her right.  I'm guessing the reason behind this is that all of her blood supply to her left leg is being fed through her plexiform tumors.  This means her legs is getting different hormones and really an entirely different blood than the rest of her body.  Her geneticist warned me that it would be possible for this leg to grow differently.  So I'm picturing her as a teenager with a long leg that she drags behind her.  YIKES!  Another reason why I don't think she needs this leg.  Anyways...this video also shows how she is starting to get around in the kitchen.  She isn't able to scoot the car on the carpet yet.  At this point I'm ready to rip up all of the carpet and just put hard flooring down for her.  My second thought is to just sell the house and start over:)
video

Please pray that she handles everything well tomorrow.  I'm hoping for a happy awakening from anesthesia.  Also pray that we come back with some good solutions for her sleep.  The urine will take a few weeks to come back so we will not hear right away on that.  We will probably get results from her MRI at our oncology appointment at 2:30.  They are usually pretty fast.  Once they told me we would have to wait a day and I just laughed.  Next minute we had the results.  I love Cincinnati Children's.  Worst case would be the following day for results.

Thanks for all of the prayers!

Love,
Steph

Thursday, February 16, 2012

The cycle continues

Kendall woke up Sunday morning with a fever of 101.3.  She was very cranky most of the day and slept more than usual.  I noticed too that her urine was extra strong smelling.  On Monday I was able to cath her and take the urine to the lab.  She has another kidney infection.  We have been waiting for the culture and sensitivity to come back so we know what antibiotics to put her on.  I believe it just did because the pharmacy called with a new script.
It seems the cycle is this:  Kendall's cdiff returns.  We treat with Vancomycin for 8 weeks.  Cdiff is now better.  Then kidney infection comes.  We treat with antibiotic.  Then cdiff returns from antibiotic usage.  It is just horrible.  Meanwhile, she has to be in pain and uncomfortable this entire time.  She just can't seem to catch a break.
My stress level seems to be climbing a bit.  I never feel like I can get it all done.  Kendall doesn't enjoy it when I leave the room so while she is awake, I am usually stuck by her side.  Our insurance has recently changed and I've been trying to work out the kinks.  It can all just get overwhelming at times and I feel like there is no time left to enjoy life.  Kendall consumes every ounce of energy I have (which isn't much when you are a night shifter).
Please pray that her scans stay on schedule.  Braden woke up this morning with the start of a cold.  If she catches it they won't sedate her on Monday.  I've tried sneaking it past them before and so far it has worked.  Now that she's older it may be harder to hide.

Sunday, February 12, 2012

Cupid shoots and scores for Tumors

Had to give a quick update with this news flash.  Yesterday, we were lucky enough to participate in the 2nd annual (1st year in Cincinnati) Cupid's Undie Run.  This is an event started in D.C. that has spread to 5 cities across the country this year.  It's sole purpose is to raise money and awareness about the Children's Tumor Foundation and NF among people who have absolutely no connection to it...that is, until they strip down to their undies!

Let me back up to my second sentence before I go any further here.  By "participate" I do not mean that I stripped and took a mile run in 20 degree weather.  I was fully clothed and manning the registration tables.

After the race was over, I was assisting in distributing people's belongings and holding up a brick wall.  Too bad for us, some people weren't so quick to want their belongings back (i.e. get dressed) so this task took a little longer than anticipated:)

Matt had the duty of watching the kids before the run.  We had 4 NF heroes there that were introduced about an hour before the runners went outside and stripped to their undies.  For those that CAME to the event in undies, Braden had his DS and was instructed to play it until told otherwise.  After the kids were introduced to the crowd, Matt came to the rescue and took our kids and the Markland kids back to the Markland house where he used his hypnotic powers to erase every memory of the day from the kids' brains...or at least I hope:)

Well, to sum up a very fun filled, entertaining, and energetic day, I am SOOOO excited to say that the event raised $400,000 nationwide for the Children's Tumor Foundation.  Yeah UNDIE RUN!  Everyone did such a wonderful job of fundraising.  Thank you so much to Justin from Crossfit, who planned the Cincinnati run.  He did such a fantastic job!!

Thursday, February 9, 2012

Almost on the move

Kendall has started to discover a way to be mobile (with a little help from us.)  She is learning how to scoot her right leg while she is on this ride on toy.  As long as we are on the kitchen floor, she can move it with the right as the left just drags alongside.  It is almost as if she doesn't even realize her left leg is even there.  Today she moved about 3 feet before getting mad and wanting up.  She just so happened to make it to the wall and guess who has to now baby proof the kitchen outlets!!


Kendall has been working very hard at building her upper body strength.  We have made a little progress in this recently.  Today Kendall was able to hold herself on her hands and knees for about 5 seconds.  I know this doesn't sound like much but trust me, it is huge for her.  It is really important we build up her arm muscles for her to be able to get around.  In order for her to learn to move from a chair to the floor, she will have to be able to use her arms to bear her weight.

Nights are still a little difficult around here.  She is usually up about 3-4 times a night.  Matt had the wonderful idea of buying a memory foam pad for her crib.  It should be here in the next week.  Her crib mattress is very hard and it could possibly be uncomfortable for her at night with her painful tumors.

Kendall's next scans are quickly approaching.  We will have to go back to Cincinnati on the 20th.  She will get anesthesia for the 27th?? time.  The best case outcome would be to hear the word STABLE.  We have yet to ever hear that in Kendall's life.  If the tumors in her spine are still growing or have started growing faster, we will have to move up her next surgery. If they are stable or slow growing, we will still be on schedule for waiting until spring for her next surgery.  Also, she will be doing another HVA/VMA to test for neuroblastoma.  The last two tests have been elevated but the doctors have not been able to find the cancerous tumor.  Please pray that they are still unable to find it.  I am believing 100% that the levels will be back down and we won't have to even consider cancer again.

Thank you everyone for all of the prayers.  I love reading your comments on caring bridge and here.  The benefit to this blog is that I can actually respond to your comments!  I sometimes didn't like that aspect of caring bridge.  Next week is a big week for Matt and I.  We will be celebrating our 8th wedding anniversary.  Recently, Kendall has spent a few hours with my sister while I had errands to run or training at work.  Each time Kendall managed to survive (and so did my sister) without any tears!  Matt and I may actually get to go on a date for our anniversary.  Crazy huh?!

Love,
Steph

PS.  Had to add in here that the reason she has such a serious face in the pic where she is sticking her finger in the light socket is because I had already told her "NO" about 10 times.  This is her "I do what I want" face!!  Lord help me when she is 16!

Wednesday, February 1, 2012

Racing 4 Research

We all had a wonderful time in Daytona and at the 24 hour Rolex race.  The kids made it through 9 1/2 hours at the track on Saturday.  Matt and I actually had to drag Braden away.  We bribed him with go carting.  Kendall took an hour and a half nap at the track once the racing started.  Our tent area was right next to the pits.  Needless to say, we were VERY close to the action and the noise.  Leave it to her to fall asleep as soon as the cars start.
Before the race started, we were able to go back to the garage and see the car and the drivers.  We found Kendall's name on the car and Braden signed her name next to it.



Kendall also got a chance to sit in the car.  I knew she would cry but it will be cool to get a pic of her in it every year.  She did not enjoy a single second of being in the car.

Saturday night Kendall slept better than she had in awhile.  I think we wore her out so much that she didn't even have the ability to wake up.  Sunday we woke up to the disappointing news that our #4 car was out of the race and in the garage.  On Saturday, the #4 car suffered a little fender bender from another car that spun us out.  After a few minutes past, the driver was able to get the car back out on the track.  Unfortunately, the car's engine had a crack in it.  They drove it for a bit longer but then had to pull it off the track for safety reasons.  After breakfast on Sunday, we spent a few minutes on the beach then packed up and headed back out to the track to show our support for the #4 team.  We went to the garages to give the car our best wishes for a recovery and were lucky enough to run into Ryan Eversley.  He was nice enough to take a picture with us and our NF hero.
Sunday at the track, Kendall didn't last that long.  She was a little more sensitive to the noise and was burying her head in my shirt every time a car sped past.  We only spent a little over an hour on Sunday at the track and then headed back to Orlando to visit Downtown Disney.  As soon as we put Kendall in her car seat and took off, this is what she looked like.
Sunday for lunch we had to eat fresh seafood since we were at the beach.  We went to the closest marina and found the tastiest looking restaurant.  This is a video of Kendall eating her ice cream.  She is getting so independent that she didn't want me to feed it to her with a spoon.  This was so funny to watch.
video

Overall, it was a wonderful trip.  We will definitely be back next year.  The Children's Tumor Foundation was successful in raising over $600,000 for research over the weekend.  It was awesome to be a part of it.  The entire staff of CTF made us feel so welcome.  I had such a great time seeing everyone again and introducing them to my family.  Braden became best buds instantly with a few of the other NF kids that were there.  It was so great for me to be able to explain to him that the other kids have NF like Kendall.  I think it helped him see that other kids are living with NF and are doing great.

Thanks everyone for checking up on us.  Please continue to pray Kendall's sleeping improves.  She did so well during the trip but is now back to waking 3-4 times a night.  I think right now she may be cutting a tooth.  Our next trip to Cincinnati for her MRI is in a few weeks.  We will have made it 2 months without returning.  That is the longest she has gone in her life.  Amazing!!

FUEL THE CURE!!

Love,
Steph