Saturday, January 21, 2012

Running the race

I've never run a marathon, but I have run some pretty tough races.

The one I'm in now is no exception.  It is by far the hardest race I've ever been in.

Right now I feel like I'm not quite close to the end, but have made it past the half way mark.
Still at a point where quitting is possible, but haven't yet received the exhilaration of knowing the end is in sight.

Each race I've ran in, I have never quit.  Never given up.  No matter how badly my knees are aching... trembling... and at some points, not even bending.  I managed to see it through to the end.

My knees are aching now, and if I stop I know they will become even more painful and it will be impossible to start running again.

Yesterday was a long hard day.
I woke up with Tenley and we got our day going by ordering some breakfast and turning on Disney Junior.  Our nurse came in, one we've never had... but I could tell she was going to be great.  I could tell just by Tenley's coloring that she would probably be getting some blood.  Her hematocrit had been getting pretty low, and when that's really low, red blood cells are in need.  We also had to change her dressing over her central line.  It was coming up on the bottom, so it needed to be replaced asap.

Tenley was doing really well and hardly cried when we started taking off the old dressing, but then she decided she was getting sick of it and started to scream and yell.  That turned into her coughing... then gagging... then throwing up.  All while her chest was exposed.  Thankfully I had her head tilted away and we rang in another nurse to help us.  We got the job done, but this was just the beginning...

After the food came, Tenley was back to feeling happy and we began eating.  I ordered one of my kids favorites, "sparkly toast."  We named cinnamon sugar toast this when Taryn was little.  Tenley ate two whole slices of the stuff!  Yes, I was so happy.  She has been on a calorie count for the past few days.  Knowing her counts were heading down, and her appetite would be as well, the nutritionist asked us to write down every little bite she takes.  So this was big success.

That cute nurse came back in with the stuff that makes my anxiety rise.
Oral meds.
Tenley HATES taking them and fights with all her might to spit them right out.

After I squeezed her cheeks, and the nurse put the syringe full of medicine in... Tenley started coughing, then gagging, and it all came right back out, with the sparkly toast.

Our morning was shortly turning into a very barfy one.
The nurse practitioner and the nutritionist came in and we talked about Tenley's appetite.  After tracking her calories, she was only getting 1/4th of what she needed.  So, they brought up the option of an NG tube. (feeding tube)   -  Now, I know my Tenley, and she has a lot of fight in her.  This idea of a tube being there on her face wasn't something I thought would go well with her.

We tried one day last round to do the NG tube just to get her oral meds in, and it was very traumatic.  I can usually deal with the screaming fits and holding her down, but that was one time I had to turn away and just cry.  It was awful.

So of course this idea was not one that I liked.  The type of nutrition they have supplemented her with before is called TPN.  It runs through her central line into her blood stream, which is harder on her system and can cause liver problems.  The doctors and nurses all prefer the NG tubes because it's a more natural form of receiving nutrition, straight into her tummy, and has less risks for infection.

So why the need to change??
Well, the last two rounds of chemo Tenley has had mouth sores that go all the way down her throat and stomach.  Shoving a tube down there would have been 100 times worse.  So far this round there have been no signs of mouth sores, just a weak appetite.  So the benefits of the NG tube seemed to outweigh the TPN.

All of this talk was too much for me to handle.  The nutritionist said they could wait until later to place the tube.  My mom came up and brought Taryn.  Hearing Taryn's voice made Tenley perk right up.  Even with the low energy of needing blood, and her yucky morning, she gave Taryn a huge smile.  They snuggled right up together and it was a priceless moment.  Tenley's blood was ready and they hooked it all up.  Immediately I could see her coloring come back and her energy rise.


These moments are what keep me running.

After eating some lunch, and the girls getting some ice cream cones, I told Taryn it was time for us to head out and that grandma would stay with Tenley.  Well apparently Taryn had a different plan in mind... She ended up screaming the entire way out of the hospital.  The kind of screaming that brings everyone to a halt.
I couldn't believe her freak out.  As soon as we got outside, I grabbed her cone and threw it telling her naughty girls that throw fits like that do not get ice cream!  After dragging her flailing screaming body to the car, I started bawling and told her she couldn't act that way.  We both cried together and after a few minutes, we got over ourselves and she said she was so sorry and would be nice and really really wanted her ice cream.

So, after feeling like the the worst mom ever, I went back inside and got her a new one.

I called Kim and told her this day was getting more and more insane.  She told me to come right over and at least let her have Taryn for awhile so I could go home and rest/shower.
After complaining all about my crazy life, and letting the kids get settled watching a movie, we decided to touch up my super dark rooted hair.  It was just what I needed.  Who needs a shower when they can get their hair beautified instead?

I was feeling so much better.  The kids were having so much fun playing together.  We snacked and gabbed while my foils were cooking on my head, then ate delicious brownies, and gabbed some more.  For a bit, life felt normal again.
As Taryn and I left, I felt rejuvenated and ready for what the night might bring.  We drove back up to the hospital to switch off with my mom.  As we made our way down the hall I could hear Tenley screaming.  They were putting in the tube.  I rushed Taryn over to play in the toy area, and ran to the room to be there for my baby.  They were just finishing up getting the tube in place and thankfully it all went pretty well.  They had given her Adavan, which is similar to Benadryl in making her drowsy and forgetful, but that did not stop her from gagging over and over again until she finally threw up.  Imagine this tube running down the back of your throat.  Just thinking about it makes me feel gaggy.  The gagging came and went for the next hour, which the nurse said was to be expected.

Taryn was so concerned for her sister.  We explained what the tube was for, and how it would help Tenley grow and get her medicine.  After my Mom and Taryn left, (this time without all the drama) we got settled and watched some shows, read books, and played.  Tenley seemed content, and was playing her little laundry game, helping me fold and unfold her blankets.  Finally after 8:00, it was time to start her nutrition, and see how well she handles it.

Because this tube is going into her stomach, which is not a sterile area, it is pretty easy to hook it all up.  No alcohol wipes... no gloves... just hook the two tubes together and it's set.  They set the rate very very slow to start.  If it goes too quickly, the gagging and throwing up issue starts again.  Throughout the night they planned to up it in small increments.

At 10:00 we were all ready for bed.  I started rocking Tenley and she kept pointing to her bottle.  I had the nurse get her some milk and after she drank half of it, she pointed to the crib.  I started to lay her down, and just then she threw up. A ton. Everywhere.

It was a huge mess, and the tube they had put in just hours before had come right out.  She was so overly tired, and all of this was just too much for her to deal with.
I can soooo relate.

After she threw a major fit, and did NOT want me to change her clothes, her bedding, or her pillow, I finally gave in and she slept in most of that mess.  I am not even kidding.  She was asleep, and I was exhausted from the day.  I realized I never even had anything to eat for dinner.  After talking and crying to Robbie, I called Kim yet again, and she was out with our friend Tiffany.  They came up from Fort Union and brought me a burger and fries from In 'n Out.

Again, a lifesaving moment.  More tears came as they arrived, and laughter followed soon after.  I made my way back to the stinky barf room, and couldn't have fallen asleep any faster.

Today we woke up to a new day.  The rest of the night went well, thankfully, and I felt like the worst was over.  After an easy going morning, the throwing up started again.

Not again I thought.... what is the point of this tube that is suppose to give her the nutrition she needs, if she is just going to throw up constantly!?  I have been on the fence all day with how to handle this situation.  On one hand, I just want to say, "No more!  We are done with this tube, and it is just not working!"  But on the other hand, I want to do everything possible to keep her from becoming weak and make sure she receives the nutrition she needs.

Who knew these would be the worries I would have.  I want the worries of wondering what to make for dinner tonight, and which laundry detergent is best.  Those are suppose to be the normal mom day to day worries.

But for now, I have to keep up the pace and lengthen my stride.  We will get to that finish line soon, Tenley by my side.... and when that finish line comes into view, nothing will hold us back from sprinting across it.  


Carrie said...

You both are such fighters. I can't imagine all that you go through each day, but you do it with such poise. You both are loved so much! Just like the Ragnar hill I will be there to trudge up it with you! Xoxo!

Heidi said...

(((hugs))) and prayers as always for your sweet family!!!

Todd and Jenn said...

Prayers for you and your sweet Tenley. So sorry for these extra hard days. You are doing amazing!

kmperkins said...

I love you! I am so glad you came over. What in the world would we do without each other? You are the best ;D

mccallrose said...

i love you shawna! seriously, you are an inspiration to so many people including myself. you are in my prayers and thoughts everyday! thank you for all you do. you know i am always here and HAPPY to help. <3

ericksonslc said...

I am so sorry you have had these days. I love you both so much and wish I could take this all away. No one should have to go through this especially perfect little children. Stay strong! Lean on the Lord.

Tiffany Ann said...

It was so wonderful visiting you-you are such an inspiration,strong, funny, kind, an amazing friend and mommy! I feel lucky to know you and to call you my friend! Love you and your sweet baby angel :)

Jen and Jared said...

Keeping all you guys in our prayers!

Megan said...

You are an incredible mom, and Tenley is an amazing little girl. You are both such fighters, and I have no doubt that you both will finish this race. I am so glad that you are past the halfway point. Please hang in there!!! You and your family are in my thoughts!

Keyonna said...

Shawna, You are amazing! My prayers are with you and your family everyday. We are praying for the best!

Piano Mom said...

This is so hard. It's just so hard. You keep going because you have to. I know. Who else is going to do it? Only you can. It is so draining. It is wonderful you have your mother's help. It's great to get moments for yourself and get your hair done!

I'm sorry Tenley's has the NG tube. I wish it was easier.

I understand the crying all to well. I cried for months non-stop and I wasn't ever a cryer before cancer hit Erin. I remember crying in my car in the parking lot for 1 whole hour after I did the dressing change on Erin for the first time.

As cancer moms we are asked to endure and endure and endure. You are doing a wonderful job.

Love you!!!!!