This Is Where We Are

One week ago today, my daughter Bailey was laying in a hospital bed, with a 104 degree fever and a ANC count of 1.  A "normal" ANC count is above 1600.  Bailey was SICK.  I was confused and scared and didn't know exactly what all these numbers meant.


The new chemotherapy that Bailey was switched to had severe side affects.  Since Bailey's tumor doubled in size with the previous chemotherapy treatment, her doctor decided to use Vinblastine...a "faster and possibly more effective treatment". 


With her blood counts going down, her risk of infection went up....And that's exactly what happened, while she was at camp.


A doctor explained chemotherapy to me in a really good way.  She said that  chemotherapy was a smart bomb: It only targets certain types of cells, particularly those that grow and divide rapidly. That means it targets "tumor cells", but it also means that white blood cells, which are produced in the bone marrow and have a rapid turnover rate, can be damaged as well. 


White blood cell counts, sometimes called leukocyte counts, drop with most chemo drugs. Neutrophils, which are a specific type of white blood cell, are the most potent disease fighters. The doctor  referred Bailey's low white blood cell count as neutropenia. 

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Neutropenia

Bailey was discharged from the hospital with a blood count of 102, which was a BIG improvement from where she started.  While it is still considered low, a rising count is a GOOD thing.

Now I find myself panicking wondering if her low energy is related to a low count again....Does she have a fever?  How can I let her go to CTF camp and be so far away from me?

I am torn between keeping her close to me and basically putting her in a bubble....Or just trusting that she needs this camp...She needs to be a kid...She needs to experience the world, not hooked up to port IV's.

I am having a tough time explaining to people how serious this really is.  Some people think that because Bailey was discharged, that she is "cured"....That God did a healing and she is fine now...And while I do believe that God definitely worked in this situation, Bailey is far from cured.

Since Bailey is having so many bad side affects from this chemo, the drs decided to hold off on chemo, until Bailey returns from camp....Then, they said, we will go "full force" attacking this brain tumor.

FULL FORCE scares me!  Wasn't that what we were doing, when she got so sick?  Isn't FULL FORCE what brought her to 104 degrees and 4 days in the hospital? 

This is why I have no answers when people ask, "what's next?"  

We live in our "today".  We enjoy the days that Bailey feels well enough to swim.  We THRIVE in our "now"....And pray for our tomorrow.

Thrive On!

More Low Blood Counts

I was SURE Bailey's counts would be higher today!

Saturday night, when I got the call from the camp Bailey was at, her blood count was at 1.  She had a 102 fever and was quickly hooked up to antibiotics and IV fluids....But they didn't help.  Sunday morning, I was called to come get Bailey from camp.  A friend from church came and picked up 4 of the kids, to make the drive a little easier.

When Rich and I finally got to the camp and saw Bailey....She didn't look sick to me.  I was shocked when I was told how sick she really was.

We were to go straight to the ER...But needed to drop Rich off with kids, so that I could just stay with Bailey for as long as it took to get her fever down, and her counts back up.

When we got to the ER, Bailey's temperature was 104.2...NOW, she looked sick.  I have NEVER seen any of my children with a fever that high.  Bailey, most certainly has never been THIS sick.

We were admitted Sunday night based on blood counts and fever.

Monday, Bailey was still running a 100-102 fever....but her counts were rising....Still extremely low....but headed in the right direction.

Tuesday she went ALL day, with no fever....She was FINALLY eating....and things were great!  Her counts increase from the previous day, and the Drs were sure that Wednesday, she would be able to go home...As long as counts continued to rise.

Wednesday morning, the doctors came in and told me her counts went way back down.

We have cultured her blood and can find no reasons why this is happening....No reasons for low blood pressure.

So we just stay here....Where Bailey can be monitored until her counts stabilize.

While extremely frustrated...We have faith that God heals!



            When you come to the end of your rope, tie a knot and hang on.  

~Franklin D. Roosevelt

Prayers for Bailey

Bailey continues to run a fever...and counts continue to be low.  Bailey is at the Children's Hospital being monitored and given antibiotics.

Thank You for all of the prayers and thoughts!

We are blessed to have so many wonderful friends!

Roundup River Ranch Camp!

Bailey left for camp this week.  A wonderful camp that is specially designed for kids undergoing chemotherapy or other treatment for life-threatening illnesses.

I was sooo happy to hear that Bailey could go.  She has been going through so much these past few months and this was a nice way to say 'goodbye' to chemo for an entire week!

I miss Bailey.  I wonder is she is feeling good enough to be having fun.  This new chemotherapy seems to be having more severe side affects and all I can hope, is that the distraction of camp is helping her keep her mind off of feeling lousy.

While we were waiting for the buses to arrive, Bailey met up with Phillip who was just finishing up his appointment at the hospital.  Bailey met Phillip at camp last year and they have become really good friends. He took her under his wing, and showed her around camp.

Phillip was the boy who was featured in the Mtv show 'True Life' in 2010.  His story broke my heart, and I felt an immediate connection with him and the struggles he faces.  Meeting him in person was wonderful.  He is a sweet and funny boy, who doesn't seem to mind when people recognize him as the "NF Guy from Mtv".

When Bailey comes back from camp, it's back on the chemotherapy.  I love that she gets a break, and hate that she has to go through this, but I also believe that in every bad situation, carries with it, a seed of good.

We may hate chemotherapy, the side affects, and everything else that Neurofibromatosis carries with it, but if we stop searching for the good seeds....If we focus on all the bad that life is doing to us....Those good seeds, will never have the chance to be planted.

Thrive On!

Just Another Day at Chemo

Today is the 2nd treatment of this new chemotherapy.  So far, I don't like what it does to my daughter.  The side affects with this new stuff are definitely more severe.  Does that mean it's doing its job?

Could  more side affects mean that the Astrocytoma is shrinking?

I worry about Bailey constantly.  Every time she says she has a headache, or skips a meal, or wants to just stay in bed all day.  I worry when she comes to me with another clump of hair, that has fallen out.  My mind is whirling, wondering if I am doing everything I SHOULD be doing.

I can't help feeling incredibly helpless. What more can I do?  I have spent the last few years fighting for MRI's and other treatments....Do I push for something MORE than just chemo?

What if this tumor grows through THIS treatment, like it did the last?

I could spend my whole life worrying and wondering.....OR, I could just focus on today...trusting that we ARE doing everything we need to do.

I'll focus on how Bailey looks forward to our "chemo slushy dates", and how all Bailey really wants to do after chemo, is swim in our pool.

I'll take the smiles as they come, and help her through the times where all she wants to do is lay on the couch.

I will trust that we ARE doing everything we need to be doing....And believe that THIS treatment will work!

THRIVE ON!