It's OK to be sad

I sat in my car today after Isabella's Friday clinic visit and I just cried.

I cried because I was sad, heartbroken after hearing that her levels were decreased even more.

As I sat there in the car crying, I realized something...

I wasn't mad, I wasn't frustrated, I wasn't loosing my faith that the treatment could still work, 

I wasn't giving up on her tiny little body to fight, I wasn't confused...

I was simply sad, and that was OK.

I have protected myself and especially my heart during all of this.

I protect it because I have experienced first hand how quickly it can all change.

I remember celebrating Craig's birthday, Bella was happy and appeared to be fine.

After the party was over and it was time for bed, she got a nose bleed which ended up

being a night in the ER and one of THE scariest nights of my life.

I feel like I needed to remind myself that feeling sad isn't giving up.

Feeling sad is a normal reaction when you are going through hard times.

This journey has by far been the hardest trial I have ever gone through.

Having her levels going up for almost 3 weeks was a fresh breath of air.

Maybe that's why they went up, to give us all a little light.

Maybe they will start to go up again, I don't know-and that's the hardest part.

So I continue to have faith.

I focus on each day, and I take it one day at a time.

Today it was hard, and feeling sad felt good.

I know that each day with Bella home and healthy is a good day.

So we wait some more, and we see what each day brings.

Her doctors will talk to the BM Transplant team and see what they think.

Dr. Engle thinks her body deserves more time to see what it can do,

especially since she took longer to respond in the first place.

We keep going, we keep praying, and we know that tomorrow can be a brighter day!

When there are Ups, there will be Downs

I have learned in all this, you NEVER know what to expect.

Every day is different, every day can bring new challenges.

We have had an awesome couple weeks, and I have tried to appreciate them and take them all in.

Today at her Monday Clinic visit to check her levels, we found out that her Retic levels went down.

They have consistently been raising for the last 3 weeks, and then today they had decreased 6 points.

I felt so confused and sad, I was not expecting that at all.

Her platelets had dropped from 20 to 8 over the weekend (which was normal), so she got a transfusion.

Her neutrophil count slightly increased from .6 to .7-which was good.

Dr. Fair said that the levels can do that, and it's not great-but it doesn't mean they won't continue to rise.

I have not wanted to get too excited about her levels rising, simply to guard my heart incase it doesn't end up working.

I have also wanted to shout it from the rooftops cause I am so excited it IS working.

I feel as though it is a huge blessing, and not accepting it doesn't show my appreciation for the blessings.

So I have been torn telling people...and this reason is why.  You never know what to expect.

I do have Faith, I have Faith in that what needs to happen will happen.

I know Heavenly Father loves Bella more than I realize, and that he will help her.

I know that these low moments make us stronger, make us appreciate the good, and make us turn to him.

So I am putting my Faith in his timing, and I am simply going to try and do my part the best that I can.

I look at her bright blue eyes and that cheesy little smile and I melt.

I want her to be healthy, and I want her to continue to be happy.

I will anxiously await to see what her levels are on Friday...and I might go crazy waiting!

Glowing

 Today Matt and I were able to go with our ward to Ward Temple Night, and I will never forget it.

I knew I would feel peace and comfort, but I had no idea how much I would take from going.

I know without a shadow of a doubt that prayer is real.

I know that every prayer is heard, and they bring miracles.

I literally felt this and have a testimony of it.

I know that Isabella's bone marrow will work perfectly...

either in this life or in the next, she will be made whole.

I know that when we do our part, God will do his and never let us feel alone.

I know Christ lives and that he loves us.

As I go through this journey there are times I am scared, 

and tonight at the temple I felt complete comfort...it was amazing!

Grateful that I can go down the street and feel such peace & comfort.

"Breath Deeply & Appreciate the Moment"

I repeated these words today in my head while Bella and I had a picnic for lunch.

We were at clinic and found out that she would need a red blood cell transfusion,

so while we waited for the blood to arrive, we decided to eat lunch outside in the amazing weather!

As we were walking to get our lunch, this huge sign was next door.

I sat there and read it and felt like I need to do just this...

and enjoy this beautiful day with my Beautiful Bella.

It's so easy to get discouraged at times, especially while at the clinic and getting transfusions.

They are long days, emotionally and physically.

Our days start at 6:30 AM and don't get home till about 5:30 PM.

By the time we reach home, all I want to do is sleep.

So today I am focusing on the fact that her levels are still rising.

I am appreciating eating lunch outside and not in the hospital.

I am appreciating a daughter who makes my whole life light up...

I am appreciating Isabella Mae.

L.O.V.E for my Mini Valentine

This little L.O.V.E  of mine had my heart as I sat there and watched her hand out her

Valentines to all her friends at the clinic today...

She would grab one from her bag and say in her cute little voice

"Happy Valentines Day"!

They all melted, and so did I.

She is so sweet, so loving, and some of her best friends work at the clinic.

This week I was SO curious to see how her levels would be, and I was hoping they would be up again.

They were, and they even increased more than they did last week!

I couldn't have asked for a better Valentines Day...

being with my little mini Valentine, and hearing such great news!

Sassy Pants

Bella was my little sidekick the other day while I went and took some pictures of a friend-

and I couldn't help but snap some pictures of her and all her sass!

I feel like the last week or so Bella has been acting more like herself-before all of this craziness began.

I don't know if it is all in my head, but I feel like she is more outgoing, funny, sassy, and just overall happy.

She would always dress up in her Princess costumes and dance outfits before she was diagnosed,

and the last few months she hasn't really liked to dress up much.

The last week or so she has started wearing them more...which is something simple but big in my eyes.

People that know her or meet her always say she has "sass".  I would agree.

This tiny little body has SO much sass, and I love it!

I feel like it makes her get through all these hard times, and keeps us laughing along the way.

So I will take the sass, I will take it any day of the week.

I am so glad I am seeing her become more comfortable and trusting.

I am grateful to have her with me each day and to see how amazing and tolerant she is to all this.

I simply love my sassy little munchkin!

Levels Are UP!

Today I am excited and feel EXTREMELY blessed!

I took Bella in for her Friday Clinic appointment, it was my first time back since Matt gave me a break.

She wasn't very happy, she went to bed late, and she was not feelin the love...

They drew her blood and we waited for the results.

I have realized that through this whole journey I protect myself, especially my heart.

I know that nothing is certain in all of this, and even though we have seen miracles and glimpses 

that this treatment is working-I don't want to be let down if that's not what's in store for the future.

So today I didn't expect anything great with her levels, I just was hoping that they would be rising.

Jessica, the nurse who always accesses Bella's port, came in with the lab results and said smiling

"guess what, her levels are UP!"

I was shocked, ecstatic, emotional, and just in awe.

I sat there and cried as she read the numbers to me.  So much stress and worry felt like it was melting off of me.

Her platelets were at 98!

They have never been that high, they were double from the previous week, and tripled from what they normally are!

Her red blood count was at 26 which is low but she hasn't had a transfusion in 4 weeks (longest she's ever gone).

Her neutrafil count (white count) was at .4, and it has been at 0...which is very low and dangerous.

So overall she has gone up, and her bone marrow is starting to produce it's own cells!

Dr. Fair and Dr. Engle were both excited and surprised.  Dr. Engles reaction was priceless-I'll never forget it.

Bella has been on this treatment for almost 9 weeks, and since it can start showing progress at 6 months-I think everyone was hopeful for it to still work, but being realistic as well.

I'll never forget Doug telling me how some kids bodies just take longer to respond than others...

when he said that it kind of pierced my soul.

Bella has always done things on her own time, even when she was born-she came and she came quick!

I was reminded by her doctors that this is great, but this does not mean she is out of the woods yet.

Her numbers have to get to a point where she is transfusion-independant.

At that point they will not do a bone marrow transplant.

So we wait over the next three weeks and see what they do...and hopefully they keep rising.

If we get to 3 months and they are not quite high enough, but they are still progressing well-

they will most likely give her 1 more month to fully respond.

I don't know what the future holds, I don't know how she is going to keep responding,

but I do know that this has given me strength, hope, and even more faith.

I know that Heavenly Father has a plan for her, and for our entire family.

I know that he loves her more than I can imagine...and I have seen it through this whole entire journey.

I will keep praying that she can fully respond, but I also know that she is in his hands-and those hands wont let her go!

I am truly grateful and overwhelmed by today, and will never forget the feeling of pure joy I felt for her!

Can She Catch A Break?

The last two weeks I have been able to breath a little & take a break from taking Bella to clinic.

Matt has offered to take her and give me a break, and it's been SO nice!

We have started remodeling the house, and it's been crazy around here-staying at 3 different places while its done.

So when Matt took Bella to clinic on January 31st, her platelets were up slightly...

usually by Friday they are in the low 30's, and they were at 41!

Dr. Engle was happy they were up a bit, but for some reason Matt thought they were higher 

because she got a transfusion on Tuesday (not Monday) that week.

She did get a transfusion on Monday (Tuesday was the week before), so they were up a bit!

Monday rolled around (Feb. 3rd) and she was scheduled to have surgery on her mouth.

She had a clogged salivary gland underneath her tongue that had gotten bigger and bigger 

to the point that it was making her tongue stick up and was changing the way she talked.

She got a platelet transfusion that Monday-her platelets were 13.

She still didn't need a red blood cell transfusion which was nice...

the hard part was for Matt waiting for the surgery that wasn't till 5pm with a tired little, hungry girl.

She did well with the surgery, and they said she would be in pain but Tylenol would help her.

Well that night it was rough.  She got a fever in the middle of the night, and was in a lot of pain from her mouth.

When she has a fever we can't give her Tylenol cause it could mask a high fever which could mean infection.

Our thermometer wasn't being accurate at all, so I went to good old trusty Walmart at 4am to get a new one.

Luckily her fever didn't go over 99 for over two hours, so we were finally able to give her Tylenol for the pain.

She was in our bed all night, just crying off and on cause the pain.

I laid there and thought "when is this little girl gonna catch a break?"

Her poor little body is constantly dealing with something, and she is such a trooper every time.

I'm hoping this week she can recover quickly and Friday her levels will be even better!