There Will Be Miracles

I have seen miracles through this entire journey with Bella, but today I feel as though the biggest miracle of all has taken place.

She was given {1 month} to be transfusion independent in order for her not to need a BMT.

I remember being on the phone with Dr. Fair and hearing this, and knowing it could happen, 

but feeling doubt and fear...earlier that day she had gotten a platelet transfusion and had been every week prior.

Well that would be her last platelet transfusion for the next four weeks, and I can't even believe it as I'm writing it.

Somehow her little body has done exactly what it has needed to do, and we are at the point where we can actually say 

"no, she does NOT need a BMT right now".

Boy does that feel amazing!

So now we wait, and wait and see if her body can still respond to the point where she is in normal range,

and when they start weaning her off eventually-they can remain where they are.

I know that all of this is not by chance.

I know that the blessing she received by Matt and Pappa, along with the faith and prayers from those around her,

is what has made this miracle take place.

I am truly grateful for the priesthood power, and for a loving Heavenly Father that knows our hearts and our desires.

This has been such a life changing journey for me, and at the point I am at now, I am taking it all in-

and enjoying the "now", cause it is OH so good.

My heart and mind want to fight it sometimes, and it all seems too good to be true...

but I win that fight and let my soul be happy and thankful.

She is my everything.  She is what puts the smile on my face, and makes me want to dance.

To see her so happy and healthy is all I ever need and is all I have ever wanted.

Miracles happen, and through Christ anything is possible.

He is here for us, and we need to rely on him to get us through our toughest times.

I have felt his hand in all of this, and I never want to let it go.

I am stronger, she is stronger, and together we move on...

Happy Pants

Today was a great day at the clinic, probably the best day we have ever had here!

Bella woke up happy, and was so dang cute and sweet the whole time at her appointment.

One of her doctors, Dr. Fair, asked if Bella could "please wear her happy pants" the next time we came in...

on Tuesday when we went in she was kinda sassy and awnry (we went in on Tuesday this week instead of Monday).

So when I got her dressed today I told her that her pants I was putting on her were called her 

"happy pants"

She thought it was so funny, and kept singing "happy pants, happy pants".

When she saw Dr. Fair she automatically told him she had her "happy pants" on and did a little dancing while saying it...

it was THE cutest thing.

She was happy, giggling, joking around, and just overall being herself.

To top it all off, her levels came back and looked great!

Her RBC was pretty low, low enough that normally they would have transfused her,

but her RETIC (which shows if her body is making immature red blood cells) was SUPER high...

it was at 94, which is almost doubled from what it was the last Friday (55).

This shows us that her body is telling the bone marrow that it needs to produce more RBC's 

since her RBC is super low, and that's why it jumped so high-which is good.

Now her body just needs to keep them, and they need to mature into red blood cells.

We need to watch her carefully this weekend, but they are hopeful that her body will respond and she will be fine.

Her platelets were maintaining at 14, and her neutrifill count was up slightly again to .9.

Hearing all of this was so refreshing and just reassuring.

Monday will hit her (1 month) mark, and so far so good on her not needing any transfusions!

This little pink car was parked outside the clinic door when we left, and she HAD to have a ride...

we rode down the hallway, picked up some fruit snacks from the vending machine, and she couldn't have been happier in her "happy pants"!

These clinic visits have become fun for her, she feels comfortable and is happy to be there.

I have tried my hardest to make it that way for her, and I love seeing her smile while we are there.

I love seeing her interact with the doctors and nurses.

I love her little spirit and the brightness that she brings to everyone around her.

That combined with her "happy pants" is a recipe for perfection!

Love her.

She's 3

Today after clinic we made a pit stop by the SLC library and I snapped a few photos of my spunky 3 yr. old.

I have wanted to take pictures of her ever since her birthday (almost 3 months ago), and finally made it happen.

She has SO much spunk lately, along with attitude and sweetness...wrapped all in one.

Her expressions and dance moves kill me, and her hand flipped out when she walks is my favorite!

Her clinic appointment went well, she just got her cyclosporine level drawn and then we were out.

On Friday we will see what her CBC is...but so far so good on not needing a transfusion.

While we were there taking pictures, the most adorable little boy came up and started talking to her.

She would have nothing to do with him at first, UNTIL 

he asked her about her nail polish and told her he liked her shoes...I was dying!

They chased each other and payed, and in the end when he tried to hug her-she still wasn't having it.

I couldn't help but laugh and just enjoy the moment.

She perfects her dance moves, loves to sing, and laughs at her own jokes.

Three is a pretty cute age, and I love seeing her little personality develop!

Support from Friends

 What a difference it makes to have friends come to clinic!

Our good friends Beau and Isabel are here visiting from NY, and haven't seen Isabella since she was 6 months old.

The night before her friday clinic visit, Isabel texted me to see if we would want them to come with us to her apt.

I was so flattered and touched that they would want to get up SO early and come with us...

it is rare that other people come with me, so when they do it is such a treat!

I told Bella that morning that they would be coming with us, and she got all excited!

What a big difference it makes to have friends there with her...

she loves it, especially showing them things all around the hospital and clinic.

We made it all week without going in for a transfusion, and I was SO anxious to see what her levels would be!

(especially since we didn't get any numbers on Monday for the first time)

Dr. Engel was there and came and told us how her levels were still rising, and even her platelets had gone up!

From the last Friday they were 11, and they had gone up to 17...which has never happened with platelets.

Her Retic had gone from 44 up to 55, the highest it has been!

It was such a relief and so rejuvenating to hear all of that.

We were in and out so quick, and to top it off Bella was in an extra good mood with her friends there.

We left and went to City Creek to meet Daddy for lunch, and to the "Disneyland Store" (what Bella calls it) where she found THE most perfect light-up Cinderella Shoes.

It was an amazing day with amazing friends. 

It was crazy to sit there with Beau whom we met 9 yrs. ago in NJ.

Who would have thought we would be sitting there all these years later, in a doctors office, with my daughter, going through what we have gone through...

Not me. But how grateful I am for him and Isabel and their friendship & kindness that day!

Let's hope we can just keep this record going with no transfusions...I just can barely believe it.

Once again, I feel soooo blessed!

St. Patricks Day Fun

Well we ended up going into clinic today because Bella's Cyclosporine level was really high on Friday night.

It was a quick visit, and a surprise to me when they said they would ONLY be taking her

Cyclosporine level and NOT her CBC (complete blood count)!

We have never not known her levels when leaving the clinic, and it was a weird feeling...that's for sure.

As I sat there, I kinda had anxiety-I felt a level of uncertainty and it was weird.

One of the nurses Jess said to me,

" Tiff, just go home and enjoy your day, she's not bleeding so just don't worry about it!"

As soon as she said that, I felt so much better.

I had planned a little St. Patricks Day party today for Bella and all her little girlfriends,

and I decided we would go home, party, and just enjoy our day!

Bella was SO excited to have all her friends over, it couldn't come soon enough.

We made rainbow necklaces, ate yummy green food, and had a scavenger hunt to find the "gold".

We are "lucky" today to not have gotten a transfusion, and to just come home and live a "normal" life.

We will see how this weeks go, and just hope and have faith that her levels will maintain.

I am definitely going outside my comfort zone doing this, and it feels kinda good!

Good Advice

Today at Isabella's clinic visit, I got some good advice from Dr. Engel...

he said, "for the most part, most of us get too excited about the highs, and too sad about the lows-

when we should just try and stay in the middle."

I felt like this was such good advice.

I have been on such an emotional roller coaster over the past few months, 

and especially over the last few weeks as her levels have gone up and then down.

Today she hit another record high for her...

her RETIC went from 9.6 on Monday to 46.3 today!

The RETIC shows us that her body is responding and making immature red blood cells.

That is the highest its ever been, and the highest its ever jumped in one week.

Her Red Blood Count also went up slightly, which is awesome.

It is actually in the "normal" range, which it hasn't been without a transfusion.

Her ANC that was highest it's been on Monday went down slightly from .9 to .6.

And her Platelets are low at 11, but they didn't transfuse her today because they wanna see what her body will do without one.

So overall it was GREAT news today.

I am definitely taking it all, and enjoying the good news for today.

I KNOW how fast these numbers can change, and I KNOW how my high can go to a quick low.

So I am def grateful, but not getting my hopes up or getting too excited.

Obviously her little body is responding, and I couldn't be happier about that.

For how long will it respond?  That we don't know, and that's why we take it day by day.

Dr. Engel also told me how as doctors they are told to not treat/look at numbers, but to treat symptoms.

I really liked that as well, and that's what we are doing with Bella from here on out...

we aren't transfusing her unless she is showing physical symptoms.

I am nervous and excited to see how this goes...and only time will tell how it turns out.

As we left the hospital in her "blanket dress" that she designed

(wearing only her diaper and boots again-too many potty accidents than I would like)

I told Bella how her levels were up, and she put her hands together over her mouth and said

"Aaaah, my levels are up? Oh, that's great Mom!"

My heart melted.  She is just doing so good right now, and I don't want to take it for granted.

I told her we needed to thank Heavenly Father for helping her, and she agreed.

The way I feel today is simply "blessed".

Blessed to have a happy Bella, and blessed that as of now her body is doing what it needs to be doing.

I couldn't ask for more.

I'll Take The Baby Steps

These two....well, they are two peas in a little pod lately.

Every day I pick up Ty from school he asks:

"When did you lay Bella down?  Is she gonna be awake soon?"

They have become the best of friends...

which means they fight one minute and love the next.

Together they will set the world on fire, I can promise you that!

I took Isabella into the clinic on Monday since her Cyclosporine level was high on Friday,

and after the weekend I didn't know what to expect.

As I sat there and waited, I couldn't help but run all the different scenarios in my head.

As Brittany (our nurse who we know) came and told me her ANC was .9, I couldn't believe it!

It had dropped dramatically on Friday from .7 to .3

It hadn't been dropping like the other levels, so when it dropped that much I was heart broken.

.9 Really?  That is the HIGHEST it has ever been!

I felt so, so blessed.

I was amazed, and so relieved.

Her platelets and red blood had dropped, but not as much as I was expecting.

Her platelets went from 58 to 29 over the weekend.

Usually by Monday she is in the lower teens.

So she didn't get a transfusion, which is what needs to keep happening.

After attempts to get a urine sample (which ended up with pooh in her pants), 

a long story that I wont go into details about-

we headed home with smiles on our faces.

I could not WAIT to tell Tyler the good news...he prays for her and worries about her every single day.

When he got in the car I told him that her levels started to go up again, he was SO excited!

I could see the love and excitement on his sweet little perfect face.

This good news is simple, and small.  

But I will take the small even if it's for a day, it feels so good.

At least they are baby steps in the right direction!

So we are praying and having faith that they will continue to rise.

I am one happy Momma, I can't stop smiling...which feels nice!

Daddy and His Princess

There isn't anything more pure than Matt's love for Isabella.

She has her Daddy's heart, and the love between the two of them is equal.

Matt surprised Bella with tickets to "Disney Princesses on Ice"...

along with a new Ariel Dress (that sings and lights up).

Even though she shouldn't be in large groups of people like that, we felt like that was something we

would go out on a limb for.  Sometimes you need a day of "normalcy", and it was a good day to have that.

She was in HEAVEN.

One day when she's older she will really understand how much her Dad truly loves her.

He makes her his first priority.  He puts her to bed every single night (upon her request)...it's the sweetest.

He would do anything and everything for her, and all he wants is for her to be healed.

I love seeing their relationship.  I love the pureness of it.  I love them both so much.

A princess never had it so good!

Show Us What You Got

At our appointment on Friday, we left with a lot of changes.

Bella's levels had dropped even more, and even her ANC had dropped which hadn't in the last 2 weeks.

Her doctors have decided to take her off her 2 antibiotics, since they can effect her levels somewhat,

and they want to give her body every chance to make more blood.

It was important that she was on the antibiotics for the first 3 months, but isn't as critical now.

They have also decided to NOT transfuse her unless she is showing physical signs (like excessive nose bleeds, etc).

They said at this point (her 3 month mark) her body should be able to at lease maintain itself and not need transfusions.

We have been helping her body by giving transfusions, which ultimately can make the body lazy and not do it's job.

So for the next four weeks as we wait and see what her levels do, we will not transfuse her on a regular basis-unless she really needs it.
So she is going to be able to "Show Us What You Got".

We also will not need to go in on Mondays unless her Cyclosporine levels need altering...which is nice!

If that can stay between 200-300, we wont need to drive to Primary's, and we can do a CBC at AF Hospital.

Her levels were really high Friday night, so unfortunately we will need to go there this Monday.

Having these small changes actually make a huge difference!

Two less medications to convince her to take, one less trip to SL each week, and possibly no transfusions on a weekly basis...

make our lives much less crazy!

Tonight we all sat and watched a movie in our bed, and while we watched Ty had a little notebook

Uncle Craigy had given him while he babysat him.

He wrote a little note, stuck it under my pillow, and told me that I had to leave it there in order for it to come true.

When I read this sweet note, I couldn't help but cry.

It was THE sweetest, most sincere note that a brother could ever write for his sister.

I will keep it forever.  I will cherish it and his love for Bella always.  He is simply the best.

What it means to say:

"All I want is Bella will feel better"

Love him.

Just 1 Month

The last week and a half has been surreal, as we have seen Bella's levels continue to drop.

Matt took her to her Monday Clinic Apt. and her retic had dropped from 18.5 to 13-
making it where it was from the beginning before they started to go up.

On Sunday I got up and went to a different ward so both of us could go to church that day-Matt had stayed home with Bella the previous week, so it was my turn this week.

I needed some spiritual uplifting, and I needed to show my Heavenly Father that I needed him,

 and to renew my covenants with him.  It was important to me.

After sacrament I went to my car and I was overwhelmed.

I told my Heavenly Father how hard this was for me, and how I didn't know how this would turn out,

but I had faith in him and what he knew what was best for Isabella.

I asked him, I begged him, that no matter what was to happen-

to just PLEASE give me the strength (mentally & physically) to take it all on.

Some days I feel as though I can conquer this journey with her,

and some days I feel like I am weak, and that it is all just too much- especially thinking of her going through a BMT.

I know he heard my prayer, I felt him.  

I felt so much lighter and renewed, and I felt the Spirit so strong.

How lucky I was to feel such peace and comfort sitting in my car, once again trying to figure my emotions and feelings.

When Monday came and her levels were still low, I took it in stride.

Matt and I both felt like Bella needed another blessing, and felt like we should go to the temple.

Late Monday night Dr. Fair called and told me how he had talked with Dr. Pulcifer (the BM specialist),

and that after looking at her trends, he wanted to give Bella 1 more month to respond.

This would put her at 4 months from when she started the immunosupression.

He said how some children can be "late bloomers" and it can take their bodies more time to respond,

and even though her levels were continually dropping-they had responded and they could still respond more.

He said how in 1 Month she would need to be transfusion independent in order to not do a transplant.

Her platelets will need to remain at at least 20, and her red blood count at 7.

These are BIG improvements in a short amount of time, but can be done.

After talking to him I felt better, even more calm.

I liked that Dr. Pulcifer still had faith that her body could respond.

I also had some closure in knowing we have a time frame, and mentally I can prepare more.

Matt and I both knew that a blessing was definitely needed, not only for Bella, but for our whole family.

Tuesday night we headed to Nanna & Pappa's and they babysat the kiddos while we went to the temple.

I knew that we both would feel peace and comfort there, and that sounded soo good!

Before we went into to the temple we sat and talked in the car.

Matt explained to me how hard this has been on him, but he needed to use the Priesthood to bless Bella, and that through that power-she could be healed.

I felt the peace in that, and I knew she could be healed as well.

The temple was refreshing, and it stood out to me how all our covenants we make there

are through our faithfulness. We headed back and I was excited for us all to receive blessings.

Before we started the blessings, Pappa talked to us about the blessings and how it usually depends on

whoever is receiving the blessing to have the Faith that it will work.

In this case with Bella being so young, the Faith depended on us.

If we have the Faith in the Priesthood, she can be and will be healed.

This was EXACTLY what Matt had felt and had explained to me.

Tears came to my eyes, and the Spirit filled the room.

I felt overwhelmed by how grateful I was for the Gospel and the POWER of the Priesthood.

We all received blessings, and we all left feeling renewed and peaceful. 

I don't know what will happen over these next 4 weeks, just like this whole journey it is a waiting game.

But I DO know that through our faithfulness, Bella WILL be healed...

wether that is through this treatment, or through a BMT, she will be ok and she will be healed.

I have to do my part, and I have to remind myself daily that if it does come down to a transplant-

how lucky we are that there IS a second option and a cure for this.

I mentally am preparing for it all, and I am trying my hardest to treasure these four weeks with her

exactly the way she is...happy and just herself!

This next month is life changing.

This whole journey has been life changing.

I look at Bellas sweet little face each day, and I am overwhelmed with love and joy just looking at her.

She is SO strong, and brave.

She brings light to everyone that is around her.

She takes everything in stride and goes on as if nothing ever happened.

I love her more than I ever thought I could love, and I would go through a million transplants for her if that is what she needed.

I simply need her, and I will do everything I can to make this journey easier for her!