Research Studies

Have you ever heard of Alex's Lemonade Stand? You should check it out! I have always heard of it and thought how great that it was to have something to simple giving to the research of childhood cancer. I never thought that it could directly impact my little world.

One of the research studies that Malina is involved with just received a large grant from Alex's Lemonade Stand to further the research!!!! The study is specific to Ewing's Sarcoma. They are trying to find if the tumors have markers in the blood. If so, are they shrinking with the tumor or growing. This will make it possible to have to do less scans on child and to know early on if the treatments are working effectively or not. 

The doctor who is head of the study told me that there are approximately 200 new cases of Ewing's Sarcoma a year in the United States and 900 in Europe. There is a lot more research going on in Europe for this kind of cancer than here. He said that there are maybe a handful of studies specific to Ewing's Sarcoma in the United States. I am happy that Malina can be apart of this and hopefully, down the road, this will help other children.

The local Fox 4 news channel interviewed us and another family yesterday about the study. Here is a link to it.
http://fox4kc.com/2014/06/05/alexs-lemonade-stand-supports-kc-childhood-cancer-research/

One Step Back

Malina was supposed to start 5 long days of out patient chemo yesterday, but that didn't happen. Her starting yesterday was all dependent on her blood counts. This is the first time that she has not made counts. Her platelets were just a little lower than they need to be. The doctors decided to let us have the weekend and come back in Monday to try again. If she makes her counts on Monday then she will start chemo and finish it on Friday. It will still be out patient but they will be long days.

It is a little frustrating to not make counts because then her whole schedule s thrown off. She has 3 more small chemo treatments before she starts getting her scans again and they all had to be moved a week. I know there is a reason for the change and that is ok. It is just hard when we have everything else set to her schedule and when it changes, it changes everything else.

One nice thing about her not making counts is that we will all get to be home this weekend together!

They say it will get easier

I keep getting told that parts of this will get easier. I'm not so sure that will happen.

I hate that every time we get to the clinic Malina starts to have anxiety over being there. She gets fussy and crabby and clingy and shy. I hate having to be the bad guy and take her all the time. I'm supposed to be mom and protect her from all the scary and hurtful things in the world. I  know I could not have prevented her cancer, but she is terrified of going in all the time. She is terrified of stickers, always has been and she gets a huge sticker put on every time we go in. That is about the worst thing for her. Malina SCREAMS every time the nurses are accessing her port and de-accessing her. When I say SCREAM I mean it. She is loud, red, sweaty and just hysterical. I HATE IT! It absolutely breaks my heart every time we have to do this. And I know it is mostly because she just doesn't like to have people in her space and touching her.

As sad and as hard as this is, I know that Malina is getting the help and treatment that she is in need of. She has had amazing doctors and nurses through out this process so far. Our whole family has been treated wonderfully by all those involved in her care. I know that she will be ok and I know that she is getting the care that she needs. In a way I am glad that she is so young so hopefully she won't remember all of these traumatic experiences.

I also know that this experience will make our family stronger. I know that I have a strong girl who never ceases to amaze me!

This Girl!

I tell you what, this girl of ours amazes me everyday!
Malina has been doing wonderful with her physical therapy this month. She is trying to stand more on her own and has even tried to take a few steps!

She did awesome a few weeks ago trying to walk with her walker. Because she is not strong enough to support herself, we do have to help her by supporting her as she stands or tries to take steps. We did have Malina fitted for leg/ankle braces last week and we should get those the middle of June.
We have been working with a therapist from CMH who comes to our home once a week, Kelli, she is great and Malina is starting to finally like her. However, we just found out that Malina will qualify for a program called First Steps through the school district. We have a  meeting with them next week and then they will have someone come in our home once a week to work with Malina. She also receives therapy when she is in the hospital for chemo. Everyone has been very impressed with how well Malina has been able to regain her different functions since her tumor was removed. We know it will still take more time, but are confident that she will regain all ability.

Reality Check

I have had so much on my mind this week. A few different times this week I have had moments that remind me of the reality of our new normal.
Monday I took Malina in to have her neulasta shot and lab work done. As I was sitting in the waiting room enjoying the early morning snuggles of my sweet girl, she threw up all over her and I. I couldn't even think, "how gross". My first thought was "my poor baby girl". It always sucks to see your kids sick, even worse when they can't tell you. Once we got her back to her room I was able to get her out of her yucky clothes and I wrapped her in a blanket and just snuggled her some more as we watched morning cartoons.  The nurses and doctors were in and out doing their thing, which she is never happy about, but in between all that, I just got to hold my baby. It's no fun that the chemo drugs make her sick to her stomach. They help one thing but then make you feel yucky. She is on medications to help her stomach but that morning she was feeling extra bad.
Her lab work was looking kind of low so Nancy (Malina's Nurse Practitioner) told me to take her back on Thursday to  have her labs ran again and possibly have a blood transfusion.  I was pretty emotional the whole time we were at the clinic. It just really sucks to not be able to make her all better. I hate that as mom, I can't be sick  for her. I really hold onto the snuggle moments a lot tighter now.
After we got home Malina saw Jenna eating so I quickly made her something to eat too. Since she is so pick now about food she gets just about anything she wants, when she wants it. She ate about a quarter of her quesadilla and threw it all up. She thought it was super gross this time! We quickly cleaned her up and she started asking for more, so she ate more! I was glad to see that is didn't bother her much.
Late Monday night (like 9pm, after he had gotten home and had a long busy day) Pablo (Fellow) called to check on Malina and myself since I was having a hard time in the clinic that morning. He was so nice and encouraging. He reassured me that everything she was feeling is normal and that the way I was feeling was normal and ok. It is so encouraging and nice to know that Malina is getting care from a team of doctors that are not just concerned with her but our family as well.
Also this week Malina has been losing her hair. It really started bad while  we  were in the hospital the week before but got worse after being home. Her hair is really thick so it didn't come out all at once. It was however coming out by the handfuls! It was definitely sad but also got to the point that is was annoying to have her hair everywhere! On Wednesday I came home from picking Jenna up from school and I could tell that Malina's hair seemed a lot thinner than from when I left. Billy had given her something to eat and her hair kept getting in her mouth so he decided to brush her hair and run his fingers through it. Most of it came out. I couldn't handle it. I broke down in tears. It was another reality shock for me. A friend of mine came over and trimmed up what was left, it was looking much better after that! Her hair has  continued to fall out this week so tonight (Sunday) Billy shaved the rest off. It wasn't as hard like it was earlier in the week but it is still sad. I know her hair will grow back and it might even be different. Of course she is still beautiful and I can't get over her cheesy smile!

I Feel My Savior's Love

Yesterday was a bit of  hard day for Malina. She is not wanting to eat much while on this new chemo drug which isn't helping helping her tummy. She threw up twice yesterday once in the middle of her chemo and then right after her chemo. The second time she had just finished half a small bag of cheetos and threw it up all over her and I! It was really gross. I felt so bad for her that I didn't even care that I had barfed cheetos all down my legs. She just wanted to snuggle after we got her all cleaned up. NO more throwing up the rest of the day but she didn't eat much either. The morning she ate a good breakfast but that was about it. I could tell throughout the day that her tummy wasn't feeling well but no throwing up. She is getting two medications to help with the nausea and there is a third we can give her if it gets really bad.
Even though she hasn't been feeling amazing, she is still acting pretty happy. In fact she didn't take a nap until 4:20 today!! And she would only nap if I was holding her, which I was totally ok with. I love getting all the snuggles in I can with her. 

I keep waiting for the day that she will wake up and all her hair will be gone. It will be a really hard day for me. Yes,  I know it will grow back and yes, I know she will be just as cute but seeing the physical affects chemo is going to have on her from feeling yucky to loosing her hair will be extra hard. My girls have pretty amazing hair. They have always had hair since the day they were born. Their hair is kind of a big deal to me. I mention the hair thing because hers has been shedding a lot today. It makes me sad and want to keep her close. 

You know how as parents we want to protect our children from all the bad and yuck in the world and maybe if we hold them extra tight nothing bad will happen? Well I keep hoping that the more I snuggle her, the more I keep her close and tight, that I  will be able to take all the hurt away. I'm so sad for her. I am so sad for our family. In these moments I am thankful for my Savior. I am thankful that He knows my heart. As I hug her tight I feel His arms around us, protecting us.

I have so many favorite primary songs but this is definitely near the top of that list.
I Feel My Savior's Love

1. I feel my Savior's love
In all the world around me.
His Spirit warms my soul
Through ev'rything I see.

2. I feel my Savior's love;
Its gentleness enfolds me,
And when I kneel to pray,
My heart is filled with peace.

3. I feel my Savior's love
And know that he will bless me.
I offer him my heart;
My shepherd he will be.

4. I'll share my Savior's love
By serving others freely.
In serving I am blessed.
In giving I receive.

Chorus: He knows I will follow him,
Give all my life to him.
I feel my Savior's love,
The love he freely gives me.

My Baby has Cancer

My thoughts are all over the place right now as I watch my baby sleep in her hospital crib. She is so tiny, so perfect, so beautiful. I hate that this is happening to her. Cancer just sucks! It is so sad to watch anyone having to deal with this, but it is even worse to watch your child, and we haven't even hit the hard stuff yet. 

My Malina amazes me everyday with her strength and smiles. I am so happy with all the progress she has made since her surgery. Everyone has said that it is amazing how resilient children are and that is so true! She has gained so much mobility back already but still has a long way to go. She has been able to crawl and move her legs and has some sensation back. It will take time to get her up and walking again and that is ok. She will get there! She is a rock star!
Malina is in her third week of chemo right now. She is getting a new set of drugs this week so we will see how she handles these. So far everything has looked great, in fact when we checked into the clinic yesterday morning they told us she had gained 2 pounds!!! Poor girl wasn't excited to be back here but has quickly gotten the hang of what is going on this time. O but she hasn't given into the hospital food yet. She's not a fan of it, so all of her weight gain has been from home.
As much as it sucks to be going through this trial, I do have to say that it is ok. We will get through this. Our sweet Malina will be ok. I am thankful for so many things during this hard time. We have been so blessed between people cleaning our house to bringing us food to playing with Jenna. I KNOW without a doubt that the Savior and our Heavenly Father loves our family and is so very mindful of us and Malina during this time. There is no way that He is going to leave us on our own. I can't tell you how many times I have felt His love in the past month.
We are so thankful for all the many prayers and kind thoughts that have been for Malina and our family. We know that is what is keeping her and us strong during this time. We couldn't do this without all of our wonderful friends and family.