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.

The Next Week

When Dr Anderson finished her surgery he came to talk with Billy and I. He let us know that he did not know what it was that he took out of her back. It wasn't pussy and it wasn't hard. He had never seen it before. Samples of it had been sent out to different pathology labs and also over to Truman Medical which is across the street from Children's Mercy. They had lots of different people working on her case to figure this out.
Malina did great during her surgery and right after. In fact, she did great all during her recovery. It was so sad to see her not being able to move and get around. But we knew that she just needed to get better.

She started her recovery in the PICU, then we were moved up to 6 Hall Tuesday night. On Thursday afternoon Dr Anderson came in to see us. Billy had gone to eat lunch with the guys from work and Jenna was playing with friends, so I was by myself. He came in to let us know that what he took out of her spine was cancer. He told me that pathology was 99% sure what it was but that they needed to run some more tests on the tumor and then Malina also needed to have some more testing done.
We spent the next week having more tests done and getting her port put in. On Friday April 4 we sat down with our doctors, Dr Neville and Dr Angulo (fellow) to go over her diagnoses and treatment plan. We were told that she has Ewing's Sarcoma, a bone cancer. Hers is localized, which means it is no where else in her body and that is a really good thing. Her Chemotherapy will be for a year, which we thought was long but apparently is short. After 12 weeks the chemo will stop and her scans and tests will happen again. They will take a look at the few small residual pieces that the surgeon could not get out and determine with another surgery is necessary or not. She will be having radiation for sure. Once her scans are done, radiation and surgery is done also, then chemo will continue.
We will be having quite a few hospital stays and in the clinic a lot. Hopefully we won't have to be in much for anything other than chemo. 

Finally Some Answers

On March 24 I called the orthopedic doctor and talked with his nurse. She chatted with the doctor and called me back within five minutes and told us to get Malina to the ER. Different doctors had been in to see her including neurology. This doctor pinched Malina's toes so hard that the doctors fingers were turning white and Malina had no reaction to this. As a parent, this was scary to watch.

They ordered an MRI of her spine and head but we had to wait until later in the afternoon so that she didn't have anything in her stomach. During this time Billy and I were back and forth with Jenna making sure she got to school and then I took her to a friends house to stay the night because we knew we would be staying at least that night.
Malina was out of her MRI by 6:30. The images showed a large mass in the lower part of her spine that was compressing her nerves!  They had to do emergency surgery to remove this. At the time Dr Anderson (the orthopedic doctor I  had saw the week before) did not know what it was, he just knew he had to get it out. She was taken away and was being prepped for emergency spinal and back surgery by 7. SCARY!!!  

I've just been putting mostly facts down so I can get caught up to where we are now, but this is where my faith comes in so strong. I was actually not at the hospital when the doctor came to talk to Billy, I was out with Jenna. Billy sent me a text and told me that she was out of her MRI and that we had an answer. Immediately I felt peace! I had no idea what kind of answers we had, I had no idea what was in store for us. I just had a perfect feeling of peace come over me. And I have not lost that feeling. When I made it back in Billy told me what was going on. I broke down crying when I saw the MRI images. I was so happy to have an answer and know that she was going to get taken care of. We had a great doctor who recognized that something wasn't right and made sure we were listened to. I knew that my little girl was being watched over. I could feel the prayers and faith of so many people. I could feel my Saviors love my family at that time. Yes it was scary to know that my sweet baby was going into major surgery, but at that moment I had to put my faith and trust in the Lord and know that everything would be ok.

March 2014

I feel like this last month has been such a whirlwind. So much has happened and so fast. Let's see if I can get this all down into words.
The last time we remember our sweet Malina running and being normal was Friday, March 7 2014. Daddy had been away for training for the Dive Team for work and was home for the weekend. Malina was so excited to see him, actually both girls couldn't get enough of him!! Over that weekend we noticed that Malina started limping. Over the next week it became worse, to the point that it looked like she hurt when she walked. On Friday March 14 I called her pediatrician and the Dermatologist that we had been seeing for her AVM. The specialist told us to watch her and if we thought something wasn't right to take her in over the weekend. The pediatricians office called me back later and told us to go to the emergency room. We didn't get there until 7 pm that night. After the doctor came in to examine her and had no ideas, she ordered an x-ray of her legs, an ultrasound of her hips and blood work. At that point we knew it was going to be a long night. Some great friends from church came and picked Jenna up so she would be able to sleep that night, that was at 9:30 pm. 

After all the results came back and they still did't see any problems, we were told that we could go home. It was now 1 a.m. Saturday morning and we were frustrated! Now what? Our energetic 19 month old hurts when she walks and her symptoms have gotten worse. What do we do now?
The next morning I went to a Stake Relief Society meeting. Everyone was shocked to see me since we got home so late but I felt like I needed to be there. I heard so many great messages. One that stuck out was that "You've Got This!" My sweet daughter was on my mind the whole time.
Later that day I remembered I had received a phone call from the hospital and they left a voice mail. Actually they had called me twice and both times I wasn't able to get to the phone. I finally listened to the messages around dinner time and called the nurse back. She quickly called me back and told me that the radiologist had looked at the x-rays that morning and saw an "abnormality, possible chip fracture" on her lower right tibia. I was told that it was in the growth plate so we HAD to go get her a walking boot that night. We had just spent 6 hours the night before in the ER and now we had to go back. And the only way orthopedics would see us is if we went to get the boot and got a referral from the ER. We went to urgent care to get the boot and spent another 3 hours there that night. 

On Monday I called orthopedics to get an appointment and the soonest they could get us in at the downtown location was that Thursday. During that week she progressed worse. She did not want to stand anymore and would only crawl. And the black walking boot was no fun!
We saw doctor Anderson for her appointment on Thursday. The first thing he told me was that what the radiologist saw was nothing and would not be causing her to get worse so fast. He did another x-ray that came back normal.  Next was to have an MRI done of her legs. We were able to get this done the next day, Friday.
Malina had a really hard time coming out of her sedation from the MRI. She never seemed to really wake up until Sunday afternoon. All weekend she was crabby, never slept for more than an hour at a time, didn't want to eat or drink too. It was really sad and evident that something wasn't right with Malina. It wasn't until Sunday afternoon that she was doing better. Happier and playful, but she could not crawl anymore. She would be in a sitting position but could not move her legs She also started running a fever.