Reece's Fight !: December 2015

From my mom

As I sit here tonight after my relatively calm day I ponder over the past 4 weeks. Today was my 28^th week apt, all went well or as could be expected. I had another ultrasound to check a few things out and mostly to check if my placenta had moved, sadly it hasn’t and it’s pretty low. My wonderful Doctor said she loves to be optimistic about it but looking at it she doesn’t want to get my hopes up for the placenta moving where it should and disappoint me when it hasn’t. Baby looks good and healthy which is great considering I have been super stressed and didn’t eat or take care of myself while Reece was in the hospital.

Today marks 4 weeks since we found the “mass” that we later discovered was a tumor in Reece’s kidney. It’s hard to believe 4 weeks have passed or maybe I can’t believe it’s only been 4 week when it feels like much more. Last night was rough for Reece, she was running a fever and we almost had to take her to the hospital. She didn’t sleep and was just miserable all night long. We both had a horrible night up and down with lots of tears. So today was a good day to take a nap but she started moaning and crying while sleeping. I woke her up to find out what was wrong and she said her tummy hurt. It’s been about 4 days since she has had a BM and I’m worried she has some trapped stool L as none exciting as that sounds it’s all in conjunction with her Chemo. So we have to keep her on Miralax daily, sadly she hasn’t had much of an appetite all week so not much food is going in but what food did go in has not come out L Chemo has made her very picky with food and the smells, so she doesn’t eat much which is not good as she has been losing weight, so yesterday we started on an appetite stimulant, just hope it help increase her to eat more.

I will be honest saying how much I HATE pumping her full of medications or toxins L , and the CRAPPY side effects that they cause, but I have to push that aside and think what is best for her and just know that it’s going to help.

Cancer is like a “silent Killer”. You have it without even knowing and by the time you find it it’s already spread and then you have to kill every good cell in your body to kill the cancer cells that were left behind. We were lucky to find this when we did, it’s a miracle that we caught it as early as we did considering it can get 3x the size it was. I believe in miracles and this was a true miracle as the cancer had already started spreading up towards the heart and lungs. If we didn’t have any symptoms it would have reached dangerous areas and the diagnosis would have been devastating. So as much as I HATE cancer and HATE this entire situation I am grateful for the simple miracle that happened 4 weeks ago.

Reece’s hair stated falling out Monday, it was something I thought I was prepared for but I was NOT. Today I asked her if she would like to cut her hair a little so that it wasn’t so long and getting in everything. She thought for a while and said yes. I’m just so amazed and proud of how well she is handling everything. I talked to her about things but in reality she is just too young to understand fully what she’s going through and I wish so badly that I could help her little mind comprehend this all. Most of the time she tells me “I don’t know how to explain it” it just breaks my heart wishing I could just help her.

Turner has been very overwhelmed by everything and he gets concerned when she is sick, throwing up, or has to go to the doctor. He too is just not old enough to understand and comprehend all that is going on. Today after her hair cut he says “Reece you look beautiful”. I wanted to cry it was so sweet, more than half of her beautiful hair is gone and it’s so thin and her sweet little brother though she looked beautiful!! I feel he has been affected by everything in his own way, as much as a 4 year old can. I’m not a child psychologist but kids have emotions and I’m sure they feel stress in their own way. I try and make special time for him and when I’m gone a lot with Reece it affects him a lot. He is already been a mommas boy so he is very clinging and when I’m gone it just grows!

Today is December 15, 2015

I have officially lost all my hair, it’s just tiny patches of spiky hairs. Ive been very brave and didn’t even get sad or scared that it was gone. I went to school all day on Monday. My mom did stay for a couple hours and was able to finally break away. Today I tried to go again but I was just too nervous and wasn’t able to stay without my mom being there so we all went home.

(from mom) I’m trying hard to find a way for her to be comfortable staying and not scared. I noticed she is getting very anxious about a lot of things, and I completely understand. Her life has been turned upside down. I just hope and pray that we can find a way for her to feel okay and not scared about things that she loves doing.

Sunday my dear friend Natalie Crockett was planning to take family pictures for us and she woke up sick. She felt horrible and was inclined to find a replacement. I was okay with trying to reschedule but she insisted on getting them done. So after she posted a message on a city FB site within a matter of minutes she found someone. His name was Jake McCloud, never met him before until that afternoon. He met us at the AF amphitheater and took some amazing photos. He told us he would be able to drop a flash drive that evening with the photos. I was very grateful for his kindness and insisted that he didn’t need to rush on the photos so soon. Just after 6pm he sent a text message to Clinton saying it was a pleasure working with us today and he left the photos on our door step. What we found on the door was nothing we expected. There were TWO 16x20 framed pictures, 1 of just Reece and another print framed with our family, he also included a photo album with some of the pictures he took that afternoon!! It immediately brought me to tears. I was just in AW and shock that this complete stranger had not only given us a free photo shoot but he personally framed 2 pictures and printed others and placed in an album. With all that has happened in the past 4 weeks we are just overwhelmed by so many kind and generous people. Some we know well and others we have never met. I am just more assured that the Lord hears and answers prayers, he sends angles to comfort and even complete strangers to bless lives so they may be blessed. Jake was very touched by our story and he said it was a privilege doing this photo shoot and amazed at how happy we all were considering the circumstances.

This week is my 4^th chemo treatment which means it’s going to be crappy, its a long slow drip and this Chemo I gets 2 different drugs which make me super sick. The first week I get 2 and then weeks 2 and 3 I gets just 1 drug. So on the days I get the 2 drugs it takes a lot out of me and makes me super sick. I am grateful for the past 2 weeks that have been relatively good. I am very nervous about going to chemo because I knows what happens. The worst part is accessing my port, which I’m hoping will get better. It’s scary but the nursing staff are very kind and loving. I really like the child life specialist who is with me at every apt to help in any way she can.

Nov. 11, 2015 my mom was working at Sean's smoke house that night. She came home late and I was in bed. The following morning Turner came into wake my mom up and told her that "Reece pee's blood". She was very confused for one that my brother was telling her this and second that my pee was bloody. She then got up and asked me what happened. I told her my pee was red, I said I was scared so I flushed the toilet. I didn't have any pain, and no other symptoms.... my mom just decided to wait and see after i use the toilet again. After lunch I went potty and sure enough it was FIRE RED!! My mom was concerned but not freaking out. She called my aunts husband who is a PA and chatted with him, he advised her to call the Dr and have me checked out. So 30 min later we were at the office and seeing the Dr. I had to pee in a cup and after the Dr came to talk to us we were headed to the AF hospital for an ultrasound and blood work. After the ultrasound the Dr was on the phone with my mom as we sat in the ultrasound room and he told her that there was a "mass" in my kidney. He told us we would need to follow up with the Dr's at PCH and I will need to go in for more testing. So for the next 90min we sat in the waiting room while my mom was on the phone with the Urology office at PCH getting things set up for tomorrow.

Friday Nov. 13, 2015
my mom, dad and I were headed to PCH for a CT scan. We had no idea what we were to expect. The CT scan went well, it was quick and easy. After we finished we headed up to the Urology clinic to meet with the Dr. about the scan. The Dr. was in surgery all day so in-between he came up to chat with us. It was about 12pm when he told us the news....
I had a Tumor in my right kidney that they believed to be a "Wilms tumor". Both my mom and dad were in shock. We then briefly talked about what this was and what to expect. Dr. Wallis told us that I would have surgery on Tuesday to remove the tumor and my kidney. My dad was in complete shock and just a mess. My mom was actually very calm and tried to stay strong for me. We met with the nurse who set up the surgery and then headed to Oncology to talk to the team about what would take place after surgery. When she checked me in they checked my vitals and found that my blood pressure was super high (155/114). My mom and dad talked with the team of Dr's about what would happen after surgery and answered the questions they had. Before leaving I had my BP re-checked and it was still very high. They gave me a BP medication and sent us to Echo for a heart test. After the test we stopped back into the oncology clinic and re-checked my BP which was still very high. For this reason I needed to be admitted for overnight and to try and get my BP down before surgery. We had just planned to be there overnight and go home the next day. Unfortunately that didn’t happen. My blood pressures were all over that night and the oral medication was not working well enough to keep the pressure down before it would rise again. That first night I was up and down, vomiting, had a bloody nose and lots of headaches. Saturday came and they decided that I needed to be sent to the ICU so they could put me on an IV drip for the BP medicine. On Sunday they finally had my blood pressure down to a range they were comfortable with. The team had debated back and forth about getting me into surgery sooner than Tuesday. Finally on Sunday late afternoon they decided to do the surgery Monday afternoon. My mom decided to go home for the night and get a good night rest for a very long day Monday.
(from mom) This was the first day I had left the hospital since Friday and left Reece since this all started. As Turner and I drove away I felt the “mommy shield” fall off and all my emotions were coming out for the first time. It was a hard night being home without Reece but I knew that Clinton was with her and she was being taken care of. In just 3 short days our lives changed dramatically. Reece was your typical happy 5 year old going to Kindergarten, playing with friends, running around like a 5 year old should. On Nov. 16^th she was headed to the operating room for the 5 hour surgery to remove her tumor and the bad kidney. I had prepared myself, so I thought, but I was completely wrong. The first hour waiting in her room was brutal, I was so anxious and fidgety I could hardly stand it. We did get updates from the OR about every 90 mins but the time just crept by.
Surgery was over and Reece was wheeled back to her room where we were waiting. It was so good to see her and know that all went well and she was out. The Dr’s talked to use and said that everything went as planned and she did great. They were actually able to save a portion of the major vessel, the “vena cava”. They and planned to remove a portion of the vein to remove the tumor that was attached to it but they were able to remove the tumor from the vein and not have to take it out. Reece was still very groggy but she could respond and she even smiled at us when we talked to her. She had 5 different lines in her body. It was a sight you don’t imagine to see on your child. About an hour after she was back we were able to get her to open her eyes and she talked a little. As I suspected she was nauseous and started vomiting. The nurse gave her some Zofran to ease her stomach and she was back to sleep in no time. The night went very well, as she was still very sleep from surgery. Tuesday Reece slept about 80% of the day. It was kind of worrisome but they were not concerned with her vitals. Her blood pressure was good from the time her kidney was removed and we never had to go back on any medicine. Later Tuesday we were out of the ICU and got to head to the surgical floor. This was a good step to going home. On Wednesday they took out her catheter, epidural drip and a line in her neck, needless to say it was a very rough day. She had a lot of tears and so did her mamma. Since the urine cath was out that meant we had to get out of bed to go potty. The first time this happened was so overwhelming but so joyful. Reece hadn’t moved much since the surgery and had not got out of bed in 2 days. The pain she was feeling was “new” and she was very scared. She was very apprehensive to move her torso. She just had her abdomen cut open and a piece of her removed, I honestly would not be jumping out of bed to pee either! It took a bit of coaching and team effort from her wonderful nurse but we made it to the bathroom and we both cried after.

Thursday was better, I started getting out of bed and moving around more. My mom and I had goals set to go on walks and get to the playroom. I also had some visitors from some friends and my grandma Turner stopped by. I started to perk up and feel better. My mom was hopeful to go home Friday but until I stated eating and drinking more I had to stay. Friday came I surprised everyone!! At 4pm we were on our way home!!
The weekend was very relaxing, I was about 90% back to normal. It was amazing how fast my body was recovering from a major operation. Monday was my first apt with the Radiology team at Huntsman cancer research. This is where I was fitted for a mold and had 5 dots tattooed on my abdomen for the radiation treatments. Radiation will start Nov. 30^th and I will get 6 treatments in a row over 6 days.
Today Nov. 25^th I started my fist Chemo treatment. It went as well as expected, the worst part was accessing my port as this was the first time I had done this. I was not happy after but calmed down and my mom and dad were able to chat with the Dr. about the treatments and what to expect.

Chemo will go for 25 weeks and weeks 1-10 I will get chemo every week. We will access the port every time and draw blood and if the labs come back good then we will do the chemo. There may be times I will need blood depending on my blood counts. Weeks 11-25 I will skip 2 weeks and have chemo on the 3^rd week. The 3 medications I will get to treat my cancer will have similar side effects…. Hair loss, nausea, vomiting, fatigue and more. But those are the most common. Losing my hair is probably going to be hard but my mom and dad have talked about that with me.

(from mom)
It’s been 12 days since everything stated and we are just overwhelmed by everyone who has offered help, donated to GoFundMe, sent gifts, cards and more. For Reece being 5 years old it’s hard to completely understand what is going on, and why she still has to go for treatments. She said today that she thought they took out her “yucky kidney” so she would get better. I told her yest they did but b/c it was growing in other places sometimes they can see the yucky cells and those cells will start to grow again and make you sick. I don’t know how much she has understood or does but we continue to pray that she will be able to fight like a champ. Reece has always been my tough, gentle, sweet and very thoughtful child. If anyone can go through this trial I know that she can. Turner is doing well, the first week was hard while I was away from him for so long but he is trying to understand as best as his 4 year old mind can. It’s been 12 days of ups and downs and we are only getting stronger with each day. Both Clinton and I are just so filled with love from the blessings we have been given thus far. I know that angles were with Reece in the operating room and the Lord was guiding the surgeon’s hands.
I want to do my best at documenting this journey for Reece. I know she is young and hope to document as much as I can. I believe she will remember some of this but not all and hope to help her see what an amazing trial she went through at such a young age.
Reece you are strong, you are tough, you are a child of God and your mom and dad love you. The Lord Loves you more than we can imagine. We know that you will make a full recovery after this is all over. Your life will be filled with many challenges but this is one that will only make you ready to face those that will come your way.