Out of the PICU we go!

June 30,2015

      We stayed in the PICU for only one night. Sydnei did amazing. Dr. Chandler (her surgeon) came in the next morning to talk to us. He could not believe how good Sydnei was doing. He could not believe that she had not had any pain medicine. Dr. Bryant (the cancer doctor) came in also that morning to talk to us. She told us at this point there would be no radiation needed. We were very happy about that. 

                         

                  All smiles in the PICU

         

      We got to move her back to her room on the cancer floor. When we got settled back in her room they took out one of her iv that she had. Lucas got to come visit Sydnei. She didn't want to lay in the bed so Kevin put her in a wagon and took her around the halls and to the play room to play with Lucas. 

She was so determined to play. She did not want to lay in that bed. 

July 1, 2015

      The doctors came in the next day and said that they could take out all of her tubs she had. Sydnei was so happy and scared at the same time. She was so traumatized from all the pokes and so she thought it was going to hurt taking them out. They told us at this point that she might even be at stage 1 with the cancer. We were still waiting on the pathology report to come back to be sure. We prayed so hard. She got out of bed and got to go play in the play room. While she was in the play room she got sick. They had to giver her some zofran for her stomach. Even though she had gotten sick she didn't want to go back to get in the bed. We had to bribe her. 

July 2, 2015

We got to finally go home!!!!

They let Sydnei paint a tile for the ceiling of the cancer floor.

                            On our way home

 Sydnei and her Selfies!!

Unfortunately our sweet dog Peanut was not doing well at all when we got home. We took him to the vet that night and he ended up dying. I had him for about 7 years. Sydnei was so upset. She did not understand why he had to die. 

RIP Peanut and Allie

Surgery Day

Monday June 29, 2015

     The morning of the surgery was hard. Sydnei couldn't eat anything. If you know my daughter she is an eater. She loves food and if she does not get her meals she is ill. So that morning we tried to occupy her so that she would not be so ill. They said the surgery was going to be around 12ish. When 12 came around they still had not come and got her. By this time she was very ill. She wanted gum so bad. That is her favorite thing in the world. We handed her a pack to "hold" but she opened it and was passing gum around. She tried her best to sneak her a piece but she couldn't have any. She was so pitiful.

                                                   Waiting to be taken back to surgery.


    They finally came in around 2 o'clock and got her. Kevin and I walked down to the pre op room with her. She was still in such good spirits besides being hungry. We waited in there for a little while. She got to take one of her favorite stuffed animals with her. She took her little bear named Berry. While we waited she watched Frozen on Kevin's phone. When it was time for us to go she was ready. She didn't cry or anything. We walked down to the operating room with her and waited outside of the doors. The nurses and doctors came over and gave her some medicine to go to sleep. We were saying our goodbyes and kissing her. She looked up at Kevin and said, " Bye daddy I'm going to sleep now." She then put her head over to the side like she was asleep. They carried her into the operating room. We went back up stairs to her room where some family was waiting. It seemed like forever. I am not a patient person at all. But the entire time she was back there I felt a peace about it. I knew in my heart that God had her in his hands and that she was going to be perfectly fine. Some of the family was upset and worried but I just felt at peace. They called about every hour and a half to give us updates on her. 





This girl is fearless. This was when they were about to take her back. 





    








Around 6:30 Pm Dr. Chandler came in the room. I have to say when I seen him I was so terrified. We did not get our call like they had been doing so I immediately thought that something went wrong. My heart sank. But they were done with the surgery. Dr. Chandler said that she did amazingly. The took out her kidney along with the tumor. They also took out the lymph nodes and a piece of her uritor. The pathologist looked at the lymph nodes under a microscope to see if they were cancer or not. They were NOT. Which was really good. They had to send off her tumor to be tested. He then said that he was going to go ahead and put in her port. So he went back down to the operating room to put that in. I was so revealed when she finally came out of surgery. I knew that she was fine but you always have that uncertainty too. 
    We got to go see her in the recovery room around 8ish. She looked so peaceful when we got in there. They told us she was doing great. They had to monitor her for a while before we got to leave the recovery room. They said that we would have to say in the PICU for the night so she could be monitored. That way if she needed stronger medicine they could give it to her. But I tell you Sydnei did not need anything stronger that the Tylonal that they were giving her. She was fine the entire night. She did great in the PICU. 





In the recovery room. 

The day after

      Sunday June 28, 2015

     The day after we found out the news about Sydnei was a very slow day. We still had no clue what the plan was. If you know me I am the type of person who wants to know what is going on, when, why, where, and how. I am a very prepared person. So not knowing what the plan was or if she was going to have surgery first or chemo it was hard waiting. Sydnei was still in really good spirits. She was still in her bed for the morning. It amazes me that she never complained once about having to lay in the bed so much. Around lunch time they came in to take out her catheter . She was still so terrified because she thought it was going to hurt. She screamed, but she realized it did not hurt when they took it out. They also had to draw blood to find out what blood type she is. They ended up having to draw it from her foot. After they got their blood they let her get up out of bed. This was the first time since we were in the hospital that she got to get up and not be hooked to anything. Sydnei was so happy. She was so ready to play.She got to see the big fish and run around the halls. They were getting us ready to be moved over to the cancer floor later that day. 

These were on sat night after we found out about her tumor. 

She loved to snuggle with daddy.                                            Being silly with mommy.  

                                                                    This girl is so silly.











             












Before she got her catheter out.                                She made her own extra long straw to drink her drink.

When she finally got to see her fish. 

     Later that day they came in to tell us that the plan was that they were going to do surgery the next day (Monday).  They felt that they could get all of the tumor and lymph nodes out. So they decided on surgery and then she would start chemo and radiation after she had healed from the surgery.  I was so terrified. When I had surgery to have my thyroid taken out it was rough for me. So I was so nervous for her. Surgery is a big deal. They said that the surgery would take up to 5 hours. I could not wrap my brain around that my 3 year old little baby girl was going to have to be cut open. It was so scary to even think of. 

   Now that we knew somewhat of the plan they moved us over to the cancer floor. This floor was so much fun for Sydnei. When we got moved over there Sydnei, Kevin, Lucas, and the nurses raced each other up and down the halls on cars. They had so much fun. We let Sydnei eat basically what she wanted for the rest of the day too. She could not eat anything after 12 that night. So we tried our best to make the day so much fun for her. 

Everyone racing down the halls. 

What is a Wilms Tumor?

So what is a Wilms tumor???

     So we knew a little about what a Wilms tumor was. My niece Emma (my brother's daughter) had the same exact tumor and the same exact kidney. She was only 18 months old when they found hers. They found hers because her stomach was so bloated all the time. She looked like a little pregnant baby. They had to do surgery on her. When they did her surgery they told my brother that is was a stage 3 tumor and that they would have to put in a port for her to do chemo. When Emma got out of surgery I remember the doctors coming in to tell my brother and his wife that they got the tumor out and also had to take her right kidney as well. They said that the tumor was the size of a grapefruit. They said that Emma's kidney more than likely never worked since she was born. They left the room to go put in Emma's port when another doctor came rushing in saying that they examined the tumor and it was NOT cancer. She was not going to have to do any chemo. The Lord healed Emma. I remember my brother falling to his knees to pray and thank God. I also remember my mother about passed out. We all call my sweet niece Emma a miracle baby. She is now a happy healthy 6 year old. 

                                 When Emma was in the hospital and had her surgery. 

                                                             Emma Now!




















      So when we found out about Sydnei's having a Wilms tumor we turned to my brother for guidance. He was so helpful and supportive.

    So what is a Wilms tumor? It is a tumor that is in the kidneys. It occurs mostly in children from 3 to 4 and under 5. Most of the time it happens in just one kidney. But sometimes it can also be found in both. Thankfully it was just one kidney for Sydnei. About 9 out of 10 of the tumors found in children are Wilms tumors. There are usually about 500 cases a year diagnosed in the U.S. each year. It occurs in about 1 in 25 thousand children. It most commonly happens in females. 

Here are some pictures of a Wilms tumor. 

    It is crazy to think that both Emma and Sydnei had a Wilms tumor. Since Emma had a tumor and so did Sydnei they said they will do some kind of genetic testing to see if there is something that makes our family have them. 

The day my faith was tested!

      Saturday June 27, 2015

  Sydnei had a pretty good night the first night in the hospital. We met the Dr. Chandler when we woke up that morning. He came in to explain that she had something on her kidney. They were going to do a CT scan on Sydnei. Kevin went down with her while they did the CT scan. He said she was such a brave little girl when they did it. We waited and waited for the results to come back on what they had found. My mother, dad, our preacher, and associate preacher was there when they came back in the room and asked Kevin and I to step out of the room. I knew right then and there that something wasn't right. I immediately felt myself start to cry but I held it back. We went into another room where there was a computer for Dr. Chandler to show us what they had found. The doctor explained what we were looking at. Sydnei had a huge mass inside her right kidney. Kevin and I both started to cry. He told us that the mass was so big that it had busted through her kidney. There were also some lymph nodes that looked like they were affected also. The mass was a Wilms tumor. They were afraid that the tumor had spread into Sydnei's IVC and her aorta. Those are the tubes that leads up to her heart. They said that it might had made its way to her heart. They wanted to do an ecocardiogram on her to make sure that her heart and her lungs were not affected. They said that the Wilms tumor was more than likely cancer. 
    Kevin and I did not know what to do. We just sat there for a while and cried. We asked what the possibilities were and what we could do. They were not sure at first. There were two options: One they could take the tumor out and do chemo and radiation or Two they could do chemo first to shrink it and then later on take out the tumor and then resume chemo. 
   We went back in the room with Sydnei, my mom, and our pastors. Kevin had walked out to talk to our pastor while our associate pastor stayed in the room. He was entertaining Sydnei. I could not control the tears. They just kept flowing. Sydnei seen that I was crying and she asked me, "Mommy why are you crying?" I broke down even more because this precious little girl had no clue what was about to happen to her. All I could manage to say was, "baby mommy just gets upset sometimes." We ended up going out with our pastor to talk to him and to pray. I have to say when I found out that Sydnei had a tumor and that she more than likely had cancer I started to question God. God why would you do this to this precious little girl? What have I done for this to happen? Am I a good mother to not even know that this was growing inside of my daughter? Did I do everything possible to protect her? There were so many questions that I could not answer. All I could do is pray. I knew that God had a plan for our family and for Sydnei. I knew that he was doing this for his glory. I did not understand why but I knew that he would always be here for my family.
    They then did an ecocardiogram on Sydnei. She did an awesome job as usual. During her exam she started to sing like she always does. But this time it was different. 

 

Sydnei singing Proverbs 21:1

They also did another ultrasound on her kidneys. The tumor was pushing on her IVC. Sydnei was in such good spirits the entire time. We waited on the test results to see if there was any of the tumor that had spread to her heart and her lungs. The doctor came back and told us that there was not any sign of the tumor that had spread to her heart and lungs. We were to thankful that it had not spread. The cancer doctors also came in and talked to us about when they did surgery they would put in her port. A port is where they would give her chemo and radiation. For the rest of the day we had lots of visitors and told everyone what was going on. There was nothing else we could do so we just spent time with our sweet baby girl. We did not know what the plan was and we did not know what God had in store for us.                                                                           

                                                        Sydnei and her uncle Brent!!

The signs

     So it was a normal day. Kevin took Sydnei to her 3 year old check up at her doctor. It was Wednesday June 17, 2015. I was sick that day so I couldn't take Sydnei to her check up. They did a full check up on her. They told my husband that she was a perfectly healthy child. She had no issues. 
     On that Friday June 19, 2015 we woke up that morning like every other morning. Kevin had went to the bathroom. He started to freak out. He noticed blood in the toilet. He woke me up. He thought it was me because I am pregnant. I told him no I didn't think I was bleeding. So he went to check on Sydnei and Lucas to make sure that they were ok. Kevin checked Sydnei's underwear and when he did he found some dried blood on her underwear. She had gotten up in the middle of the night and used our bathroom and didn't flush the toilet. I am so thankful now that she didn't. So we checked her to make sure she had not scratched herself. She was fine. So we changed her and let her go on about her business. 
     Later that day around lunch time we went up to my brother's shop. Sydnei had to use the bathroom so Kevin made her pee in a McDonalds cup so we could check her pee again. When she got done and we check it it was like looking at a glass of sweet tea. Her pee was so dark. We decided then to take her up to kids care to get her checked out. My mom went with me and Sydnei. Then we got up there we told them what was going on. They checked her urine. They told us that she had some sugar in her urine and also a lot of protein. They wanted to do some blood work as well. When they took her blood Sydnei was such a trooper. She did not even cry. They ended up having to stick her twice. The second time they stuck her she only whimpered. When the blood work came back they told us that her kidneys seem to be working fine and really did not know why she was peeing blood. They said it would more than likely clear up on its on. They wanted me to make an appointment with her pediatrician.  So we left that day basically with no answer as to why she was having blood in her urine.


(Waiting at kids care)


     On Saturday June 20th when Sydnei went to the bathroom the blood had cleared up a little. She still had some blood but it was no where near like it was on Friday. We keep an eye on her the whole weekend to make sure that everything was ok with her. She seem to be her normal self. 
     That Monday she had an appointment with her pediatrician. They tested her urine again when we went in. They said that she still had sugar and protein in her urine. They also said that she had developed an UTI. What I want to know how in the world can you get an UTI in just 3 days? Is that what was causing her to bleed? If she had a UTI how come on Friday when they checked her urine there was no trace and they said she was fine? It seemed to me that her pediatrician had no clue what was wrong with her. I felt like that they just said that she had an UTI just to say hey this is what it is. So they gave her some antibiotics to clear up the "UTI" that she had. 
    Throughout the week she had no traces of blood what so ever in her urine. She ran around, played, jumped, sang, and fought with her brother as she normally did. On that Friday June 26, 2015 I had woke up that morning sick. Kevin had to work that day so I called my mother to come get the kids for me because I couldn't even get out of bed. So mom came and got the kids for me to keep them until Kevin got off work. She took them over to her house to play and swim in her pool. Around 3 o'clock mom called me and said that Sydnei started to pee blood again. Mom also said that this time Sydnei started to complain of her right side hurting. When mom had brought Sydnei home you could tell that she did not feel good at all. She layed around and keep saying mommy I don't feel good. So I called Kevin and told him that he had to come home so we could take Sydeni once again to the ER. I sucked it up that I felt horrible because I wanted to be there for my baby girl. I took a shower put on my "big girl panties" and took some tylonal. While we were getting ready to go to the kids care again Sydnei could not even wear underwear. She was leaking blood so bad that we ended up putting a diaper on her. By the time we got to kids care we had to change her clothes and the diaper again because the blood just kept coming. It was basically like she was having a really heavy period. It was so bad. By this time every time she peed a little in the diaper she would start screaming and crying. She kept saying it was hurting. 
     We finally got up to kids care. Sydnei was still in pain every time she went to the bathroom even just at little. We got up to the desk and I checked her in. I demanded that they do an ultra sound on her kidneys. I felt like that she had kidney stones. They run in our family. My mom has had them, Kevin's dad has had them, and I have had them about 4 times now. I did not know if that is what it was but I just felt that they needed to do an ultrasound on Sydnei's kidneys. While we were in the room waiting they wanted another urine sample. She still had a diaper on at this point. So I took her into the bathroom and helped her pee in a cup. Now she could not even pee. She screamed. She was in so much pain. As we waited on the results for her kidneys she was so pitiful. She tried to be her normal bubbly self but we could tell each time she tried to pee in her diaper. Finally when they came in with the results from the the ultrasound they wouldn't really tell us much. They said that we needed to head to Greenville Hospital. They already had a room ready and waiting for us. All they would tell us is that found something on Sydnei's right kidney. We did not know what to think. We were both upset that something major was wrong with our sweet 3 year old. That is when you start to question everything. How do we handle this? Why is this happening to us? What is it that is on her kidney? What are we going to do? We got discharged out of kids care. We started to head to Greenville that night. 
      We got to Greenville and Sydnei was still in so much pain. We found our room and got Sydnei settled as much as we could. We were admitted to the pediatric surgery floor. One of the doctors came in to see us and basically not tell us anything. He told us the same thing that the kids care doctor told us. We got Sydnei in her bed and settled. They had to put a catheter in Sydnei. This was so traumatizing to her. Kevin, Me, and Three other nurses had to hold her down. It was so awful. They tried the first time and it did not work. So they ordered a infant size one to put in her. When they went to put it in she started yelling and tensed up so much that she started to pee. Quarter size blood clots and pee came out every where. The blood clots were blocking her from using the bathroom. That is why it hurt her so bad to try and use the bathroom. After we got her all cleaned up they then had to put an IV in her. They tried the first time in her right fore arm. They could not get it in. So they decided to call an ICU nurse to come and find a vein to put in her IV. They had to use a machine to find her vein. They ended up putting it in her left hand. After they got the IV in they were done messing with her. She was so exhausted by this time she fell asleep right away. She was still so traumatized by everything that she was even talking in her sleep saying NO DON'T POKE ME. Kevin and I did not know what to do. I personally did not sleep the entire night. I was so worried about what was on her kidney. I started to pray to God to let my sweet girl be ok. I knew that I had to be strong for her. I knew that God would help us through this and he had a bigger purpose for this all. 

                                                   This is when she finally went to sleep. 

The beginning!

      My sweet baby girl was born on February 4, 2012. She was two weeks early and she weighed 10 lbs 5 oz and was 21 inches long. YES she was a big baby, and YES I had her no c-section. She was a very healthy baby. I had a very normal pregnancy with her also. No diabetes, and every test they make you take while you are pregnant was clear. I would say that I had a very emotional pregnancy with her. There were lots of things going on in my life at the time with my and my husband. Overall my pregnancy with Sydnei was a good one though. I couldn't have asked for a better one baby wise. 

     Sydnei is my second child. I have a son named Lucas. He now is 6 years old. After Sydnei was born everything was perfectly fine with her. We took her to all of her check ups. They never once found anything wrong with her. She was always a healthy but big baby girl! Sydnei has never been to the doctor other than for her check ups. I can't even remember a time we have had to just take her to the ER or anything. She has never really even ever gotten sick but maybe one time that I can think of. What more could you ask for as parents to have such a healthy baby?