One life changing day...

April 1, 2013: I hate April Fools day!!

I want to remember everything through this whole process. So I will be writing it down here.

I am that mom. The one who was told by the radiologist that I needed to head to my Dr.’s office NOW , to talk to my doctor about Riley’s CT scan. 

The mom who was pulled into a different room to be told that my 5 year old son has cancer and a tumor on his kidney that is the size of a cantaloupe. I think at that moment I was numb and in a cloud wondering "what the hell". 

Just last week I was looking forward to being a soccer mom for both the boys and enjoying a wonderful summer of fun and swimming. Now I am a cancer boy’s mom looking forward to care and love and hugs and tears and a lot of hospital visits. 

This all happened on Monday April 1^st 2013 when we went to our wonderful doctor, Garrin Miller, because we thought Riley was super constipated since Friday, even though he was going to the bathroom, his belly was so hard and distended, bulging on the right side. We had been giving Riley double doses of laxatives but his belly was not changing. We had a previous visit for this same thing about 4 weeks prior but when we did an x-ray of his belly, he literally was REALLY full of poo!! So, we all just assumed this was the same thing.  

The doctor did an exam and knew something was wrong, it just didn’t feel right, so he ordered a CT scan and labs. Thank goodness he followed his instincts because when we got the results of the blood draw, he said everything looked really normal. I asked if he had just done labs and no CT would we have found this, he said no. He thinks it is called a Wilms Cancer Tumor.  The other Cancer it could be was Neuroblastoma.

Our doctor was on the phone with Primary Children’s Oncologist before we even got from the hospital to his office 50 feet away.  We had an appointment with the surgeon, oncologist and a lot of tests at 9:00 the next morning. 

April 2nd was a day full of tests, tests, and tests.  Go to the red door room, then to the blue room door, followed by a stop by the lab, and then to another colored door!

Test day:

Talk with the Surgeon

Ultrasound

I.V

C.T. Scan of the chest and upper cavity.

Talk with Oncologist in the cancer/chemo room

Pre register with Surgery

It was a very wearing and hard day. My brain was on overdrive trying to register everything that was happening. I was so packed with info that I too, just wanting to go home!

I still can’t believe this is happening.       

At this point my nerves are shot. I try not to hyperventilate when new info is given. I have had many mini breakdowns and 2 major breakdowns. I can’t keep food down on either end and I’m just sick in my stomach. And I am soooo blessed to have Chris here with me, telling me, we can do this and just letting me cry on his shoulder. 

Once we got pre registered for surgery we finally went home. Riley was so exhausted that he slept all the way home and once we got there, he was so excited to see Hunter! 

That night I was getting him a cheese sandwich and while cutting the cheese with a big knife, Riley looked at me, then at the knife and said, “mom, are they going to cut me open with a big knife?” I said no, then he said with the most worried look on his face, “then what? A chain saw?”  My heart just broke at that moment, wondering how his little brain was processing all of this and what other scary things he was thinking of, that he just didn’t understand.

We all gathered around each other this night and talked and read books. Riley is begining to read and he Loved the book called "Alphie get's a cookie". He read it over and over to us!
I think I finally fell asleep at 1:00 am with a restless 4 hour nap! Chris would not leave Riley’s room, he slept with him the whole night. He’s such a wonderful daddy! 

He will be getting a PORT put in his chest that will sit just above his heart on the left side. This will be under his skin with a tiny tube that goes straight to his heart. This will be where we will access him once a week for 6 months for the chemo treatments. This is also called a central line. This is where they can draw labs from so he won’t need to be poked so many times. It will also serve as the I.V. while were in the hospital. 

There are so many unknown things with this surgery that the scans could not confirm. They couldn’t tell if the tumor is just pushing on vital artery’s and organs or if it has crossed through them. The main Aorta was a huge one in question and that was the one we were all worried about. If it has gone even a half an inch up the aorta then they would have to close up, do chemo first to shrink it back down, then go back in for the removal of the tumor. The liver, lungs and the other Kidney were also in question. The scans looked good on the Left Kidney but they needed to get in there and examine it to make sure there was nothing on it as well. If there was, he would need a Kidney transplant and be on Dialysis for a while. The tumor was so large and fragile that there was a good chance it could rupture while it was being taken out, if this was the case they would have sponges to absorb the cancer that would spill out of it, but it could still spread through his open cavity and spread cancer through his body. This would require a lot more chemo and probably radiation as well. WOW, we had a lot to worry about.

 

 Riley was a scared of the CT scan, so Chris and him "got" one first!

 My trooper Ri!

That evening we were still in shock, we all cried but I’m sure no ones eyes were as swollen as mine! We had our wonderful Bishop Trotter and home teacher come over and give us a blessing, which was wonderful. Then a fun night of no sleep and a lot of praying. I think I checked on both boys 100 times that night, just making sure they were okay and giving them one more kiss! It was just me and my thoughts all night….. which was not a good thing.  

Loves his Dad

  

 Before Pictures

Hard to believe that a tumor is in there

Surgery Day:

The surgeons’s are Dr. Rebecka Meyers and Dr. Mark Molitor Jr. 

 My two miracle workers. 

We arrived at the hospital at 7:00 a.m and Ri went back to Surgery at 9:00 a.m. 

We had an in depth talk about what would happen today, with Riley and Hunter, last night. It went really well with Hunter, in fact he was up til midnight asking questions about it. He said he’s not nervous for Riley just worried, but we said a prayer and Hunter said “I know Riley will be just fine mom."

Riley on the other hand did not process it well. He cried and was so sad until about midnight. He kept saying, “ I don’t want to go back up there mom”, I’m scared and it will hurt, He said “can we go up, not tomorrow, but tomorrow?”  {can you hear my heart breaking}

He slept/cried the whole way to the hospital, in daddy’s arms of course!

While we were waiting to go back to surgery he cried and said 5 thousand times, “I just want to go home, when are we going home?" They gave him a kids Valium but it didn’t work very well.
We walked him to the surgery dbl doors and he just cried and held onto me. There was a line on the floor that lets parents know, that this is the place you need to stop. The Dr. had to pry him off me kicking and screaming for me as he walked my baby away. Don’t worry Ri, mommy was crying harder then you were, I love you so much. 

I feel very helpless and heartbroken. I just fell to the floor and curled up in a ball, I can’t stop crying, just thinking about him getting cut open and hurting so bad. I have always loved my kids more then anything, I now know how much I truly love them with all of my heart and how deeply I care for them. I guess we all need reminders of this every now and then. But couldn’t it have been in a different way? 

We are in the waiting room, it has been an hour and a half and I can’t wait any longer for an update. My stomach is churning and I’m a nervous wreak.

2 ½ hour update: Port is in, which will be used for the upcoming chemo treatment’s, now working on the kidney/tumor. Vitals are good.

3 ½ hour update: Tumor is out!!! It did not rupture!! It did not go through the artery!!! Taking out lymph nodes now, probably another 1 to 2 hours.

5 hour update: He is out!!! The doctors came into the waiting room to tell us the news: The tumor had completely taken over the kidney so there was no kidney left. It was so large, at first they thought it was the size of a cantaloupe, by the scans. When they got it out, it was the size of a melon. It was 6 pounds. and over 7 inches long. It was so large it compressed the liver and moved it up into his back. The bowels were pressed down and the appendix was compressed to one side.
They removed the appendix. As well as a growth on his intestines, Meckel's Diverticulum.  He also had a small tumor/mass on his small intestine that looks like a part of the pancreas that broke off during development and attached there, a Pancreas Rest. They think both of these are not cancerous, but we’ll know in a few days.

Here is a picture of the huge tumor inside his tiny body before they removed it.

I can finally breathe!!! A huge weight has been lifted off my shoulders and I sigh a HUGE sigh of relief. We can do this! We are going to do this.

During this whole process we have had so much support from all over. I wish I could hug everyone and say thank you for you thoughts and prayers. So many wonderful texts, calls and emails, and with every one of them, we would just cry knowing so many people cared. Even though I was a complete disaster, I could still feel a little peace knowing how much support and love was behind us.  

Riley was in the PICU until 9:00p.m. He as doing so good that he was moved to the 3^rd floor. He came out of surgery very well.

Post Op Pics:

Ri was worried about them putting him to sleep because he wanted to suck his thumb. Glad he was able to comfort himself.

Sleeping off the pain.

The incision site.

In so much pain, but what a tough boy I have!

Dad's glad his boy is all done with surgery.

Brave big brother Hunter.

Happy to see his brother.

Oh how we love these boys!

One relieved Momma! 

On the second night after surgery, Chris went home to be with Hunter. I COULD NOT leave Riley. But I missed Hunter SO much. 

I was so exhausted, we had been through a gruling 5 days in all and I needed sleep. I was thinking Riley would be just as wiped out as me. But he was still so scared and even in his sleep he would stir and look for my hand to hold. I tried to slip away and lay down on the couch bed, but every 45 minutes he would reach for me and start to cry. It was about 2:30 a.m. and I was a wreck, I prayed to Heavenly Father for a little help, to let Riley sleep for a couple hours without needing my hand. And when I got done praying I looked at ri and standing next to his bed, holding his hand was my Uncle Jim and his uncle Eric, both of whom has passed away. I knew from that moment we were being watched over and would have heavenly help throughout this process. Riley slept 2 hours and 45 minutes!