Prayers For Kate

Okay. We recently had some unexpected news for our sweet pea....she has had so many UTIs all of a sudden and back-to-back-to-back...her pediatrician was stumped. So we started exploring it further. He ordered an ultrasound and we had that late in the afternoon on Thursday, March 24. Dave ended up getting stuck at work and I had both boys in the room with me....not. fun.  Ayden was running around and trying to plug/unplug things, touch the machine, climb things...it was endless. And Collin had started to look sick. By the time we were in the ultrasound, he was feverish and just wanting me to hold him. But I couldn't. Ahh! I hate those moments!!

I had to barricade Ayden in the radiology waiting room or he just kept running down the halls. 

Holding Ay cuz he was a terror and Collin was sitting in the chair sick.

At one point, the tech asked me if Kate had ever had an injury. I said no and didn't think much of it. We managed to get through it. I took them up to the cafe and we ate a treat:) Dave came up to say hi and then we went home. The next morning (Good Friday, Dave was on call but home) Dave took a call that I thought was him getting called into the hospital. I was just about to work out. He said, "Plans have changed." I was like, great...

Then he said, "No, we are going to Madison. They found a mass on Kate's liver and we are going down for tests and to meet with a pediatric oncologist. This morning."

Yeah.

So, we started packing up, we didn't even shower. We ended up waking Ayden from his nap, piled into our new truck (Dave got a new truck!) and drove down to American Family Childrens Hospital. We pulled up, did the valet parking, got one of the wagons they have available, loaded the boys into the wagon and tried to find our way. Kate knew we were going to check something in her belly but that is about it. She was seemingly fine!

It is very nice there and the wagon was a GODSEND!

Waiting to see the docs

In the room

It didn't take long and we were going back. She was weighed, measured and then we waited. There were some things that were entertaining for the boys in the room and everything was themed, but Collin was very sick at that point. Lethargic, feverish and just done. Ayden was.....a 1 year old. Dr. Bush came in and spoke with us, asked what we knew (nothing) and examined Kate. She found some lymph nodes in her groin that were slightly abnormal, but they were mobile. Kate started to inch closer and cling to me at that point.

Toys perked him up for a little bit

They wanted bloodwork, an IV and a CT scan. Then Dr. Otto came in, the gal that was going to draw blood and a Child Life Specialist. Over the din of the kids, he said that they don't know what it is. It was 3 cm x 2 cm x 1 cm on what they think is the periphery of her liver. It seemed to be partially fluid-filled and had some but not a lot of vascularization. They needed to learn more, thus the tests. There were tumor markers they were looking for in the blood. There was a bad thing that they were curious about, normally caught well before age 6 but possible. And yes, he mentioned words like malignant, metastasize, and chemo. On top of that, Kate was freaking out about getting her blood drawn. The CLS was there to distract her during the conversation, so she didn't hear any of the specifics.

A lot of people (there were two other adults, plus myself and Ayden)

While the gal tried to draw her blood, I tried to keep the boys corralled on one side of the room. Dave was with her, the CLS and the other gal (I forget who she was). They did use the numbing cream, but it didn't work. She blew both elbows. Kate was sobbing, it was awful. No iPad, nothing that CLS brought would distract her. Dave couldn't hug her since both her arms were being messed with. Another NOT FUN moment in my life.

The boys playing with the hospital stuff the CLS brought

They then took us down to CT and were going to get her bloodwork/IV there. They decided to use nitrous this time. So, we were waiting for an NP to come see her to approve that. The boys were getting so antsy. We hadn't had lunch. No naps. I took the kids to a little playroom, but Collin was just so sick, he wanted me to hold him and I was worried his fever was getting high. So, we went back to the room. Kate had had the nitrous, blood was drawn and IV was in. Thank God.

She then had to drink a big cup of fluid over the course of an hour. They were going to do IV and oral contrast for the scan. I was starting to feel light-headed, so I took the boys to the cafeteria, grabbed some food and came back. She soon finished the fluid and we all went over for the scan (two hospitals connected). We couldn't be with her, so she went in and we paced outside the door. It was nearly 5 p.m. on Good Friday, everyone was leaving, the place was pretty quiet. We were beside ourselves.

She got to pick her "flavor" and play with the mask ahead of time

Perked up Collin wanted to play with his sis

But he still was not well!

Watching TV. I don't think Daddy let go of her hand. For hours:)

She did great. And we were free to go. They said they would call with results and it could be that evening but it might be the next day or two. We got in the truck and were promising her all kinds of treats and meals. We decided on PF Changs and then frozen yogurt, but Dave started getting texts about when he would be back (the other guys had to cover him since he was on call). So, we had to get back to Mauston. We were still starving and had promised her Chinese, so we went to the China Buffet in Mauston. Ayden was done. Didn't want to eat or sit in the high chair. I couldn't eat. Collin threw up when Dave tried to look in his mouth/throat. Good times. Kate and Dave ate.

I was worried about Collin and didn't want him to get worse at home or in the middle of the night if Dave was gone. So, we drove him over to Urgent Care at the hospital. He didn't want to be there :(  We were put in a giant trauma bay in the ER. Ayden was into everything, Kate too actually. Collin didn't want to do anything that they needed. I was holding him and when Dr. Coffey tried to check his throat, he threw up all over himself and me. Good times.

Well, popsicles can solve a lot of things...

She seems fine!

He was just drooling and slobbering so much, he didn't want to swallow, he had a fever but it wasn't as high anymore. There was some confusion with his pulse and 02 sat (but they put an adult pulse oximeter on him!)...Dr. Coffey wrote a script for amoxicillin and we got the heck out of there. A trip to the grocery store and pharmacy and then we finally could go home. One of the longest days of my life.

While I was getting Collin into Urgent Care (turns out they admitted us into the ER - awesome. That's $150 more)...Dave got a call from Madison and Kate's bloodwork looked great!! Praise the Lord. None of her numbers were high for the tumor markers and her liver, kidney function looked normal. I was SO relieved. I was petrified about those numbers coming back worse. Dave still seemed super anxious, but I was going to take that good news and focus on THAT!

As soon as we got home, we took our sick, cranky, way over-tired kids inside. I was putting Ayden down when Dave got called in to the hospital. We didn't even have a chance to talk or hug or anything. I did NOT like that. And thus began a very busy call weekend/Easter weekend for Dave.

We had a long "debriefing" after our trip to Madison and she was pretty logical and open when talking about it. She said she does not want to have blood drawn again -  :( 

Both kids were told to HYDRATE, so we had a Pedialyte tea party the next day
(Kate's idea for the teat party, my idea to use Pedialyte)

Her bloodwork looked good and the CT scan was "inconclusive."  We then went through a busy call/Easter weekend and waited for a phone call on Monday. Dr. Otto was going to take her case to a "Tumor Board" where they discuss cases and decide how to proceed. We didn't get a call Monday or Tuesday. Dave was leaving Friday for Washington D.C. and I wanted to hear from them. Dr. Bush called that afternoon and said that this thing doesn't look like anything that they readily recognize. They needed more info.

She complains of no other symptoms and besides being a sensitive and sometimes cranky 6-year-old appears quite normal!! She is still have occasional accidents which have been UTIs over the last four months. So that is still a mystery as well (put on the back burner for now). Kate is someone who will not readily tell you something is wrong. I mean, she will want a band aid for a minor bump on her finger, complain about stubbing a toe, but she will downplay anything that she thinks will lead to bigger things (going to the doctor, etc). We have had to overcome some fear just initially going in for the UTIs. So, I do worry that she maybe wouldn't tell us if she was in pain. But we are having LOTS of conversations about it all, making sure she is comfortable, feels safe and knows that we need to know these things to keep her healthy.

So, the docs wanted more information and ordered an MRI. We asked to have it done in Mauston instead of Madison just for our ease and logistics. They agreed and we scheduled it for Wednesday morning (April 6). Dave was just back from D.C. that morning (1 a.m.!) and was back at work. I thankfully had someone who could come watch the boys in the hospital lobby (and other places;) for me (Miss Chris, Kate's dance teacher and family friend!) and we headed back to Radiology around 8:30 a.m. 

Getting all set up, she was wrapped up, positioned and under all kinds of stuff

Another IV

I was so unprepared for what this would entail. The only thing they told me was that she needed to be NPO for 4 hours ahead of time. This guy took us back, he didn't have the best bedside manner :(   said that should would need to put on a gown and get an IV. She started to get upset. I had no idea they were going to run IV contrast again. So, I asked him to call Dave/Anesthesia to do it (per Dave's request via text five minutes earlier). Dave was able to come down and after gathering his supplies, I held Kate while she sobbed and he did her IV. He is amazing.

Another guy came in (who had a really great bedside manner) and they got her on the little table. They had said that one of us could be in there and I asked Dave as it seemed a little simpler. Katie also wanted Daddy since he had been gone for so long and she missed him! So, they rigged her up with all kinds of stuff and got her ready to go. She had headphones on, but could still hear us. She had her hands up above her head and Dave reached in and held her hand:)

Not comfortable for Daddy! 

They needed her to hold her breath for the pictures, hold it in and hold it out. Forever!!! Like 10-15 seconds! So, I sat back near the techs and they did a long serious of pictures. The nice guy, Bryce, kept saying she is doing good and the pictures are good. The other guy made me more nervous. Then they brought her out and started running the contrast through her IV. They put her in and started taking pics but then all of a sudden, the tech went running in and they pulled her out and she was crying and her pillow was all wet and tinged with blood. I aged 10 years. 

Dave noticed a pop and the pillow getting wet and he told them to stop. There was some type of failure with the tubing or IV stuff that lead to losing some of the fluid. Her IV was intact. So, I tried to just calm her down. Great. She has to breath slow and hold her breath and now she is practically hyperventilating! We calmed her down and were going to start again, but they had to call down to Madison to see if they should give her more contrast or not. Which was good, we were able to get her calm again. So, they ended up saying there was enough in her to keep going. Dave and Bryce were chatting in the room while we waiting to hear from Madison and Dave kind of moved his head back and hit the emergency shut off button. Yeah....

So, then we had to wait while the whole damn thing fired up again. At this point, Kate was pretty worn out. They played some music in her headphones and she kind of zoned out. After awhile, they put her back in and started again. I could hear the guys talking and saying that she was getting tired and not holding her breath long enough. Argh - I was thinking...we CANNOT do this again! 

So, they finished and said that they thought it was good and would work. Dave took out her IV, we let Kate see the pictures of the inside of her belly:) and we whisked her upstairs to get some food!! I took the kiddos to eat, we may have ran through Culvers afterward:) and then I dropped her back at school. She was back to her normal self and they only said she needed to stay hydrated. 

So, we waited for a phone call. Dave went in requested a call back on Thursday (April 8) and so Dr. Otto called me very late on Thursday and said he would talk to radiology and call us back the next day. So...I waited for a call all day. Then Dave came home and said he spoke with him. This is what Dr. Otto said: 

The MRI was good and was able to rule out a number of things (AVF, lymphoma, hemangioma), it is not aggressive yet, and there saw some calcifications. It could be an adenoma but we don't know if it is benign or malignant. It is very possible that it is benign, or possible that we caught it early and just hasn't spread yet.

Her doc (pediatric hematologist oncologist) is going to sit with pediatric surgery to discuss next steps. Her doc doesn't think that just a needle biopsy would be enough to get a good sample of it. So, it seems like the next move will be surgery (wedge resection of the liver) but we might be able to do it laproscopically instead of "open." That part is yet to be discussed. The doctor is excited that it is nicely contained right now and doesn't want to miss the chance to get it all, right now.

Though I kind of thought this is what we would be facing, it still left me pretty rattled. I started getting tearful and Dave said he had done the same. We did not tell her anything yet. We'll wait until we talk to the docs soon. Then we need to start preparing her. Somehow!

It could totally be benign. It probably is benign. I'm thinking it is benign. But it could not be.

Please send up a prayer for her and for the docs. We will try and keep you in the loop. Luckily, we are keeping ourselves busy, there is not a lot of time to just sit still and dwell on things:) Though she is very fearful of the procedures and gets upset, I know she is so STRONG. I want to trade places with her every minute, but we will all have to grow through this. And we will!