He has some concerns about everything that happened with her bladder after her most recent surgery. Fortunately at this point things have stabilized. Bladders don't like stress and Julia's has lived under constant stress for the past two years. The good news is the bactrim she takes every day is keeping the uti's and blockages in check. And we are watching her closely and have all the supplies to cath her when needed. He did not see any additional concerns in her renal study.
Then we talked about her bladder size. He was asking again what her bladder scan readings are when she is in the hospital. They are consistently in the upper 700 range which means her bladder holds 4 cups of fluid on a regular basis. When I said this his response was, "Oh my gosh, that's huge!" Not what you want to hear from your urologist. He's supposed to tell me he sees this all the time. His lingering concern is that she will lose the ability to consistently empty. A stressed bladder stretches into a big, loose bag that loses tone. He decided to wait for Julia to empty as much as possible and then scan again.
The good news is the reading then was 56, so despite its size she can still empty efficiently. We also talked about the fact that her bladder was this large at her first surgery, so the large bladder issue actually came before cancer treatment. It's one of those things about her we probably wouldn't have known because we weren't looking. For now he feels comfortable with the status quo. There are several more invasive tests he can do, but he doesn't feel they are necessary now, so we will press on. We still need to have the colon issues under control for a year or more before he will start the bladder retraining process.
On our way home we stopped on the 9th floor to visit our buddy Vinny. He has chemo again this week. He and Carter have become fast friends lately bonding over Wii games, Star Wars, and all things lego. Carter is one of Vinny's "happy thoughts" these days so we were excited for a chance to play, even if it had to be on the floor. The kids didn't waste anytime jumping in...
After lego battles, it was time for some fooz ball. It was a wild game of kids versus moms (who were also deep in conversation and distracted) with two balls. Not sure who won in the end but there were lots of laughs and goals scored all around. Then it was off to the playroom. The kids had a blast with the Wii, action figures, and the race car sets. While Sarah and I had some time to catch up with Ms. Stacy. We actually had to drag them all out at the end when Vinny's chemo was finished. Kind of crazy when you think about it, but we are so thankful they can bring each other that much joy, even in the hospital.
This morning we had to be back at the hospital-this time genetics. When I told Julia we were going back, she lost it. It didn't help that Grandpa had arrived last night and was watching Carter while we were away. Clearly "not fair", but couldn't be helped. She started protesting the moment we got in the car and kicked my seat all the way to Winston-Salem. The exact opposite of a massage chair. I cheered her up slightly in the hospital with some YouTube videos. A shout out to Anna and Lily- we were singing "The Duck Song". They still love that :)
The genetics appointment went really well. It was initiated back in the fall when Julia had the suspicious spots on her lungs. When making decisions about how aggressive to be with scanning we were taking into consideration her full diagnosis. It was determined at that time that her LOH testing had never been completed. It's supposed to be done in all cases, but because she missed being on study by two days and it was assumed she was not anaplastic- it was not done. When we requested it oncology told us we had to go through genetics.
It was a long wait for an appointment, so Tuesday was the day. they started with her Wilms' history. Then we discussed all the major syndromes and chromosomal disorders associated with Wilms' tumors. Then they took a detailed family medical history of both sides for 5 generations. It was really interesting to see Dr. Haldeman-Englert and his assistant as they rapidly processed all the information- one on paper, one an ipad. Their minds were buzzing with connections and possibilities they were picking up in different family lines. It is a fascinating area of study. They will run chromosomal testing on Julia and also do full genetic mapping. This will give us information we need as far as future screenings and supsceptabilities to certain conditions or cancers. He said he does not see any clearly evident syndromes, but the genes will tell us if the mutations are present.
Doing all of these tests obviously meant a blood draw. I hadn't prepared Julia for this because I did not know it would definitely happen today. As Tara lead us back to the lab, Julia figured out what was happening and dug in her heals. She put up quite a fight. I had to carry her in. She kept insisting on seeing everything they were going to use so we went through all the parts and pieces and how they worked. With one arm tucked behind me,my legs around her body, and my hand around her shoulder, we were still having a tough time ensuring she would stay still enough. Just about that time, one of the receptionists heard her screaming and came in to help keep her arm still. She actually did well with the actual procedure, it's just the anxiety that pushes her over the edge. That horrible IV start back in January has traumatized her still. Hopefully we can start to help her deal with this.
As we were leaving, Tara said to us, "I just figured out who you are. You're Julia with the beads!" Apparnetly the newspaper articles were forwarded to the entire hospital. Julia's bead have a new bag now. Ms. Stacy let her pick one out when we visited Monday. She was very proud of her new "poke" bead on the way out.
We grabbed a quick bite to eat from the cafeteria to take with us and headed out to pick up Carter. then it was off to KidsPath for the kids' counseling sessions and Julia's appointment with her nurse. They are both still doing great. This week they both dealt with "big feelings". They have a lot of them and there list of feelings are very different. They made feeling volcanoes and worked on ways to express those feelings and vent the pressure safely. They also talked about eruptions that get us in trouble. Then they had the opportunity to release some of their big feelings. It couldn't have been more relevant. They both have so many swirling emotions of anger, sadness, jealousy, frustration, pain, etc. Any one of those is a lot for a child to handle. Unfortunately, our life includes many of those emotions daily. It has really helped empower them to have a plan when things get heated or tense and to have tools to turn to like stress balls, art, pool noodle bats, balls to kick and throw, and words for what is happening inside. We still feel so blessed to see the kids and all of us getting the help we need to travel this road.
Julia's nightly cecsotomy flushes have been getting better. She has become a pro at the whole process and was able to teach Daddy how to do it all by herself. She is incredibly knowledgeable of all the things involved. We know give her the medicine, then disconnect the line and she gets in the shower for 20 min. Then we reconnect add the saline flush and she sits on the potty for the next hour. We have gotten her a padded seat insert and found a way she can watch TV while she sits. We also give her snacks while she's in there to help pass the time and keep her sitting long enough. We have made tremendous progress since the early days when she screamed throughout. She still does not like it and whimpers from the pain at times, but she is much more accepting. And for that we are very grateful.
Now we will have a break from doctors for the next week. I had my own appointments, labs, and tests today. After a full series of xrays and 6 vials of blood I think we should be good for awhile. Praying for a peaceful reprieve on the medical front as we start to prepare for Easter.
It truly is the most amazing playground I have ever seen!
Everyone was on on the fun. 
Then we went back to my parents for the family egg hunt and Easter dinner...
It was a beautiful afternoon to be outside. We enjoyed hanging out on the patio catching up and laughing as usual. Our family has faced many obstacles this past year with loss, cancers, divorces, and tough times. As we ride these waves together, family truly is the ties that bind. The house may have been turned into a mini-hospital with all of Uncle Jeff and Julia's medical equipment, but we keep on going- pushing through to the next step. Giving thanks for the blessings and bearing the burdens. This is not the way any of us dreamed our lives would have gone, but God's faithfulness continues to reign in our lives daily.
And we spent the next few hours laughing, reminiscing and just enjoying each other. For the kids that meant, up in a tree...
There were also some pickup basketball games...
Look at Uncle Jack!! He's got quite a jump shot! I have to give him some credit because just moments later he fell over Justin and hit the pavement... with his face. A quick trip to the ER (it's really quick when your wife works in that ER!) and seven stitches later and he was back at the party.
Poor guy :( It has been a great weekend all around. The house was full of dozens of people all weekend and the food, fun, and fellowship were flowing freely. Our cups overflow.
