As much as we have tried to pretend it wasn't coming this week, today was Julia's kidney testing at the hospital. She was going to start with a 24 hour water (and food) deprivation test and then the results would determine how to proceed from there. We were told to pack for 1-4 days in the hospital.
She was allowed to have one last meal on Wednesday night and then had to stop everything at 7:30pm. We let her pick the restaurant and she chose Japanese. Proved to be a good choice as she filled up on 2 bowls of soup, rice, and steak. We went home and topped it off with an ice cream cone and water hoping to fill her up as much as possible.
She has had an incredibly optimistic outlook about what was about to happen. When I told her last week I expected adamant resistance, but she accepted it. When she discussed it with her counselor she had the same approach. Thank you for all the prayers sent up for her! My parents came in town to stay with Carter since we were unsure how long our hospital stay was going to be. Julia decided she was going to wear her prettiest dress for dinner out.
It was a long night of packing. Can't forget to bring Kourage along with us...
We arrived at the hospital before 8am to check in and start her first round of labs. The desk had no record we were supposed to be there, so they sent us to the lab. Ms. Martha in the peds lab had no orders in the computer. Not a comforting start to the day. I don't know why this always seems to happen to us. We arrive at the hospital for a day of stressful tests and are greeted with, "Why are you here today?" I've tried to learn as a way to embrace the chance to outline what we want done, but at times that's probably too optimistic. Ms. Martha decided to page Dr. Lin and get a list of orders to enter in the computer. In the movie version of our life, this is where the ominous music begins to play in the background. I think Julia has the right approach...
The first set of labs went well. She was a trooper about the needles. It still amazes me the way she gets up close to watch the whole procedure. We were released to go up to the 9th floor to hang out in the peds onc clinic and let Ms. Pat handle the rest of the days labs up there. When we got up to the floor, Martha was on the phone coordinating with Pat and things were moving right along.
We did a few art projects then met up with Ms. Stacy so Julia could get her Beads of Courage for the mornings procedures so far. Then she decided we should make pictures on the table. Love this one!
When the Arts for Life table opened, she jumped at the chance to start creating...
Then it was time for labs again. With the memory fresh in her mind, Julia was building resistance. Ms. Stacy was so sweet to arrange for one of the therapy dogs to come visit Julia. Sadie is a 3yr old retriever lab mix who is being trained to work in our hospital. Julia of course loved her instantly.
Another urine sample ready to be sent down. Kourage is a biohazard master. Our fatal error of the day was letting her urine out of the safety of Kourage's grip. Back to that later...
We headed off to the lab, with Sadie in tow, and Julia began to dig in her heels. It took a while but we finally got it done. At this point we have gotten the blood, but Julia was mad and Sadie was scared by the lab chute machine in the wall.
They decided to drown their fears in a few games of fetch, catch, and hide and seek...
After a long play session, poor Sadie was exhausted. I knew Julia would be sad to say goodbye, but God amazingly had that one covered, too. We walked back out into the lobby to Colin leading a jam session. The gang's all here!
It was such a gift to us today to be surrounded by everyone we love and consider like family. It is extremely rare to have all the staff and volunteers there on the same day. During our stay today, we were joined by, Ms. Stacy, Ms. Pat, Ms. Betsey, Ms. Annemarie, Jeff, Nurse Nancy, Nurse Karen, Nurse Diane, Colin, and one of the pet therapy teams! Amazing! We could not have been more blessed. It really made the time go buy so quickly and gave Julia so much to do to keep her distracted and busy. By noon she had made 9 projects already and was back in the playroom with Stacy planning her next one. She actually made me a pair of earrings! I didn't know there would be presents! So cute...
We also saw lots of patient friends- past and present. Julia really enjoyed playing with little Anthony while he got his chemo. It was precious watching her be so sweet and good with him.
Around 2pm hunger and thirst were hitting hard. She was starting to whine and beg for water. I hate this part of the process. There are just no good responses to her pleadings. It breaks my heart every time. We passed the time reading her new horse books from Mimi and Grandpa. Then Daddy came by to visit and brought some fresh fun.
Ms. Betsey jumped in at the nick of time with a great project that Julia was thrilled to get started on. Another set of labs and she was free to go to the art table. I decided to check in with Dr. Lin's nurse when we dropped off these samples. She told me she had some bad news.
I braced myself for bad test results. Her news was nothing I could have ever imagined. The lab had reported all of Julia's blood results, but all her urine from the day was missing.
What?!?!
If they couldn't find it, the entire test would be a wash and we would repeat the whole process next week. Are you kidding me?!? I felt so sick and angry all at the same time. I went back upstairs to talk to Ms. Pat. Julia's urine was the only urine taken in the peds onc clinic all day and she saw it be delivered. It is not possible that it was gone. However time was now of the essence because these samples have to be refrigerated or they are useless. She told us she was going down to the main lab herself to straighten this out. Time to wait and pray.
Julia's art project turned out beautifully. She carved patterns onto a variety of foam circles and then colored each with markers to enable them to be printed on to paper. Then the flowers were cut out and she made stems and leaves for the final product. Beautiful!
By this point, Julia is so hungry, thirsty, and done. She is rapidly losing patience with everything and just wants to eat. Her poor little heart is just racing from the dehydration and she is pitiful. Ms. Stacy snagged her some biotene mouth cleaning swabs to see if it would help. Girlfriend gnawed on that swab like it was a turkey leg! Whatever works!
We moved our camp down to the 7th floor clinic awaiting some kind of answers. Nurse Linda came out and told us the urine had been found and they were determining if it was usable. Ms. Pat said when she arrived in the main lab there were 4 techs. One met her, one was on the phone with Dr. Lin, one was on the phone with Ms. Martha, and one was on the phone with Nurse Linda. Everyone of them was getting an earful about finding Julia's pee. It turns out it was thrown in a box. They have a box off to the side where they throw in everything they don't know what to do with. When a tech has free time they are supposed to pull the things out and figure out what to do with it. Argh! Ms. Pat had determined she was not leaving that lab until it was found. She took it upon herself to start digging through that box and she found it!! Pat, you rock! Such a relief. No one had told Julia what happened. I had decided if we had to start all this over, they were going to be the ones who had to tell her.
Now we had to wait for it all to be processed. As 5pm came and went, the clinic closed and everyone left. One sweet secretary stayed behind because she didn't want to just leave us. Around the time our sweet friend Donna (Haley's mom) came with her daughter Calyn. She had a surprise for Julia. She could not have arrived at a more perfect time! God knew that we were going to need a push for the final leg. She brought Julia a lifesize white pony! It is just like the one she adores at KidsPath. She named it Chloe and wrapped her arms around it. Her sad face is from the dehydration and starvation, but her spirit was so happy!
We decided to make ourselves comfortable on the floor and watch some Austin and Ally (Vinny's favorite show). Dr. Lin came out to talk to us and said we were still waiting on the lab.
Around 6:30pm, we finally got word that her kidney function was normal and her urine concentrated like normal! Huge praise!! It was better news than we ever expected! Dr. Lin's best diagnosis at this time is that Julia has a variation of psychogenic polydipsia. Essentially what this means is that as a toddler going through chemo, she had to cope with physical trauma and side effects of the drugs (including dry mouth, nausea, aching bones and jaw, etc.). She found ways to cope with these physical symptoms by drinking water. That behavior has now become a habit and a coping mechanism causing symptoms that mimic diabetes insipidus. Essentially she became addicted to water! In the grand scheme of things that seems great right now.
So the answer for us is to slowly wean her from 80-90oz of water a day down to 60oz and to see if we can find other coping means and habits that work for her. She will also start using a wetting alarm at night to help her night train. He is going to follow up with her in April when she goes back to see Dr. Fortunato (GI). We are so relieved and thankful for amazing news and a healthy kidney!
The next order of business is the cafeteria. Look out, Julia is on a mission! She filled her tray with pizza, nachos and cheese, yogurt, 4 rolls, and 2 cups of water. She attacked that meal like an hungry puppy and was ready to head home.
Kourage has mounted his trusty steed and we are out of here!
Thank you all for your prayers, support, love, gifts, encouragement, and advice. We are so blessed to have an incredible support system. The devotion and efforts of all of our Camp Brenner family today was above and beyond and truly brings tears to my eyes. And the prayers and love from everyone else truly sustains us. Thank you to everyone who stood with us today especially our family, friends, church family, and a special shout out to all my cancer mamas (y'all rock!). But also to all the strangers who don't even know us and took the time to pray. It means so much. Thank you!
We are happy to be home and sleeping in our own beds tonight. Feeling a sense of relief to have avoided another diagnosis, more tests, hospitalization, and surgery. Such a gift!
She was allowed to have one last meal on Wednesday night and then had to stop everything at 7:30pm. We let her pick the restaurant and she chose Japanese. Proved to be a good choice as she filled up on 2 bowls of soup, rice, and steak. We went home and topped it off with an ice cream cone and water hoping to fill her up as much as possible.
What?!?!
If they couldn't find it, the entire test would be a wash and we would repeat the whole process next week. Are you kidding me?!? I felt so sick and angry all at the same time. I went back upstairs to talk to Ms. Pat. Julia's urine was the only urine taken in the peds onc clinic all day and she saw it be delivered. It is not possible that it was gone. However time was now of the essence because these samples have to be refrigerated or they are useless. She told us she was going down to the main lab herself to straighten this out. Time to wait and pray.
Julia's art project turned out beautifully. She carved patterns onto a variety of foam circles and then colored each with markers to enable them to be printed on to paper. Then the flowers were cut out and she made stems and leaves for the final product. Beautiful!
Now we had to wait for it all to be processed. As 5pm came and went, the clinic closed and everyone left. One sweet secretary stayed behind because she didn't want to just leave us. Around the time our sweet friend Donna (Haley's mom) came with her daughter Calyn. She had a surprise for Julia. She could not have arrived at a more perfect time! God knew that we were going to need a push for the final leg. She brought Julia a lifesize white pony! It is just like the one she adores at KidsPath. She named it Chloe and wrapped her arms around it. Her sad face is from the dehydration and starvation, but her spirit was so happy!
So the answer for us is to slowly wean her from 80-90oz of water a day down to 60oz and to see if we can find other coping means and habits that work for her. She will also start using a wetting alarm at night to help her night train. He is going to follow up with her in April when she goes back to see Dr. Fortunato (GI). We are so relieved and thankful for amazing news and a healthy kidney!
The next order of business is the cafeteria. Look out, Julia is on a mission! She filled her tray with pizza, nachos and cheese, yogurt, 4 rolls, and 2 cups of water. She attacked that meal like an hungry puppy and was ready to head home.
We are happy to be home and sleeping in our own beds tonight. Feeling a sense of relief to have avoided another diagnosis, more tests, hospitalization, and surgery. Such a gift!
