Finally, Friday!

The last half of the manometry test was rough.  Julia ate her breakfast (more pizza and crackers) and then Candace came back to finish the testing. We were happy to have her doing our test.  She did Julia's other manometry test back in August and still remembered us. She administered the stimulant drug into the lines, running directly into her colon.  She started to cry almost immediately from the pain.  There was nothing to do for her, aside from laying next to her.  She had to remain still in the bed for the duration. It was a long hour.  Dr. Fortunato came in during the end to watch and then review the hour's data.

The good news news is her colon does respond to stimulants and it is showing a fairly coordinated motion.  The problem of course being that it does not do this without drug stimulation.  Over time these drugs will lose their effectiveness (we've seen that happening already) and the long term use causes damage to the muscle- much the way steroids do.  He reassured us that seeing this response on the screen is a wonderful sign.  It tells us that therapies/interventions have a chance at working.  The other possibility could have been no response to the drug.  They had another patient down the hall with that outcome.  The solution to that is a permanent colostomy.

We were excited to see her body respond and eager to hear the options.Dr. Fortunato said we are determining where she falls on the spectrum of treatment.  Doing nothing and waiting is obviously not an option because of the duration, the severity of the colon dilation, and the damage being cause to the bladder.  He still deciding between the available surgical options.  I was under the impression from what his nurse told us, that we would leave with a surgical plan and rough schedule.  As it turns out, just like the oncology floor has Tumor Board, the GI/8th floor has Surgical Board.  He will present her case to all the other surgeons and a plan will be made.  We see him again on February 4th.

Not for three. more. weeks.

It is actually the same day we see Dr. Hodges again. I must say that is not at all what I expected to hear.  But I feel like we are so much closer to a solution and I respect the fact that decisions in this hospital are made by a team of great minds.  Of have nothing but the utmost respect for the pediatric surgical team at Brenners, so it is comforting to know these minds will be working together.  I asked what we were supposed to do in the meantime and he said the same routine we have been with the 3 laxatives a day.  I also feel like the worst is likely behind us.  The rest will be tough and the road ahead is long, but we pray this week was the worst of it for Julia.

They came in early afternoon to start her discharge.  We got all her lines out.  There was lots of tape removals and tubes to be removed from sensitive places.  She was not happy, but really wanted to go home.  Then I told her it was bathtime.  This child had some serious funk that needed to be removed.  She has been covered in mess more times than I care to remember this week and I could not wait to get her in the tub.  Once she was in, it was as if we washed away the sad JuJu and the child we brought in her was back again.  It was so good to see her smiling and chatting.  She soaked while I packed.       

Then we headed up to the 9th floor.  Ms. Betsey had come down to do art with her and I told her we were getting out.  She told us she would wait upstairs and Julia got her own private art class.  She was so thrilled.  I went to clinic to talk to the nurses and get Julia's CT results.  None of the doctors were around and Diane had not seen them yet.

I am thrilled to report that everything looks great and we were given an NED!! 

Huge praise!! Hearing those words will never lose its power.  It is something we never take for granted and we know it is an undeserved, unearned gift presented to us for the next 3 months.  We will cherish it every day.  They said everything they had looked good and we set her next clinic appointment for April 7th.

We spent some time catching up with all our nurses.  Nancy was so sweet and took Julia to the birthday closet.  She said with all the suffering this week, she deserved a surprise for her bravery. She is still our little superhero!

As we headed out of the hospital, we stepped out on the ground floor and Julia said, "Aren't we going to the cafeteria?" You can't say no to a kid that was starved for most of the week.  She was so excited about her food.  It was so cute!

 

We headed home and she napped in the car.  I think the walking from the hospital to the car did her in.  She was happy to be home.  Carter and Mimi had everything ready to welcome her back.

We decided to head to The Loop for dinner.  It was our monthly fundraiser night for the Kids of Childhood Cancer Foundation.  We really look forward to the time to see our friends from the floor.  Carter and Vinny are such a cute pair.  They love to play together and always have a good time. I just love that kid!

We all hit the pillows a short time later.  The effects of a week in the hospital hit you pretty hard when you let your guard down, your body crashes, and it all hits you at once.

We had a very sweet moment at bedtime.  I was putting Carter to bed and catching up.  I have seen him very little this week.  Then we talked about Julia's hospital week and everything that happened.  He also wanted to know about her scans.  When I told her there was still no cancer, his little face just little up.  About that time, Julia peaked her head in and Carter told her to climb up in bed.  She crawled in between us and he couldn't stop hugging her and telling her the good news over and over again. Then we prayed together, sang songs, and headed off to sleep.

We all slept well and woke up this morning feeling refreshed.  The kids have been looking forward to disassembling the gingerbread house.  It is one of their favorite traditions.  Every January, they break out their play tools to destroy the house and have a snack.

They were definitely successful...

and the rewards were yummy...

Julia has rebounded very quickly.  Once she caught up on eating, drinking, and sleep she was back to her old self and ready to go.  It has been a wonderful Friday with the blessing of TWO fresh new lives for our friends...

fun playdate with friends...

...family night at Feeney's and just being able to get out and enjoy the sunshine and fresh air! Sometimes it's the little things that touch you the most. So now we wait until the next steps and enjoy the time to regroup.

We thank you all for your love, support, encouragement, meals, and prayers this week.  We could feel the love of so many and are feeling incredibly blessed with good results.