GI Monday

We spent the day at Brenner's on Monday.  It has been a long time since we were there for a whole day like this.  We started on the 9th floor.  A local church group was doing a beach party for the oncology kids and their siblings.  They were very sweet and spent a lot of time really getting to know each kid.  Their fun decorations, props, and music really brought a party feel to the floor.

Julia loved the fishing game.  The volunteer had a great sense of humor and had her catching all sorts of crazy things.

Carter is always looking for an eager and willing board game opponent and found one easily.

Julia prefers play-doh to competition. Though she did play a few fierce rounds of Hungry, Hungry Hippo.  They had a bunch of Mr. Potato Head pieces to add to their play-doh creations.  The sweet little girl at the table with her made the entire cast of Toy Story.  Her figures were really impressive.  I wish I had a picture!  

While the kids were happily playing, I had the chance to meet with Jeff, who heads the 9th floor support program.  Some parents from our floor started a non-profit recently to help improve the lives of our families.  I am so happy to have the time to join the board now and do what we can to help our Camp Brenner families.  Some of the most pressing needs right now are the lack of working TVs and DVD players on the floor.  Any of you who have worked in these type settings now how tough simple things like this can be.  There are lots of rules about electronics, compatibility, approvals, inspections, codes, etc. that add hurdles to every process.  But, we are cancer parents and we eat hurdles for breakfast so we are not giving up! 

While we were on the floor we had a chance to catch up with all our favorite doctors and nurses.  They will definitely be our forever family.  Nurse Karen was so excited to see all of Julia's hair.  She actually has a new haircut, too and the two of them look a lot alike these days :) I'll have to take a picture Thursday. They decided to go ahead and do all her labs while we were there so we will have them back to discuss on Thursday.  We got the urine done with no problem then headed into the lab for the blood.  Let me just say Julia was not giving it up without a protest.  Sh is so clearly a child out of treatment these days.  The same child who laid completely still for IVs, port access, and chemo lets everyone know she does not want to do this anymore.  She still has to and we all proceed as if she weren't yelling at us :) The nurse and I both laugh because it is such a good thing to see these kids get their fight back and their desire to be free of all this.  The funny part is, once she gets her band-aid she turns and smiles, says thank you, waves, and blows the nurse a kiss.  You crack me up Julia!

We spent some time in the playroom playing with the kids and talking to Stacy, our favorite ChildLife specialist.  We had a big load of donations from our family and friends and there is nothing more heartwarming then to help out our favorite floor.  I love to see the surprise on her face.  We will always give back and encourage others to do the same.  We want to pay forward all the love we have received.

As usual the kids were excited about eating in the cafeteria.  They love the wealth of choices.  We finished our food in time to play on the rooftop playground before Julia's next appointment.  Carter is happy to finally be welcome back at the hospital.  It was tough on him the past year with the H1N1 lockdown that prohibited siblings from being in the building at all..

Finally, we headed to GI for Julia's appointment- a little anxious but eager that the day is finally here to talk about what's going om with her. 

 The afternoons in clinic are busy, so we waited in the room for a while before a med student wandered in.  When the doctors are held up, they come in to talk.  He was actually really good and took a great history and notes of her situation.  When Dr. Goodman came in, she seemed upbeat.  She did her exam and said her belly feels soft, but her lower abdomen is completely full of stool.  She can get it all through, but it doesn't leave her body.  We reviewed what has been happening the past two months and she said they have reached a few conclusions.  Julia has been on the daily miralax now for several months and consistency is not an issue.  We have cleaned out her intestines on several occasions ruling out lingering impaction.  The problem is she lacks the physiological ability to empty her bowels.  So, Dr. Hodges was correct last week.  Julia's bowels no longer function normally because of the damage caused by 8 days of full abdomen radiation.  Bowel incontinence I believe is the technical term.

It was discouraging to hear the conclusion, but I was eager to hear what the next step was.  The doctor looked at me and smiled and said, "We just have to have faith.  We need to believe that her body will heal and find a way to function.  We see this often and after a few years something happens and things start to work again.  You just need to hang in there and have faith it can happen." I actually wanted to laugh, not in a mean way, but because God has been teaching us that lesson for the past couple years.  I don't know why I would even question that that lesson always applies in medicine, too.  That said, the doc was over the moon excited to find out Julia was "pee" potty-trained.  Apparently they did not expect her to be either.  So, we will celebrate that milestone and just accept the rest.

We did not talk about the "what-if" part.  They don't want to go there yet because this is such a slow process.  So for now the next step is to stop the miralax and give her stimulant laxatives daily to force her body to do what it can't.  They will see us again in three months to reevaluate.  So the diapers and pullups remain.  Can I tell you how many times in the last two years we have told ourselves we were buying diapers for the last time? Unfortunately, this is going to be a long process.  It makes me sad, but because I know she feels somewhat responsible.  It has been hard for her to not be able to take swimming lessons or gymnastics because of wearing diapers.  It breaks my heart every time she says, "I will try and do it so I can go."  She is able to participate in some events for her age and they make an exception because this is now by definition "a disability"- hopefully short-term.

I sat down with her this morning to talk about what was going on and why her body doesn't work like it should.  It is not an easy conversation to have to tell her what the radiation did to her while it was saving her life in language fit for a four year old.  How do you explain that we used high-dose radiation laser beams, directed at her entire abdomen, designed to damage the DNA of all her cells? Anyone?  I know, I hear the crickets, too...

Radiation therapy is such a double-edged sword.  On one hand I am SO thankful the doctors at our clinic and the Tumor Board knew without a doubt that she needed radiation.  It was such a shock to us and we resisted initially, until we understood the aggressiveness of her from of cancer (anaplastic nephroblastoma/Wilms').  We have seen so many children in the past year at other hospitals who only received the light protocol, only to relapse a year later. Sadly, most of them eventually lose their battle to this disease.

When it comes to cancer you get one really good shot at it and after that the odds drop off fast.  Chemotherapy agents attack every dividing cell in the body in an attempt to kill cancer cells, wherever they hide.  Any cancer cells that survive chemo, mutate to become even stronger and therefore difficult or impossible to kill.  That is why radiation is added in so many cases.  The doctors had to ensure there were no lingering microscopic cells in Julia's remaining kidney or abdomen.  I still remember Dr. McMullen (radiation oncologist) sitting down with us saying, "We have to get this right the first time.  We don't want any regrets."

So that is our GI bowel retraining plan for the next 3 months.  We go back to see them in October.  Thursday morning we report to radiology to start scan day...