Appointment Updates

We were back at the hospital early on Wednesday for Julia's GI appointment with Dr. Fortunato.  He was happy with how she was healing and said we could start using it for its intended purpose.  He was concerned about her bladder issues but confident that Dr. Hodges will be aggressive and proactive in his approach.  He wants us to start flushing her with a solution of saline and biscodyl powder (the powdered form of her current suppositories).  He feels this is where we need to begin for at least the next month, then we will go back to him to reassess and adjust in May. Unfortunately getting this mixture compounded has proved to be quite a challenge.  We were finally able to find a pharmacy that could overnight order all the ingredients and mix it up for us.  Unfortunatley, they are 40 minutes away, so we have a bit of a trek to go pick it up.

After we made our follow-up appointments, We went upstairs to visit Ms. Stacy.  Julia wanted to share her big news.  Stacy was so excited and couldn't believe how far Julia had come in just one day!! Unbelievable! We pulled up the picture to show her and she was so impressed.  Julia has now become an overnight pro in doing her own cecostomy accesses, flushes, and ante-grade enemas. She proudly chose her new courage bead from the box and added it to her necklace, her face just beaming.

She chose this one because she loves the swirled color pattern. I love it because it reminds me of the beach...

We stopped by the Arts for Life table to do a few projects.  Julia painted a beautiful watercolor flower and made a mosaic landscape. Then it was time to head out to pick up Carter before our afternoon appointment. KidsPath came to our house today to complete Julia's home health care admission.  We are now able to receive nursing care at home, when we need it, to help with Julia's current needs.  This is such an amazing resource! Her nurse is actually a former oncology nurse from our floor.

The kids also did some medical play therapy with the dolls.  Carter was eager to finally have a chance to use the cecostomy on a doll.  Julia will not let him anywhere near hers and its driving him nuts.  They accessed and flushed all the dolls.

Then we moved right on to surgeries.  The kids were in the driver's seat and we just followed their lead.  We started with IVs and soon moved on to nephrectomies, open heart surgery, and abdominal explorations.

I always have to put a disclaimer on my family when it comes to playing doctor.  We are light years beyond a normal well-check.

We are hoping to use some of this type therapy to help Julia cope with the bladder catheterizing.  Even after having dozens, it is still very traumatic for her and we hope to help her find some place of control for the future (and some more beads).

Julia is feeling good.  Still having some stomach pain and we are trying to find the best formula for sleep.  The exhaustion is taking its toll.  Sleep deprivation is torture and makes it much harder for all of us to get back to normal. Wednesday was a late night.  It took longer than normal to get all of Julia's laxatives to work, so we had to keep her up until we were finished. Poor thing just couldn't stay awake...

She has been doing better with going to bed at night because of her beads.  They bring her so much comfort.  She falls asleep with them strung across her pillow so she can watch the radiation beads glowing.  She said when she wakes up during the night she holds on to them to help her feel brave.

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We've told her many times over the past few years how brave she has been and how strong she is, but having her beads now has really brought those feelings to the surface.  When she holds them herself and sees what she has accomplished, it can't help but make her realize what a warrior she's been called to be. She vividly remembers all of these hundreds of procedures.  I actually put her beads in sequential order for her so that they actually do tell her story as it has unfolded...

I want this to be a record for her so that she will be able to remember and share her story when she wants to tell it.

• yellow= hospital stays
• red heart=PICU
• light green=scans
• stars=surgery
• orange=portacath placement
• blue=clinic
• black=portacess, IV starts, labs
• white=chemo day
• magenta=ER
• lime green=fever, isolation, neutropenic
• face= hair loss
• turquoise=line placement (NG, foley, etc)
• purple=infusion
• red=blood tranfusion
• white circles= birthdays
• large pink bead=100 beads
• speckled glow beads=radiation
• gray=dressing change
• purple heart=end of chemo
• bumpy=tough procedures
• rainbows=care team/KidsPath

It still takes my breath away to look at it all at once like this.  The strand is 7 1/2 feet long, just shy of 200 beads.

And our child was fortunate to have one of the shortest chemotherapy cycles and one that did not require inpatient chemo. It will never make sense to me why children are called to endure all of this.  And for too many the end of their strand is not a victory, but instead a Glass Heart as they earn their angel wings. I want to see the day when we don't need those Glass Heart beads anymore.  And the day when every child's strand ends with a Purple Heart.  Sadly, that is not the end of the story.  Julia's string continues to grow.  There are already several feet of beads after her end of treatment and the strand just keeps getting longer. I pray that we see a change in our lifetime.  A day when pediatric cancers matter in this country and all the parties at play find a way to fund the research and the drug development our kids desperately need. A day when we can treat and cure all 47 pediatric cancers without destroying the precious children in the process.

I was moved by Ashton's words as she reflected on Lily's Beads and the experiences of the day.