Do You Know?

Do you know what today is? Probably not, but we plan to change that one person at a time.  Today is National Childhood Cancer Day.  One day set aside during Childhood Cancer Awareness Month for our country to remember the kids who fall victim to this beast.  Sadly, most people don't know, but we have faith that day will come.

Unfortunately, cancer is something we can never forget. It is a part of all of us and a war we have been called to fight.  And last night we were reminded that the battle wounds still remain.  We have not had much success with Julia's laxative medications in past weeks.  It is a daily frustration.  I feel something like a mad scientist just guessing and experimenting to find something that works.  We have no idea what is really going on inside her and we know these medications are likely creating long term damage, but we press on just trying to get to her appt on September 23rd.  Toward the end of last week, Julia was struggling more each day.  The pain was increasing, the days of no success continued to add up, she was becoming more lethargic, and had pretty much stopped eating.  We knew something had to be done and of course it was the weekend.  Doesn't this always happen? We let it go until Sunday afternoon when she wouldn't get out of bed, was complaining of bad stomach pain, and was now running a fever of 102.  I called the after hours service for the GI docs hoping to get some guidance.  Unfortunately I didn't get far.  The nurse said she had to go the ER and to prepare to be admitted.

This is life after cancer, surgery, chemo, and radiation.  "Sick" is not just sick anymore.  Dr. McMullen drove that point home with us earlier this month.  We can never just assume she has a stomach bug.  Every time she vomits, she has to get an abdominal x-ray to rule out bowel obstruction.  Not optional.  Well apparently these symptoms point to the same, so off to the ER we went.  We have reached the point where we don't have the bags packed in the closet all the time, but I can still pack for an admission in 15min.  I guess that skill sticks with you.  Julia was not thrilled, but cooperative and obviously miserable.        

They took her right back and got started.  They did all the preliminary labs and we actually found our answer in the process.  It turns out she has a bacterial UTI in addition to the bowel impaction.  We were relieved it was not an obstruction though concerned that she has another UTI.  Not sure what the urologist will do at this point.  We go back to him in October.  The ER doctor was great and listened to her history and recent struggles.  It was good to have another person's brain to pick and get ideas from.  He also got Dr. Fortunato on the phone (the GI motility doc we haven't seen) and we were able to get him to advise us.  He has told us to do whatever we have to with as many and as much of the over the counter products as needed.  It was a relief to get permission to do this.  Her ER doc said he has seen kids use them for months and thinks it is definitely our only choice at this point.

So five hours later we were out the door at 10:30pm to find a 24 hour pharmacy and dinner.  Then home to take all the new meds.  I am happy to report the combination we were given worked, finally.  We were happy to crawl into our own beds at midnight.  This is not how I thought the night would go, but we are so thankful for good docs and nurses who went out of there way to help Julia.  She wasn't too phased by the whole process.  Brenners' is still a second home to her.  She crawled right into the bed and flipped on Noggin.  They actually had MusicFest2010 on last night which was great.   

So today we have spent the day at home resting.  I am happy to say Carter entertained himself so I could sleep until 9:30.  Julia didn't crawl out of bed until 10:30.  She is doing a little better.  Still quite ornery, feverish, and emotionally fragile but better than she was before.

So today we remember all those fighting in the trenches of cancer, all those angels who have earned their wings, and all those survivors who carry their scars and move forward each day with hope for the future.  We were wearing our shirts...

This picture was drawn by another Wilms' Warrior- Mackenzie, age 6.  Here is her story...

 Madyson and Mackenzie were born that morning. Madyson arrived at 3:24am and shortly after at 3:53am Mackenzie was born. Twins. Born into the state foster care system. They were the 15th and 16th babies this birth mom had delivered. All of the surviving children were adopted years before.
The phone call continued. “ The bigger one is being discharged tomorrow and the little one will have to stay for awhile. If you would like, you could take just one” Seriously?? How could twins be split up? Who could do that? The state foster system could do that because there are never enough foster parents and placing one child is easier than placing two. They said they would give me 40 minutes or so to call them back because they really needed to secure a placement for the baby being discharged. Our lives were changed forever. Within 7 weeks, adoption papers were signed and they were baptized at Guardian Angels on June 24, 2001.

Mackenzie was diagnosed with a Wilms Tumor on 4/5/06 a few weeks before her 5th birthday. Her tumor pathology was Stage 2- favorable histology. She had her left kidney removed and completed 18 weeks of chemotherapy without any complications. During her off treatment scans we found out that a new tumor was growing in the left kidney bed. We also found out that our hospital had not sent her tumor to the Central Review lab and she had been initially misdiagnosed. Her tumor was actually Stage 3- Anaplasia. She should have received more aggressive chemo along with radiation. 

Mackenzie finished the correct protocol in February 2007 but we were told that not treating her properly upon diagnosis could affect her chances of a cure. It was recommended that we switch to a children's hospital, so we did. In August 2007, Mackenzie's 6 month off treatment scans were clear or so we were told. Within 3 weeks, she had an inoperable tumor in her abdomen. Upon reviewing the August scan it was clear that a 5 x 5 cm tumor was missed by the radiologist. Another hospital and another mistake. This mistake would be the begining of trying to shrink a very large mass. Mackenzie endured months of high dose chemo only to eventually find out that the surgeon could not remove the tumor. It eventually started to grow again and our beautiful daughter took her place in eternal bliss. Our hearts will always ache and our lives will never be the same without Mackenzie.

I think back on that day often and how one phone call and one decision changed the course of our lives. Was it just meant to be? Was this God’s perfect plan that I routinely question now. How does a perfect plan involve so much sadness and loss? I suppose one day I will have all of those answers that I need until then I have no choice but to trust that He knows what is best. So how could twins be split up?? Cancer splits up twins.

Mackenzie drew the picture on our shirts just days before she earned her angel wings.  

So today we carry the torch forward for Mackenzie and all the other Wilms' Warriors who have fought with all they have.  It is because of so many children and their families that we have the protocols we use today.  Cancer research is not perfected in the lab, it is done on children.  The thousands who have gone before are our heroes to those of us faced with this disease.  They deserve purple hearts for their brave sacrifice.  The least we can do is continue the fight, pray and support their families, and share their stories.  

The battle is on.