After a full day Monday at the hospital we had to be back to do it all again on Tuesday. The kids were happy to find out Ms. Betsey would be there, so we were able to do some art projects when we arrived.
Then we grabbed some lunch in the cafeteria- we all love that place! And went up to check-in to the cardiology clinic. Love this guy...
Julia was a great little patient. All of these tests are such old hat for her. She's been doing them since she was two and has always just climbed right up and quietly cooperated.
Her tech, Tammy, was wonderful and did a great job with the echo and was very sweet to both the kids. We are still waiting on the results. Hopefully Monday the clinic will call us with them.
Many people have asked why the echo's are needed. Julia received 3 chemo drugs. The doozy drug in the trio was doxirubicin (an anthracycline). This class of drugs are cardiotoxic at every dosage- not a comforting thought when we used to pump it into her port directly leading to her heart. These patients are at 15 times the risk for heart failure, 10 times the risk for heart attacks, 9 times the risk for strokes, and valve and conduction issues. The highest risk group is 3 year old females, which is where Julia falls. Congestive heart failure is staged on a continuum A thru D. Our kids are automatically Stage A just for receiving the drug. The damage is a cumulative process usually becoming an issue at 10 or more years after treatment. As the heart is remodeling itself the ventricular walls thin as their dimension increases which raises wall stress. Fractional wave shortening is usually seen beginning at the 10 year mark. The annual monitoring is done to allow docs to intervene as it progresses from Stage A to B, after that it becomes progressive and nonreversible. This is one of the many reasons we desperately want safer treatments for our kids. The chance of congestive heart failure with other chemo drugs is <1%. We have to find other options for anaplastic cancers.
After cardiology we checked into the GI clinic for Julia's follow up for her cecostomy tube. The combination of the new computer system and Dr. Fortunato's always busy schedule led to a three hour wait. The kids did great and were enjoying their playtime. As the afternoon drug on I decided to take Carter upstairs and drop him off at the Arts Connect class we were going to later. Julia and I continued to wait and read books and played games. When Dr. Fortunato arrived Julia turned into a mess. No idea where it came from. He is the sweetest man and has wonderful rapport with her. He has never done anything even mildly painful or invasive in his office and most visits are primarily talking. She apparently was done with all things medical and was angry her brother was upstairs without her (wish she would have shared this with us). It made for a very stressful appointment and she never did cooperate. Very frustrating when we have to wait so many months to get in with him and he is the one helping us with her cecostomy. Ugh. Good thing she had counseling at KidsPath the next day to process these feelings and work on more constructive and cooperative outlets.
The good news is he was pleased with where she is right now and wants us to continue to try and lower the dose of the medication we put into her cecostomy every evening. We are still hoping for her colon to regenerate and heal completely. Data shows that 70% of kids regain full function and this takes an average of 4 years. We are 18 months into this process. So we will continue to chart and tweak and pray for continued healing.
Before leaving we were able to catch the end of the art class upstairs. Once a month Arts for Life holds a class for the patients and their siblings with a separate class for the parents where we can talk and support each other. It was a sweet time with Rima and Wesley's mom and some much needed encouragement after two long days. So thankful for our Camp Brenner family.
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