Matters of the Heart

It has been an interesting week around here.  I called GI when we got back to come up with a new plan for Julia.  The nurse was very understanding and agreed we needed to find something better than the oral laxatives, but knew the dulcolax was not going to be a long term option.  She talked with the doctor and it was decided to put her on daily saline enemas.  The dulcolax is effective and convenient but long term use of the stimulant drug will damage the muscles in her GI tract.  So the safe alternative in her case is daily saline enemas.  We have been given our instructions and are gathering all the needed supplies.  We cannot use the OTC Fleet version because the phosphate will mess up her electrolyte balance.  I am dreading having to do this to her.  Unfortunately we have no choice.  This is not something that can be ignored.  It has to be addressed daily.

After a lot of prayer, discussion, and emails with fellow Wilms' parents; we decided to get a chest x-ray for Julia in September.  I called the oncology clinic to leave a message for Dr. McLean with our request.  When I told Ann our concerns, she scheduled it on the spot.  It means so much to me that they trust parents' instincts and honor our requests without a second thought.  So now Julia will have a chest x-ray on September 2nd.  We are praying that the 3 spots on her lungs have healed and disappeared, but if there is something we need to see, we pray that God makes that very clear.

Tuesday, I returned to the cardiologist to receive my Holter monitor.  I was hooked up and strapped in. 

 They failed to mention to me in advance that you cannot shower or remove your bra while wearing one of these.  Would have been nice to know in advance.  Thank goodness I took a shower at the last minute! It is going to be a long few days, especially with the 100+ temps.  I had to document all my activity and any symptoms I felt during the 3 days.  I find it all strangely ironic that I am wearing this contraption that is looking into my heart. 

 Can it really see what's in there?

• Does it know what it feels like to fear your child's cancer may relapse?
• Does it know what the scars of cancer treatment look like on a mother's heart?
• Does it know how it feels to give your daughter an enema just to function every day?
• Does it know my heart is swinging through fire and clinging tightly to faith?
• Does it know the pain of seeing other children relapse and die from this beast called cancer?
• Does it see and feel all the unknowns the same way I do?
• Does it know how much heart surgery was not in my plans this fall?

I guess we'll have to wait and see.  I get the results from the monitor recordings in two weeks when I visit the cardiac electrophysiologist.  I have been doing some research into possible surgeons in the event I do have to proceed with the ablation.  One of the toughest things lately has been the time devoted to medical research.  It is hard enough to have to deal with the medical situations we've faced, but as a cancer parent and cardiac patient, I also have to be an advocate for both of us which involves research.  It has been both consuming and empowering.  I feel like I have some good leads in both areas and have made some good progress this week. 

When the week began I was still struggling with the emotional weight of it all.  I have felt the burden ease a little day by day.  I attribute much of that to my precious friends.  I am blessed to have the kind of friends that call even when they know there is nothing they can say, that cry along with me when we need to, that aren't afraid of what may come, that send letters and emails at the leading of the Spirit, that drop in to do daily life because they just sense the need, and that never cease to pray for our family.  I have the friends that hold up my arms when I can't gather the strength and I am blessed beyond belief.