Ups and downs, plus the scary and funny

Sisters and Brothers,

Again, thank you for joining us on this journey, we are blessed by your presence in our lives. Our report card for our life on this earth is a simple one. Did we give clothing, food, drink, and shelter to those that needed it, and did we visit the sick or imprisoned. Each and every one of you either directly or indirectly has done that for us. With every dollar we raise, with every car ride or plane ride to Mechanicsburg or Memphis, you are supporting us in trying to live the life that Jesus calls us to. So here’s the good news, y’all are going to heaven, and it is gonna be one big party! (note the down home way I ‘spressed that).

Today was filled with the little ups and downs of life that in light of Catie’s situation can either be ignored as insignificant in the big picture, or magnified as the last straw on a heavily laden camel.

Some of the ups:

  • Ken at the Verizon Wireless store was FANTASTIC ! – both last night and this morning, he assisted us in getting an aircard for the new laptop, and 2 new cell phones for Christine and Catie so that they can stay in touch with each other and with all of you. He was great with Catie especially and really took the time to talk with her and understand our situation and try to make it more tolerable.
  • Mass at Sacred Heart was intimate and special, one of those small gatherings where you have the opportunity to add your own intentions. Christine eloquently expressed our desire for Catie’s quick and complete cure……Lord Hear our Prayer.
  • Ice cream at Baskin Robbins. Catie is going to have difficulty eating for a while. Her fatigue and the twinges of nausea that get through the medicine make her reluctant to eat, and leave her with almost no appetite. For a family that believes that meals are celebrations, not just needed fueling for the body, it is difficult to spend each meal prodding her to eat one more noodle, or one more spoonful, or one more bite, it is no fun for her or for us. However at around 7pm this evening, while she was playing with M.E., she looked so happy and so “Catie:”, we asked her if she would like some ice cream, and she enthusiastically answered, “YES”. We quickly jumped in the car and broke the speed limit to get to the ice cream store before the desire faded, and she ate a mint chocolate chip cone with reckless abandon. It was the most joy I had seen her have about food in over a month. It is still about the little victories…..don’t miss them when they come by.
  • Catie and M.E. playing, bicycling, and running around on the playground and in the fountain. To see them emerge from the big plastic slide with their hair sticking up because of the static electricity and then falling down laughing was truly wonderful,
  • Two days in a row without any real sickness, and 1/10 of the radiation treatments under her belt.

Some of the downs:

  • Every meal except for the trip to the ice cream store was a struggle. While I remember each of Christine’s pregnancies and the delicate balancing act that was mealtime, Christine and Catie have blessedly forgotten. We have learned an early lesson, Catie will need to keep a little something on her stomach at all times, even if it is just a cracker so that when meal times occur, it will not be such a battle to get her to eat.
  • We are experiencing a bit of turbulence tonight. The last time I felt this was freshman year at college. Remember you went out and bought all this great stuff, packed it in to your parent’s car and they drove you to college, hen mom and dad unpacked you and left. You went through the task of unpacking and setting everything up only to find out what wasn’t working correctly. Well, that’s were Kevin and I are tonight.
  • After writing out the day’s events long hand and faxing them to Kevin for the last seven days, the Catie Fund has a laptop thanks to the kindness of those who love us. We have a Webcam so that when we get the computer at home and it is set up with a Webcam we can talk to one another and see one another at the same time. Hopefully easing some of the distance, even if it is just for me. We also purchased a swivel sweeper.
  • The floors are hardwood and they get crumby and dusty and Catie need a job she likes and everyone who visits Grammy in South Carolina loves to swivel sweep. Finally, thanks to Verizon and our good customer status I have a new cell phone – same number for me just a better phone – no charge. Kevin knows how to use all of these things I am a bit iffy. If I read the manuals I’m more comfortable. Kevin never reads manuals; in fact he usually tosses them. So as we are trying to spend our last night together for 2 weeks apart this time, there are things to set-up, learn and do. Pressure. Not to mention Kevin is trying to make reservations to return in two weeks with Molly (who will turn 4 the weekend she visits with Catie) and his laptop or rather his wireless connection is not cooperating. FRUSTRATION. I don’t make things easier as I ask “how do I send a photo, never mind I’ll read the manual where is it?” Well, most of that passes with a few sighs as few sarcastic prayers “God, Christine says I should be specific in my requests…I’d appreciate it if I could purchase these tickets before Catie is cured and home safe and sound.” The ticket purchase did go through – PRAISE THJE LORD! Also the Lord hooked us up with a credit card that offers free unlimited companion tickets for one year. What a tremendous savings!

It was a bittersweet visit. I knew I missed Kevin, when I saw him I was overwhelmed by how much. Tears just fell from my eyes. They continued to fall as M.E. screamed for Kevin as I reached for her. This continued through this morning, but is better now just in time for her to leave. I know what you are thinking…keep M.E. with you. Am I right? I thought it would be a great idea until I tried to put her ponytails in and she tossed Catie’s toothbrush and the comb I was using into the toilet. I went from being a confident mother of 6 to a woman who couldn’t control a two year old. We needed to catch the shuttle to meet up with Kevin and Catie before her treatment, running with a screaming toddler under your arm slows you down. By the way she was screaming “I can walk Mom.” Then there is the sleeping, which Catie needs but M.E. still thinks we are in the east so she wakes at 6am. I quickly grab her out of bed and take her outside to the playground – if I had both of them (M.E. and Catie) what would I do leave a note…come join us on the playground if you can? So while it is financially free to bring M.E. down there are costs. While I can’t even imagine what all I will miss (though I know Kevin will do his best to keep me posted – I am a stay-at-home mom for a reason) it wouldn’t be the best thing for Catie and the care she needs. So tomorrow we say I love you.

Some of the scary/funny:

There are certain tasks that as parents and spouses one of you is more comfortable with. I had never changed a diaper before we had Maggie, and now I’ve changed 104,287, Christine has changed infinitely more. That is one we are both comfortable with. Flushing Catie’s Hickman line and changing the dressing is definitely one that I would be more comfortable with than Christine. So, let this be the official notification that as of Monday morning, Christine will be going to work at RiteAid as the Director of Merchandising and I will be staying in Memphis with Catie. No, that won’t work. Let me describe what this procedure entails and then I’ll let you know the “challenges” that Christine had with this. The hickman line is a plastic tube inserted in Catie’s chest and into a big vein leading directly to her heart. It is the line that will serve as a port for taking out blood samples and putting in medication. The tubes that stick out are about 12 inches long and are taped to Catie’s chest. Some things to avoid: Pulling the line out, not only would this hurt a bit, it would leave a hole through which all of the blood in her body could exit……not helpful. Releasing the clamps – possibly the same result. Kinking the line – doesn’t allow for the medication to get in. Not keeping the entire apparatus clean and sterile – potential infection directly into her heart – also something to be avoided. (this is probably why God designed the blood vessels to be inside the body). Each and every day, someone (Christine) will have to flush out the line to make sure that no blood will clot in the line. The flush is done with Heparin, an anti-clotting agent. Only 10mg/ml heparin should be used for this procedure, yet the nurse instructing Christine cautioned her to look at the vial she will be using to make sure that no one made a mistake and gave her 1000mg/ml heparin, which if injected into the line and therefore Catie, would stop her body’s ability to clot and could cause internal bleeding……….great. (note to self, read label on bottle). As I watched Christine flush Catie’s lines for the first time, I saw the anguish on her face, I felt for her. This is not what she signed up for when we accepted Catie from God as our child, yet in that very acceptance, it has become a task that she has been given. I am inspired by her courage to do this for our daughter.

I will try to end this on a funny note as I have been chastised for making people cry when they read the email updates. The nurse in trying to calm Christine and assure her that this will all become second nature told her that a 4-yr could actually do the flushing. So, Molly, when she visits on August 1st will try her hand at Hickman line flushing, and if she fares at least as well as Christine, and Catie still keeps a majority of her blood supply, she will stay in Memphis and Christine will come back to Mechanicsburg with me. Molly and Catie have always gotten on well….should work out just fine.

M.E. and I will be leaving Saturday night and getting back home at 2am on Sunday morning. If I could stay here, I would. If I could bring them home, I would. But thankfully, God is in charge of this journey and has a much better plan than I could ever come up with, so I’ll keep trying to follow it.

May the peace of God reign in your hearts and homes,

God bless you,

Christine and Kevin, and Catie, and M.E., and Max, and Maggie, and Mia, and Molly (line flusher in training)

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