Monday, August 27, 2012

What a difference a day makes!

Karen (we refer to her as one of our guardian angels) has been our Social worker pretty much from the beginning. She has been by our side during each clinic visit and hospital stay. Anything we could possibly need to know, Karen is there with the information. Thanks to her we were able to get the shots for Zack, got insurance, hooked us up with an organization that helps with food and gas while at the clinic and hospital. Helped us with paperwork needed for school, letters from the doctor for insurance, on and on and on... Words can not describe how grateful we are to her. (and Miriam whom I met on first day) It's amazing how "easy" things seem when the right people surrounding you. Now if Karen would bottle up her energy and share some with me!
 Last night Zack was extremely pale with dark circles under his eyes and white lips.  His mood reflected the upcoming week. This is the treatment that hit him the hardest his first week. He was angry and missing his school friends. One of his friends is taking several of the automobile classes that he was signed up for and shares a lot with Zack. He feels like he is missing out on a lot. We remind him that he has next year to take all automotive classes and will be able to focus on his future. This year, he must graduate High School and  focus on staying healthy and heal! I also remind him not to begrudge his friends their journey, though I totally understand his feelings. He says he doesn't begrudge them anything, he just wishes he could be there with them. Painful for a mother to hear when she again, can't fix it!

This afternoon when I pick him up for his blood work, his color is back to normal and he is in a great mood! Though he's not looking forward to tomorrow's treatment, he is ready to move along. The numbers come back great! We can resume as scheduled (when his count is down, they hold off on treatment for a couple of days). The doctor insists on him taking the Kytril for his nausea and I tell her that we already decided no matter how much it costs we would get the for him. On the way home I call the pharmacy and discover that the medicine is $223.00 for 60 pills (not 7 as previously advised). They won't have it in until tomorrow, but that will work out perfectly as we can pick it up on the way home.

Zack brings me back to work to finish up the day and meets his friend at his car to work on it a bit. It's good to see him in a better frame of mind. He and Drake are putting on his front and back bumpers and working on the chrome. They are covered in all sorts of dirt, oil and anything else they could get their hands on, but both with big smiles and a sense of having accomplished something further towards the refurbishing of his car.  Zack admits that for the next couple of days, he is more than likely not going to be up to much, so he wanted to get as much done today as possible.

They pick me back up from work to bring me to the local Red Cross blood drive.(man do I miss my car and I'm STILL waiting to put the lashes on the headlights, which says A LOT about my patience level right now)  I committed to donating blood at a friends church, something I have done only once before and "kept meaning to do again". Determined, I set up the appointment awhile ago and am so relieved that I am again here. Having an even greater understanding of the need of blood for transfusions, to donate platelets and set up for the bone marrow registry (though I'm not sure how to do that just yet) I am more committed than ever to continue donating on a regular basis. I have already set up an appointment to meet with someone at the hospital when Zack is next there to donate platelets. I'm going to be there anyway, so why not help someone else while I'm there.

I get home and start to work with Frank to finish up dinner when I look through the mail. Benna and Seth (Aunt Lee's daughter and son in law and dear friends) have sent us a generous gift.  They live in Boston and Benna was one of the first people I contacted about us possibly going to the Boston Children's Hospital (listed as one of the leading Hospitals for the treatment of Ewing Sarcoma). Since they are involved in the community I knew that Benna could do some additional research for us regarding the best care for Zack. Thankfully, we were able to stay locally, but our decision was clearer when we knew the same protocol was offered around the Country. Benna and Seth graciously offered for us to stay in their apartment, which is close to the hospital, should we have decided that is where Zack needed care. More guardian angels in our lives.

Drake joins us for dinner (my crock pot beef stew), mac and cheese and salad. Once we all  finish and Drake heads home , Zack heads into the kitchen to do KP (much to his dismay, he still must do all of his chores.. unless he is in really bad shape). He takes a shower and all of a sudden he calls me to the bathroom. "Mom, come here!" He has shaven the front of his head. "I'm tired of the patchy spots all over my head". He has cut himself in a couple of places and having seen enough blood today to last awhile, I become squeamish. Luckily the blood thinner doesn't cause him bleed too much. He asks for my help to shave the rest of this head. Hello??? "WHO IS THE BALD ONE IN THE FAMILY?" I call Frank in to help finish the job and he does so with the expertise he has shown for years after doing his own head. Zack won't let me take a picture until tomorrow, so....more to follow!

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