Tuesday, August 21, 2012

first day of school second grade at St. Jude
Eli rarely speaks up when an adult asks him a question, if he even mumbles or acknowledges that he or she spoken at all. But, today, as a nurse was drawing his blood samples for testing (nicknamed “labs”), she was trying to make small talk with him as she worked. She asked two or three benign questions and he either ignored her or looked at me for me to do the talking. If the person has his or her back to me, I tighten my lip and squint my eyes at Eli and give my head a big nod at the person, then he mumbles something that I have to repeat for him anyway. But, today, after her first failed casts, the nurse said “What grade are you in?” He straightened a little, and swallowed to clear his weak vocal path, then said plainly, “second grade.” The St. Jude School program, sponsored by Target, is accredited as a Special Purpose School by the Southern Association of Colleges and Schools. Yep, he has a bona fide teachin’ lady teacher. She gives him homework and she keeps his grades. Many times he is the only one, the other times there will only be one other student. I'm sure why there are so little students. I don't know if traditionally patients are more transient than we are, or if parents do work at home, I can't imagine not taking advantage of this super program if at all possible. We go as often as we can that he is on the school schedule, which on a regular week is three times a week for an hour each visit. During the summer, the school program hosted “camps” a couple times a month for different experiences and interests, but his first day in second grade just started. So, as many of you have posted of your kids' pictures, I’m posting a picture of Eli’s first day of second grade. His back-pack does not have any books in it, just his TPN feeding tube. And, to be honest, he missed his first day because he had to get platelets during that time. So, actually, he missed his first day, but that is just a picky technicality. Also, today, since Eli’s counts had not bottomed out yet, we went to Toys R Us for him to pick out his NoMo Chemo toy. He did not get the Lego Gold Mine as I had expected, he opted for the Tomica Hypercity/ Big City Set and Police Headquarters. I put all the stickers on the train part earlier tonight. How could you have slept tonight without knowing that I had applied stickers to a train tonight? So, I am ecstatic to say that is as exciting as I’ve got for you tonight. Isn’t that awesome!? And, isn’t it awesome that I can write hundreds of words about nothing.
Eli playing his DSi with new shark stickers.
I also want to clear up part of my post from last night. When I spoke of the “road home,” I was speaking metaphorically in that now that chemo is over he is on a “road” to recover, which is the only way that he can go home. So, we are still in Memphis, and not going home for probably over a month or so because his body has to be producing its own white blood cells, his body has to be producing its own platelets, and his body has to be eating its own food – about 800 cals a day at least. So, we are in no way headed home, literally. Eli and I got to meet Mackenzey and her mom, Kelly, today. Please, say a prayer for Mackenzey. She was unable to have surgery because her blood is not clotting properly so they want to know why before they do a biopsy of a mass (on her lung?), bone marrow aspirate and lumbar puncture. Mackenzey also begins chemotherapy tomorrow, I think low dose over an extended amount of time. If you or your church class would like to send her a card, mail to St. Jude Children’s Research Hospital, ATTN: Patient Mackenzey Cain, 262 Danny Thomas Place, Memphis, TN 38105. I’m not sure of her age, but I’m thinking +/- 13. Tell her you are a friend of Eli’s. Ryan is at home enjoying his time with his family and feels good with no effects of the tumors yet. Lucy is at home and I think is also trying to go to school, and integrate back into home life, with some scans looming again, I think. Hunter is just hanging on, really. His oxygen levels, and blood pressure, and other chemistries are just all out of control. He is in critical condition, so please be diligent in your prayers for him.

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