Intro (repeat): I realized today that my “journal” entries from our first three days of finding out were on the iPad but that I had never posted them. I found them today and decided to post them. I can’t backdate – as far as I know – so they are just posted with today’s date as three flashback entries. They are verbatim from what I wrote then and I didn’t tone them down, as they are accurate to that moment. I am so glad to no longer be feeling the devastation or anger that the entries reflect and finding them today really emphasized for me how normal this has all become and how surmountable it also feels. Entry follows:
Jul 11
Can this really only be day 3? Our baby had a rough day. They went to take us down at 7 or so for her 8 am procedure but they had given her a bit more platelets and she spiked a fever again. On the way they gave her benadryl since the platelets were having an allergic reaction. She got really bad cold chills. They needed a chest x ray which was hard b/c she was chattering and shivering so fiercely. They ended up delaying her morning procedure, and when we got back she vomited a bit. They took us down again around 11:30 to still proceed with the spinal chemotherapy, spinal draw and marrow aspiration so that we could get a full diagnosis. Few poignant / tough moments today – I was looking thru some pics with lenox and she saw one of the chapel at St georges from the Xmas show. She said “that is a picture of me and god” — wow. Father Kevin came for a first visit and prayed with us, chatted and blessed Lenox. It was a nice visit and good prayer. Tough questions so far – can I go to school tomorrow, can Cooper come swim tomorrow, cant i please go home, i dont want to be here, and worst mommy, why does my body hurt? She tells us over and over her body hurts. We got her diagnosis today – she has the “regular” or more mainstream leukemia ALL. It was odd as they discussed this as though it’s a good one and I get that it is, its better than a worse case scenario but my girl still has LEUKEMIA! She will lose her hair over the next 4-6 weeks, will be ill for at least six months and I think the hardest to hear was that if all goes well she will be treated for 2 and a half years! She will be 6 YEARS OLD before we get past this — god oh god she better live to be 6 and 16 and 36 and on and have a long old bratty life! Jodi brought us a gift and had lunch with us – couldn’t have been better timed, she came as we got to the cafeteria and we were paged from surgery midway through eating. She was able to stay with our food and then we came back and finished eating. She also brought us hoovers dinner for Liz and I, and Lois came with fried cheese and pasta for Lenox and also ran to the house with Liz. Thank god for our friends and family.
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