{"id":26,"date":"2008-06-27T17:27:17","date_gmt":"2008-06-28T00:27:17","guid":{"rendered":"http:\/\/www.chloewatts.com\/wordpress\/?p=26"},"modified":"2008-06-27T17:27:17","modified_gmt":"2008-06-28T00:27:17","slug":"friday-june-27th","status":"publish","type":"post","link":"http:\/\/www.chloewatts.com\/wordpress\/?p=26","title":{"rendered":"Friday, June 27th:"},"content":{"rendered":"

Hello all, Dana here with an update.\u00a0 <\/span>Its Friday, June 27th and I know this because Chloe asked Daddy to write the date on her board.\u00a0 This was helpful!<\/span><\/p>\n

The name of “Fred” (the tumor) is medically speaking: Juvenile pilocytic astrocytoma (glioma)<\/p>\n

Chloe\u2019s first decent day came yesterday as she had a reprieve from the high fevers even though its still hitting around 100.6.\u00a0 She and I went down the hall to the starlight lounge (okay so this is a little theatre created by Hollywood video complete with big screen\/velvet red curtains\/comfy red leather chairs and twinkling stars on the ceiling) about 845pm last night and we sat together in a chair per her request.\u00a0 This tells ya how little SHE is.\u00a0 We watched the last of the film, Nancy Drew.<\/p>\n

For me this seemed a HUGE deal.\u00a0 It showed an interest in life again.\u00a0 We stayed up till the last of the medical routine was completed, around 1:00 a.m.\u00a0 The reason for this is her antibiotic schedule.\u00a0 Harold (the IV pole) beeps when the antibiotic is near end, then beeps again when it\u2019s ended.\u00a0 I’ve learned the button routine on this pole far to well for a non-nurse.\u00a0 Our best window for sleep is from 1-4am.\u00a0 Chloe said this first thing, \u201cI got ALL my sleep last night”\u00a0 and I can believe that.<\/p>\n

The doctor\u2019s huddle this am gave us the news that we are still in the hospital into next week.\u00a0 Chloe still has some other hurdles to cross.\u00a0 They are really careful here.\u00a0 And while I’m mentioning my newest family (the medical team of docs\/nurses\/child life experts\/housekeeping\/social workers and cafeteria folks) the words THANK YOU to them seem to have taken on a new meaning.\u00a0 Love is alive here.\u00a0 I have amazing new appreciation for nurses.\u00a0 They work 12-hour shifts and still are on the ball, kind and loving.\u00a0 Always asking if there is something they can do for ME as well.\u00a0 My hat is off to you ladies and gents.<\/p>\n

I also want to thank my place of employment for the incredible gift of time away with nothing other than we miss you and you have a place to return to…. take care of Chloe and we’ll see you when!<\/p>\n

The future treatment plan is still a bit vague.\u00a0 What I understand per this mornings huddle is we will wait 3 months and do another MRI.\u00a0 Another surgery is not out of the question.\u00a0 Chloe heard this and piped up\u201d I never want another surgery, ever”.\u00a0 It\u2019s still her best chances, the doctors say…to remove ‘Fred’ entirely.\u00a0 They aren\u2019t speaking about radiation or chemo at this time.\u00a0 Something changed there and I don\u2019t know what.\u00a0 Perhaps it\u2019s the risk of radiating and causing another tumor, besides Fred.<\/p>\n

I had a chance to check out some books on the subject of childhood brain tumors. They are still fairly rare.\u00a0 Only about 2,200 of them in the U.S. per year and about 3,400 combined brain\/spinal cord tumors.\u00a0 I got this info from a book from 2007.\u00a0\u00a0<\/p>\n

So now our wish is for Fred to shrink and shrink and slough off.\u00a0 Hey, we’ve come this far…why not ask for more?<\/p>\n

For all of Chloe\u2019s friends, I do want to say how amazing you are.\u00a0 She has been looking at each card and note.\u00a0<\/p>\n

I do think it\u2019s appropriate to end with this.\u00a0 Chloe has 2 other friends who I won\u2019t mention as I don\u2019t have permission but the three girls created their own Harry Potter Club.\u00a0 Chloe plays Harry. The other day while in PICU, we received a card from Chloe\u2019s friend and it was the 3 of them…hand drawn as Harry, Hermione and Ron.\u00a0 Underneath were these words which I love, adore and will keep tight always because I know it to be true…<\/p>\n

“Friendship is the most powerful spell”.<\/p>\n

Fourth graders ROCK don\u2019t they????<\/p>\n

Love and Light,
\nDana<\/p>\n","protected":false},"excerpt":{"rendered":"

Hello all, Dana here with an update.\u00a0 Its Friday, June 27th and I know this because Chloe asked Daddy to write the date on her board.\u00a0 This was helpful! The name of “Fred” (the tumor) is medically speaking: Juvenile pilocytic astrocytoma (glioma) Chloe\u2019s first decent day came yesterday as she had a reprieve from the […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"","footnotes":""},"categories":[3],"tags":[],"class_list":["post-26","post","type-post","status-publish","format-standard","hentry","category-daily-news-post"],"_links":{"self":[{"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts\/26","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=26"}],"version-history":[{"count":0,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=\/wp\/v2\/posts\/26\/revisions"}],"wp:attachment":[{"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=26"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=26"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.chloewatts.com\/wordpress\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=26"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}