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  • Written Aug 20, 2012 7:34pm

    825 days ago Cara was diagnosed with cancer.  Since then she has had more than 1000 doses of chemotherapy.  Tonight she had her dose on top of a strawberry cupcake, slathered in icing.  

    Tomorrow she won't be getting chemotherapy. 

  • Written Aug 6, 2012 11:02am

    Well, hello there.  Miss me?

    I know it has been almost a year since I last wrote.  I haven't forgotten you.  I have been busy, but that is not why you have not been subjected to updates and musings.  I have been stymied by the inability to access this site with the "editor" password.  A re-jiggering has occurred in this foreign realm (thanks C) and given my voice its platform again. 

    To answer your questions:  She is doing very well, thank you.  And, yes, she is still getting chemo at home every day.  She still goes to the clinic a few times a month for chemo too, and has suffered complications here and there, leading to a lower dose of chemo than the protocol requires.  But so far, so good.

    Seems like forever, right?  And yet, time flies.  She is scheduled to finish this last phase--maintenance--soon. 

    She was diagnosed on May 18, 2010.  She was 7.  She celebrated her 10th birthday last month with a pink Barbie princess cake; got a bike; and hugged her twin with great delight.  Tessa hugged back even harder.  Then I squeezed them both together, as Cara yelled, as she always does, "Group hug!"  Then, mid-hug, as she also ALWAYS does, "I can't breave [breathe]!"

    The doctors and nurses have warned me that there is often high parental anxiety associated with the end of chemo.  Not the party atmosphere the onlooker might expect.  After all, every parent is well aware that the ugly beast can return, and may be more likely to do so when the chemo stops.  Though I do all the things my mother says--it's true! shockingly often!--to try not to anticipate anxiety, I feel it breathing down my neck.  Once a month we will hold our breath while they check those counts, for a long time.  Maybe always.  Of course, always.  There is no such thing as a simple bruise in our world anymore. 

    And it is a funny--not funny, surreal--thing when the mothers travelling down their own version of this journey are in a room together.  People expect, I expected, that there would be much conversation in pediatric oncology department waiting rooms and playrooms.  In more than two years, I have spoken to ONE other mother watching her weakened child try to play with my girl, for about 20 minutes.  I did  become friends with one mother I met at the Believe in Tomorrow House, and visited her warrior at Hopkins when she was still well enough for visitors.  And I have, of course, spoken to the "mother I knew before any of this began (for me, not for her)"--friends with many of you readers--whose little warrior I saw just yesterday. 

    Why so little connection?  Well, one of you has a child that is sicker at that moment than the other.  One of you has a child that is healthier at that moment than the other.  No one knows whether one will beat it, both will beat it, or neither will beat it--regardless of how well or sick they are at the moment.   

    And what will those mothers talk about, exactly?  On a recent, lovely, treat of an evening (thanks A!) one of the warrior mothers and I chatted with the fellow guest about many things, until, finally, the elephant had to be addressed.  Well, how is she doing?  And we were off.  And seriously, from that point on I suspect our friends were trying to figure how to jump ship.  Praying for the Annapolis dock to appear.  Methotrexate this, Vincristine that. . .blah blah blah.  Its like the Sweetarts.  I cannot resist buying the roll.  And I can't stop eating them until they are all gone.  And it grosses out my sister. Then I have a stomach ache.  And yet, I just have to eat those pinks and blues and purples. 

    Did that answer any questions that were rattling around in your head?  Did not really ever care to know what the mothers talk about did you?  So sorry. This is stream of consciousness. You don't have to read it.  But you will, won't you?  It's like passing a collision. 

    Right now, Cara is laying in an infusion chair with a blanket over her head, getting IVIG.  Immunoglobulin because her immune system is shot to hell.  Yes, I wrote hell.  And I can write damn too.  I don't think I can write the F word.  I seem to be able to say it though. Why is that?  The Catholic education controls my fingers but not my tongue?  I can say and write all the religious-based words, not the secular ones?  ANYWAY.  We are here for the day, boosting. She apparently--I just found out--has to have this done every month starting now until at least March.  She was very cranky today, and could only be consoled with "Daddy's Ipad."  Yes, she has graduated from the DVD player.  She still watches the same shows though. Just more expensively.  Like a teenager.  Who says she is delayed? Take that, Squidward.

    OK, because it is me, I had to look up "Squidward" to make sure I spelled it correctly.  Did you know that his middle name is QUINCY?  Squidward Quincy Tentacles (hereinafter SQT--alert: lawyer writing) is the "tritagonist" on the show.  Who knew?  Where the hell (again with hell) is my iPhone dictionary?  Squidward is a cephalopod.  Again?  And, answering a question that has always bugged me, that always-reliable-source Wikipedia says:  "The series' animators made Squidward with six tentacles, believing that giving him the eight tentacles of an octopus has made [sic] him look too burdened."  Let's try that again.  Eight tentacles make SQT look too burdened.  Clearly, I need a few sessions with an animator.  And as to that "[sic]," well, that is a reference lawyers like to use when the writers of the quote do not write as well as the lawyer quoting them.  Though, of course, the lawyer did choose to quote instead of paraphrase--so really maybe the lawyer should be [sic]'d.  And isn't it interesting the SICK vs. SIC in this missive?  And why is SQT's middle name Quincy, which would suggest five??  Shouldn't it be "Sexty"?  And, while I am at it, you should know that I allowed a letter to go out under my signature with the word "extant" in it last week.  Animators?  Are you getting any ideas about which parts to unburden me with??

    So you thought this little entry was going to be about Cara, didn't you?  HA!

    As both my mother and my sister pointed out to me--in separate conversations--within the last 48 hours--the oldest child in the family sees everything first as to how it affects them.  This is true. My mother and sister also both said that they did not mean any criticism by that statement.  This is also true.  Conversation then ensued as to which other people in our household of 10 were (was?) (damn it, I am going to have to look that up) also the oldest.  Then some: "oh, yeah, well that makes sense" kind of head-nodding occurred.  So, do you think either of them is the oldest child?  You do the math.  

    Of course they are correct.  And when both of them tells me I am not remembering their words correctly, they will also be correct.  We will call this artistic license.

    So let me tell you about me--um, about Saturday.  It was a lovely day.  It was hot but breezy.  Beautiful.  We watched MC swim her race. There was coffee. I put on my suit and attempted not to drown.  Cara got to swim her laps in the pool with Tessa and MC and Amy and Jack and Michael.  Mac and Will and Steve got out on a little motorboat. Chip got out on a little sailboat.  Annie went to Eldersburg (that's her story, and since she is the OLDEST, I will leave her to tell it).  Mom and I tootled around from spot to spot watching everyone.  Then, before dinner I got to watch Jack (our master golfer) and Will (that shot was just weird) and Tessa (that's a gimme, mama; I don't know what that means, but it is a cool word--and I got to hit with my sandwidge; Jack says its really "sand wedge" but I like sandwidge) play golf (and Tessa kept up just fine!).  And it was great.  And everyone had fun.  And we ate yummy food--thanks to the master chef Amy (the youngest is such a great caretaker!); and we watched the Olympics--thanks to the master electrician Steve (the youngest is such a great caretaker!).  And NO, I am not being facetious--truly, genuine, I am being (now I sound like Yoda).  Us oldests desperately need those youngests. (I have no idea what middles need; they just confuse me.)   And so, life is way more fun than what is going on in this room right now.

    And so there is a reason I started on with all that seemingly self-centered dialogue--Ah, yes. Today, when the doctor asked me whether there was any particular reason Cara would be so tired today, I beat down the real reason they ask that question with the blessedly true answer--she swam about 20 laps this weekend and stayed up too late with her cousins and made s'mores and tried out her bike and played with Mimi and got up too early and made a lot of noise and wrestled with her brother and got ice cream and saw lots of friends and helped catch jellyfish and . . .and. . .and. . . .she lives. 

    I'll be back. 

     

  • And I was so proud of myself

    Written Sep 22, 2011 11:12pm

    Seriously, it took me like 2 hours to figure out how to load the picture. Woo Hoo.  

    Unfortunately, I do not know how to create a link to our race site!  If you type in www.raceforourkids.kintera.org/caracollins, though, you should get right to Cara's page.  I also understand that you can click on the following: http://raceforeourkids.kintera.org/faf/search/searchTeamPart.asp?ievent=461354&lis=1&kntae461354=44F903090410438897035EB63B226022&team=4293541
     Good grief.  I could cure cancer in less time than it took me to type this ridiculous link.  Where are all the shiny happy people when you need them?  Losing their religion today, I am sure.

    And, let me just say this. It was not one of you people who knows ALL ABOUT COMPUTERS who pointed out the problem.  It was an artist friend.  Thank you!  I hope one of the options above works. They did for me.  
    Sigh.  

    Diane

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