Sunday, November 23, 2008

THANK YOU so much to everyone for the tremendous support. All of your prayers, thoughts, bloggin’ etc... let’s us know how many people love us and gives us all tremendous strength. We are forever working to stay uplifted... suppressing the harsh reality that we are landlocked and only 4 months in to a 2.5 year treatment. 2.5 years of flushing her line each night and changing her dressing twice a week [she now does it without crying... and we can get it done with only 2 people on deck.] The constant anxiety that our baby has a life threatening illness... that something could happen to her line... or that she could get a cold and we wind up back in the hospital. The frustration that she is too sweet & young to have to deal with this... and just missing her hair... we were squabbling about cutting it or not the week before she was diagnosed. Thank you for the love and for keeping us on track.

Thank you SO much to Marianne and Bryant Foulger, and their family for establishing the Go Rogan Foundation. The overwhelming response and the huge contributions from everyone is a huge help to us and a relief on the mounting medical bills.

Another MEGA thanks again to the boys for their wildly successful Whole Foods fund-raiser. Jamie, Teddy, Tanner and EVERYONE that contributed... a HUGE burden off our shoulders. Casey is healing Rogan with food, dark leafy green smoothies flowing like water.

Massive thanks to our fine friend at Vans shoes for the coolest gift! Rogan was psyched. She loves Elmo [A-mo] and loves shoes [Hoos]... so the look of stoke and disbelief when she opened the box and saw her brand new “A-mo Hoos” was priceless. I wasn’t able to capture the initial shock... but....

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She’s also extra excited about her new Elmo T. She had a stage 9 meltdown when she spilled yogurt on his face and couldn’t clean it off by herself.

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Rogan has been charging through INTERIM MAINTENANCE without a hitch. Again, she has been receiving 2 different IV chemo drugs every 10 days. Each visit, they are ramping up the doseage... if her blood counts are sufficient. No drugs orally, at home... save for the Pnuemonia preventative twice a day each Mon & Tues.

We were expecting Rogan’s white cell count to be too low last clinic... but they made the cut and she received her 2 chemo’s IV. She also received a spinal tap, where they test and treat the spinal fluid. She was a little more sick this time... feeling nauseas and being more tired...but for the most part, felt well.

Her walking has improved significantly and she seams to be at about 85 or 90%. Imagine not walking for nearly 2 months!

I thought it would be good for her to get spinning on a bike... and we bought Rogan her very first ride.

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Here is Rogan in the waiting room at clinic. She picked this cool hat from the Clinic Hat Tree and then gave it to Dad.

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Rogan loves to sport her TuTu and dance in the living room.

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...just like her Dad, Rogan likes to walk around the house totally nude, in only her snow boots and talk on the phone with her Aunties in Hawaii. [That is Glad Press n Seal on the line... to waterproof it for bath time.]

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We had great weather a few weeks ago. Rogan logged her official 1st shift in the cage. She got lit up... but that’s fine, because she won’t be playing Goalie anyway.

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Here is Rogan and Coco’s school picture. We have really been laying into them about their grades.

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Here is bath time & book time. Yes, Coco is enormous... and yes she is only 2.5 months old. Breastmilk. If I incorporate it into my diet and start hitting the gym regularly, I'd look like I was sculpted from the hands of Zues. [thx Ghobud]

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So Rogan was watching Little Mermaid and kept laughing at us... scrunching her nose and saying “nose” “nose”. We thought it was cute that she saw something on the TV and was repeating it.

Casey goes to change her diaper and yells for me when she sees a green mass up her right nostril! We thought it was some type of weird discharge associated with her illness. After closer analysis we determine that it is a pea!... and it was WAY up there! I thought “oh heck no... we are not going to the hospital for a pea up her nose, after all this”. We somehow convinced our 22 month old kid to eject the pea from her nose by holding the other nostril closed and blowing through her nose. What!? But the tale doesn’t end there!... a closer look and there is ANOTHER pea in there!... right behind the 1st one! Once again, she was able to eject the pea and we all had a good laugh. Here is Rogan re-counting the story at the dinner table:



Rogan's red blood & platelets are good.... so her energy levels are high and she is feeling well. Her white blood is getting low... so we are back inside on level 10 quarantine... keeping her from getting sick and bracing for the impact of "Delayed Intensification". 

Thanks again to all who read this and support us. Much love.

P.S. I am now committing to post shorter & more frequently. We are scheduled for a CBC [complete blood count] draw this morning and a clinic day tomorrow.... stand by.

12 comments:

the merriest said...

I love her! And Coco. Yes, she is huge. I also love the picture of her & Shae. Too cute.

Laura said...

It warms my heart to see these cute pictures of her!! And Coco too. I think of you all everyday and miss you so much. Love love love.

Rachael Rose said...

Hi Family!
I am so happy to see her having fun... This made my Monday morning. Lil Ro brings me so much strength, to see her go through what she is and still be the happy gal she deserves to be just moves mountains. I would love to help the gang on the West Coast with any fundraising, so guys please contact me. Happy Turkey Day amazing family. God Bless.
Rocky

Kelley said...

Love to hear the latest and see the happy youtube videos! You all are in my prayers and I miss you! Happy Thanksgiving! XOXO

SUZAN said...

She is the cutest!!! I love the pea story, LOL! amazing!

So, Casey, I have to cancel our yoga date... again... we have been sick at our house. I don't want to be anywhere near you right now. Love ya too much!

Squeeze those girls for me : )

ishybeanie said...

I find your lack of posting encouraging, that things are going well. Both your girls are so cute, they remind me of Kaden and all his chunckies. I love the pea story thanks for the laugh.

Dana said...

It is so wonderful to see the pictures of Rogan and Coco. They are adorable! You are amazing! We think and pray for you always! :)

barbchuck said...

Thank you so much for the detailed posts. It is amazing to me the way you two manage keep your spirits up and the way you are able to infuse Rogan with your strength and joy for life. Those Elmo shoes are priceless. I adored the little nudie picture with the "Censored" sign and the pea story was a riot (since it had a happy ending!) Keep hanging in there and know that a lot of love is coming your way. You two are awesome!!!

brooke said...

Ell and I just watched all the video's. Elle " yeah, mom, she's standing! She is sooooo cute when she talks! Mom is Rogan your friend because she is my friend." We love you all. We are so happy to hear how treatments are working!

Katherine said...

I don't know you guys, I've become aware of your story and blog because I work in the retail dept at Quik, and I check your blog to see how you guys are doing periodically. I am so happy to see a positive update!! I think and hope and pray for you often.

Beth A said...

So fun to see all the cute pics and read your stories. It's nice to know that you are experiencing "normal" things with a toddler, such as peas up the nose, (the dinner video re-enactment is priceless)in the midst of all your medical experiences which most of us will never experience. Your strength and love never ceases to amaze me. Coco is a doll. I just love the chubby cheecks.
Hugs and kisses.

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