What a game, celebrating how low you can go without totally flopping on your behind. I wish we played it more often, because as it is we treat falling down or getting depressed as a bad thing, as a shameful thing instead of as a good thing, as a starting point with optimism because the only place to go from there is up!
Katherine's July was pretty yucky. No fancy adult words for it. It was bad. I, dear old Mom, heroed, acclaimed and highly revered Mom, messed up her meds and things started down a long spiral that ended in many many repeated sleepless nights, crying and moaning nights, overall decrease in appetite, inactivity, mouth sores, decrease in drinking, two non breathing spells- where sweet like K wasn't so sweet anymore and screamed herself into a blue lipped lifeless body... Boy it was a yucky July. In the end, the docs say it wasn't the mis-timed meds, it was just the mystery of chemotherapy with a little Down Syndrome on the side. Apparently chemo is toxic, and kids with DS have a harder time handling the meds in this phase... Well, phooey! It's a real bummer this phase lasts until November 2015!
But, there's only one way to go, and that's up.
Actually, that's not true. We could wallow here a bit. Katherine's counts haven't begun to recover as we had planned, hoped, and prayed. They are still going down. The biggest miracle would be if her bone marrow would wake up, recover and start working again... Only for us to start chemo again to kill the cancer cells once and for all... It's a long and treacherous cycle.
Katherine received two units of blood and one bag of platelets last week. She was so white and pale. She had lost so much energy that when I came into the room she could only raise her eyes to greet me. She did recover nicely but it looks like we need more platelets tomorrow and if I can tell anything by her lip color it looks like she'll need more blood next week. Thank you to all donors. Cevin and I gave last week and it only took 7 minutes to actually donate. It's amazing how much you can change the world in 7 minutes. Consider donating if you haven't before, not just for Katherine but for anyone who might need your life saving blood. I wish I had been giving my whole adult life. Sometimes we just get too busy to donate. And, sometimes we can't...but statistically of the 65% of the population who can donate, only 5% do.
I guess it's time to get up and try to make it one more lap around the roller rink. The big man upstairs put the bar on the limbo poles up and is gonna give us another go at it! Amen! Even if we fall, it'll be ok.
Here are some pictures of Katherine during the last few weeks.
White skin
Getting blood, drinking for the first time in weeks.
Getting platelets.
Playing with Platelet tubing
Playing peek a boo
Taking her own temperature
Being a monkey.
Big swollen cheek from mouth sores.
Playing find your nose in our hospital crib.
Playing where are your ears?
Thanks again for your prayers and well wishes. Here's hoping her counts go up and we can get back on track to beat this. Thank you.
Who knew? Even falling down can be fun sometimes.
Every limbo boy and girl
All around the limbo world
Gonna do the limbo rock
All around the limbo clock
Jack be limbo, Jack be quick
Jack go unda limbo stick
All around the limbo clock
Hey, let's do the limbo rock
Limbo lower now
Limbo lower now
How low can you go?
First you spread your limbo feet
Then you move to limbo beat
Limbo ankolimboneee,
Bend back like a limbo tree
Jack be limbo, Jack be quick
Jack go unda limbo stick
All around the limbo clock
Hey, let's do the limbo rock
Get yourself a limbo girl
Give that chic a limbo whirl
There's a limbo moon above
You will fall in limbo love
Jack be limbo, Jack be quick
Jack go unda limbo stick
All around the limbo clock
Hey, let's do the limbo rock
Don't move that limbo bar
You'll be a limbo star
How low can you go?
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