Tuesday, August 17, 2010

Every Blessing

Learning to fish

Story time around the campfire


A ride in Uncle Darren's canoe

Enjoying some quality time at home. I told Tim the garage needed painting!


Every blessing you pour out I'll turn back to praise
And when the darkness closes in Lord, still I will say
Blessed be the name of the Lord

You give and you take away
My heart will choose to say
Lord blessed be your name



Today is a day of mixed feelings. We are coming off of an amazing weekend of family camping, bugs, fish, swimming, campfires, and cousins. Today Caleb and I got up early and spent much of our day at the hostibull doing leukemia things. So mixed! I alternate between the high of a great time together and the crashing back into this other reality. I think I'll share about it the way that my neice Emily and I eat our bread. Crusts first: get through the yuck so I can enjoy the good stuff.


We were at the hospital nice and early and finger poke went quickly. Finger poke barely phases Caleb anymore, he removes his bandaid within the hour after the poke. As a frame of reference for how this has changed, he used to favour his finger and need a bandaid for the week following the poke. We got up to the clinic and the charge nurse found us right away, getting us up to speed on what would be happening today. Little surprises are nice: last night I was lamenting to a friend on the phone because I had realized that Caleb would not only be having a lumbar puncture today, but he'd also be having a "leg needle". (A leg needle will be part of the next 30 weeks of treatment) Despairing about two invasive and uncomfortable procedures for Caleb, I was not looking forward to today. The nurse surprised me with the reminder that Caleb would be sedated for his lumbar puncture and so they would do his leg needle at the same time. Of course! I was instantly relieved and much more positive about what was to come. Caleb went into sedation around 11:15, not too happily, but okay. He received chemo drugs in his spine, in a leg needle, and through his port. A lot of meds today! Caleb really slept after the procedure; it took about an hour for him to finally wake up, which is a long time! He was happy and silly and a delight to everyone, as usual. Sometimes, just sometimes, really just sometimes, I wish he would complain a little more or put up a bigger fuss, because the sweeter he is, the harder it can be to put him through it all.


The gift for us today is that he's taken all of this medicine today, and he's still playing. Unbelievable, and what a blessing. He was exhausted at bedtime, but camping will do that to you too. We will wait and see what tomorrow brings, if his energy remains or if we'll begin to see effects from all of the drugs. I pray that we see very little.

Caleb's in a new phase of treatment, CNS therapy, designed to eliminate any possible blasts from his spinal fluid. This phase involves four lumbar punctures in these coming two weeks. Today was the first, the next is Thursday. Next week Tuesday and Thursday are the other two. He's taking steroids for the next 5 days again, and he's started 6 MP again for two weeks. Once a week he'll be having a leg needle, asparaginase, but he doesn't really know about that one yet. I decided to wait until he has to be awake for the needle before telling him about it. One thing at a time, especially in the case of four year old boys. This phase lasts for 3 weeks, and then it will be a new ball game again. But that's 3 weeks from now, so we'll wait for then.

We were able to camp again this weekend, after learning about good counts for Caleb last Thursday. We spent 3 nights at Pinehurst Lake Conservation Area, still nice and close to Hamilton. Despite being on highway 24 on Friday the 13th (many bikers on Harleys driving to/from Port Dover just a few metres away from our campsite, all night long), we had a great campsite, the last of 3 available on short notice for the weekend! The beach was great, and the kids had a great time playing outside, enjoying trees, bugs, sand, and water. Caleb's cousin Luke and his family were able to join us on Sunday, after the rain, and Uncle Darren took the kids on a canoe ride and even taught Caleb and Nella how to fish. My best memories are of camping, I hope the same will be true for my kids.

Thank you for your continued prayers and support. We still are receiving meals, and it's acts of service like meals and help with laundry that make a camping trip possible for us. Thank you. Please keep praying for us, especially in these two weeks. And on a separate and related note, please pray for Kyle DeKoning, family of our friends, who will be going through a long brain surgery on Thursday of this week. Please pray for Kyle and his wife Lindsay.






6 comments:

Anonymous said...

I miss you Jess.
You are an amazing Mom for Caleb. You are sensitive to his needs and tender to his hurts. You feel his pain. That must make this journey difficult. But, for a 4 year old, a loving Mom and Dad are the best band aid. Caleb is blessed with great parents
Sending much love!
Tam

Elzinga Family said...

The photo of the garage painting is PRICELESS !
I am so glad you could get away camping too!
Thinking of all of you!
Carolyn & the boys

Anonymous said...

Blessings for the week ahead! we keep you in our prayers. Carla

anya genevieve said...

jess, thanks so much for sharing the words to Blessed Be The Name; you have no idea how much I needed to hear it today. I have it playing on youtube right now and got those good goosebumbs you know?? thanks jess. praying and keeping you all close to my heart, anya xoxo
-http://www.youtube.com/watch?v=7Qp11X6LKYY (in case anyone wants to hear this amazing song sung by Matt Redman w/ lyrics)

Aunt Linda said...

You make up sooo proud to you family. Keep up the good fight of faith!!

Kevin Huinink said...

Jess, Tim.
I just read the blog from start to finish after learning of Caleb's and your journey over the past months from my sister. I'm grateful for your need for 'writing therapy', and feel honored to share via reading the blog. We send you our blessings of courage, laughter, strength, and Peace.
Kevin, Karin, Ephraim, Noel, & Selah