Wednesday, July 23, 2014

CML Survival Guide with Grand Kids!

This summer we were blessed with visits from almost all of our children and grandchildren. We had such a blast, and I feel so fortunate to have been given the gift of time, with each and every one of them.

I could not have done it without my husband’s help, patience and willingness to be the ring leader. He has truly earned the title “Super Papa!”

Our Motley Crew!
I knew that living with CML during the summertime is brutal, for me; I sunburn easily and the heat often makes me ill, and wears me out very quickly, but I also knew that I wanted to spend time with my grandchildren more than anything else in the world. I so admire those of you living with CML that are still raising your children; you are a force to be reckoned with; my hats off to you!

That being said, I planned accordingly. First and foremost, I cleaned my house prior to their arrival and told myself to not worry about major house cleaning again, until they were gone. I knew that my energy level was going to be taxed and that I would have to alternate days of high and low energy level activities.

To do so, I had to be prepared. I often shop at JoAnn Fabric store for Kid’s Camp projects as they are inexpensive and easy enough for them to do alone; these I doled out periodically, when I need a break.  I also kept my table covered with an inexpensive vinyl tablecloth and had a ready supply of crayons, tempera paints, markers, paper, scissors, glitter, etc., readily available for quiet time, and creativity.

This year I added inexpensive bird houses (purchased at JoAnn) that they painted for the garden; they also loved painting rocks. We have quite the array of colored ladybugs, now living in our garden; rocks are plentiful and free! To protect them, I simply sprayed them with polyurethane when their masterpieces were complete. They loved finding homes for their creations in our garden, and we love the continual reminder of their visit.

In addition to arts and crafts, quiet time also included book reading and puzzles. Fortunately, I have tons of both! I have been reading the Little House on The Prairie and the Lion Witch and the Wardrobe series, aloud to the older girls, for quite some time; this gets them into bed at a decent time, and allows me to spend time quality with them, while relaxing.

Luckily, we have a playhouse with swings that entertained the girls for hours. For some reason or another, lunch always tasted better at their very own picnic table, under their very own playhouse. I am sure that a shaded tree would have the same result!

Bubble blowing, flying kites, sidewalk chalk, dress up, running through sprinklers, ATV rides, feeding the birds and picking “snacks” out of the garden are also fun summertime activities. The kids even took great pride on who pulled the biggest pile of weeds. They loved spending time in the garden and learning about how things grow, and realizing that things tasted so much better, straight from the garden. They ate things they never would have dreamed of eating, at home!

Another great way to spend quiet, quality time is to play games with the kids; either one on one, or in a group; I did a lot of both. The favorites are Guess Who?, Jenga, Connect Four, Triple Triumph, Blokus and Splash. All of these games are fairly quick and easy, without being frustrating to either participant, if you know what I mean!

On extra hot days, instead of sitting home listening to “It’s Hot!”, “What can I do?”  We found water; we went to the creek or the lake, and let the kids play. They jumped off of really big rocks, (freaked me out!) played in the sand and the water, caught little fish and looked for gold. I sat at the water’s edge with my life saving “rag” (Chilly Pad), as the kids called it and took tons of photos. We also floated down the Boise River. Kids love water, and being out in the sun wears them out.  

We planned two “paid” activities; Groupon is a great place to find discounted entry tickets to venues in your area. We chose the Boise Aquarium and the Children’s Discovery Museum; both places offered hands on exhibits, which allowed the children to explore freely, which in turn allowed the adults to enjoy watching the wonder in the children’s eye, as opposed to having to reign them in with the “look, don't touch” approach. For me, it’s all about them.

Papa found that summertime is a great time to make ice cream, homemade pizza with dough from scratch and even cinnamon rolls. The girls took turns in the kitchen, cooking with him: and I wonder why I kept gaining weight…..as I ate, and watched their little faces light up with pride.

We quickly learned that “special” treats, such as a fun sized Milky Way, got floors swept, silverware from the dishwasher emptied, beds made and clothes folded, in record time. The things that kids will do for an extra treat is quite astounding; always have treats readily available. I am sure that there are healthier ways to get things done, but after all, the kids were on vacation at Nana and Papa’s house, right?  (These treats were only given out to those that went above and beyond, on their own accord)

Other quiet time activities included watching “old” movies like “The Sound of Music” and spending much time swinging on the porch swing; some of our best conversations occurred while swinging on that swing; memories were definitely made.  Our visit with family may have been exhausting, but it was so worth it.

Hopefully this will give those of you that are blessed with the same opportunity, a few ideas of how to enjoy the kiddos, without totally wearing yourself out!


Happy Summer to all!




Wednesday, July 16, 2014

How to Cope with Summertime Heat!

It has been an absolute whirlwind of activity for the past three weeks! Joe and I have been entertaining our three granddaughters from Arizona since June 26th, in addition to all of the other visitors that also arrived during their stay!

Since the girls are eight, seven and five, the bulk of activity fell upon our shoulders and since we do not have the good fortune of having them live near us, we wanted to make the most of our time. Being that we live in Idaho, much of the activity happened outdoors; if you are like me, that probably means that the heat and sun, are not your friend!

I do not have the energy to fill you all in, on all of the great things that we did, but I did want to share my number one lifesaver with you, as quickly as possible. It is a Frog Togg Chilly Pad! It is the coolest product that I have ever found; you wet it, wring it out and put it on your body. It not only keeps you cool, but lasts for hours. To reactivate, all you have to do is re wet it. It is truly amazing and no, it does not wet you or your clothes! It is heaven on earth and I am not kidding! It literally has been a lifesaver.



I used to take a small cooler with small ice packs everywhere I went during the summer, but now I just carry my “rag” around my neck everywhere I go! Lol They do come in a multitude of colors, and I think that I may order a few more, because after all, we MUST be stylish when wearing our “rags” around our necks. Right?

So, if you are dealing with heat issues like I do, I encourage you to give this a try; you won’t leave home without it! (and don’t laugh, but there have even been a few nights that I have taken mine to bed!) Go Chilly Pad, Go!

Me and My Rag

Thursday, July 3, 2014

CML Side Effects Return with New Bottle and New Lot Number

This summer has been a whirlwind! After getting the garden started, flowers planted and a new fence around the orchard, Joe and I drove to Las Vegas and picked up our granddaughters. We have had the most fabulous time, thus far. I have had the good fortune of not having any “pain” related side effects, so we have been able to do many things.

Due to an increase in my PCR twice in a row, I am back on 140mg of Sprycel; two days ago a received a new shipment. After only one dose, the pain in my back has returned. I am so bummed; it is severe enough to slow me down and put a damper on my summertime fun, with my family. I am considering calling the pharmacy to ask for a new shipment, with a different Lot number to see whether or not it makes a difference.

The return of the pain is a great reminder to play hard when you can! Down days are going to arrive no matter what, and I am so grateful that we have been going Mach 1 since the girls arrived, as I have no idea how the rest of their visit is going to go. Regardless, time spent with them is priceless.


Is anyone else on 140 mg of Sprycel? If so, I would love to know your Lot number and side effects.