Wednesday, February 25, 2009
She asked for hair like Isabel's yet again this afternoon and Al broke down. "Go get your socks and shoes on," he said. So here's the finished product, complete with painted nails.
Tuesday, February 24, 2009
There's always food and who knows what else in her hair which makes it impossible to brush. I keep telling my husband she needs it cut and he insists she just needs more conditioner. Isabel screams anytime you come near her with a brush, but my husband refuses to allow me to cut it. It took him 4 years for him to allow me to take Lillee to get her hair trimmed. I tried trimming it at home once and he did not speak to me for 2 full days so I knew this was a serious subject for him and not worth pushing. I figure I have one more full year of begging before we'll see a change in Bel's hair.
Al took Bel out for her dental appt today and turns out the dental office had no power. So they rescheduled the appointment and went for another date....this time she didn't get her nails done, she got her hair done :) See below:
Monday, February 23, 2009
Saturday, February 21, 2009
We were able to see maple trees that have been tapped with buckets hanging from them to collect the sap.
We then watched as the tree sap was being boiled down to remove the water...this takes several days.
Here you can see the sap getting thicker. Ever wonder why pure maple syrup is so expensive to purchase? It takes 35 gallons of tree sap to make 1 gallon of maple syrup.
Thursday, February 19, 2009
Slather on some peanut butter, directly to the pine cone.
Roll in bird seed
And viola, a birdfeeder.
I was surprised how quickly the kids tired of this activity so we headed outside with 5 rolled pinecones to hang from the tree. I strung them up while Connor ran around the yard snapping pictures.
Here is a great shot that Connor snagged of Lillee...he's not too bad behind the lens.
Since it was so cold and windy we waited inside and watched out the window.
We waited for the birds to come....
And we waited....
And we waited....
For 2 full days, not a single bird. But we fed a couple of lucky squirrels and those rascals ripped our pinecones right off the tree. So now we have 5 strings blowing in the wind and still not a single bird to be seen. We had nothing to report to the Great Backyard Bird Count, but we tried.
Tuesday, February 17, 2009
Katie had a treatment buddy named Samantha. Katie and Samantha became friends through treatment but enjoyed tea parties and playdates with one another. Samantha has the same tumors that Katie had.
Here are the girls enjoying a playdate together
L to R - Gigi (Katie's younger sister), Katie, Kristy and Samantha
Samantha's father gave us a brief history of Sammie's battle with her disease.
Sammie was first diagnosed at six months old with a very aggressive Ependymoma, a very rare and deadly form of brain tumor. To her and our great fortune, and to the utter astonishment of her Nuerosurgery team, they achieved a full resection of the massive tumor when they operated.
As a precaution, surgery was followed up with six months of a very dangerous form of High-Dose Chemotherapy, which she completed successfully. It left her with profound hearing loss. She spent the next two years rehabilitating. She learned to walk, developed gross and fine motor skills far beyond the doctors predictions of her ability to recover, regained her ability to swallow, etc...
Ependymoma tumors have a "non-existent beyond five year" survival rate among children afflicted, especially when diagnosed before one year old. In all known cases the tumor returns within 9 months to three years after total resection had been achieved in surgery. Therefore, it was thought that if she survived three years past her last dose of the chemotherapy, she may have a realistic chance to survive long term. Tragedy struck again when the tumor returned on the last MRI she had to have to achieve that three year milestone.
She immediately had surgery in Jan. '06 just a few days after it was found. The surgeon was able to only remove about 70%, as it was growing like a mushroom right out her her brain stem this time instead of along side of it. She was given chemo again for one month as a precursor to proton radiation therapy.
Radiation is the most preferred treatment for brain tumors; chemotherapy has a difficult time penetrating the blood/brain barrier. The first go-around she was determined to be too young to radiate.
She received 10 weeks of daily radiation treatments at Boston General Hospital, who's facility is a world leader for this type of treatment. Upon completion we returned home on the first of June '06. That summer was spent monitoring the tumor with a variety of imaging machines. In Sept. '06 the tumor once again spread tremendously and her Nuero/Oncology team made the very difficult decision to release her to Hospice care and told us to prepare for the end.
Our only option for treatment was in the investigative drug therapy realm. We were given two chemo studies that she qualified for. Neither were chosen because of the devastating physical effects that she would suffer along with the very high risk that they could cause death and held very little hope of success.
A third option was for her to participate in a dosage determining phase of a new type of ERBII inhibitor designed to block the proteins that feed tumor cells. This drug had limited temporary positive results in lab mice which qualified it for human trials. It came from new medical theory from Genome studies. The doctors said that, at best, it would be a way for her to contribute to the dosage tolerance determination the studies phase was in, and there were no known side effects. We agreed to try it, but were cautioned not to expect any positive effects. They said it was just a shot in the dark because no-one as yet in the two years of trials had shown a benefit.
Within 60 days, her tumor had miraculously shrunk in half. After another sixty days it reduced again by half. It has remained stable for over one year now at this size. We have hope that it continues to keep the tumor in check. As always, our faith in God and the continued prayers from so many keep us aloft.
Thank you all so much for honoring Samantha with your efforts. We pray that your good work helps others in many ways, great and small. It is the earthly manifestation of good that God promises to bring from suffering.
As Samantha continues her treatment she has recently had some complications and has struggled to stay in a particular study. For those of you unfamiliar with cancer treatment, when all approved treatments are not working you may qualify for experimental treatments but because you are part of a "study" you have to fit a particular slot based on many factors - age, diagnosis, previous treatments, current tumor stage and the list can go on and on. Samantha has just recently developed a lung infection that threatened her chances of continuing treatment but she was able to continue in the study.
Samantha's mother is working full-time to support the family as well as trying to take care of 5 children, her father is trying to start a business and has had some set-backs recently so the family is just struggling recently.
Samantha and her family could really use some love notes with words of hope, faith, love, and inspiration. Please take a few minutes and pick a person from your family to write a note, share your testimony, a story that might be uplifting, an encouraging poem, the lyrics to an inspirational song, your favorite uplifting scripture, ANYTHING to help Samantha and her family through this difficult time. They continue to fight, but some days are harder than others.
I'm calling on my friends and family for some "Chicken Soup For Samantha & Family's Soul." Please email your contribution to firstname.lastname@example.org
Monday, February 16, 2009
Two days ago, Lillee said she wanted a hat like Pig's chef hat in Word World. So I found a pattern and started sewing. Normally when I have an idea to make something for the kids or other family members I never get around to making one for me. When I learned to crochet, I made scarfs for everyone....but me. When I learned to knit, I made hats for everyone....but me. This time I started with one for me and then I'll make them for the kids :)
So here is my lovely creation!!!
Sunday, February 15, 2009
We made bookmarks out of calendar headings and some pretty simple scrapbook items or in my cvase, school supplies as I don't actually have any scrapbook supplies.
It is sort of hard to see, but this one says, "Let's Make A Date!"
I gave this one to Al *wink*
Isabel made this lovely bookmark with some of Aunt Emily's vellum sheets
Thursday, February 12, 2009
Here are some photos, thanks to my photography crew (aka Connor):
making candy treats
finished treats - mini pretzels, hershey kisses & conversational hearts
My kitchen staff
Isabel hard at work on the sugar cookies
Lillee's turn to help with the cookies
Isabel giving a taste test to all our treats....mmmmm, cookie dough!
Monday, February 9, 2009
This year all Isabel could talk about was wanting a pony cake. She loves to play with My Little Pony toys so I had her choose her favorite My Little Pony and made a cake to resemble it. Here are some pictures from her Pony Cake presentation.