A Quiet Saturday

Sat, 19 May 2001

Hello,

It's a beautiful warm day here in Pleasanton and we don't have much planned for this weekend. Last weekend we went to Marine World on Saturday and Great America on Sunday. On Monday, Phil said he was tired...I said, "We're all tired!" :)

If you were to see Phil today, he looks like a very healthy, 15 year old. It is so hard to believe what is going on inside his body when the outside looks so good. Gee, that reminds me of something Biblical, but I'll spare you all the "sermon" for now....it will probably come later in this e-mail! :)

Since Phil started taking this steroid, as of Easter, his body has gone into a sort of remission. His blood and platelet levels haven't returned to normal, but hold their own for now without transfusions all the time. His color is good, his appetite is great, and there are few side effects. He was to be on this for one month and then taper off slowly, but I talked to the doctor this week and she said if he wasn't having any side effects, he could continue on for at least another month. We will just monitor his condition. She asked again if he would be interested in doing any chemotherapy, but he isn't interested. He knows he would only feel bad and his quality of life would diminish greatly. With the steroids, he is able to keep going for now, and enjoying each day. I also asked the doctor for a brief explanation as to why the new Leukemia drug that has become available will not help Phil. She said it targets a "Philadelphia Chromosome Abnormality" found in CML (Chronic Myeloid Leukemia), and that is not found in ALL (Acute Lymphocytic Leukemia), which Phil has.

And so...we live each day, one day at a time. Things are good here. With prayer and surrender to whatever God has planned for our lives, we live in peace. There really are no words to describe this period in our lives. How do you sit at a table eating ice cream as a family, discussing the dates that certain movies will be released, while your son is figuring that if he can stay on steroids one more month, and then taper off, he should still be alive for the July 27th release of that film.... Even though we know the "facts", it is still really incomprehensible that this healthy looking, smiling boy could be gone in just a short time. If we want to take ourselves down that path and dwell on those things, life could be quite unbearable, and so we choose not too. In church on Wednesday, our guest speaker said we can either wrestle with God or dance with him. "When we dance with Him and follow His lead, we don't know where we're going, but we know whose arms we are in." She also handed out puzzle pieces, to illustrate that we only see our piece, not the whole picture. I turned to Jim and showed him my piece and it happened to be totally black. I said, "Mine is black...", but he showed me his and it was totally blue. So in our darkest times, when we only see our piece of the puzzle, we have to trust that God sees the whole picture and has a plan to create something beautiful.

Life is so precious, and I want to cling to Phil's with all my might, but I can't. We are all only here for a short time and maybe realizing this so poignantly, as we experience this time in our lives, it will make each day we have with everyone richer and more meaningful. Many people have said we should live each day with such an appreciation. How true, but sometimes that is not an easy lesson to learn. At our Women's Retreat the speaker had written a book about living your life above your circumstances. She said that when people used to ask her how she doing, she would say "fine, under the circumstances". Then she heard someone say, what are you doing under there? We all have circumstances, but we don't need to live under them. It is possible to live above any circumstance depending on where our focus is. Christ suffered so we could have peace and eternal life. Death truly does lose it's sting when you face it square on and it's defeated, not in body but in spirit. Phil is "walking through the valley of the shadow of death", and he fears no evil. It's an amazing thing to witness, especially in a young boy. What a wonder!

Certainly, we are not finished yet with the trials in our lives. Some have only just begun, but we know we will survive because:

"I can do everything through him who gives me strength" Philippians 4:13

And if this isn't long enough, I'd like to include a poem also... For those of you who are also having a quiet Saturday and have the time! :)

Each Day

You provide for each day Lord, one day at a time
There's no provisions for tomorrows' worries, or next week's, next year's, as I find
Each day is your special gift, and the promises you've made
Cover us here and now, your tender mercies are for today
Each morning I come to you, lay my worries at your feet
Ask you for your blessings, each morning we can meet
Share with one another, plan for just today
Walk this day together, when we take the time to pray
You said you'd never leave us, or forsake us as we live
Your promises are true Lord, for today you always give
Exactly what we're needing, at this moment, at this time
Depending on you each day, keeps my focus and my mind
In accordance with your will, and all you ask of me
As you carry me along, on your wings at last I see
The sparrow's taken care of, so are the lilies of the field
How much greater is your love, for your children as you shield
Each and everyone of us, from the forces all around
That want to make us miserable, and also keep us bound
But with you there is freedom, and joy beyond compare
If we remember to abide in you, we can rest in your loving care
Luke 12:6-7
Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God.
Indeed, the very hairs of your head are all numbered. Don't be afraid;
you are worth more than many sparrows.
Luke 12:25-26
Who of you by worrying can add a single hour to his life?
Since you cannot do this very little thing,
why do you worry about the rest?

Don't worry, be happy! :)

Have a great weekend! Keep Phil in your prayers because it's not over until it's over, and even then it's not really over! :)

Love, The Shore Family