miles and miles and miles and miles

Tonight, after some good sword-fighting and after Isaiah did his physical therapy exercises, he went into the kitchen to drink his "chug" and work through a pile of pills. I walked in to check on him and heard him saying, "miles and miles and miles and miles and miles..."

I asked, "What's miles and miles and miles...?"


He answered, "That's how long until you're done with leukemia. I used to get sick and then I'd get better in one day. But that was before I had to go to the hospital. Now I have appointments and sleepy tests and pills and sometimes I visit overnight. And you know why I hate that? Because I don't get to play."


I tried to turn his little lament toward the positive, "Ya, but you're doing so well. You're getting stronger."


"I know," he agreed. "But it takes miles and miles and miles..."

little drummer boy

We continue to be encouraged by and grateful for Isaiah's over-comer attitude. He's so hopeful, appreciative and expressive of his love for his mom, sister and me. Lately, we've found him talking on the phone to various cousins, aunts/uncles, or grandparents. He's our independent one - helping himself to food in the fridge, calling family members just to say, "How's it goin?"


We also continue to count on your prayers. Please pray for healing for Isaiah. Please pray for wisdom for his parents.


Much peace,

Wisdom

Once again we need more wisdom to make good choices for Isaiah as he continues treatment. Yesterday, at his regular appointment we learned that his liver is very overworked and stressed. He takes several medicines on a daily or weekly basis which can cause stress or damage the liver. His doctor decided not to change his chemo for the next few weeks.

We also learned yesterday that Isaiah has a total of 10 compression fractures in his spine, some mild, some more advanced. This was hard news for us but we are thankful that all the fractures appear stable. We need to revisit the conversation regarding the modification of his protocol.

His ANC was 800 so we are being careful to have only healthy playmates this week! We remain thankful that Isaiah is not in pain. He can play, run and enjoy being a jedi all day long. Last night as we prayed for Isaiah our prayer book included verses from Psalm 34.

"The eyes of the Lord are upon the righteous, and his ears are open to their cry. The righteous cry and the Lord hears them and delivers them from all their troubles. The Lord is near to the brokenhearted and will save those whose spirits are crushed. Many are the troubles of the righteous, but the Lord will deliver him out of them all."

The closing prayer was as follows:

"Into your hands, O Lord, I commend my spirit; For you have redeemed me, O Lord, O God of truth. Keep me, O Lord, as the apple of your eye; Hide me under the shadow of your wings."

These are the longings of our hearts for Isaiah and our family, perfect words for our somber hearts and a good reminder that God has not forsaken us, or any of you.

Hi!

Isaiah has been feeling very strong the last two weeks. We've been able to enjoy some unforgettable adventures together.

Last week Isaiah viewed Star Wars, Episode 1, for the first time. It has helped inspire him to never-before-attained passion for the whole world of Jedi, space ships, and epic battles. We've been doing a lot of light saber fighting in the evenings.

Tomorrow we've got another appointment at Sutter to check on his progress.

Thank you for loving our boy.

Special thanks to Michael, Tracy, Mary, Jon, Josh, General Matt, Joanee, Christie, Dinah, and Noah. Unforgettable!

day at the river

We spent New Year's Day at one of our favorite places, the American River confluence, bouldering and exploring. It was a good first day of 2008.

Maintenance Continued

Isaiah is in the middle of week 5 of his first course of maintenance. Yesterday, at our appointment, Isaiah was diagnosed with an ear infection. He got Vincristine in his port and started his monthly 5 day course of steroids. We have a list going each morning so we can keep track of his daily chemo, daily antibiotic, weekly chemo, 10 day antibiotic and 5 day course of steroids. Despite all the pills he has to swallow Isaiah is doing well. Today he seems extra tired but generally happy. Pray for strength for his body as it endures the ongoing burden of processing so many different chemicals.

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