June 27, 2012

Time for an update after more than a month!  So much has happened in the last month I hardly know where to start.  Here are the main points.

Derek loves playing the piano.

Derek completed his eight days (over the span of two weeks) of cranial radiation on May 30 with few immediate side effects.  He did have a headache one day and a bit of nausea most days, and he also lost the rest of his hair as a result.  The months and years ahead will tell if he has any long-term effects. We hope and pray the radiation served its purpose of killing any residual abnormal stem cells lurking in his brain.

The radiation was the last treatment in Phase 4 – Delayed Intensification (DI).  The following Monday, he was to begin Phase 5 – Maintenance, but when he had his blood drawn, they found his ANC was not high enough.  It was 200 instead of the necessary 750, so we had to wait a week and try again. 

On Monday, June 11, his ANC was 1000 and he started Maintenance with an LP with spinal chemo and one other IV chemo.  We also started oral chemo at home every day.  We will only have to go to the clinic once a month for chemo and every two weeks for labs.  It is a huge change to have so much time at home!  For the last six weeks of DI, he had daily or almost daily appointments. 

Derek singing with the other kids for song service Sabbath morning.

We were thrilled to be able to attend the Restoration Family Camp Meeting at Pine Springs Ranch the following weekend.  We stayed in a motor home and prepared our own meals to cut down on extra exposure.  We all thoroughly enjoyed our first trip away from home since camping last August, just before Derek was diagnosed.  Fresh air, encouraging and challenging seminars, and time with friends all made for a wonderfully blessed weekend.

Even with two whole weeks between appointments, I am having no trouble filling all my extra time.  I feel like I am emerging from this very long, dark tunnel at last.  I feel I can finally take a deep breath of fresh air as I blink in the bright sunlight. I at last have time to give my house a thorough cleaning it hasn’t had in about 8 months, and I even have the energy to get it done. I cleaned out and reorganized the laundry room and Derek’s and Kristen’s closets and rooms. I sorted through their clothes to take out things that no longer fit and replace them with the next size. The office is next on the re-organization list. Yesterday I picked seven boxes of apricots and hope to pick that much again over the weekend.  Then next week I will can them.  It feels so good to have more time and energy to accomplish the every-day, mundane life, back-to-normal things. 

Watching the solar eclipse at the beach.

Flying kites at the beach.

Watching the transit of Venus.

Derek and Kristen enjoy playing outside, and the weather has been perfect.  I try to keep a hat on him, but his little bald head is getting a bit of a tan.  He has energy to play, and his endurance is increasing.  At camp meeting he wore out after a short hike, but this past Sabbath he was able to go two miles without having to be carried.  In the last month, we have also enjoyed our first trip to the beach since last summer to watch the solar eclipse.  We also watched the transit of Venus through telescopes at a local park.  And we had friends (who were all healthy Yay!) come to visit us for a weekend.  As I mentioned, he has oral chemo every day here at home which will continue for the next two and a half years.  He will also have monthly clinic visits at which he will have IV chemo through his port.  It still seems pretty intense, but so much less so than what we’ve been through. 

Thank you all for your prayers on our behalf and your expressions of caring. Thank you for walking with us on this journey.  Thank You Lord for getting us all this far! Thank You for walking with us!