A Clinic Day

Here is a look at a typical clinic day for us.  Derek was scheduled to begin a new round of treatment including an LP with sedation and chemo if his counts were high enough.

Kristen exercising while Lindy prances by.

A Day of Rejoicing

The small boy marched around the room, clapping his hands while children’s voices sang from the CD player, “Sing the wondrous love of Jesus, Sing His mercy and His grace.”*  He sang along, though he could not stay on key. “In the mansions bright and blessed He’ll prepare for us a place.” His mother watched from a distance, quietly amused.

The broad strains of the chorus filled the room as he continued to march. “When we

Haircut - Feb. 15, 2013

I gave Derek his first haircut since he first started losing his hair nearly a year and a half ago.  It probably could have been cut sooner, but we were all enjoying it too much.

Before

After

New Year Again

One year ago, I wrote a blog post about new things I would do in 2012.  Indeed as I re-read them, most of them really did happen, both good and bad.  Some of them are a bit hard to judge.  At the end of my post, I added a wish list of things I hoped would happen this past year, but over which, I had no control.  Here they are with the results:

It Is Blessed… To Receive?

Ah, Christmas! The season of gifts and giving.  Over the past year, I have been the recipient of many gifts.  But my journey with Derek’s leukemia diagnosis brought to the surface an unexpected revelation about

December 08, 2012

I can’t help but think about this time last year and feel extraordinarily thankful for where we are this year!  On December 2 last year, Derek was admitted to the hospital for acute pancreatitis that was a reaction to one of his chemo meds.  He got out of the hospital two days before Christmas.  Today he is laughing, playing, and full of energy, and he is HOME! Thank you Lord for walking with us!

December 2011.  Our view from the acute care room last December.

December 2011.  Derek didn't feel like looking at the view.  He was knocked out from the pain medications.

Monday, December 3, 2012

Monday, Derek started the third and last cycle of this first “Maintenance” phase.  When his lab report came back, we learned that is ANC was only 600.  It was low but within the target levels. He had to be sedated for a lumbar puncture (LP) where they take spinal fluid to test for leukemia relapse in his central nervous system, and then they give spinal chemo to hopefully prevent it.  He has now had 19 LP’s, but every time he is sedated for it, I still worry just a bit.  Thankfully, he has never had a complication.  We also learned that over the last three months, Derek has grown one inch! And he had grown nearly one inch in the previous three months.  Wow!  He is growing as fast as his hair is! No wonder all his pants are getting too short!

Sunday, December 2, 2012

 

Kristen played for her Christmas piano recital. Here she is with her wonderful piano teacher Helen LaiPang.

Cat Nap!

November 2012

My sister and her two children came to visit in November.  It was such fun to have them here, especially after not seeing them for two years!  We took a couple outings with them to the California Science Center to see the space shuttle Endeavor, and to Crystal Cove State Beach for tide pooling.  The highlight of the tide pools was a small octopus that stole a pair of sunglasses and didn’t want to give them back.  The octopus was more interested in the glasses than it was in anything else, and came all the way out of its den to try to get them.  Maybe those cartoons of octopuses with sunglasses on aren’t so far from reality!

Octopus in the center reaching for the sunglasses in lower right corner.

October 1, 2012

Derek is now in his second cycle of "Maintenance."  This time, his ANC has dropped quite low.  Last week when we went to the clinic for labs, it was only 300.  They discontinued his oral chemo this last week and asked us to come again today to see if it had risen.  It did, but only slightly.  It was 700 and not high enough to continue, so he has another week off oral chemo.  Next week it will likely be high enough to continue, but he will only get half the normal dose until his ANC stays above 750.  Then they will gradually increase it if he can tolerate it.  His bone marrow is getting tired, they tell me, and it is taking longer for it to bounce back.  He is also very sensitive to the oral Mercaptopurine which, they tell me, is good.  He may not need the full dose to accomplish its target which will likely be easier on his liver.  Next week he is scheduled to

Chemo Curls

receive the study drug Nelarabine again for five days in a row, so we will live at the clinic for another week.  We haven't done that in three months!  Somehow I didn't miss it.  Last time he received Nelarabine back in July, his ANC dropped very low (100), he caught a flu bug, and ended up in the hospital for nine days.  Hopefully that won't happen this time although he is coming into the week already quite low.

Overall, Derek is doing well.  His appetite is pretty good. He has energy and is happy to be doing home school with Kristen.  He lost a tooth last week, and his hair is growing in fast.  This time it is very curly.  I have never cut curly hair, so this will be something new.

Derek and Kristen were excited for the chance to watch the space shuttle Endeavor land at Edwards Air Force Base on September. 20.  We wanted to avoid the crowds when it landed in Los Angeles, and friends were able to arrange for us to get onto the base to see it.  We had a great location overlooking the runway and even had shade while we waited for two hours beforehand.  After watching it fly by, then land, and taxi by us, we went over to the flight museum to see some famous planes.  Derek loved it all - the SR71 (fastest plane ever), the first plane to break the sound barrier, cool helicopters, and more.  Even better (in my current opinion), we had the place nearly to ourselves, so I didn't have to worry so much about his exposure to infections.

The next weekend, we went for a hike up in the San Bernardino Mountains.  Unfortunately, the lovely trail we were on had a hornet's nest in the ground right beside the trail.  Derek and three others in the group got stung.  Derek got two painful stings, one on each leg.  However, besides the pain, he had very little reaction and hardly any swelling.  His doctor said that his immune suppression probably prevented more of a reaction.  I guess there are small silver linings on even the darkest clouds.

A Promise for Now

Back in October 2011, only a month into our leukemia journey, many people had shared Bible promises with us regarding Derek.  They are all beautiful promises, but it seems that God doesn’t always keep them. Why?  As we faced the very real possibility that things would not turn out well for Derek in the immediate sense, I began to realize that those promises may not be kept now.  Maybe they are for some time in the future.  I needed a promise for NOW.  I penned the rough draft of this blog post way back in mid-November 2011 as a way to sort out my thoughts on the subject.  I chose not publish it as I wrestled over it.  But over time, the answer has become more clear to me.  I have referred to this subject in several other posts and realize I need to put my thoughts out there.  So here they are.  I welcome your feedback.

_ _ _ _ _

Does God always keep His promises?  

What about this one: “The angel of the LORD encamps all around those who fear Him, and delivers them.” Psalm 34:7.  I frequently hear of God-fearing people who meet with severe difficulty, sickness, and even death.

Or this one: “The righteous cry out, and the LORD hears, and delivers them out of all their troubles.” Psalm 34:17.  Jesus is the most righteous person to ever walk the earth. Even Jesus prayed for His coming trial to be removed. It wasn’t.  Did God abandon His promise for His own Son? If so, it doesn’t seem like there is much hope for unrighteous me.

As we have faced our son’s cancer diagnosis, I have thought about the promises in the Bible; promises like “I will save your children,” and “I know the plans I have for you, plans for a hope and a future.”  While I claim these promises, I have to face the reality of the world I live in. These promises may not be talking about now.  They may have their ultimate fulfillment in the eternal sense.  I must claim them with “Thy will be done” added, just as Jesus prayed.  A much greater purpose was to be served by Jesus’ suffering and death, and His difficult “cup” was not taken from Him.  Is there a greater purpose to be served by the trials I face?  Probably so, though it isn’t completely clear to me yet. 

But I need some promises for NOW. Are there any promises that can be claimed and know without a shadow of a doubt that they will be fulfilled NOW, without needing to add “Thy will be done”? Promises that ARE God’s will for right NOW?  That’s what I have needed as I have walked this dark valley.

As I begged God to give me a promise for NOW, the first verses that came to mind were, “I am with you always.” Matthew 28:20. I will not leave you comfortless: I will come to you. John 14:18.  “He himself has said, ‘I will never leave you or forsake you.’” Hebrews 13:5.  God with us.  God with ME!  No matter what happens to my son, my family, or me, I know that God is HERE.

The next verse that came to me was, “I will help you.” Isaiah 41:10, 13, 14.  This phrase is repeated three times within five verses.  “The Lord will guide you continually.” Isaiah 58:11.  No matter what difficult decisions or horrendous events we face, He will give me help and guidance.

I know there are other promises for NOW, too, waiting for me to discover them like hidden jewels.  I welcome your comments if you have found one.

While sometimes it seems as though God doesn’t keep all His promises, I am discovering that some may not be for now.  As much as I want one for my son, I haven’t found any promises for NOW that guarantee physical well-being here in this life. Maybe that is because life here as we know it in this sinful world is temporary.  There is something better coming.  I guess I really don’t want this life to last forever.  I want some promises that give me hope for something better that will last forever.  I need promises for the future and I need some promises for NOW.

There are Bible promises for any time, all time, RIGHT NOW.  I found this beautifully written paragraph:

“All that has perplexed us in the providences of God will in the world to come be made plain. The things hard to be understood will then find explanation. The mysteries of grace will unfold before us. Where our finite minds discovered only confusion and broken promises, we shall see the most perfect and beautiful harmony. We shall know that infinite love ordered the experiences that seemed most trying. As we realize the tender care of Him who makes all things work together for our good, we shall rejoice with joy unspeakable and full of glory.” (Ellen White, Testimonies vol. 9, p. 286)

I cannot wait to see how all of these experiences along this leukemia journey are for my good and the good of my family, particularly Derek.  While it seems hard to think of it as good, I have to trust that God knows the end, and He will be with us until the end.  I have seen evidence that He is here.  He has given guidance and help in numerous ways.  He has kept His promises for NOW.  I will trust that He will keep them all in His perfect timing and will.