Leukemia Relapse! – How it happened

On Wednesday, June 11, we went up to the mountains for a family retreat. Thursday, all was normal. Derek played freeze tag and was active and energetic. Mid day on Thursday, I learned via text message that the son of a friend of mine had relapsed his leukemia. I was shocked and saddened, imagining what it must be like to face such news. 

Friday morning, June 13, Derek woke up saying his neck hurt a lot. I thought perhaps he had slept wrong in the motor home or was sore from playing tag the evening before. It hurt badly enough that he wanted Tylenol, which I gave him after breakfast. It did not seem to help much and the pain continued throughout the day. After lunch I gave him more Tylenol and again it didn’t seem to do much. He was not interested in playing tag and sat with me on the sidelines. I massaged it gently, but it didn’t seem to help.

During the Friday evening meeting, Derek felt a little warm, and by the end of the meeting, it was quite obvious he was running a fever.  We went to the motor home and took his temperature. It was 101.2. We were concerned it could be viral meningitis, and I called Derek’s doctor. She said to bring him in right away. So I collected our things and

Halfway

As of today, May 14, 2013, Derek is half way through his treatment for leukemia.  One year, eight months, 6 days down. One year, eight months, and six days to go. We are so thankful that he remains in remission.  Hopefully the worst half is over. Here is a look back with links to related blog posts. Click on the pictures if you want to see larger versions of them.

Two weeks before diagnosis. Making a sheet tent with Kristen.

September 10, 2011, two days after diagnosis. PICC line in. He still does not look sick.
Click here to read how the journey began... 

September 23, 2011. Hair falling out. We gave him a buzz cut.

Kristen has been such a big support for her brother through the whole journey.

When they discovered Derek had pneumotosis in October, he had to go without eating for 14 days straight. He had actually had it on diagnosis, and had even perforated his bowel, but they completely missed it on the initial CT.  When they discovered it five weeks into treatment, they thought it was something new and treated it by making him NPO to rest the bowel.  When at last they compared the initial scans, the saw that the perforation had already healed and allowed him to eat again. While he was NPO, he received IV nutrition called TPN.  TPN is the color of milk, and the bottom of the bag looked like udders, so we made this cow to hang on his TPN bag on the IV pole and Derek named it "Messy Bessy."
To read about the miracle, click here.

Finally back at home, the kids played doctor with new realism.  Mr. Bear became the patient complete with port-a-cath accessed, IV line in, and blood pressure cuff.
Click here to read about Derek finding the humor in cancer treatment.

Thanksgiving 2011. We were so very thankful for how God had provided for us. And thankful to be home.

Legos became his passion at the hospital and at home, and many friends kept him well supplied.

Then on December 3, Derek developed pancreatitis as a reaction to one of the chemo drugs.  Back to the hospital he went again in so much pain they had to knock him out with strong pain killers. He got out of the hospital two days before Christmas.
Click here to read about evidences of God's care in the middle of all this.

He was in and out of the hospital from January through March for in-patient treatments.  Again, Legos helped keep him occupied.

Blog Posts from this time period:

Reaching a new normal.

I am a Cancer Mom

Hope

Hope Reprised

In May, Derek lost his first tooth.

By June, he had just completed eight days of cranial radiation which made the rest of his hair fall out.

In August, his energy was starting to return and we enjoyed some outdoor excursions.  His hair started coming in again.

One year milestone

November, 2012

He still takes naps occasionally.

Derek's hair came in very curly.

Derek has monthly chemo at the outpatient clinic and oral chemo every day at home through January 2015.

As of May 2013, his energy is good, and he feels pretty good most days. We are so very thankful he is doing so well. Thank you for your prayers and support!

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.