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?
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.
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
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.
 | |
| Chemo Curls |
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.
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.
The Gifts
- President Obama addressed a joint session of Congress about the high unemployment rate. We weren’t listening.
- Wildfires raged across Texas destroying 1,386 homes and displacing thousands of people. We didn’t notice.
- Football season opened with the Giants defeating the Saints. We weren’t watching.
- The largest power failure in California history occurred, leaving millions of Southern California residents without electricity and snarling traffic. We were not at home nor on the roads to be affected.
- Statistically, only one child in the U.S. was diagnosed with T-cell acute lymphocytic leukemia. That one was Derek, and it had our full, undivided attention and concern.
Our world permanently changed in an instant as we were launched on a horrible and tenuous journey one year ago today. But over this last year, I have received some intensely vital gifts I would not trade for anything.
On that day, we didn’t comprehend the extent to which our lives would change. We were concerned with the immediate crises of the moment: the shock of the thought “OUR SON HAS CANCER!”, his astronomical white blood cell count crowding out his red blood cells creating a huge risk of stroke, a mass in his chest hindering his breathing, four procedures that might have to be performed with only local anesthesia, RIGHT NOW!! Mountains of paperwork to be signed, decisions to be made, a crash course in everything we NEVER wanted to know about childhood leukemia. A totally new vocabulary that would become everyday vernacular: blasts, aphaeresis, PICC lines, lumbar puncture, gene markers, VinCRIStine, PEG Asparaginase, Cytarabine, pneumatosis, port-a-cath, and the all-consuming absolute neutrophil count (ANC).
Other things changed, too. We devoured every piece of information we could find on the internet until we became experts on Derek’s particular type of leukemia. Everyday life, as I was used to living it, ceased to exist. I didn’t cook, clean, or do laundry. Most days and half the nights were spent at the hospital. I had abundant help as family and friends supported us in every way. These people are invaluable gifts. Our house received a new floor which essentially entailed moving out and moving back in. Again many friends pitched in. It freed us to grapple with the bigger issues: Why Derek? How long will he live? What are the chances that he will relapse? What then? What will be the long-term effects of his treatment to rid him of this dreaded disease? Why did God allow this? What Bible promises does God guarantee to fulfill NOW?
For most of these questions, there is no immediate answer. Fortunately, the answer to the last one has become abundantly clear, and it has become a most precious gift. “I will never leave you or forsake you.” (Heb. 13:5) That one firm belief, that God is with me through EVERYTHING, allowed me to set all the unanswerable questions aside and trust. I received the greatest Gifts, God with me. Maybe that is why it is called His PRESENCE.
Now a year later, we are still working to find a new rhythm to the unexpectedness of our lives. Derek has responded well to treatment and is in remission. His hair is growing back. He eats well and has pretty good energy most days. We are starting a new school year. Vince’s job (which he had started in a new location only one week before Derek’s diagnosis) is going well. We usually only have to go to the clinic once every two weeks instead of every day. Many things that were such a shock at first have become normal. I am a bit hyper vigilant perhaps because I never know what a day will bring and because I am very much aware of some unwanted possibilities. I never leave home without hand sanitizer. Derek never leaves home without a mask on his face. Kristen never opens a public door without using a paper towel on the door handle. I cannot tell from looking at him what his ANC is, and when I expect it to be fine, it frequently is not.
It is hard to answer the question, “How is Derek?” At the moment he is playing, laughing, not in the hospital, and not in pain, so I guess that makes him fine. But it may all change in a few minutes, and I have no idea what is happening inside his body. Today he may be apparently fine and tonight he may be in the hospital fighting for his life. This reality has made me acutely aware of another all-important gift I have received this past year. One at a time, I have received 365 of them.
Today, I witness God’s providence. Today I experience love from many people in many ways. Today I have my son. Today I hear him play the piano and giggle as he plays with our cat. I smile as he and Kristen squeal and hug each other. Today I teach him to read and hear him read his Bible. Today I remind him to do his chores quickly, to live at peace with his sister, to chew with his mouth closed. Tonight I watch his happiness as he rides on Vince’s shoulders to bed, and then I cuddle with him as I tuck him into bed. I pet his new soft hair and feel his arms around my neck and his butterfly kisses on my nose. “TODAY is a gift. That is why it is called the PRESENT.”1
This year has been an intense and difficult journey. But the journey isn’t over. Derek has been gifted another day, and so have I. He still has nearly two and a half more years of treatment. That thought floods my mind with more unanswerable questions about the future. I push them aside and embrace the precious gifts I have received: God's PRESENCE and the PRESENT.
_____________________________________________________________
1 Alice Morse Earle, Sun Dials and Roses of Yesterday (1902).
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.
Hard Decisions – June 7, 2012
There is nothing easy about making decisions that have every
potential to affect a child for the rest of his life. We had no choice in the disease Derek has. It
is something for which he will have to be vigilant for years to come. But the decisions we are forced to make now as
a result of his diagnosis are sometimes excruciatingly difficult.
Three weeks ago, a friend of ours was diagnosed with a
fast-growing brain tumor. I was not
familiar with that particular tumor and looked it up on the computer. What I read sent a wave of horror through
me. That type of tumor is very resistant
to treatment and has been linked to cranial radiation received some time the
past. Our friend had a benign pituitary
tumor 17 years ago for which he had received radiation. Whether it is linked in his case or not, I do
not know, but what I read also stated that cranial radiation for treating ALL
has been linked to this type of tumor later in life. At the time of our friend's diagnosis, Derek was just days away from starting cranial
radiation because his type (T-cell ALL) frequently relapses in the central
nervous system (brain and spinal cord.)
All of a sudden, it seemed I was seeing the future of my son seventeen
years down the road. Do I want to allow
a treatment now that could give him a brain tumor when he is in his
twenties? NO! I absolutely do not! I know that all the chemotherapy he has
received also has the potential to cause other major problems down the road as
well. On the other hand, if we do not
treat the disease his is fighting now, he will not be around in seventeen
years. We are left with the decision to
get rid of the disease he has and do our best to prevent a relapse. This includes cranial radiation to hopefully
kill any diseased stem cells hiding in his brain. We will give him every chance to fight a
winning battle with T-ALL and pray that God will protect the healthy cells and
prevent future problems. We will keep
walking and trusting.
Subscribe to:
Posts (Atom)