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.

The Gifts

On Thursday, September 8, 2011:

• 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. 

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!

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.

Blood Transfusion

Somebody gave his/her blood so Derek could have the ability to fight.  Thank you, somebody!

May 14, 2012

Last week, the day after celebrating Derek's birthday, we went to the clinic as expected.  He had labs drawn, was sedated for a lumbar puncture (LP) and spinal chemo, and then got two more chemo meds, one of which took about six hours from start to finish.  We were there 10 1/2 hours. 

When we got his lab results back, I learned to my dismay that his ANC (his ability to fight infection) was only 200 (normal is 3000+), and we had just had friends and family over the day before!  Thankfully he did not get sick, though I learned on Thursday that several members of one family came down with colds the next day and week.  I had thought it would be higher, or I would not have planned it for then.  Thursday it had been 1300.  Anyway, we had a lovely birthday celebration.

Derek had chemo Tuesday, Wednesday, and Thursday, though those visits were much shorter.  Wednesday's visit only lasted 40 minutes from the time we walked in the door to when we walked out!  Amazing!  It was our shortest visit yet.  On Thursday, he had labs drawn again.  His ANC was ZERO.  That's right! 0!  His white count was 0.48, and hemoglobin 8.2.  The doctor was sure he would need a blood transfusion by Monday, but she fully expected him to run a fever before then, which is a common side effect of the particular chemo he got all week.  If that happened, he would be admitted to the hospital to make sure it wasn't an infection since his immunity was so low as well.  When I got home, I packed his suitcase and mine for such an emergency and prayed that we would not need them.

We spent a very quiet weekend at home, not venturing out for anything lest we bring any germs back with us.  By Sunday, he still had no fevers, though he was anemic -- pale and less than the normal amount of energy.  I knew he would need blood as expected.

Today, we went to the clinic at 8:30 again.  Already it was packed, and I knew we were in for a very long day.  He had labs drawn within an hour, but had to wait until just after noon for his LP.  He did not sedate as easily as usual.  They said since he had just had an LP the previous week, his body may have gotten a bit used to the medications.  They also had a hard time drawing enough spinal fluid, but at last it was over.  Derek's ANC was 300, white count was .7, and hemoglobin was 7.3.  We had to wait until 2:30 p.m. for the blood to arrive.  Derek slept during most of the three hours it took to transfuse him.  Finally, just before 6:00 p.m., we were done.  Another long clinic day completed. 

This is the last week of chemo in this phase.  The next two weeks he will have cranial radiation.  I am not thrilled about it, but the options are not good.  Then he will have completed this fourth and dreaded phase of Delayed Intensification.  I cannot wait for it to be over!  I am thankful, though, that he has done so well.  So far, he has done much better than I expected and feared. Thank you to all those who have prayed for Derek, especially during these last few weeks.  Your prayers have been answered.

6th Birthday Celebration

Derek got a new little cage and net!  What will be caught first?

 

A lizard of course!  Don't worry, Derek didn't catch it, and he didn't touch it either, though I'm sure he will do plenty of lizard catching and holding when he is allowed.

The cake was made by volunteer Christie and coordinated by IcingSmiles.org.  It was so creatively decorated...        (Click the picture to see it up close.)

... and was just what Derek wanted. Everything on it was edible except the trees and candle. Very cute!

Blowing out the candle.

It tasted really good, too!

Kristen's and Derek's cousins brought the orphaned kittens they had bottle-fed.  All the kids loved playing with them.  This little one followed Kristen everywhere and purred and purred when Kristen picked her up.

May 5, 2012

Derek is now half way through Delayed Intensification.  He lost most of his hair again, but not quite all of it.  What is left is over an inch long and sticks straight out unless I wet it down.  It looks like he touched a static electricity ball, but at least he has some hair left.  He did not want to lose it again.  This past week he was at the clinic five days in a row and received the study chemo.  Now he has just four weeks to go before maintenance - two weeks of intense chemo (four days each week) and two weeks of cranial radiation (four days each week.)  Monday will be another marathon at the clinic.  He gets yet another lumbar puncture for spinal chemo (and he can't eat or drink past midnight.)  He also gets a chemo for which he must be very well hydrated.  So we will have to go early to get started with IV hydration (since he can't drink anything), get his LP, and get his other two chemo meds.  After he gets his chemo, they will have to keep him hooked up to IV fluids for another four hours. So it will be another all day event.  But we are almost there.  We see the light at the end of the tunnel, and at this point anyway, it does not look like it is another train coming.

This weekend we are doing some celebrating of life.  Today we celebrated Vince's mom's birthday with a special Sabbath dinner.  Tomorrow we are going to celebrate Derek's 6th birthday a couple weeks early.  We are doing it early because his counts are better now than they will be on his birthday.  So we will celebrate with family and a few friends.  A couple months ago, a friend told me about an organization called Icing Smiles.  They organize bakers all over the country and around the world who donate cakes to children with life-threatening illnesses and to their siblings.  I requested a birthday cake for Derek's birthday, and tomorrow we will pick it up for his celebration.  Derek requested a beaver pond cake.  For those who would like more information, their website is www.IcingSmiles.org.

April 23, 2012

Since writing the post "Hope - Reprised," I have received many notes and phone calls of concern.  I think somehow the true message of that post was lost in the deep emotions expressed.  I do have hope -- lots of it.  The grieving mother and our former roommate have hope, too.  That was my point. But possessing hope does not leave one emotionless or unable to feel anguish or pain.  Instead, it allows one to cling to God even through the depths of anguish and pain. I also have peace, even though I do not know what the future holds.  I know my family and I are in the hands of a God who cares for us intimately and has promised to be with us ALWAYS.  He lovingly provided opportunities to grow my faith and hope in Him long before we embarked on this latest journey with leukemia.  I already had clear evidence for myself that God provides for my family no matter what the devil throws at us.  This latest journey, though more difficult than I ever imagined, has only strengthened that conviction.  No one knows what the future holds, but it is easy to ignore that fact when everything is "normal."  I have hope for you, my readers, that through my experiences, you will see the necessity of connecting with God, the Source of hope and peace, for yourself. 

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Derek is beginning his fourth week of Delayed Intensification (DI).  So far he has done pretty well, with the exception of one scare during the first week which I will explain later.  The chemo medications he has had do not drop the blood levels too severely.  One of the chemo meds (Doxo) usually causes hair loss, but with his third and last Doxo treatment last week, he still had not begun to lose any.  I was almost beginning to think he might keep his hair after all.  But a couple days ago, I began to notice a few hairs on his pillow.  Here we go again.  Today it is falling out by the handfuls.  I offered to cut it all off if it was driving him crazy, but he is reluctant to do that. Back in September, I had expected he would lose it all and that I would not be giving any haircuts for a long time.  But it fell out pretty evenly, so even though it was thin, he still had hair.  It grew longer over time and was quite fuzzy and almost curly, though remaining thin.  During Interim Maintenance more hair started to grow back.  On Easter I actually gave him haircut using scissors instead of a razor.  What a surprise!  But now he is losing it again. We will have to wait to see if he keeps any this time around as he did before.

Three weeks ago when he began DI, Derek started a steroid as part of his treatment.  It increased his appetite dramatically, as expected.  But on Thursday evening of that first week he started having breathing problems and was extremely lethargic and sleepy.  Friday morning he hardly wanted to get out of bed, and though eating well, he had absolutely no energy.  He complained of being cold and was still having problems breathing.  I put him in the car and called the clinic as soon as they opened and explained his symptoms.  They wanted to see him as soon as possible because steroids can mask fevers. The chills, lethargy, trouble breathing could all indicate an infection even without the presence of a fever.  Since we was already on way I told them I'd be there soon.

When we got to the clinic, Derek managed to walk in, but he almost seemed to wilt onto the chair in our curtained cubicle. They drew labs, put a monitor on his finger to watch pulse and oxygenation, and we waited.  His face was very flushed, and he wanted a blanket to keep warm.  Then his breathing became very labored and his nostrils were even flaring as though he was really struggling to get a breath.  The pulse-ox indicated his oxygen level was within normal limits, but they decided to put an oxygen mask on him anyway.  It did seem to help, and after being on it for half an hour he perked up and wanted to play a little.  His labs came back almost identical to Monday's labs, so nothing was unusual.  They were still worried about a masked infection and started him on antibiotics while arranging to admit him for further testing at the hospital. So about 4:00 we headed to the hospital.  He even got a private room but also had to have vitals every two hours.

That night when he went to sleep, his heart rate slowed, which is typical.  It is not unusual for his sleeping heart rate to dip into the lower 50's.  But this time it kept getting down into the lower 40's which would set off the alarm on his monitor.  Around midnight, the nurse came running in to turn off the alarm and check on him.  His heart rate had dropped momentarily to 35.  She was really worried and woke him up to make sure he was OK.  Then she ordered an EKG.  Around 2:30 a.m. they came in to do that, waking him up again while they attached the stickers all over his torso.  The EKG showed everything was normal, just slow.  At 4 a.m. the nurse came in again to draw labs, waking him yet again.  After a night like that, he was understandably cranky and tired.  He was still having labored breathing, but again his oxygen levels were fine.

The nurse practitioner came in mid-morning to examine him.  She and the others were all scratching their heads trying to figure out what was going on with him.  Every test was coming back normal.

Our church brought over a lovely meal for us from their potluck, and while I was downstairs eating with Kristen and my aunt, Vince came down and said the oncologist had just done rounds and thought Derek's breathing problem was just a side effect of the steroid he is on. He had released him to go home because there was nothing life-threatening, and there were no other indications of infection.  I raced upstairs to talk to him.  He told me that this steroid is known to slow the heart rate which caused his lethargy and the chilling. The couple of pounds he had gained that week were causing the breathing issues.  He felt safe to send him home and check in with the clinic again on Monday.  We were so relieved and thankful that he was alright.  So only 25 hours after walking into the hospital, we walked out again; the shortest hospital stay for Derek yet.

As of last night, Derek is finished with the steroid.  He has been quite tired still, often taking two naps a day.  His appetite has been very good, and he has gained back the weight he had lost. This week he will get no chemo, but next week we will be at the clinic five days in a row for chemo.

Monday, April 2, 2012 - Phase 4 Started

This morning, Derek and I headed to the clinic early.  If his labs met minimum levels, he was slated to begin Phase 4 called "Delayed Intensification" (DI).  Yes, the name aptly describes it.  It will be intense.  It will be like Phases 1 and 2 combined.  He was scheduled for a lumbar puncture with sedation and intrathecal chemo, an echo cardiogram, two more IV chemo meds and an oral one I had to pick up later and administer at home.  Because of the scheduled sedation, Derek couldn't eat or drink anything beforehand.  The clinic was extremely busy and he didn't actually get drawn until around 10 a.m.  Starving hungry, he then had to wait until the results came back.  Finally, by 11:00, we received the all-clear.  By noon, they had him in the procedure room preparing for the lumbar puncture.  He did really well, but I had to push him a little to wake up in time to get over to the hospital for the echo cardiogram at 2:00.  He ate "breakfast" in the car on the 10 minute drive to the hospital.  The echo went fine, and he dozed through part of it. At 4:00 we headed back at the clinic to wait for the results. He ate lunch on the way back to the clinic.  The echo came back normal, and by 5:00 they gave him his last two chemo meds.  Finally, little after 6:00 p.m we walked out of the clinic.  Another marathon nine-and-a-half-hour day.

Derek will have weekly clinic visits with chemo for the next several weeks and oral meds to take at home.  It is likely to drop his counts very low and keep them there for a while.  Keeping him well will be the biggest challenge.  DI here we come.

HOPE - Reprised

Doctors, nurses, and other hospital personnel, many not from our unit, hurried briskly past our room. When I stepped into the hall, I could hear an alarm sounding at the nurses’ desks, and I could see they were crowding into the room at the end of the hall.  I knew who was in that room.  It was a sixteen-year-old boy who had been fighting a long, losing battle with osteo sarcoma.  We had been in neighboring rooms during an earlier hospital stay, and I had heard him cry out in pain that could not be entirely controlled with medications.  I had talked with his mother who walked with a cane and usually wore very dark sunglasses indoors. I wondered if she was hiding her eyes so we could not see her pain.  I spoke with her a few times and learned that her husband had died suddenly within the last two years while her only child was fighting cancer.  She told me the doctors had told her there was nothing more they could do for him, and they were just trying to keep him as comfortable as possible until, … well, this. 

Nurses could not confirm my suspicions because of confidentiality laws, so I did not even ask. But I knew what had happened.  His battle was over. The doctors left, and the oncology nurses began filing into his room.  A deep pain welled up inside my chest, making it difficult to get a full breath of air.  It was pain for the mother who had lost so much, pain for the nurses who had worked with him for several years and the one who was his nurse tonight, and pain for our 15-year-old roommate who, unaware of the situation down the hall, had recently received the same diagnosis.  I wept silently, wishing I had the privacy to weep openly.  It was all so real; our mortality, the roommate’s mortality, Derek’s mortality.  Life on this planet is so fragile and filled with such pain and heartache.  The previous night I had written the blog post about hope.  Now this.  Where was the hope now? It was over.  Hopes dashed.  Fears realized. A widow now left childless.  Another son of another mother just entering upon a similar battle.  What hope has he?

A little later, as I ventured out to the restroom, I found her sitting in the parents’ tiny lounge.  She wore no sunglasses now.  As I entered the room, she said softly, “He is at rest now. No more pain.  He is at peace.”  In her eyes, I could see she was at peace now, too.  Her battle as a cancer mom was also over.  She told me her son knew it was the end that afternoon and had told her to take care of their friend at the Ronald McDonald House.  She told me he had gone peacefully just after she had stepped out for a little while.  I told her she reminded me of Job. She replied, “Oh no! I am not that strong. Not that strong,” but her black T-shirt was emblazoned with the words, “God has been so good 2 me.”  Sounds like strength to me, and hope; hope that has been realized.

On my way back to our room, I encountered a favorite nurse. I hugged her, and both of us cried.  I told her that she and all the other nurses, doctors, and personnel on this unit are the bravest people I know.  Knowing the end result of some cancer cases, they still work their hardest to make life as pleasant and painless as possible.  They are masters at making kids feel special and loved, bringing laughter and smiles, building each one up to face the battles ahead.  She admitted that nights like this one are difficult, but her voice trailed off as she said, “But we have to keep going, because all of these…,” and she waved her arm around, indicating the children in all the rooms on the unit. “They are still so full of life.  We have to keep going, for them,” she added. 

It is as inescapable as death, and even realized in death.  A taste of the ultimate triumph over death is HOPE.

- - - - - - - - - - - - - -
Derek had to be transfused on Sunday because of low hemoglobin.  He finally cleared his chemo and came home on Tuesday afternoon. His energy level is still lower than usual, but he is doing alright.  A visit to the clinic today (Friday, March 30) indicated his ANC is good (1200) but his liver enzymes are very high (which is typical following HD MTX.) If his enzyme levels comes down by Monday, he will begin Phase 4 - Delayed Intensification with four different chemo meds, a lumbar puncture for spinal chemo, and an echo cardiogram.

Because we were still in the hospital on Monday, we celebrated Kristen's birthday in the cafeteria. I will post pictures later.

HOPE - Friday, March 23, 2012

Sometimes it hits me, the reality of the place we are in.  The roommate who, a week ago received the same medication as Derek received on Monday, frequently throws up.  The sounds of his discomfort come unhindered through the curtain that separates us.  Nothing seems to help him. The new family next door discusses their daughter’s CT scan and learns the seriousness of her case, their lives forever changed in moments.  They reel from the shock of being thrust upon this unexpected and un-chosen journey so many of us on the unit share and wish we didn’t.  As I return from the restroom at 4 a.m., a mother turns to hide her sobs as her son moans just inside the slightly open door. I pause and put my hand gently on her shoulder. I’ve been there, too.  As she turns toward me, I tell her I’m so sorry.  Through her tears, she tells me she is sorry for me, too.  I return to Derek’s room in tears myself. 

The people on this unit live with more pain than I have personally ever seen in my life. And yet, just as the power of growth pushes a small plant slowly to the light through layers of asphalt, a power stronger than death steals its way into the precious hearts around me.  It is HOPE.  The courage, faith, and HOPE I see here are as staggering as the pain. I talk with another mother of an adorable three-year-old with a metastasized brain tumor that is not responding well to treatment.  She tells me how, on a recent visit to the chapel downstairs, he yelled at the top of his lungs, “I LOVE YOU GOD!” He told his mom God was going to make him well.  She asked him how he knew, and the little boy replied, “He told me!”  There it is: HOPE.  The nurses and doctors on this unit deal with sickness, pain, and death on a regular basis, and yet they continue, working intently for their patients, the power of HOPE compelling them. 

None of us knows what a day will bring.  We do not know how, when, or even if our hopes will be realized. But it really doesn’t matter. The Author of hope would not give it were it not a valuable asset for the journey on which He accompanies us. He has promised us a future and a hope (Jer. 29:11) I do not know what that future will look like, but I still cling to HOPE.

---------------------------------

Derek is still in the hospital tonight. He is much slower this time in clearing the chemo from his system.  It seems like it is catching up with him.  This morning his chemo level was .29.  It must be less than .1 before they will release him.  It has also dropped his blood counts this time.  His ANC is 400, his WBC is .78, and his hemoglobin is dropping.  The mouth sores showed up again today.  So far they are not too bad, and we are doing everything we can to prevent them from getting bad. I don't think we will be getting out tomorrow. 

March 20, 2012

Derek was admitted Sunday night for his last dose of high-dose methotrexate.  After hydrating him all night, they started the chemo mid-day yesterday. Now he is finished, but we have to wait for it to clear his system.  Tomorrow they will start the leucovorin treatment to rescue his healthy cells.  From looking at his treatment plan (called his road map) it looks like this is his last scheduled in-patient treatment. The rest can be done on an outpatient basis.  Phase 4 of his treatment, called Delayed Intensification, will begin in two weeks.

Six Months

Last week marked six months since we began this leukemia journey.  In some ways, it seems like it has been an eternity, but mostly I can't believe it has been HALF A YEAR!!  We still have about three months until we are finished with the worst part of his treatment and almost three years until all his treatment is completed.

In many ways, I feel like we were dumped on another planet. There is very little about our lives that is the same as it was before Derek's diagnosis. We have been forced to accept uncertainty, to live each day with the realization that something unexpected could happen, to walk on, though we frequently do not know how to do it or where we the path will lead next. What makes the journey bearable is the knowledge that nothing takes God by surprise and the assurance that He is with us always.

Things I am learning: (Some of them are much easier said than done.)

• When Jesus said we should be like little children, I think He said "little" on purpose.  Little children do not worry about the future. They live for now.  If they feel good, they play; if they don't, they take a nap. I can take one step at a time, and I do not have to worry about the future.  I don't know what will happen tomorrow anyway.
• Anything can happen, and something probably will. I can keep going.
• Not all promises in the Bible are for now. They are still the promises of God, even if they don't happen just when I would like them.  An ultimate fulfillment is even better than getting it right now.  I can claim them still.
• There are Bible promises for now. I can trust God to keep them.
• Though my road has been rough and filled with heartache, there are many others with far rockier journeys than mine and with far more heartache. I look forward to the end of these journeys, and I am thankful this world is not our home.  
• I have more friends than I can count, some of whom I have never met. I look forward to heaven.

Round Three of High-dose Methotrexate

Last Sunday, March 4, proved to be a very full day.  Kristen had been preparing for the California Piano Certificate of Merit exam which took place on Sunday.  The examination included sight reading, technique, performance of two pieces she had practiced, and a written theory test. As this was her first time sitting for this exam, she was very nervous.  Because of our crazy lack of schedule, she has had a hard time getting in regular practice times, but she has worked hard on all the components. I took her for the exam at 11:30 a.m. Parents were not allowed into the examination room, which added to her anxiety.  But she did just fine. We found out Tuesday at her piano lesson that she did an excellent job and passed with honors. Great work, Kristen!

Following the exam, my family had a mini family reunion with my mom, two of her brothers, and a couple of my cousins.  It was good to see them again.

Derek was also scheduled to be admitted to the hospital Sunday evening for round three of high-dose methotrexate.  I took him in at 8 p.m. and we settled in for the night after a busy day.

Monday morning he was sedated for intrathecal chemo in his spinal fluid and then was hooked up to a large bag of methotrexate which flowed slowly into his veins for 24 hours.  This time time around, I did not push fluids the first two days, as I had done before. Derek's chemo levels in his blood came down a little more slowly, and it did not qualify him for early release, which was a good thing. This meant that he got more leucovorin to put folic acid back in his healthy cells. It also meant that he was in the hospital for six days.  Once I knew he had to clear the methotrexate to 0.1 before being sent home, I started pushing him to drink more fluids.  He has gotten three small mouth sores, but they have not prevented his eating and drinking as they did before.  I am convinced now, that he needs the extra leucovorin.

When Derek saw me writing this blog entry, he wanted me to write this for him. "I just had my high-dose methotrexate. If I don't get enough leucovorin I get mouth sores."

Derek's energy level has not dropped at all.  By Friday, it was all I could do to keep him contained.  Friday afternoon, the nurse disconnected his port from the IV pole, and I took him down to a floor that has a long hallway connecting the children's hospital with the main hospital.  It has windows that look out the front of the hospital.  Because that floor is mainly used for outpatient procedures, there are very few people around in the late afternoons, evenings, and weekends.  He could run up and down the carpeted hallway to his hearts content.

Sabbath morning, Derek's methotrexate level finally reached .08 and he was released from the hospital about noon.  It was great to get home.  Friends brought lunch over, and we hiked up the hill behind our house in the afternoon.

Three rounds of high-dose methotrexate down. One more to go.  He is supposed to be home this week and go in next Monday for his last dose.  Then he moves on to Phase 4.

Mouth Sores - February 27, 2012

 

I have been so slow in updating my blog.  My last post perhaps made it sound like I have everything under control.  Let me assure you I do not.  I guess I just don’t feel as overwhelmed about being out of control as I did those first few months.  Anyway, here is an update.

The hospital stay for Derek’s fever ended abruptly two days later when the results of his lab work showed he had RSV, a respiratory virus.  His fever was down by then and they sent us home to recover since there is no medication to cure it.  In all, it delayed his chemo treatments two weeks.  He recovered from the RSV with no further complications.

On Friday, February 17, we went to the clinic for labs to see if his counts were good enough for chemo over the weekend.  His ANC had to be at least 750, and it was 1300, well enough for admission.  We had to wait several hours for a bed to become available.  Again, he had a large bag of Methotrexate flow into him over 24 hours.  It made him a little bit unresponsive and he lost his appetite.  Other than that, he had no major side effects at the time.  His levels came down much more quickly because I was trying to get him to drink lots of extra fluids to clear it from his system quickly.  It worked, a little too well, as I discovered a little too late. 

After getting high dose Methotrexate (MTX) they give him a medication called leucovorin to put folic acid (that had been forced out by the MTX) back in the healthy cells.  This medication has to be given at precise intervals following treatment.  The number of times leucovorin is given is determined by blood tests that show how much MTX is still in his system.  If the MTX stays in at higher levels, it requires additional doses of leucorvorin. They had told us that his level of MTX had to be .1 or less before they could release him the first time, and I assumed that would be the case the second time as well.

By Monday morning his level was down significantly, and when they did rounds and looked at his protocol, they discovered that because his levels had been well below the minimum for the first several checks that he would not need additional leucovorin and that he did not need to reach the .1 level before going home.  So they sent him home with only three leucovorin treatments. We rejoiced that we could go home early.

However, on Wednesday morning, Derek started complaining his throat hurt.  I looked in and didn’t really see anything.  By lunch, he said his mouth hurt at the back on one side.  I look again and saw a huge sore right next to one of his new molars that have just emerged.  By supper he didn’t want to eat anything, even though he was hungry. 

Mouth sores can be a side effect of high-dose MTX. The first time around he had no problems, but I suspect now that because he did not get additional leucovorin, he got a really bad case of them this time. It is just hard to watch my little one in so much pain and not be able to do anything about it.

First thing Thursday morning I called the clinic. Derek would hardly eat or drink anything. He had sores on both sides and at the back as well.  They prescribed a mouthwash using baking soda and salt dissolved in water.  That helped a little, but not much. They also prescribed a mouthwash called Pink Lady that includes a topical anesthetic.  With that I was at least able to keep him better hydrated.  Friday we went to the clinic and they found more sores under his tongue also.  The poor boy had them everywhere.  He was only able to eat soft foods and liquids and only for a short time following rinsing his mouth with Pink Lady.  They said the sores should start going away by today (Monday.) 

Yesterday, his mouth was much improved, and he ate and ate, still mostly soft foods.  Today, he didn’t need any Pink Lady and was eating normally again.  They seem to have disappeared, thankfully.

He is scheduled to go back into the hospital for his next MTX treatment this Friday.  I don’t think I’m going to push the liquids as much as I did last time.  Maybe additional leucovorin will help prevent him getting mouth sores this time.  Even if it means extra time in the hospital, it may be worth it to avoid the pain, hunger, and thirst he experienced this last time.

A New Normal

When we first embarked on this journey, we were operating in crisis mode.  With the help of God, family, friends, and church family, we managed to survive those first months.  If something was not about our immediate survival or the wellbeing or comfort of my children, I did not do it.  Only the most pressing matters were attended to and everything else was put off until later.  If I had not had so much help, I really do not know how we would have survived.  As I have said before, we were carried along on a tidal wave of love and support. 

A couple of people who KNEW told me to hang in there, that we would get to a new normal.  A new normal?  There was nothing happening that I WANTED to become normal.  I did not even want this new existence in the first place, and I certainly didn’t want it to become normal.  But one cannot survive forever in crisis mode.  Resilience eventually takes over.

When Derek got out of the hospital the second time, my parents, who had stayed for seven weeks, went home. While I still had a lot of help from friends, I was forced to figure out how to fit in some things I had put off or let my mom do for me.  Now some things were added to my must-do list.  I had to do my own laundry, prepare food, and clean up the resulting messes.  Daily or almost daily visits to the clinic took up massive amounts of time.  It was during this time that I began to figure out a routine even in the midst of constant change, never knowing how long something would take, or when we would have to go back to the hospital at a moment’s notice.  While I didn’t dare bring it to conscious thought, I was figuring out how to survive in my new reality.  I was reaching a new normal. 

I am no longer operating in crisis mode.  I am walking one step at a time, able to take what comes with what God provides for me.  He has supplied abundant help from friends and family.  Dear friends watch Kristen when she cannot be with me.  More friends and church family bring meals each day we are in the hospital.  Other friends and family support in other ways.  I still don’t know what I would do without them.  I am even learning to ask for help when I need it because I admit I can not survive this by myself.  It is all part of my new normal.

A couple of weeks ago, Kristen said, “Mommy, what did we do before we had to go to the clinic all the time?”  She has reached a new normal, too.  Most of the children we see regularly are also operating in our new normal as well.   Doesn’t everyone spend hours at clinics with unexpected or planned visits to the hospital?  Doesn’t every child make realistic Lego clinics, complete with procedure rooms, playrooms, and nurses’ desks?  What was life like before this?

Even Derek himself has reached a new normal.  He is so used to feeling as he is that he does not see himself as sick.  Friday, when he just had a cold, we received a sweet card in the mail from a child friend.  Inside, it said, “From ___, To Derek, Get well.”  Derek looked at me and said, “Get well?  From what?  My cold?”  Doesn’t every child take half a dozen medications morning and night? Isn’t every child sedated for lumbar punctures and bone marrow tests?  Doesn’t every child spend weeks in the hospital?  In his mind, he is not sick. This is normal.

Today marks five months since we began this journey.  God has been with us at every step and every turn. I am so thankful for the resilience He has put in the human spirit; the ability to survive, to keep walking one step at a time through unknown territory, the ability to reach a new normal.