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.