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.

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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.

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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.