Saturday, September 29, 2012

Back in the Thick of It

As a much-needed respite during these months of difficult cancer treatments, Jonah was able to spend nearly a week at home. He was grateful just to be back among his people again, seeing his brothers everyday, sleeping in his own bed, and sharing meals with the family.

He joined his class for a half day at school last Wednesday, which, while it may not have been the "first day of school" we had anticipated, was still a welcome opportunity to catch up with his friends and feel a little bit normal, if only for a while. Jonah also got to see his class play on Friday morning. We look forward to the day when he'll be up there on the stage performing with them again.

He also spent some time outdoors swinging his new bat and trying out his new batting gloves. We even went out for dinner one night, to church on Sunday, and to my parents' house for Sunday dinner. But all his activities had to be brief and bookended with rest. His body is still quite weak, and going off the massive doses of steroids he's been on was rather painful. In spite of a handful of little outings, Jonah spent most of the week in bed with a splitting headache and lots of body aches. 

Steroid withdrawals by themselve are no fun, but we now think that he was also suffering from anemia at the same time, because after a blood transfusion on Monday he felt much, much better. Some kids are more sensitive to anemia than others, and we think that may have been behind the severity and duration of his headaches. One more thing to keep an eye on in the future.

The good news is that Jonah's bone marrow test revealed excellent results. His MRD numbers are right where his doctors had hoped—in remission. This sounds fabulous, which it is, but what it means is that here were no detectible cancer cells, not that he is cured. The doctors know from decades of treating kids with leukemia that the cancer will almost certainly return unless chemotherapy treatment continues. However, these good results do mean that Jonah's prognosis is as good as it could be and that we can stay on his present course of treatment instead of requiring an additional eight-week round of intensive chemotherapy. But now begins the first of three eight-week-long phases of chemo, two of which will require Jonah to be away from home. If all goes well, he will likely be able to come home periodically for about eight weeks in between the first and third rounds. Please pray that everything goes as well as—or even better than—his oncologist anticipates it will. 

Now we are back at the hospital, and for longer than we had expected. Jonah had surgery Tuesday morning to remove the PICC line from his arm and install a subcutaneous port in his chest. Since the port is under the skin, it will allow Jonah to enjoy more normal activities when he's feeling well, and we won't have to keep flushing the lines or protecting them from water. It will improve his quality of life once the incision heals. The recovery, however, is not going as smoothly as we had hoped. We anticipated that he would be able to leave the hospital on Wednesday, but he has not been well enough yet to leave because of side effects from a new chemo drug.

While he was sedated for surgery, Jonah also received yet another spinal tap, plus three additional kinds of chemo throughout the afternoon. Nothing like a quad-shot of toxic chemicals to brighten your day. Jonah has been suffering from fevers, headaches, soreness, and nausea ever since he came out of surgery, and the meds he's taking to combat the side effects make him feel punch drunk and spacey. He's mostly miserable, in a zombie-like trance, or asleep. For a few hours a day he's lucid enough for TV. And we got a few smiles out of him today.

We are working with his oncologist and the nurses to try to find some solution to the multiple side effects, but so far there's been no magic remedy. Tylenol, oxycodone, and morphine have kept his pain somewhat under control. But even after seven different nausea medications—including one marijuana derivative—acupressure wrist bands, ginger gum, a ginger supplement, and some pleasantly fruity aromatherapy, he is still living with a constant malaise and no appetite at all. It's all I can do to force him to take a sip from a juice box or eat a single Cheerio.

Sometimes it's hard to believe that all this pain and poison is designed to help and heal. In the last fifty years the survival rate for leukemia patients has gone from nearly zero to close to 90%. Huge strides have been made in this field of medicine. But still. If these pills are so toxic that the nurses have to wear nylon gloves just to touch them, how can I bring myself to watch him swallow them? Every day? For months? It takes a tremendous amount of trust, both in God and in our doctors, to believe that all these things are working together for Jonah's ultimate good.

Sitting here far away from my family helplessly watching Jonah go through this trauma has certainly put both my joy and patience to the test. It can be tempting to sit here staring at my pale, miserable son and throw myself a little pity party to the soundtrack of the beeping IV pump. But spending a week or two on the Pediatric Oncology floor does provide an eye-opening change in perspective.

We are surrounded here by children who are suffering much greater trials than Jonah is. Walking down the hall to the ice machine, I alternate between feelings of horror and gratitude when I come face-to-face with examples of how much worse off Jonah's situation could be.

I've seen kids with feeding tubes and oxygen masks and missing limbs and massive head scars from brain surgery. I have met mothers who have lost their kids to cancer, and I have met others whose kids are facing multiple surgeries and dangerous radiation and developmental delays and very bleak prognoses. So who are we to complain? Jonah's in remission, for pity's sake. His prognosis is good. We're facing more than three years of chemotherapy to keep those undetectable rogue cancer cells from rearing their ugly heads again, but we have good reason to expect that we will not have to see Jonah crippled, maimed, or, God forbid, buried. Among the folks on this floor of the hospital, we're the ones who got a break. We have it easy. Our kid just has high risk acute lymphoblastic leukemia, that's all. Others may envy us.

A good friend of mine who is an oncology nurse told me that when she heard Jonah had leukemia, she prayed, "Please God, let it be ALL." I would never have known to pray for such a thing, but she did. And after talking to a mom a few doors down the hall whose 13-year-old son has AML, I find myself praying, "Thank you, Lord, for letting my son have ALL instead." ALL. What a relief. Thank God.

No, really. Thank God. And please keep praying for Jonah and for all of us. We are on a long road, and we will need your prayers the whole way.


The Lewins said...

Thanks for this post, and all of your updates. I was in the ER last week with one of my boys for some asthma problems, and after six hours there, I was dying to be home. I just kept thinking of you, and what it would be like to be in a hospital with a sick boy for days- months- years... I got sick just thinking about it, and am so thankful that my boys are, aside from a little asthma, healthy. You guys have been on my mind so much. We have been crazy busy, helping Steve finish some big house projects, homeschooling, trying to keep up with my own house, and feeling exhausted. But every time I start pitying myself, your little family pops into my head and I have to tell myself to get over my pity party and push forward. If Hannah can watch her son fight cancer, then I can keep scraping paint off off old windows while my baby plays in piles of sawdust. Perspective is always good. Anyways, praying on...

Becky said...

Our family in Mexico keeps praying for you all.

May the Lord be your Strong Tower today.

Anonymous said...

It was so good to find myself "accidentally" at Trinity on Sunday and see y'all from a distance (as close as I dared get since I wasn't feeling well). When I wake in the night and need to distract myself from my own thoughts with prayer, Jonah's always first on the list.

Michele Dickison said...

Thank you for the update. Your perspective on all of this is a great encouragement. And what a relief it is to hear that the first round of therapy achieved remission. Praying each day that God will show you His plans and purposes in all of this. Lots of love to all of you!

Michele Dickison said...

Thank you for the update. Your perspective on all of this is a great encouragement. And what a relief it is to hear that the first round of therapy achieved remission. Praying each day that God will show you His plans and purposes in all of this. Lots of love to all of you!

annaa said...

I have been reading your posts over the past weeks having been introduced to you through the Femina blog. A verse that I often fall back on --- But the LORD is with me as a dread warrior (Jeremiah 20:11). It drains the fear and brings courage to keep swinging the sword.

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