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.

Tuesday, September 18, 2012

Guess Who's Home!

There's no place like home!
After a very long month away from his home, his friends, and his family, Jonah is finally going to be sleeping in his own bed tonight. God has certainly been keeping us on our toes and teaching us to hold our plans very loosely, but after all of the unexpected changes during these past several weeks, we are praying that this week at home will be refreshingly mundane. Jonah is incredibly happy just to have the privilege of setting his feet on familiar ground, and we are so thankful to simply be together as a family again.

Look at Liam's face in that picture. A happy reunion, if there ever was one. Liam and Jonah have seen each other for a grand total of about thirty minutes during the last four weeks. We tried—twice—to get the whole family together at the lake house, but both times our two littlest got sick and couldn't be around Jonah, so tonight was  our first family meal since August 19th. It's a joyous occasion, but still bittersweet, since we know that he has to leave again on Monday. However, we hope to make these six days as sweet as possible for him—and for all of us.

Jayson and his mom and I have been driving back and forth between home and the hospital and the lake house, sharing the load of caring for a household divided by distance. This has made our schedule rather hectic, but it has also allowed each of us to have time with kids in both places. It's been difficult, but it's been livable. However, there's nothing that compares to being all together in our own home. So wonderful. Never underestimate the value of normalcy.

But then again, never underestimate the value of trials. Sometimes the deepest, richest grace comes wrapped in the most unappealing packages. I have discovered flashes of glory in the most unlikely settings. I was loading groceries into my car after a little shopping trip in Coeur d'Alene last week, and, noticing something moving out of the corner of my eye, looked up to see this bright bird of paradise hopping around inside the weathered cab of a dilapidated yellow pickup truck. Sometimes grace is like that: beautiful, glorious, and surprising—and all the more so because we find it within the ugliest situations.

These weeks have been a wild and unpredictable ride. I have tried multiple times this week to sit down and document it, but blogging without a proper computer has been more difficult than I thought. I hope to get a laptop soon so that I can keep you updated more easily. Now that I'm home, I'll try to fill you in on what we've been up to these last several days:

While I was home last week, I was able to do a few fun things with my other boys, including joining Paul's and Asaph's classes at the county fair. But most of my week was spent away from home with Jonah.

The Friday before last was quite the preposterous series of events. After a long day at the hospital for a clinic appointment, Jonah and I returned to the lake house only to discover that we had locked ourselves out. My keys were on the kitchen counter, and the other set of keys was ninety miles away. Thankfully Jayson and the family were already planning to come up to see us that evening, so they hurried to the van and got there as soon as they could. In the meantime we met a few of our sweet neighbors—including another ten-year-old boy who has been on cancer drugs himself for a kidney disorder—and enjoyed a lovely afternoon by the water, eating grapes and reading aloud while we waited.

Once Jayson arrived, we breathed a brief sigh of relief. And then chaos ensued. We were halfway through unloading the van while the big boys ran through the house shouting excitedly to each other as they discovered each new room, when Liam threw up on the hearth, Asaph started coughing, Jayson and I  scrambled to quarantine and disinfect, and Grannie M buckled both little boys back into the car and drove them the whole 90 miles back home for the weekend. The remaining boys tore into a huge box of gifts from Jonah's baseball team, I followed them around picking up bits of wrapping paper, and then the spaghetti boiled over. Surprisingly (no doubt because so many people have been praying for us) we all managed to keep our sanity and sense of humor through the whole ridiculous scene. And we were still able to enjoy a beautiful Saturday on the lake the next day with my brother's family and both my parents. My dad rented a boat, and we all—even Jonah—spent several pleasant hours enjoying the water and the warm weather to celebrate my dad's 60th.

In addition to a few regularly scheduled visits to the hospital, Jonah also managed to visit the Emergency Room. Twice. Last Wednesday morning I took him in after he couldn't stop vomiting, and then on Friday evening, right after Paul and Jude came to stay the weekend, I had to take him back to the ER for severe abdominal pain. That night was particularly rough; I've never seen him in such agony. The pain turned out to be simply the result of a slowed digestive system on account of the drugs he's on, but that didn't make it any less miserable. After a few doses of morphine, an X-ray, and a CT scan to rule out more serious problems, he was admitted, and we spent the rest of night in the hospital—by which I mean, we got to bed at 5:30 in the morning and slept until 9:00. Yaaaawn. But later that day, after a good nap, Jonah was back on his feet and doing this:

video


We've had our difficult moments, to be sure, but Jonah has been remarkably brave and has maintained good spirits and steadfast faith during some very challenging times. Please pray that he continues to pass this monumental test. We are thankful to know that Jonah is done with the first phase ("induction") of his 3 1/2-year treatment. Jonah's hair is just now starting to fall out slowly, but today he was able to quit taking his steroid, which means the puffiness in his face should start to subside over the next few weeks. This morning he also had a spinal tap and a bone marrow aspirate. The results of his bone marrow sample will determine how aggressive the next phase of treatment must be, so please pray for the tests to come back negative, with no cancer cells.

Thank you all for praying for us and for providing us with meals, cards, gifts, rides, donations, and encouragement throughout this first difficult month. We know that the grace of God has upheld us and met our many needs, and we know that much of that grace has come through your hands. Thank you. Please rejoice with us in Jonah's homecoming, and please continue to remember us all in your prayers as we move on to the next phases of Jonah's battle with leukemia. We sure do love that boy.

Wednesday, September 5, 2012

Out of the hospital!

So, the big news is that Jonah was released from the hospital yesterday evening. His doctor was not terribly concerned about his ANC so long as he stays away from public places and sick people for the time being. He has an appointment with his oncologist on Friday, so we will find out then if he is safe to go out a bit. We are enjoying Jonah's first day out of the hospital at a beautiful home on Lake Couer d'Alene owned by some friends from our church. What a huge blessing this place is. It will be hard to go home after being spoiled like this! The view and the house are both lovely. Jonah was nervous about leaving the reassuring safety of the hospital, but as soon as we arrived here he forgot all about his fears and started excitedly exploring every room.

Jonah was able to walk down to the dock this morning and dangle his feet in the lake. No swimming for him until his PICC line is replaced by a port at the end of the month, but the fresh air and the proximity to the water have had him smiling. And, as some wise man once said, "A merry heart doeth good like a medicine." From where I am sitting I can see the lights of Coeur d'Alene and the resort in the distance, and we are sharing the neighborhood with deer and and red winged blackbirds and blue herons. 

Jonah, who loves to spend time in the kitchen, got to help me make some beef stir fry for dinner tonight--another big boost to his spirits. While we are stuck so far from home, he might as well hone his culinary skills, right? By the end of this ordeal, I hope to have a fully fledged sous-chef around the house.

Next, we will need to bring our piano keyboard up here so that he can start practicing again, and I need to learn a thing or two about being a homeschool mom. In a place like this it will be all too easy to feel like we're on vacation and to forget that this boy has some work to do!

So far Jonah has felt fine today in spite of yesterday's dose of chemo. This is great news, since I have not had to give him any anti-nausea or pain medications at all since we left the hospital. I am more than happy to eliminate any unnecessary drugs from his medication-saturated body, so I would be grateful for your prayers that this will continue. And please keep praying for his ANC to recover. My dad is turning 60 next week, so, although some of our other kids have had colds,  we'd love to be able to have the whole family together to celebrate. We have much to celebrate already.

Some of you have asked how you can help from a distance. We have had countless immediate needs already met by many of you, so thank you. But if you are looking for addtional info, a friend of ours has created a web site for us that should have all the pertinent news about Jonah and links to additional ways to help: www.helpjonah.comWe are grateful for all your ongoing prayers and support. 

Tuesday, September 4, 2012

Jonah, 9/4/12

I am sitting here by the window at Sacred Heart Children's Hospital wondering what today will bring. Last week Jonah's oncologist said she expected him to be released from the hospital on Tuesday. That would be today, for those of you who are keeping track. But so far it looks like Jonah's ANC is still too low (55. Normal is around 2-3000.) for him to leave the safe and sanitary environment of the hospital without serious risk of infection. The slower his ANC is to recover after a dose of chemo, the more time he will have to spend away from home, so please continue to pray that his numbers will climb back quickly each time.

Two of Jonah's good friends came to visit this weekend which boosted his spirits and helped the time pass much more pleasantly. He really misses being at school and church and seeing his friends regularly, so these short visits are a very welcome change to the hospital routine.

Jonah has been feeling fairly good, but he is now starting to get some mouth sores, a common side effect of the chemo drugs. They are designed to kill fast growing cells, which includes cancer cells but also includes the cells of the mouth/GI lining and hair follicles, so mouth sores and hair loss are almost inevitable. No hair has fallen out yet, but we expect it to happen sometime this week or next. And the steroids he is on are also making him look a little puffy in the face--also a common side effect.

Just to make life a little more exciting, I woke up yesterday with abdominal pain that was so severe I thought it might be appendicitis. But thankfully that gradually subsided, although it took all day. I suspect that it had a lot to do with stress and my less than optimal eating habits lately. Anyway, thanks to those of you who were praying for that. I would hate to put the rest of my family through having two of us in the hospital right now--although it would no doubt make for some funny stories to tell later. (My grandma had her appendix out at the same time that she was supposed to be taking care of things at home while her mom was in the hospital, so they both ended up in recovery together. Crazy times. It's an anecdote that makes us laugh when she tells it now.)

We would, in fact, love to have none of us in the hospital soon. Jonah has always enjoyed being outdoors, and the closest he can get right now is a third floor hospital balcony overlooking the city. The view is fun, but it isn't the same as having his feet in the grass. So please keep praying for his immune system to bounce back rapidly so that he can leave sometime in the next couple days. He will have to be back here again every so often, but we would love to maximize his time away from the pediatric oncology ward. I will keep you all updated when we find out when Jonah can be released. Thanks for praying.

Saturday, September 1, 2012

The latest on Jonah, 9/1/12

September? Wow. August 20 seems like an age ago. Did finding missing socks and paying library late fees ever seem remotely important to me? Two weeks ago would I have believed that I would now know how to flush a PICC line with saline and would have words like "Daunorubicin" and "lymphoblastic" rolling off the tip of my tongue? I cannot imagine living through such a sudden and spectacular transformation without knowing that we are upheld by the God who does not change.

After he endured a very long week full of nausea and weakness, Jonah's doctor adjusted some of his medications, and he seems to have finally turned a corner. His appetite, thanks to the steroids he's been on, is now back with a vengeance. He wakes up in the night wanting a snack, and he called me on Friday asking me to bring him some popcorn, two homemade two-egg omelets (because the hospital ones taste like damp dish sponges), and a bag of Buffalo Bleu Kettle Chips, all of which he ate in short order. Since then he's managed to consume remarkable amounts of food—strawberries, peaches, yogurt, bacon, sausage, pepperoni pizza, cheeseburgers, chicken couscous,  root beer, cranberry juice, and so on. After he lost several pounds, we are thankful that he's eating again and keeping it all down. And at this rate he looks like he's going to gain that weight back sooner than later.

Jonah is also the most cheery and talkative we have seen him in weeks. This weekend of seeing him acting more like himself again has been an emotional boost for all of us. We know he will continue to have ups and downs over the course of his treatment, but it is such a joy to have Jonah up and about, smiling, cracking jokes, and with some pink color back in his cheeks after a month of looking pale and tired all the time.

We were able to meet with Jonah's oncologist yesterday, and, as long as he continues on his present course, she is planning to release Jonah from the hospital as early as next week. His blood count is near its nadir, meaning that his immune system is at rock bottom, leaving him at high risk for infections, but as long as his numbers start to come back up as anticipated and he stays free of infection, they would allow him to leave the hospital on Tuesday. This does not mean that he can come home yet; we live too far away for that, but it would still be a welcome change. Thank you for your continued prayers to that end.

We also learned that Jonah will probably be allowed to come all the way home (and sleep in his own bunk bed!) for short intervals much sooner than we thought. This is also a huge relief, since earlier this week another oncologist told us she thought he might not be able to come home at all for six to nine months. That is still a possibility if his blood count is slow to recover after each dose of chemo. But over the next nine months Jonah will very likely be able to come home for varying periods of time in between his stays in the Spokane area. He may even be able to join his class at school for part of that time. So please pray for his body to recover quickly from his treatments and that he (and the rest of us) will remain infection-free  so that we can be together in Moscow as much as possible. We would all—obviously—love to have Jonah home again.

In the meantime, we have found a place to stay, at least for the next couple of months before snow comes, that is within the one-hour allowable driving distance from the hospital. Some church friends have offered the use of their vacation home on Lake Coeur d'Alene, and who could say no to that? This is a huge blessing which is going to make the prospect of living away from home much sweeter for Jonah. The boys may even get to enjoy some autumn fishing together before the weather turns.

We continue to be humbled and astonished by the kindness and love shown us by our Christian brothers and sisters both here and around the world. Hopkins was right: "Christ plays in ten thousand places, / Lovely in limbs, and lovely in eyes not his / To the Father through the features of men's faces." Every time we turn around, Christ is there, and He is unspeakably lovely. Every hot meal, every generous gift, every kind note, every offer of help, every hug, every prayer on our behalf has been Christ to us during these long two weeks. And we are grateful.

UPDATE: Just in the time since I sat down to write this, Jonah's nausea already started to return, and his temperature is now slightly elevated. Please pray that the nausea and fever would subside quickly and that he would still be able to leave on Tuesday.

This gives you some idea of how each day goes for Jonah right now. By the time I start to write one update, the situation changes so that my "update" is already out of date before I hit "publish". We are certainly being kept on our toes, so thank you for praying, even when we don't know what to ask for from moment to moment. God knows our needs even before we do.

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