September 28, 2014: Better

[Henry and Edward after church last Sabbath]

This might be the busiest we've been, yet. Since I wrote three weeks ago we've had five Early On (OT and speech) appointments, three PT appointments, two rituximab infusions, one IVIg infusion, one radioactive isotope injection, one fused MIBG/CT scan (with sedation), and a partridge in a pear tree. 

Here's the good news: Edward is showing progress! We noticed a slight improvement in his shakiness and screaming fits after the IVIg infusion on the 8th, and after two doses of rituximab he's even better. He's sitting up straighter and steadier, he can eat without us holding his forehead to keep his head still, his opsoclonus (chaotic eye movement) has lessened, he's happier for more of the day, he will play independently for longer, and he's sleeping better. He had a lot of sleep problems in the week following his first rituximab infusion, but it's only gotten better since then. Also, Dr. Mitchell called us on Thursday after Edward's MIBG/CT scan to tell us he is still completely free of cancer! Praise God!

A lot of Edward's personality has come back with his happiness. Kameron was throwing him in the air today and he was laughing and laughing, when he used to be terrified (due to his unsteadiness and crazy vision associated with the opsoclonus). He has started wanting to make animal sounds, which is exciting, even though apparently every animal, be it cow, dog,  sheep, or bear, makes the same noise: a closed-mouth growl. Even better, several times lately he has made little staccato humming sounds that jump to different notes, which we interpret to be singing! If he's doing that humming and then stops, we can say, "Edward, can you sing some more?" and he'll grin and start humming again. It's amazing, as we haven't heard anything but grunts, laughs, and cries in a long time. Another miracle happened today when I walked into the living room where Edward was playing happily without me, and he looked up and saw me, smiled, and went back to his playing. It doesn't sound like much, but it's been many months, at least, since we've seen that. Usually, he'll see me and immediately start crying and crawling over to me, insisting to be held. I was able to sit in the same room without holding him, work on the computer, get up and walk out of the room, and come back in a few minutes later all without any wailing from Edward. I will never take these things for granted!

This week we have IVIg and rituximab infusions, PT, and speech therapy. Next week we'll have one last rituximab infusion, PT, OT, and speech, and then we're back to our normal life of just PT, OT, and speech every week with IVIg infusions every three weeks. 

If all these terms are starting to sound overwhelming and you can't remember what is actually wrong with Edward or what we're doing to fix it, here's a quick overview: Edward first showed symptoms on February 14, 2014, and was soon diagnosed with opsoclonus-myoclonus syndrome (OMS--an autoimmune reaction to cancer in which Edward's body creates antibodies that attack his brain) and neuroblastoma (a cancerous tumor) on his left brachial plexus (nerves that control the left arm). He had surgery to remove most of the neuroblastoma, and the rest of the tumor had shriveled and disappeared by the next scan three months later. Edward's OMS has been treated with five-day pulses of Decadron (dexamethasone--a steroid that suppresses his overactive immune system) every three to five weeks; IVIg infusions (intravenous immunoglobulin--a blood product that gives Edward passive immunity as we try to destroy the broken parts of his immune system) every three to five weeks; and one full round (4 infusions back in April 2014) of rituximab to destroy his B cells, which is where the brain-attacking antibodies seem to be made. He is currently in the midst of a second round of rituximab, because he began to regress and a blood test showed he was still making B cells. 

What does this mean in our daily lives? Therapies (PT, OT, speech) take about an hour each. OT and Speech come to our house through the wonderful Early On program here in Michigan. We travel about 45 minutes to Grand Rapids for PT, so we try to schedule it on infusion days as much as possible to avoid extra driving. An infusion means Edward and I are at the Hem/Onc (hematology/oncology) clinic at Helen DeVos Children's Hospital pretty much all day, while Kameron keeps Henry, as siblings are not allowed in clinic. Special time with Daddy sometimes works well, but has been hard lately, because there have been so many infusions that it becomes stressful for Kameron as he tries to get work done and because Henry desperately wants to go "to the hostapital" with Edward and Mama. All he remembers about the hospital are its wonderful play rooms, including the cheerful toy- and book-stocked library on the first floor where we got to wait and play together this past Thursday during Edward's scan. Kameron's mom has come for a few weeks to help us during this extra-busy time, which has been a great blessing in many ways, especially in distracting Henry and helping him feel better about being left at home.

All this has been difficult, of course, but one of the main results of the last seven months' experience has been that our eyes are opened to see how much more suffering is going on around us than we ever realized. In the grand scheme of things we have it easy. Every time I'm in the hospital, I see many, many people with bigger problems than we have. I was sitting in a waiting room with Edward recently and chatted with a woman who has six children (at least some are foster and/or adopted), no less than three of whom are special needs and have schedules similar to Edward's. The child she had with her was much worse off than Edward in all ways that were visible to me. My first thought was, "How can I possibly ever complain?" and my second was, "The Lord must come soon--this earth is just too awful."

Thank you so much for your continual prayers and encouragement. We read every comment, email, note, and text, and we are so grateful for each of them. If you wish you could help and can't figure out what to do, look around your church or neighborhood or friend group and make a meal or two for someone who's been sick or injured or just had a baby or lost one. Take an extra bag of your garden produce or one or two of your home canned jars of tomatoes or applesauce to a neighbor. Pick someone who has a special needs kid, but you don't know very well, because you've just never known what to say to them or how to relate, because their kid seems to be screaming or seizing or making strange motions all the time, and put a bag of fun things together for them--groceries, a few straight-out-of-the-box meals or soup mixes, some dried fruit packages, a special treat, a nice card, a toy, whatever--and just tell them you've been thinking about them. You will make their day! 

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Upcoming Events:
This week - IVIg, PT, rituximab #3, speech therapy, Edward's 2nd birthday (Oct. 2)
Next week - PT, rituximab #4, OT, speech therapy
Beyond - We're looking forward to meeting a bunch of other Michigan/Indiana/Ohio/Illinois families with OMS kids when we get together in Ann Arbor next month! We'll let you know how it goes. It'll be our first time meeting anyone else who has Edward's condition. 

[At Edward's rituximab infusion last week]

[Last week: Wearing a compression suit that helps his stability, and using a walker for the first time with help from his physical therapist Robin]

[A little blurry, but I love this picture--it shows nurse Jess feeding a happy Edward his pre-rituximab meds.]