March 28, 2014: Here's the plan...

We had an appointment with Edward's HemOnc (hematology/oncology) team Thursday morning. Edward got to show them his regained abilities (sitting up, cruising, smiling), and we got to talk to them about the plan of attack from here on out. Here are the main points...

• About the neuroblastoma: Edward will have a fused MIBG/CT scan every three months for the first year, and every six months for a while thereafter to be sure the cancer is not growing or spreading. He will not have chemotherapy or any other cancer treatment unless the scans show growth. 
• About the OMS (opsoclonus myoclonus syndrome): Edward will have IVIg (intravenous immune globulin) infusions as an outpatient in the HemOnc clinic at approximately three-week intervals until he shows no symptoms, at which point the infusions can be spread out further. If all goes as planned, this may be his only treatment until he can eventually phase it out completely. Dr. Mitchell said we'll take it one month at a time, and tailor his treatment to his responses as we go. Edward won't be on steroids unless the IVIg stops working. He may take a low dose of decadron during and just after each IVIg treatment to ward off painful headaches, which are a common side-effect within the first several days of infusion. Edward's treatment will most likely continue for one to six years, although Dr. Mitchell says she is encouraged by his quick response to his first dose of IVIg, and is hopeful that he won't need as long a course of treatment. 

On Thursday afternoon, we met with Edward's neurologist, who is happy to let HemOnc take the lead on Edward's treatment, but will still be following up with him every few months. 

Also, we've posted a few more videos. Although Edward's improvements are not quite as dramatic as they were initially, that is not unexpected the further he gets from his IVIg treatment. The first video is one showing some tremors as he sits still, but also showcasing his humor and curiosity, which are as important to us as his physical abilities, since OMS can also cause a more sinister outcome that we haven't talked about much (cognitive impairment). The other videos on that day show the boys enjoying our balmy Spring weather. Finally, here is a six-second clip of Edward taking two steps with the help of Henry and Emilie.

If you've been watching the videos, you have no doubt noticed that Henry (3.5yrs) is a very attentive older brother. He has handled this whole thing very well, with only a little extra neediness and jealousy (perfectly normal under the circumstances), and with a lot of trust in God. Since we've been home from the hospital, he will often exclaim how glad he is that Edward is home and that Jesus made him better. He also thanks God for Edward's recovery nearly every evening at worship. Henry comes with us to appointments, plays with Edward all day, and often puts up with less attention from us than he's used to. We have read him some books covering topics like having sick siblings or having to be away from someone you love (when they're in the hospital), and we did quite a bit of debriefing with him after our extended hospital stay. We're so proud of how well he's doing, and we ask that you especially include him in your prayers, and us, as we try to parent both boys in a godly way through all this. 

Upcoming Events:

• April 2 - Regularly scheduled 18-month check-up with pediatrician, Dr. Mikesell
• April 7 - 2nd IVIg infusion
• April 18 - Follow-up appointment with surgeon, Dr. Robertson

Finally, we are once again incredibly grateful for your prayers, cards, gifts, and online messages. We have eaten some delicious things that we did not have to prepare, and we are grateful for the freedom it has given us to care for Edward and to begin to catch up on many things that got dropped by the wayside in all the bustle of the last month. Thank you so much, and Happy Sabbath, everyone!