This is our final weekend at St. Jude for Esther's initial treatment. After two months, it's hard to imagine going back home to the other kids! But we're so excited to put our family back together. There are other families who have initial treatments much longer than Esther's, so they are in my prayers now as I have walked in their shoes for a short while. It's ironic, however, because it seems people tend to think that the length of treatment is equivalent to the diagnosis (shorter treatment means milder diagnosis because it was a short/easy "fix" = False). However, we are finding strength in the joy of the Lord, and are eager to reunite, and then have our first family vacation from Make A Wish in August to Disney World. Jim and I have also been researching and making connections for clinical trials, and we have whittled the options down to three (two are very similar at different hospitals, and one is a newer treatment for DIPG).
As this time comes to a close, these are random thoughts that I keep pondering over.
How ironic is it that the Texas elementary school shooting occurred while Esther is at St. Jude? Those parents had no time to prepare, no time to research options, no time to consult with each other or professionals, and their children were with Jesus in an instant. I keep thinking and praising God that although Esther's diagnosis is about as bad as it can get, at least we have the opportunity to fight the devil back.
How ironic is it that every time Esther has a new doctor who sees her eating a snack in recovery after treatment that they all comment on how they "never" or "rarely" see kids eating a "healthy" snack? It almost shocks them. Their jaws drop. How many times have I told our Quality of Life staff that another nurse offered Esther something I didn't pack for her, and of course Esther (being 5) said "yes" to the junk food? How many days have I packed healthy snacks for her in an insulated lunch bag with ice packs so she can avoid the chocolate milk, soda pop, and high carb processed foods? And why don't more parents do that for their kids? And why don't the hospitals provide it? St. Jude really has no excuse since parents are blessed with free food from the cafeteria - so the parents could bring fruit, vegetables, nuts, boiled eggs, etc. from the cafeteria for their kids - or the recovery rooms could have healthy snacks delivered to their departments in lieu of the junk food (I mean, if the junk food is being delivered, why not swap it out for healthy options and make those the Only options for kids so they have at least one healthy snack on the day of treatment/procedure?).
How good is God's timing that we were at St. Jude with three 3-day weekends for Esther's initial treatment? No time is good for something like this, but if we must we must, and God blessed me, especially, with the extra long weekends (three of them!) to better care for Esther, Josiah, and myself during this season.
How good is God's timing that if this were going to happen, it was at the End of the first school year for New Heart Christian School, so that I could up and go with Esther without having to take care of FMLA paperwork or worry about PTO or anything else. NHCS is a flexible, exempt school, so when I had to go be Mommy full-time, I had the freedom and flexibility to do that. Of course, the kids and I all miss NHCS and are looking forward to getting it going again in the fall, but for now - wow, God's timing is always perfect.
How good is God's timing that Jim, Esther, Josiah and I left Omaha for St. Jude just six days before our oldest child turned 18 so there would still be an adult in the house during this time? How good is God's timing that we were still able to celebrate our first child's high school graduation and attend her open house before this diagnosis? How good is God's timing that Esther's diagnosis, a brain tumor, came at the beginning of May, which is brain tumor awareness month? Ironic? I think not.
How good is God that Esther, Josiah and I got the biggest room at the Ronald McDonald house? The RMHC staff didn't know Josiah was coming with Esther and me, and there are also families with three or four people who have regular-sized rooms, so it wasn't planned by the staff - but it was planned by God. Our room has two windows, while the others have one, to give you some sense of the size difference.
How good is God that there were other sisters in Christ who are also first-time medical mommas also living at the Ronald McDonald House at the same time as myself? We became a family while we were here doing life together, and we will continue to be a family even as we separate and go back to our own homes and families. The highs and lows are unlike any other journey one could ever be on, and only someone who has been on this road can truly understand the different world we have now become a part of forever.
How good is the family of God that we could leave six kids back in Omaha and know that they were in good hands? The hands of God is always the safest place to be - not "even" in a storm, but "especially" in a storm. The will of God, the timing of God, and the hands of God are always perfect.
