Even on the tough days

Today was a tough day for Mommy and Daddy.  Esther, however, was the usual role model for pure joy and living life to the fullest!  The hardest part today was seeing Esther get an IV for her anesthesia before the CT and MRI plus radiation-mask mold.  She is five years old - five! - and she is braver than most people older than she.  Parents are supposed to be tough and stand strong for their kids, but then there are things you can't do to help your kids and they have to be strong on their own.  Once the IV "sleepy medicine" got to her, though, she cried one big cry (the sensation in the vein is not pleasant) and then zonked.  One yawn and she was out....our little Sleeping Beauty.  And then I was an emotional mess - I let a few tears escape since Esther was in procedures and I could let my battle face relax for a few minutes.  Daddy Jim was on the phone talking with DIPG Institute while Baby Josiah and I took a mental and emotional break.  But as soldiers in this battle, there's not a lot of time to wallow in sorrow, or pity, or confusion...it's time to get back to work.

Today was also tough because we met with the neuro-surgeon's assistant today (the surgeon was still in surgery) and while it is good news that Esther's biopsy is scheduled for first thing Monday morning (and I mean first thing - we have to be at the hospital at 5:30am!), and they are going to get "bites" of the tumor to test and diagnose, we really really really wish that they could just "bite" the whole thing out!!  Esther really wants to go home, too, but she is so cooperative and understanding when we say that we will go home as soon as we're done taking care of her here.  We do love taking care of her.

Today was also tough because this is the last time Daddy Jim and Mommy Julie can both attend appointments and procedures together for Queen Esther.  Since we're not vaccinated for Covid, we can only be at the hospital together for five days.  Daddy Jim is "moving" to a hotel tomorrow afternoon.  So on Monday morning, I will have to get both kids ready for a 5:15am shuttle van ride over to the hospital, and Daddy Jim will have to walk to the hospital from the hotel to meet us there.  The silver lining is that we can all stay at the hospital with Esther as long as she is admitted, which will be at least 36 hours.  When she is discharged, we'll have to separate again.  Then Daddy Jim flies back to Omaha, NE on Friday morning, so we're praying that the pathology report on the biopsy will be done before he leaves.  Our other children need their parents, too, so it's important for him to return as soon as possible, but it will require Mommy to be an even tougher soldier than she is currently, while also remaining lighthearted and seemingly carefree for her baby girl and baby boy.

Today was also a rough day because as adults, we have lost a great deal of our independence, being on campus with no car and nothing within walking distance.  We are still trying to get super healthy foods for Esther (and ourselves) and the campus/cafeteria food is not particularly healthy, yet we can't do our own grocery shopping or cooking for the time being.  We have a little fridge and a microwave, so we do the best we can, and keep plenty of produce, salads, and protein options available for Esther, and try to steer away from the plethora of "junk" that is so accessible.  And a minor detail with a big emotional strain at the end of the day was being asked to mask Esther in the gift shop (detached from the hospital) while patients are not required or normally asked to mask while they are at the hospital itself.  We left the gift shop without getting the little black journal Esther picked out, but as usual, she was SUPER cooperative, obedient, and understanding.

At least when we made it through the eight-hour day of appointments, procedures, phone calls, and upcoming transitions, we were able to enjoy a little family time, movie, popcorn (organic!), and Esther received three care packages in the mail today!!!  Those were some of the little things that God gives us to find joy and strength even on the hard days.  At least the evening gave us some time to breathe and reflect, and then move forward with planning and preparations.

After the kids have gone to bed tonight, we have also started mapping out the potential treatments (here and around the country), as well as guidelines and deadlines for different trials or possibilities.  The more we learn the more we realize just how much we don't know.  This is really a faith ride because without God, who already knows all things and is in all times, we would have already given up this battle by now - but we can surrender all situations, and especially the tough days, to Him.