Hanging on to the hem of His garment

Esther is down to four radiation treatments.  She started Week 6 today, and completed day #26.  With Independence Day on Monday, this means she will finish her 30 treatments on Thursday, July 7th.  Most of the families with whom we have been doing life together with for the last six weeks have finished their initial treatments and have gone home, at least for now.  Another little girl arrived on the same day as we did, and will also finish her last treatment on Thursday, so the other mom and I are hanging in there together until we can go home.  We are using the three-day weekend to sort through things and start organizing so we can pack up and reunite with our families.

There are a lot of thoughts, reflections, and realizations that I have had in our nearly two months here in Memphis, and I look forward to the day I can gather these ideas into cohesive sentences and share them with you all. I hope they will encourage and inspire, as well as provide revelation as to just how much Jesus loves you and just how good God is.  

Wacky Wednesday

 Esther started the day with only two appointments - radiation (3-in-1) and the initial eye checkup - scheduled to be done around 11:30.  Our plan was to have lunch at the hospital before heading back to the Ronald McDonald House, getting back around 1:00 for nice, normal, afternoon naps.

Instead, we returned back to the house around 3:30, after going on two wild goose chases.  One - we lost our wagon's canopy on Monday afternoon at our last appointment,.  Two - Esther's skin had a rash that needed to be taken care of before leaving for the day.

After lunch, and up to which point everything was going according to plan, we headed back to the main entrance to use the bathroom and wait for the next shuttle back to the Ronald McDonald House.  While we were using the restroom, Esther reminded me that we didn't ask about the lost wagon canopy yet.  So we went back to Clinic C to see if they had found it.  The receptionist didn't know, so she sent us to the security desk, where they usually keep lost and found items.  The security desk, by the main entrance, was not the main security desk, so we went all the way back towards Clinic C to the main desk.  They did know about the wagon canopy, although it was not locked up where the guard had put it yesterday.  They called Patient Services and found out it was downstairs another level, and thankfully, the lady went down there to retrieve it for us.  After we signed for receiving our missing item, we started heading back to the main entrance, with the plan to call the radiology clinic about the rash on Esther's skin on the way.

I called the nurse Esther had this morning, since she had noticed a little bit of a rash this morning, and asked her where we should go or what we should do to get it looked at.  She said we could go to any clinic and ask to see a nurse without an appointment.  I asked her if one of the charge nurses in radiology, who had accessed Esther's port this week (I can explain that in more depth at another time if you'd like), could look at it, because she was already aware of the rash that had developed over the weekend (and subsided).  She said yes, we could come back to the radiology clinic, so we continued on our way.  When we arrived there, the receptionist said almost everyone was currently in a meeting, and she would call a few people and see what we should do.  The nurse informed her over the phone that we needed to go to Esther's main clinic - Clinic E - and they would take care of it there.

When we arrived at Clinic E, the neuro-oncology clinic, the receptionist was not present, which is okay, because we can always check in at Clinic D around the hallways instead.  When I explained why we were there without an appointment, the Clinic D receptionist called the nurses and asked if Esther could be seen.  The nurse informed the receptionist that we needed to go to the Line Care Clinic (by the main entrance), and they were putting in the referral for us as we headed that way (again!).  When we arrived to the unmarked door there were signs telling us that we needed to wait outside for someone to either call or page us.  We needed to use the restroom again (mind you, it has been over an hour since we finished lunch by now), and thought that would work out nicely while we waited to be called in.

While we're waiting out in the lobby/hallway area, I realized Josiah hadn't even gotten his after-lunch-nursing session, so I took him out of the wagon to let him nurse while we finished waiting.  He nursed and napped for about thirty minutes, which he desperately needed, by which time I was becoming agitated wondering why Esther hadn't been seen yet.  When Josiah was done, and before I even took off the nursing shawl, I popped up and went to let myself in to inquire about Esther's referral.

The two nurses at the Line Care clinic had never gotten the referral, and didn't even know we needed to be seen.  (mind-blowing!)  They asked for Esther's medical record number, so they could call Esther's main clinic and add the referral themselves, while we went back to the hallway to pack up the wagon quickly and head back inside.  It was now 2:45pm.

The nurses worked together, thankfully, to help Esther as quickly as possible and let us finally wrap up this wacky Wednesday.  They took the dressing off her port, cleaned the area around her port (being careful to leave the IV in so as to avoid a second poke), cleaned the iodine-type liquid off, redressed the IV with more gentle adhesives, added loads of nystatin/triamcinolone cream to the entire rash area, put some gauze on the cream loosely to help it stay on the skin, and then gave us some more gauze, cream, blue tape (gentle medical tape), and cleansing pads.  We will have to see about getting more cream as a prescription from Esther's regular Clinic E doctor tomorrow, as they recommended putting cream on twice a day until the port is de-accessed, and then three times a day with good baths on the weekend.  Hopefully, that will help her skin calm down and return to a normal state for accessing the port again next week.  We left the Nurse Line clinic at 3:20, and actually made it on the 3:20 shuttle, which was still in the circle loading up other families.  Praise the Lord we made it back to the RMH around 3:30, and could finally call it a day. Whew!

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.