How good is God?

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.

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.  

Potluck Dinner Party

 A few other parents and I organized a potluck dinner for this evening, and it was about the best thing we could have ever done!  Many parents told me they were looking forward to it all week, and other parents wanted to come but forgot about it, so we are having another potluck tomorrow with leftovers from tonight!  Nearly all of our time and energies as the caregivers is spent taking care of our medically special needs children, and there is little to no time to take care of ourselves.  Since we have to eat on the weekends (the Ronald McDonald House Grill is closed on the weekends), too, and we're all figuring out our own dinner plans anyway, we figured, "why not share the burden, make one dish, and eat from ten??"  This certainly helped make prepping, cooking, and cleaning a breeze (we even found some paper plates!).

The children got to hang out and eat together, and the adults got to finally have some adult conversations (even if it was mostly about the kids!) and we made some new friends and shared some laughs.  Fellowship is the best kind of medicine for everyone. God is in constant community within the God-head (Father, Son, Holy Spirit which makes the God-family), and we are made in His image...we are made to fellowship and relate to others. The potluck (aka "dinner party") gave everyone something to look forward to all week, and it is giving us something to look forward to tomorrow as well!  Praise the Lord!!

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!

What? What? and What?

 What we've been told

• “We know your child is going to die from this.”
• “She has 4 to 9 months left.”
• “There is no cure.”
• “Standard care is radiation and then palliative care until the end.”
• “Your job is to make her as comfortable as possible for as long as possible.”
• “Clinical trials are only in phase 1, or phase 2 at best.”
• “The best way to treat brain tumors is to surgically remove them, but this tumor is inoperable.”

What we know

• God is good.  All the time.
• All good things come from God.
• All bad things come from Satan.
• It's not God's fault.  The world is broken because of the Fall, but God designed the world to be good.
• God works all things together for good for those who love Him.
• God can do the impossible.
• The anointing breaks the bonds of this world.
• God is the same yesterday, today, and forever.

What we do

• We live like today is a gift from God - because it is.
• We have hope for tomorrow and a promise for eternity.
• We continue to make long-term plans for Esther and our family, because although no one is guaranteed tomorrow, that never stopped us from planning and preparing for the future before this.
• We work hard and pray hard - everyday.  We leave the rest up to God.
• "This is the day that the Lord has made.  We will rejoice and be glad in it." - Psalm 118 : 24

Keep the Faith

We met with Esther's radiologist and neuro-oncologists this morning to go over the results of the second MRI from Tuesday.  While they were not the results we were hoping for, they were also not the results we were dreading.  So praise the Lord!  The second MRI from St. Jude's is consistent with the MRI from Omaha Children's Hospital last week - the tumor is not smaller but also not larger (we now have measurements of 7cm x 3.5cm x 3.8cm).  There may also be slightly less inflammation. This is a specific area to pray for now that we know the size - pray for it to start shrinking.

We are not claiming this tumor for Esther.  Esther does not have a tumor - she is fighting a tumor.  And we are fighting for Esther with fasting, anointing, and prayer - and expect to see physical evidence of this spiritual battleground soon.  This tumor needs to go back where it came from - from the devil himself.  It does not belong to Esther.  The devil seeks only to steal, kill, and destroy all of our souls, but Jesus came to give us life and life more abundant than we can even imagine.  Remember to never blame God - it is not His fault....He is perfect and never planned an imperfect world for His creation (we're made in His image after all!).  It is humans' own fault that we brought the curse upon ourselves for not kicking the devil out when we had a chance in the garden...now we have to kick him out of Esther's body...he's being evicted as we speak.

We will keep the faith and remain at peace through it all.  God is in the miracle business, after all, and business is good.  We are so thankful for everyone who is taking care of and looking after our other children back in Omaha, NE while we are here with Esther in Memphis, TN.  God has placed us here for a reason and we're going to "let His light shine before men so that all men will know that we are His disciples."  Parents and children who are at a research hospital are usually there as a last resort and they are hoping for a miracle but afraid of not receiving it for their babies.  We plan to continue smiling, laughing, and bringing the life, hope, and joy of Jesus here where there is so much brokenness.  It is sad to see what an imperfect world can do to children, but God never wanted this for His creation.  God created the perfect world for people who are made in His image, and He has a plan to fix creation again.  The plan started with the birth, life, sacrifice, and resurrection of His Son, Jesus, and will end when Jesus comes back again.  So there is always hope.  Keep loving God and loving people, and seek His peace and presence everyday.

“I try my best”

Esther had her first Occupational Therapy (OT, fine motor) and Physical Therapy (PT, large motor) appointments today. These initial evaluations are to get a baseline of Esther's physical skills currently and before any kind of treatments begin. We have seen Esther's coordination impacted by her left eye turning in, but she is a determined little warrior princess and has already learned to adapt to her current (although not permanent 🙏🏻) situation to remain independent and as helpful as possible. Esther's optimistic motto is "I try my best."  She keeps trying, even when she has to try over and over again, until she accomplishes what someone has asked her to or what she has put her own mind to do.  Esther apologizes ("I'm sorry") to doctors, nurses, and therapists, when she makes a mistake and then says, "I try my best."

 

MRI #2 - Brave little princess

Esther had her second MRI this afternoon- her first one at St. Jude Children's Research Hospital. She was fully sedated due to the fact that the scan is an hour long and she has to remain absolutely still for the MRI to get an accurate scan of her head.