Battle-Fighting Fast

Esther's surgeries for both biopsy and the port placement were done Monday.  She is doing amazing and the hand of God is all over her remarkably fast recovery.  She slept very well (not perfect) last night and amazingly, too, she and baby Josiah both slept till 7:45am!

Although Daddy Jim had to move to the hotel off-campus late afternoon Saturday, we were able to enjoy some quiet time together beforehand.  We were also able to spend Monday and Tuesday at Le Bonheur's Children's Hospital together, which is where Esther's surgeries were performed.  We are planning to regularly take Sundays "off" from posting and make time and space to hear the Lord's voice more clearly.  We are still seeking direction for Esther's treatment and miracle, both short- and long-term.  We are beginning to see God's plan formulating in small ways.

One way is when we visited the Chapel at the hospital on Monday, and I read several Psalms out loud from the beautiful KJV Bible there.  I told Jim how I wish I had my paper Bible with me, and Jim pointed out a freshly wrapped Bible sitting in the corner by the door I first came in - I didn't even see it sitting there!  So I have a paper Bible now to read over Esther!  Even though this Bible is from the Dollar Tree (I know the Dollar Tree company name on all the labels LOL!), it is worth far more than $1 (or $1.25 I guess these days!) to me and our precious baby Esther.

The second way is in regards to treatment options. Daddy Jim and I are typically “happy-middle” kind of people, and tend to find the best of both "worlds" and blend them together in that just right "sweet spot."  While we are leaning towards the standard six weeks of radiation, and we are looking into clinical trial options Esther may be eligible for, we are also digging deep into natural remedies.  The standard care of treatment for this tumor is somewhat based on the assumption that there are no survivors - so the medical world rarely considers long-term effects or harm when it comes to kids like Esther.  Any one of us may only have 10 seconds, or 10 minutes, or 10 days, or 10 years left to live before the Lord calls us home - does that stop us from making long-term plans??  Of course not!  We choose life and blessings, and we plan for a long full life - for ourselves and for our children.  God wants to give us life and life more abundantly.

So where better to start than God's Word?  There was no "modern" medicine or western medical technologies when the prophets, Jesus, and the first disciples walked the earth.  Yet there were miracles.  And Jesus said we, His disciples, would perform even greater miracles than His.  I kept hearing the Lord whisper to me Monday as Esther was recovering from the surgical procedures about the Daniel fasts and the Esther fast.   Daniel 1 and Daniel 10 both discuss Daniel fasting for two different reasons, and Esther 4 discusses Esther fasting for yet another reason.  I couldn't go to sleep on Monday night till I did my Biblical research.  Daniel 10:4 may not seem that important, but it hit me like a hurricane-force wind: “On April 23*, as I was standing on the bank of the great Tigris River,” - can you guess why??  April 23, 2022 was Elizabeth's graduation day AND the first day we noticed symptoms in Esther - her left eye was getting "stuck" inwards, towards her nose.  I actually read that verse several times before I could believe that specific date was actually in the BIBLE!  God sees the little things and He cares about us all the way down to the itty bitty details.

This is now the third week since diagnosis, and Daniel was also experiencing a spiritual battle - for three weeks!  He fasted those three weeks, and then found out that while he was fasting, the angels had been delayed because they were delayed fighting demons on their way to him.  Daniel's fasting and praying helped to tip the scales in his favor and open the way for the angels to fight off the demons and continue on their God-given mission to speak with him.  It has now been nearly three weeks since Esther’s diagnosis, and Jim and I have been experiencing a similar "all quiet on the front" during this time, in which Esther's treatments and prognosis are being fought over on the spiritual battlefield.  This is why we haven’t heard a clear word from the Lord about this yet. We have heard, however, how we need to join Him in the fight for Esther and her future.  We need to fast again, the Daniel 21-day fast, and we invite everyone, including Esther, to join us in fasting and prayer for her life, her future, and the plans God has for her!  

What does the Daniel 3-week fast look like?? How can we join together with the Spirit to fight this battle in the Lord’s army??  Daniel 10:2-3 describes Daniel’s fast like this: “When this vision came to me, I, Daniel, had been in mourning for three whole weeks. All that time I had eaten no rich food. No meat or wine crossed my lips, and I used no fragrant lotions until those three weeks had passed.”  This description gives a general idea of this battle-fighting fast, although it does not include many details. Unltimately, how we fight in the Lord’s army is up to each individual believer/soldier with the Holy Spirit General.  Three things are clear though - no meat (does that include eggs, etc? I don’t know - consult the Holy Spirit and follow His directions), no rich foods (avoid desserts, treats, self-indulgent foods - again, consult the Holy Spirit), and no self-pampering (fragrant lotions, perfumes, etc. - consult the Holy Spirit again). We have been using frankincense, myrrh and olive oil to anoint Esther, so you may want to use some of those, too, instead of Bath and Body Works, for example. 
Please fight for Esther at least from Thursday, May 19th to Wednesday, June 8th. We will let you know if the battle is still being fought at that time.  Please share any word the Lord gives you during this time of fasting and praying as well.  Thank you for joining hands, hearts and spirits for Esther’s life and for God’s glory!!! 🙏🏻

*10:4 Hebrew On the twenty-fourth day of the first month, of the ancient Hebrew lunar calendar. This date in the book of Daniel can be cross-checked with dates in surviving Persian records and can be related accurately to our modern calendar. This event occurred on April 23, 536 b.c. 

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.

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.