Who Are We Now?

Who are we now?

Who are we now that Esther has left life on earth?

Who are we now that our family is incomplete?

Who are we since Esther's diagnosis?

We are not the same, that's for sure.  We are different, and changed, that's for sure.  We may be older, and wiser, that's probably true.  We are injured, broken, and scarred, that's for sure.  We try to keep the pieces of our broken hearts bound up tight enough to make it through one day at a time ... or an hour at a time ... or maybe just the next five minutes ...

Since Esther's diagnosis, we were different.  There was no going back.  This was the point of no return.  Our family profile changed...and everyone had to adapt and pick up extra responsibilities just to keep going day to day.  Even our 10-month old Josiah at the time was forced to grow up, spending many more hours strapped into a wagon and going from one appointment to another, day after day, than he ever wanted to.  After diagnosis, whether Esther received her miracle of healing on earth, or in Heaven, our family was forever changed.  No matter which fork in the road life took us after Dx Day, we would never be the same family we were the day before.  Esther would never be the same either...  even if she went into remission, she would spend the rest of her time on earth going from childhood cancer survivor clinics to adult cancer survivor clinics for the rest of her days. Even if she had her 89 babies here on earth, they would all need additional appointments and  genetic testing, and would be conscious of the fact that cancer is a reality this side of Heaven very early in life...just like their Mommy Esther.

Since Esther's second diagnosis, we were in denial, and we were forever changed again.... this time with a lot less hope than we had the first Dx Day.  Our faith was shaken.  Our world was upturned again.  How much longer do we have with Esther on this side of Heaven?  How much longer must we wait to be with her again if she goes to Heaven first?  How much longer until we get to see what she gets to see?  And why didn't we have stronger faith the in the MIDDLE of the metastasis diagnosis to talk with Esther about Heaven -  A LOT?!?  When she told us she would meet us in Heaven...we were still in denial ... and we told her we would go to Heaven first because we're older...she would go to Heaven when she was 106 - not just 6!  But she knew, somehow she knew (and we have our own theories about this), and we didn't talk with her about this when we had the chance.  This is one of our biggest regrets.

How do we finish our last 50 years on earth without our Esther??  How will our kids finish their remaining 70-90 years without their Sister Esther??  It isn't forever - but it sure seems like forever!!!  How do we live life on earth longer without Esther than we had with Esther??  We weren't ready to stop fighting for her life on earth.  Were we tired?  Yes!  Were we battle-worn?  Yes!  Were we ready to give up and give in?  NO WAY!!!!  We would have given up sleep, our beds, our plans, our personal dreams, our EVERYTHING to keep Esther alive - and we tried! Ohhh did we try!!  In hindsight, were there things we missed? things we would have done differently? things we would have said NO to doctors for? things we would have done to take even more charge of Esther's medical care??  DEFINITELY YES!  These are some of our other regrets.

But Esther wasn't selfish.  We learned a lot.  Esther wanted to "help other kids with ports."  So how do we continue Esther's fight??  We fight for other kids - our kids, your kids, people we've never met yet's kids...  Jesus loves the little children and we do, too.  And we want to see EVERY child grow up, grow old, and fulfill the special plans and purposes God has for his/her life.  That is Esther's Miracle, Inc.'s vision.  This is our new fight.  This is who we fight for now.  And we will need more soldiers to join the fight soon.

#EsthersMiracle

#Esther73

#Morethan4

#NotRareNotFair

#SavetheChildren

#CareBeforeYouHaveTo

#thisfightaintover

#untileveryoneknowsDIPG

#untileveryoneknowsJesus

#CureDIPG

#itrymybest

#dipgawareness

#DefeatDIPG

#helpkidswithports

#jesuslovesyou

#illmeetyouinheaven

What a Week (and a Year!)

Traveling between Christmas and New Years - what could go wrong?  What could go wrong, you ask?  Ha!

Since Esther’s birthday party at Children’s National Hospital on November 3 (after her MRI on November 2), and the Washington Ballet blessed the whole family with 12 tickets to see The Nutcracker on December 30 (after her next MRI on December 29), the ten Desrosiers have been busy planning and prepping how to go about getting rental cars, flights, and hotels lined up for our holiday trip.  Several foundations were likewise keeping busy to raise funds for the Desrosiers’ travel expenses (thanks to the Noah Brave Foundation for taking the lead on this for us!).  We had travel arrangements finalized with two weeks to spare, right down to the last car seat, stroller, wagon, and a Whole Foods order ready to place for pickup.

Mommy, Daddy, Esther, and 18-month old Josiah had travel arrangements through the clinical trial to fly on the same flights as the rest of the kids, as well as one of the hotel rooms, and the full-size rental van for the whole family. About a week later, when we realized that we had still not received the confirmation email from the trial travel agency, they called saying they needed to confirm some birthdates.  After a few days of playing phone tag, we finally connected, confirmed the birthdates, and waited for the confirmation email.  We received it (yay!) but they had put us on different flights than the rest of the children (and had only reserved a mini van for the 10 of us and all our luggage).  So a little more phone tag, and they were able to get us two mini vans (instead of one) and we were able to get on the same direct flight from OMA to DCA, but the direct flight on the way back from DCA to OMA was full.  Okay…not to worry, we can make this work.

Christmas was wonderful and we had two days left to do laundry, organize all the Christmas gifts, tidy up the house, and pack.  Perfect.

Monday was productive and we were looking forward to packing on Tuesday and leaving on Wednesday morning.

Tuesday morning arrived and we woke up to email notifications cancelling all our flights.  What??

We tried to rebook and we tried other airlines…nope nope nope.  Everything was full or cancelled.

We tried to get a rental car…we could still make it to Esther’s Thursday appointments if we left today, right?  We could just spend the night at a hotel halfway there and still be at our hotel in DC on Wednesday night.

Rental cars (especially vans) were all gone, too, since cancelled flights were obviously affecting other people as well.  Okay, so we might have to just get a smaller vehicle, which would be unfortunate because then only Daddy, Mommy and Esther would be able to go - the family holiday travel plans would be cancelled.  But there weren’t any smaller vehicles or vehicles of any kind available - not in Omaha, Sioux City, Kansas City, Minneapolis, nothing.

So went to bed thinking we’d have to just get to Washington by the weekend, with intentions of rescheduling Esther’s appointments to the next available day, whether that be Saturday or Monday or something else….at least we’d be in DC and available whenever they had an opening on the trial’s MRI machine.  Every day is an adventure on this journey, so we can do this!!  Try your best and let God do the rest, right, Esther??

Wednesday morning came, and Daddy started calling car rental places again, and, whoa! There was one available in a couple of hours!  If we left right away, we could still make it to Esther’s appointments Thursday morning…we’d just have to drive straight there, with only quick restroom, gas, and snack breaks.  It’s an 18-hour drive, so by the time we got the car, packed it up, and left around 9:30am, we arrived at the hospital parking garage at 8:15am Thursday morning.  About 23 hours on the road, over the rivers and through the woods, we made it with an hour to spare!  After sitting in the car and closing our eyes for a bit, we loaded up the wagon at 9:00, checked in with security for our visitor badges, got coffee from the coffee shop, and made it to the radiology receptionist at 9:25 - five minutes early!  Praise the Lord!!

Esther had snacks in the car at 11:00pm, 1:00am, and 3:00am, which was perfect because her MRI with sedation was scheduled at 11:00am (8 hours of fasting).  They use the same MRI machine every time to get the most accurate pictures (to see change over time), and they had someone else on that machine at 11, so it was her turn about 11:45am (when they gave her bubble gum sleeping medicine).  Thankfully, they also place the arm IV, flush her port, and draw her labs while she’s under anesthesia, so she didn’t have to go to another lab appointment after the MRI.

Esther’s biometrics were the most impressive to me right away.  She has been hovering at 36 1/2 pounds (16.5 or 16.6 kg) in weight and 3 feet 8 inches (44 in.) in height for as long as I can remember.  Yesterday, she weighed in at 37.26 pounds (16.9 kg)!  And she measured at 3 feet 11.5 inches (47.5 inches) which is 75th percentile for 6 year olds!!  It didn’t seem significant to anyone else right away, but this 8-week growth spurt in her is significant, if you connect the pieces with the MRI images.

Esther was in recovery about 1:15pm, and Dr. Syed (neurosurgeon who performs the sonodynamic therapy treatment) met us in the recovery room between OR appointments.  The MRI images weren’t loading into the system as quickly as usual, however, because the computer system was having issues (there were some Southwest jokes at this point, but we won’t go there! LOL).  What Dr. Syed could see (a few images had made it online), though, he said looked “very reassuring.”  Praise the Lord!

I had more “scanxiety” this week than before, so yesterday was a real challenge to take each thought captive and wrestle it into obeying and agreeing with God’s Word, because He is always good!  “Scanxiety” is just another attempt from Satan to make us panic and afraid, which is what distracts us from keeping our eyes and minds on God.  One fearful thought can result in paralyzing anxiety, so don’t let a single thought escape prison!  Remember, every time Jesus was tempted, his weapon to combat the temptation was the Word of God - “It is written…”

Around 2:30pm, we made it upstairs to the oncology clinic to meet with Dr. Packer and Dr. Kilburn.  Dr. Packer was able to pull images from the past few months, so we were able to compare yesterday’s scans with November, October, and September.  His words were “impressively better.”  Oh whew, amen, and praise the Lord again!!  While we are going to share pictures of the images again, Dr. Packer is cautiously optimistic about the trial, and wants to remind everyone that no two cases are ever exactly the same - there’s no false advertising here, we just want to share the facts of Esther’s story and testimony, and we pray that this is the cure that the DIPG/DMG community has been waiting so long for.  Remember that the Jews were waiting for the Messiah to come for thousands of years, and Jesus arrived at the end of a 400-year long silent period (God was silent - no prophets or heavenly messages), but God was still working behind the scenes.

I am very grateful that all 3 of Esther’s neuro team at Children’s National Hospital reviews the MRI results with us, because by the time the third doctor goes over them with us, I am actually catching on to what they are saying, and I’m finally able to put it into words that will make sense to the general community.  It’s a teachable moment for myself, and my goal is to pass the test of describing back to the doctors what they are explaining in my own words (usually using an analogy).  In this case, when Dr. Kilburn reviewed the pictures, I was asking her clarifying questions to build on what I was already learning based on Dr. Syed and Dr. Packer’s analysis.  So now the tumor is like an onion, and the SDT is peeling off the layers, and as the layers are dissolving, we are seeing what has been underneath the outer shell and inside the tumor.  The doctors haven’t seen the interior of a DIPG/DMG tumor like this before (only under a microscope), so seeing the inside in tact is a learning experience for them, too.  Usually, by the time a tumor is large enough to be causing symptoms which leads to a diagnosis, the tumor appears solid and either spherical or cylindrical in shape.  As the outer layers are disappearing, the tumor is losing that distinctive solid form, and is going from resembling an elongated plum to a small cluster of grapes.  A plum is quite easy to measure - there is an obvious circumference, diameter, and radius.  A cluster of grapes, while possible to measure, is more challenging to determine where the actual dimensions begin and end.  The more and more the tumor becomes normal in appearance, the harder it is going to become to measure it. (That’s fine by us!  Thank you, Jesus!)

While talking with Dr. Kilburn, the significance of the MRI results along with Esther’s huge leap in biometrics occurred to me.  Tumors are parasites - they feed off the host body.  While the tumor was strong and solid, and unfortunately growing for a time, Esther’s own growth was stalled.  Now that the tumor is slowly losing its momentum, Esther’s body is now able to take back what was feeding the tumor and grow herself!!  A height increase of 3.5 inches in 8 weeks is serious growth!!  This is also why I am such a strong proponent of diet and nutrition, too!  I used to be food conscious and eat healthy and try to get my family to eat healthy, too, but this diagnosis was the last straw and now it’s time to be more serious about it than ever.  I am so grateful for MaxLove Project foundation which is helping Esther along her nutritional journey to battle alongside her on the DIPG/DMG journey.  Esther now has a KetoMojo blood glucose + ketones monitor, and she is also receiving 3x4 nutrigenomics testing to assess her unique nutritional terrain and make adjustments to her diet and nutrition based on her own individual genetics and epigenetics.  I’m so thankful for we get to be a part of this new service that MaxLove Project is rolling out for pediatric cancer families.  God’s timing is perfect and this couldn’t be better timing.  (Esther is also telling us that she now sees “one” of things instead of two - her double-vision from her left eye turning in is healing!)

The MRI report is complete but we don’t have the images with dimensions (the portal holds the written report, but not images, so we can only take pictures of the computer screens when the doctors go over them with us). 

This is a list of the tumor measurements in chronological order:

05/02/2022 - 41 x 31 mm (Omaha Children’s Hospital - diagnosis, started dexamethasone steroids, biopsy and port placement 05/16/2022, weaned off steroids 07/06/2022, last day of standard photon radiation 30 treatments 07/07/2022)

08/12/2022 - 48 x 36 mm (Children’s National Hospital - started dexamethasone steroids)

08/24/2022 - 39 x 32 mm (St. Jude Children’s Research Hospital)

09/01/2022 - 39 x 33 mm (Children’s National Hospital - first SDT treatment right side of tumor 08/31/2022)

10/04/2022 - 36 x 30 mm (Children’s National Hospital - off steroids, 1 month after first treatment, beginning of second SDT treatment left side of tumor)

11/02/2022 - 32 x 27 mm (Children’s National Hospital, 1 month after second treatment)

12/29/2022 - 25 x 17 mm (Children’s National Hospital, 3 months after both treatments)

The fourth ventricle is also more open (which means the tumor is taking up less space and releasing the ventricle to drain fluid like it’s supposed to):

10/04/2022 - 8 mm

11/02/2022 - 10 mm

12/29/2022 - 13 mm

This is a list of Esther’s height in chronological order:

05/08/2022 - 43.4 inches, 110.24 cm (40th percentile) (St. Jude Children’s Research Hospital)

06/06/2022 - 43.1 inches, 109.47 cm (31st percentile) (St. Jude Children’s Research Hospital)

07/06/2022 - 43.1 inches, 109.47 cm (27th percentile - it went down because she was a little older but her height didn’t go up) (St. Jude Children’s Research Hospital)

08/12/2022 - 43.7 inches, 111 cm (Children’s National Hospital)

08/26/2022 - 43.2 inches, 109.73 cm (22nd percentile - it went down because she was a little older but her height didn’t go up) (St. Jude Children’s Research Hospital)

09/01/2022 - 43.7 inches, 111 cm (Children’s National Hospital)

09/27/2022 - 43.5 inches, 110.5 cm (Children’s National Hospital)

10/03/2022 - 44.1 inches, 112 cm (Children’s National Hospital)

11/02/2022 - not recorded

12/29/2022 - 47.5 inches, 120.65 cm (75th percentile) (Children’s National Hospital)

This is a list of Esther’s weight in chronological order:

05/08/2022 - 37.26 pounds, 16.9 kg (18th percentile) (St. Jude Children’s Research Hospital)

06/06/2022 - 37.04 pounds, 16.8 kg (15th percentile) (St. Jude Children’s Research Hospital)

07/06/2022 - 34.39 pounds, 15.6 kg (4th percentile) (St. Jude Children’s Research Hospital)

08/12/2022 - 32.18 pounds, 14.6 kg (Children’s National Hospital)

08/26/2022 - 35.93 pounds, 16.3 kg (eating better since starting dexamethasone steroids) (6th percentile) (St. Jude Children’s Research Hospital)

08/29/2022 - 35.49 pounds, 16.1 kg (Children’s National Hospital)

08/31/2022 - 36.37 pounds, 16.5 kg (Children’s National Hospital)

09/01/2022 - 36.60 pounds, 16.6 kg (Children’s National Hospital)

09/27/2022 - 36.60 pounds, 16.6 kg (Children’s National Hospital)

10/03/2022 - 36.37 pounds, 16.5 kg (Children’s National Hospital)

11/02/2022 - 36.60 pounds, 16.6 kg (Children’s National Hospital)

12/29/2022 - 37.26 pounds, 16.9 kg (Children’s National Hospital)

#Godisinthemiraclebusiness

#sonodynamictherapy

#sdt201

#sonalasense

#childrensnational

#esthersmiracle

#esther73

#dipgawareness

#DIPG

#DipgWarrior

#tumordisappear

#tumorbegone

#InJesusName

#thereisalwayshope

#thereispowerintheblood

(After riding in the car for a solid day and her appointments all day yesterday with The Nutcracker last night - Esther has been sleeping ALL day.  I’m so glad we have the hotel till Sunday as originally planned, so we can all rest up till then if needed, and before driving back to Nebraska.)

On the Homefront

Now that Esther and I have been home for nearly two months, I'm guessing that most people think things have gone back to "normal."  I think I would assume that, too, if I were on the outside looking in, like I used to be with pediatric cancer.  Now that I'm in the trenches, I must admit that my assumptions were quite wrong.

Esther has appointments 3-4 days per week, and averages a special event for her personally, or for other children/families like hers/ours, once a week (usually on a Saturday).  She attends physical therapy, occupational therapy, and speech therapy twice per week, and the chiropractor once per week (trying this out at she was going twice per week - yay for "graduating" to half of that!). Esther's port also needs to be flushed (like an IV) once per month, which is a children's hospital appointment.

When we are home, I am spending a great deal of time in the kitchen and preparing for the next day's schedules.  Since Esther's diet now consists of 99% organic, whole foods, we prepare all her food at home, and pack it to take with us whenever we are out and about (this makes follow up visits in DC and Memphis more challenging but Esther is worth it).  I also spend a lot of time organizing, sorting, and transitioning to a toxic-free home (as much as possible in this synthetic day of age), especially in the kitchen.  I look forward to the day we own our own home large enough to have a green house (even the small zipper-kind with shelves and trays) so we can have our own herbs, berries, flowers, and vegetables year around.  A yard large enough for our own vegetable and flower gardens (there are so many medicinal properties in dandelions, lavender, etc.) would also be an amazing way to take care of my family.

With a large family (8 kids), most people seem to jump to the conclusion that the older kids are around the house enough to help with just about everything.  But the reality is that the older kids become, the more independent they also become, and the less they are around the house to help Mom.  We do have high expectations for them to do as much as they can when they are home to keep earning those older kid privileges, but sometimes we’re all just scraping the bottom of the “spare time” barrel and we crawl to the finish line at the end of the day or the end of the week.  James and Elizabeth are both old enough to have regular jobs, which they both do, as well as volunteer with the kids’ ministry at church every other Sunday morning.  James works part-time at Scooter’s Coffee and Elizabeth works full-time at New Heart Christian School (doing the same job I did last year until Esther’s diagnosis), as well as part-time babysitting, pet sitting, church child care, and other random jobs.  Sometimes we just need an entire day (praise the Lord for snow days!) to catch up on things around the house and on the computer.  Sometimes a snow day isn’t as restful or productive as you might expect (or as much as Mom hopes for!), however, because the kids are usually as busy and energetic as ever (praise the Lord for Esther’s high energy levels that are keeping up with her brothers and sisters, too!), so we “try our best.”  😄

For a general insight to our current daily and weekly schedules and routines, here you go…

Our day usually looks something like this...

5:00am - wake up and get myself ready for the day

6:00am - get kids up for the day, make breakfast

7:00am - eat breakfast

7:25am - clean up, get bags in the car, get coats and shoes on, get kids buckled up

7:40am - leave for appointments (others are leaving for school and work)

8:15am - appointments for Esther and Jordan (he receive speech therapy twice a week, too)

11:00am - back home, put bags away, start lunch

11:30am - eat lunch

12:30pm - naps (I do housework and office work if I can stay awake)

3:00pm - snack

4:00pm - start dinner

5:15pm - eat dinner

6:00pm - baths, chores

7:00pm - get Josiah ready for bed

7:30pm - get Jordan ready for bed

8:00pm - get Esther ready for bed

8:45pm - listen to Joshua read bedtime stories

9:00pm - get myself ready for bed

9:45pm - office work (If I can stay awake)

12:00am - go to bed

And our week usually looks something like this...

Monday - griddle breakfast, physical therapy, occupational therapy, and/or speech therapy, dance class, crockpot dinner, order groceries for pickup on Tuesdays from 3 grocery stores

Tuesday - toaster breakfast, pool physical therapy, pool occupational therapy, pickup groceries from 3 stores, seafood dinner, James’ gym night, New Heart Christian School office work, Esther’s Miracle office wok

Wednesday - skillet breakfast hash, random appointments, random errands, maybe YMCA pool, crockpot dinner, Evelyn’s AWANA night, Emma Grace’s HETRA volunteer night, James’ youth group night, Esther’s Miracle blog

Thursday - griddle breakfast, physical therapy, occupational therapy, and/or speech therapy, chiropractor, stovetop-cooked dinner, James’s gym night, Evelyn’s gym night, New Heart Christian School office work, Esther’s Miracle office work

Friday - baked breakfast (muffins, pastry, etc.), no appointments, random errands, maybe YMCA pool, laundry, menu planning for meals and grocery shopping list, New Heart Christian School office work, Esther’s Miracle office work, James’ drop-in gym night, kids’ movie night

Saturday - special events, random errands, laundry, housework and projects that need to be done for the next week to be successful, make hand soap and hand sanitizer as needed, random dinner, get kids’ church bags and outfits ready, make breakfast casserole to cook overnight, try for a full night’s sleep (at least seven hours)

Sunday - crockpot breakfast casserole, church (if we weren’t out too late with special events on Saturday), nap, craft, grilled dinner, go to bed early (to at least by 9:30pm)

The Story through Bags

Bags...they come in all shapes, sizes, colors, styles, patterns, fabrics, materials.  Bags...they're used by toddlers, kindergarteners, teachers, librarians, soccer moms, dancers, gymnasts, businessmen, college students.  Bags...they're used by the rich, the poor, the homeless, the religious, the nonreligious, the sentimental, the stoic.  Bags...they're found at department stores, resale stores, thrift stores, 5th Avenue.  Bags...insulated, straps, buttons, zippers, magnets, wheels, handles.  Bags...they're the Mary Poppins magical carpet-bag kind, the cute little blinged bags for homecoming dances kind, the black leather all-business kind, the business logo kind, the church-goer kind, the catch-all kind, the I-don't-care-what-kind because I'm running late and need something to stuff some diapers in really quick kind.

Bags.

I've been using them for all time (or at least the portion of time that I could remember anything long-term).  I have always been the organized, detailed, plan-ahead (with a backup plan, too, just in case), and have tried to keep things smooth-sailing since I could tell time (and having meltdowns in kindergarten when I realized my entire day was derailed because I was somehow 5-minutes behind schedule and I should just sit down and cry because I was never going to get back on track!!!!).  I have used bags for keeping crafts systematically organized and maintained (also since Kindergarten when I learned to knit), and then of course for school work, lugging 40 lbs worth of textbooks around to keep my grades on the honors track.  I used bags for marching band, track, Girl Scouts, clubs of various kinds, and more.  I have been to college five times and I have used five different kinds of bags (because a backpack was outdated, in my mind, when I finally owned a LAPTOP! :D).  I had a bag for lunch and snacks, and bags to hold other bags.  

I became a mother at a younger-than-average age and I became even more reliant on bags.  The first diaper bag I ever owned became my backup for my backup plan...and if the kitchen sink were portable, I would have packed that, too!).  I had double or triple of everything because what would happen if the first receiving blanket, or bib, or whatnot became soiled or unsanitary and I couldn't bring the washing machine?!?

Becoming a mother, a teacher, a student, nearly always simultaneously, made bags become my normal, because when were we home, really?  The kids and I were always on the go.  So bags was what we lived from...that and the car.

Since the beginning of Esther's fight against DIPG/DMG in May, I have been through all kinds of bags, trying to survive day-to-day (or better yet, hour-to-hour), and they're how I try to make sense of this new normal and maintain a little bit of control, organization, and autonomy over the situation(s!).  I have used the trial and error system to figure out just the best kind of bag system to make our new life work (sorta) for us.  At St. Jude, we had the wagon kind of bags, and hooks and clips to hold and hang all those bags from to make hospital "road trips" with a baby and a 5-year old under anesthesia every day as bearable as possible.  When traveling back and forth from hospital to hospital or hospital to home, there is another system of bags + suitcases to make airports (and those pesty connecting flights), Uber-ing, driving a rental car, hospital shuttles, and inpatient hospital stays doable.  I have packed and unpacked bags, diaper bags, lunch bags, suitcases, duffle bags, backpacks, dance bags, swim bags, "mom" bags, coolers, wagons, strollers, trunks...more times than I could ever count (I'm sure there's a name for that number but only God knows! LOL). 

Since being home more often than not for the last couple of months finally, I have adjusted, expanded, revised, thrown out, started anew, reorganized, retried, (maybe even cried), over and over again until (I think) I have achieved success in packing what we need for appointment and special event "road trips" on nearly a daily basis.  The current system involves my purse, my "mom" bag with bottle holders, Esther's dance bag, Esther's gym/swim bag, Esther's activity backpack on wheels, Esther's lunch box, my lunch box, and Esther's little backpack with her homemade all-natural soap and hand sanitizer/glasses case/water bottle.  We pack, load, unload, and unpack all these bags every day we go somewhere.  I promise, there is (now) a system to the madness.

I wonder what my story through bags will look like in five, ten, or fifty years from now.  

The worst of the worst? Maybe. A blessing in disguise? Definitely.

Over the last nearly 7 month, because of its prognosis, I have often heard that DIPG/DMG is the worst of the worst.

But over the last 7 months, I have seen worse.

I have seen other children with cancers loose limbs (arm or leg) because of the disease and they will need a wheelchair, walker, prosthetic, or other such supports for the rest of their lives.

I have seen other pediatric cancer patients suffer horrible side effects from their treatments - surgeries, radiation, chemotherapy, or a combination of these.  Children who have allergic reactions, chronic side effects, cachexia, seizures, depression, and more.

I have seen children and their parents tolerate 4-, 6-, even 8-week in-patient hospital stays at a time for complicated procedures such as multiple surgeries, bone marrow transplants, and more.

I have seen families separated for treatments for not 2 or 3 weeks, or even 2 or 3 months, but for 15-, 16-, even 18-month treatment protocols.

And I am not blinded by the fact that I have also seen other DIPG families, too, suffer through some of these same things and more, such as spinal taps, shunt placements, t-cell harvesting, and more.

But since Esther's diagnosis, she has not had to endure chemotherapy, transplants, transfusions, amputations, traditional surgeries, extended hospital stays, and so on.  Thank you, Lord!  We have also had several big blessings in disguise for the Desrosiers family such as our first ever family vacation (Esther's Make A Wish trip to Disney World.  The Desrosiers children finally have a mommy who is able to take care of them more than she is taking care of work.  The Desrosiers are finally eating whole, organic foods and mommy is also able to spend more time researching and shopping for these foods, as well as more time in the kitchen prepping and serving healthy meals.  And, most importantly, on an eternal level, the Desrosiers are much more aware of and driven by the fact that no one is guaranteed tomorrow, so we'd best use the time we have as if we'll be meeting Jesus today.

So in this season of Thanksgiving and Immanuel (God with us) at Christmas, we truly have a great deal to be thankful for.

Remember, happiness comes from what happens to us, but Joy is a choice. God is already in tomorrow.  And God is always good.

Housing - Pediatric-Cancer-Family Style

Let's discuss housing.  I know it's a time of high inflation and such, but this is not the first time inflation has been around (unfortunately).  This is also not the first time that cancer has been around (also, unfortunately).  However, as far as Jim and I can tell from our conversations with other pediatric cancer families and foundations/organizations/nonprofits, there is no assistance for families in regards to housing other than helping with rent/mortgage payments and house cleaning (don't get me wrong - this is a HUGE blessing and we are super grateful recipients of these types of assistance!!). 

What I mean when I refer to "housing" is assistance something similar to Habitat for Humanity (only for pediatric cancer families instead).  For example, what if sarcoma families have a child with an amputation and they need a wheelchair ramp installed for their house?  Or what if there are home repairs that need to be done but the family doesn't have the time or the finances to get the repairs done?  Or what if the family is renting and has a landlord/manager who won't make repairs (or worse, makes the repairs and then, surprise - sends the bill to the family)?  Or what if the house is too small for the family-size?  Or what if the kitchen is too small to prepare the types of meals that their child's new dietary plan requires (storage for appliances, pantry space for ingredients, etc.)?  Or what if there are pests (especially cockroaches) and the landlord won't pay for an exterminator and the family can't afford it?  What if the house is drafty (especially in the winter)?  If the pediatric cancer patient as a cathaport and gets a fever, it is an automatic trip to the ER.  The list of scenarios goes on and on and on...

Our family's housing situation answers "yes" to most of the questions above.  When we moved back to Omaha, NE from Jacksonville, FL in 2020, we were not naive and expected to rent for at least a year before being able to purchase, given the whole covid thing.  However, we are in the third year's lease now, and the housing market is not looking any more promising now than it did three years ago (if anything, it is looking worse).  Our rental is also nearly $1600 for just over 1200 square-feet with 3BR/2B/2car garage...which is what we had when we only had 2, 3, and 4 children.  Now we have 8 kids (total of 10 in the family) with three cars (and they don't fit in the garage because that is also our storage unit) and four children in each little bedroom - about 120 square feet per person in total.  The house is drafty so in the summer and winter, a large portion of our utility bills is literally being sent out the front door.  Our groceries each week barely fit in our fridge, and with the rise in rental costs, it is also a stretch every week to purchase healthy "real" food (vs. junk "fake" food) for our family and Esther's new and improved nutrition plan.  We also have a landlord who doesn't make repairs, the manager hardly responds to our maintenance requests, and the few times a repairmen has arrived, we received the bill (that's a big deterrent to even ask for maintenance).  We have had leaky pipes from repairs being done incorrectly, which have left water stains in ceilings and floors, and there is most likely mold and/or mildew which I don't even want to think about.  We also pay for the exterminator as cockroaches are rampant in our neighborhood.  We only have the space for a love seat as we don't have room for a regular couch/sofa.

What Jim and I have often imagined is a small homestead with acreage and space for our eight children, future grandchildren, and hosting/hospitality opportunities.  We would love to have a dog, a garden (and grow our own fresh produce), and some chickens or ducks, maybe even a goat.  We love our church, Jim loves his job, and the kids and I love our nonprofit exempt (home) school, so we want to stay close enough to the Omaha area to commute, but far enough away to be able to retreat and enjoy God's creation.

So what if EsthersMiracle.org becomes an official 501(c)3 nonprofit organization like NewHeartChristianSchool.org that we already run?  Housing would be of upmost importance to its mission.  It's already of upmost importance to our family and especially important to Esther's long-term care plan.

under the kitchen sink after sink flooded down to the den

water stains where the kitchen sink leaked through

fridge is overflowing and breaking (a blessing, too!)

mini couch/love seat

den living room

dead tree for two years in backyard

broken fence & gate around the backyard

girls' room

boys' room (Joshua and Jordan share a bed)

living room

Blessings

Wow!!  The blessings have been pouring over!  Esther had, let me think, five or six birthday celebrations?  (1) Vala's Pumpkin Patch campfire and barn; (2) Kitten Rescue Carriage Ride and Nebraska Medical Orchestra; (3) UMI Japanese Steak House and Hibachi Grill in Manhattan, KS courtesy of the Wards and Tough2Gether; (4) actual Birthday and Dance class; (5) adopt a real kitten (Princess Kitty); and (6) Children's National Hospital and Washington, DC Ballet; not to mention all the wonderful birthday gifts and packages that you all have sent to her.  Thank you from the bottom of this mommy's heart. <3

So when I said I would try my best to post weekly...yeah, there just wasn't enough time in the last month to do so!!!  But for good reason! <3

Praise the Lord! that Esther's first non-treatment follow-up showed a 17% reduction in the tumor size, and the tumor cells are starting to resemble normal tissue.  Now that Esther's care plan has shorter follow-up visits (although they're still going to be about once a month for a couple more months), and I have, for the most part, gotten the house back in order and some routines reestablished with the seven kids plus Esther's appointments and regular errands and such, I may thankfully have some predictability returning to my days, with enough mental capacity leftover even to put some thoughts into words!  Praise the Lord!!

Clinical Trials - How did we choose?

 How should parents go about making a life-impacting choice for their child who is a childhood cancer warrior?

Think and Pray.  Work hard and Pray harder.

For Jim and me, this choice started with what we knew we did NOT want for Esther (or any of our children if they were in her shoes).

We didn't want: chemotherapy (aka, poison), invasive procedures/surgeries, artificial implants, extensive in-patient hospital stays, long-term prescription drugs, a trial treatment that was just hoping to reduce tumor-size or prevent tumor-growth.

We did want: noninvasive treatment, short or no hospital stays, minimal drugs/prescriptions, and a trial treatment that plans to actually kill the tumor.

SDT-201 sonodynamic therapy clinical trial by SonALAsense has everything we were praying for in a clinical trial for Esther - it even has some bonuses!

Since this trial is being financially covered by grants and sponsors, we have ZERO out-of-pocket costs.  As a family of 10 just making ends meet every month, this is a tremendous answer to prayer.  We have also found our favorite hospital and team of doctors here at Children's National Hospital in Washington, D.C.

Praise the Lord!

#DIPGWarrior

#morethan4

#esthersmiracle

#sonodynamictherapy

#clinicaltrials

#moonshot4kids

#esther73

#clinicaltrialSDT201

#NotRareNotFair

#sonALAsense

#DIPG

#dipgawareness

#childhoodcancer

Sonodynamic Therapy - 2nd treatment - check!

 

Esther's second sonodynamic therapy (SDT-201) procedure went very well at Children's National Hospital yesterday.  She was under anesthesia for the treatment and an MRI immediately following the treatment.  The first therapy, done on 8/31/2022, treated the right side of the tumor in her brain stem.  The right side of the tumor is smaller and the clinical trial team thought it would be safer to try first since this is a brand-new therapy.  The right side received 28 sonifications from the low-intensity frequency ultrasound (LIFU) to activate the ALA drug and create an ROS reaction, and eventually cell death (to only the tumor cells).  The second treatment, done 10/03/2022, was for the left side, which is significantly bigger but praise the Lord has remained stable.  The left side received 54 sonifications yesterday.

A few things we've learned over the past couple of days:

Compassionate Use and Single-Patient Exemptions are not the same thing in Clinical Trials --> Compassionate Use means evidence is building that the treatment is effective and patients who are not officially eligible for the trial could still benefit from the treatment --> Single-Patient Exemptions mean that there is not a compassionate use route available, and all parties involved in the trial (hospital, private companies, sponsors, even the FDA) has agreed to let a patient receive treatment even if there is no evidence of effectiveness yet

Sonodynamic Therapy and LIFU are not the same thing -->  the ALA drug + a LIFU device = Sonodynamic Therapy

DIPG/DMG tumor cells actually absorb the ALA drug faster than Glioblastoma (GBM) cells (DIPG/DMG cells either need the drug more or they metabolize faster)

Glioblastoma cells actually kill healthy brain tissue

DIPG/DMG cells do not kill healthy brain tissue - the tumor cells create interference with normal brain activity, but the normal tissue remains intact and unharmed - making the symptoms of DIPG/DMG completely reversible.  As the tumor cells die, regular brain function returns - other parts of the brain do not have to compensate for any lost tissue.  This means that DIPG/DMG tumors are actually less harmful than Glioblastoma tumors....except for the location in the brain (since DIPG/DMG is in the brain stem which controls all vital signs), which is why researchers have avoided treating DIPG/DMG...until now...

#esthersmiracle

#esther73

#sonodynamictherapy

#sonALAsense

#clinicaltrialSDT201

#childhoodcancer

#morethan4

#NotRareNotFair

#DIPGWarrior

#dipgawareness

#DIPG

#clinicaltrials

#moonshot4kids

Sneak Preview

Okay okay okay… I know it has been quite some time since I posted here…not because I haven’t wanted to or haven’t had anything to share, though. It’s just that 24 hours a day was barely cutting it before all this happened, and now 24 hours a day doesn’t even come close.

Thank the Lord that Jim does so well at posting on Facebook nearly every single day for our baby lady. We’ve come to joke (but also, seriously) that Jim is the PR guy in the family (Public Relations, reaching out to and communicating with the community at large), primarily through social media and most of that being through Facebook posts and Messenger.  I, on the other side of the scale, am the HR gal, and I handle internal affairs and make sure our individual team members are taken care of - Esther, of course, getting nearly all of that attention and energy on this quest.

While everyday is an adventure of its own accord, the journey as a whole is a quest. And a quest that all parents who have climbed this mountain have in common. This quest is the end of DIPG/DMG, and beyond that, all pediatric brain tumors, and beyond that, all pediatric cancers at large.

Here’s a sneak peak at some of the thoughts that have been stirring in my mind, which I want to give space and place to, each individually, as we continue on this quest. 

• Housing - assistance for families beyond just paying partial rent/mortgage bills
• Nutrition - resetting all anatomical and physiological systems for both the short-term and long-term 
• Prevention and Detection - there’s been a few mentions in the last week at CureFest about improving pediatric cancer outcomes through prevention, detection, and treatment…then all anyone actually talks about is treatment 🫤

Yes, I am a logical, academic, and solution-focused individual. Stick with me on this because I pray that somehow God is going to make it worth it for Esther and her people. 🙏🏻🎗💕

Family Reunites!

Esther, Josiah, and Mommy Julie are back in Omaha with the rest of the family!  Whew!

We arrived around 5:30pm and the kids were so helpful with unloading the car and waiting patiently to open their Sibling Star gift bags until we were able to have a little breakfast for dinner (thank you, Daddy!) and still managed to get everyone a bath and to bed at a decent hour.  Esther and Jordan fell asleep in Mommy and Daddy's bed while Mommy read their nightly bedtime story and reading their own books.

Here's the Bible verse that stood out tonight.

25 I know that my redeemer lives.

In the end he will stand on the earth.

26Though my skin will be destroyed,

in my body I’ll see God.

27I myself will see him with my own eyes.

I’ll see him, and he won’t be a stranger to me.

How my heart longs for that day!

Wacky Wednesday 2

Esther slept late (late as late can be for 7am appointments 😆) and went from bed straight to the wagon.  I remembered a change of clothes for her (which she didn't use) and forgot her shoes (which she needed for a full day of appointments).  I texted, Katie, another mom from the RMH to see if she was still at the house and could grab a pair for Esther.  Katie messaged back and said that no one was at the front desk to let her into our room, but then nevermind, someone showed up and he was letting her in (praise God!).  Katie took the shoes to radiology oncology which is where both of our girls receive treatment every morning.  However, today went to diagnostic imaging for recovery instead of staying in the radiology oncology recovery room.  After Esther, Josiah and I left DI recovery, we went downstairs to get Esther's shoes from radiology oncology.  But like two ships passing each other in the night, the receptionist from downstairs brought Esther's shoes upstairs to DI for us.  So we went back to the DI recovery room, only they didn't have them...  While they made a couple of phone calls to find out exactly where the shoes went, the kids and I took a quick restroom break.  When we returned, the DI nurse told us they were at the DI front desk.  We finally got Esther's shoes!

Our last appointment was very important - we had been waiting a couple of weeks to see the endocrinologist to figure out how to wean Esther off the last of the steroid that she started when she was diagnosed by Omaha Children's.  It was scheduled for an hour and a half and ended up taking three and a half hours.  After reviewing family history, Esther's medical history and current status, and this morning's lab results, the doctor thought it best to run a stimulation stress test to make sure Esther was completely clear to stop the steroid.  This requires four blood draws - one before the test begins, another at 20 and 30 minutes, and the final one at 60 minutes.  Praise God again because shortly after we left the clinic, the doctor called and said Esther's lab results passed with "flying colors!"  So no steroids tonight, and they're going to do one final blood draw tomorrow morning to make sure her numbers are still looking good.

It was nearly. a twelve-hour day, but we had good news and Esther is receiving the all-clear to go home from all of her doctors and therapists.  How good is God??  He's the best!

Job 16:18b-21

May God always hear my cry for help!

19Even now my witness is in heaven.

The one who speaks up for me is there.

20My go-between is my friend

as I pour out my tears to God.

21He makes his appeal to God to help me

as a person pleads for a friend.

Job 12:5

 People who have an easy life look down on those who have problems.

They think trouble comes only to those whose feet are slipping.

Job 12:5 (NIrV)

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.