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.