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
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#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.)
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