Showing posts with label clinicaltrialSDT201. Show all posts
Showing posts with label clinicaltrialSDT201. Show all posts

Wednesday, December 14, 2022

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  I have been to college five times and I have used five different kinds of bags (because a backpack was outdated, in my mind, when I finally owned a LAPTOP!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.  

Wednesday, November 30, 2022

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.

Wednesday, November 16, 2022

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


Thursday, November 10, 2022

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!!


Wednesday, October 5, 2022

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

Tuesday, October 4, 2022

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

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...