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!!