Posted on January 28, 2018
You've brought Harvey's fundraiser $41K+. Our hearts are filled to the brim with amazement and appreciation for the depth of your giving—thank you!
It's been several months since our last post, and we have a long update. November and December were trying months for our family as Harvey started one of the most aggressive phases of his chemo treatments, spanning 57 days, called Delayed Intensification. Before starting this phase, he had an Echocardiogram to determine the strength of his heart, since one of the chemos (nicknamed the "red devil") can cause heart failure. Harvey's echo results showed he had a strong heart that could withstand the burden this chemo has on the heart.
Day 1 of Delayed Intensification included: a lumbar puncture for chemo in his spine, an oral chemo, and two chemos by IV, one being the "red devil." That night after he received this cocktail of chemos, he was up through the night vomiting, and by morning he was vomiting every 15 minutes throughout the day. This was certainly the most horrific experience Harvey has been through so far. The typical anti-nausea meds weren't strong enough for him, and his response was not a "normal" response. We feared that if he fell asleep, he wouldn't wake up. We've never seen him so sick and weak.
When you watch your child go through this, you can't help but question why chemo is the only option; why we have to use poison (for over 3 years) on a disease-free body to keep it in remission, and create a response that leaves parents wondering if it will take their child's life. There ARE better ways, but since they are within the realm of "alternative" care, children do not have the right to alternative treatments like adults do...treatments that are non-toxic and without side effects. Our prayer is that someday children will have the opportunity to heal their disease without poison, that we will treat their whole being, not just the symptoms.
We had reached a point in Harvey's chemo treatment during Delayed Intensification where we knew his body couldn't tolerate any more, yet he was required to have intense doses week after week. We told our oncologist we had no other option but to decline chemo due to the level of toxicity in Harvey's body. We knew this decision was not putting Harvey in jeopardy: he's been in remission for 5 months, we have been offering a nourishing variety of complementary care at home (nutritious diet, supplements, pulse electromagnetic field therapy, IV vitamin C therapy, infrared sauna, lots of play and rest), and the hand of the God of the universe is over our son.
Our request: Harvey needed his doses to be tailored according to his response. The response: he will continue to receive the doses that are prescribed, but they could layer on more and more meds to mask his side effects (each of those meds also comes with their own list of side effects). We needed to get another opinion and interviewed at UIC in Chicago, who proscribed the same protocol and doses. We didn't expect much different, since the protocol for leukemia is set in stone at every institution around the country. But we did it for Harvey's sake, so that one day we can tell him we did everything we could to make sure he was receiving the best possible treatment.
Our decision to pause treatment and continue our complimentary care at home while we obtained another opinion resulted in us being reported to the Department of Child and Family Services for child abuse/medical neglect. An investigation was started immediately and is still pending. To add legal counsel and a DCFS investigation on top of Harvey's weakened state and weekly chemotherapy brought us to our knees. We've been crying out to God to give us his wisdom and strength, to show us the way, to part the sea that's been before us.
After obtaining another opinion in Chicago, we realized our original institution in Wisconsin was the best in the area for childhood cancer, but our oncologist there wouldn't take Harvey back, despite our tearful plea. We also didn't want to lose custody of Harvey, so we resumed treatment immediately at UIC in Chicago and complied with the oncologists' requirements for chemo, (and to date, he has never missed one prescribed dose of chemo). The long commutes in the car, long waits in waiting rooms, missing regular naps, meals, and days to just play and be a normal kid, really took a toll on Harvey and June. Additionally, with Harvey being so immunocompromised from chemo, these things only further depleted him and increased his risk for developing life-threatening infections.
We assessed how we could best support Harvey's health and well-being, especially with 3 remaining years of chemo, and created a must-have list for Harvey (in no particular order): live in close proximity to a children's hospital, have access to outdoor play and sunshine as much as possible throughout the year, good access to fresh produce, a loving church and community of friends/family, and wellness care (chiropractic, vitamin C therapy, etc.) While our home in Rockford had most of these "must haves," we felt that the Lord was moving us in a different direction.
We contacted Colorado Children's Hospital and spoke with the oncologist who welcomed a transfer of care from Chicago to Colorado. This was the first green light. The second was an invitation to live with our family friends, who have a newly renovated lower level that's fully furnished. And with these open doors, we decided to move back to Lakewood, CO, where Stu and I met, married, had our first home, and welcomed Harvey to the world. It's a place we know well, with a strong community of friends, along with my sister and her family who live here, too.
Because Harvey has weekly chemo that can't be interrupted, we had a short window to make our move. We needed to be close to a children's hospital with Harvey being severely neutropenic, and transferring care from Chicago to Colorado was the best decision, for now and for the future. We only had 5 days to tie up all the loose ends and move across the country, hence the inability to have a proper goodbye with everyone who loved and supported us.
It broke our heart to say goodbye to my parents, who we moved in with shortly after Harvey was diagnosed. Their home became our haven for healing. Our children developed a precious relationship with their Nana and Papa during this time. Before moving in with my parents we lived out on my grandpa's farm, where the kids had endless opportunity to explore and play outdoors. Leaving these two homes, and my parents and grandpa, came with many tears. We will miss them dearly and the endless ways they supported our family. We will also miss our pastor and the community at Maywood Evangelical Free Church who has lavished love, prayer and support on our family.
While these last couple of months have been filled with a spectrum of emotion and obstacles, God has been using every hill and valley to grow us, even in the hard soil of affliction. We have gone through many days that we wish not to repeat, and it has made us more dependent on God. He is deepening our roots. He is forming buds that will bloom and show their beauty in time. And while there may be some who respond in anger over the State being involved in an investigation for "neglect," we ask that you turn to prayer instead. Please pray for our family and also for those overseeing this investigation, both in Illinois and Colorado. We knew our decisions warranted an investigation, and we don't hold it against them. We are grateful that they are there to rescue children who are truly being neglected, and pray that their findings would prove otherwise in this case.
Presently we are happy and well in Colorado and have resumed treatment at Colorado Children's Hospital in Highlands Ranch. It's an amazing facility with an amazing care team to match. We've been at the hospital every day this week, as we crank out the last two weeks of this beastly Delayed Intensification phase. They told us that it's common for kids to need blood transfusions after the chemo infusions he received this week because it takes such a blow on the body. Even though they've prepare us for the possibility of Harvey being hospitalized, we boldly ask the Lord that he would swiftly regenerate his body. So far this week he's only experienced nausea which is a huge answer to prayer, and we ask God's continued grace over the weeks ahead.
Thank you for taking the time to read the details of these last few months and for supporting us with prayer and gifts. All of the donations you have given to Harvey's cause continue to provide the very best nourishment with food and healing therapies such as vitamin C. This journey has given Harvey a unique interest for healthy foods and food prep/cooking. It's incredible taking him into the grocery store and have him be delighted over finding mushrooms and cucumbers, and loading up the cart. We are tickled to see what his future will hold as he influences others on the importance of healthy food and lifestyle choices that lead to a disease-free, vibrant life.