Cancer Treatment: The Beginnings of a Plan

We’re so sorry to have left everyone hanging for so long. We had hoped to have more definite pieces in place by now, but want to, at least, share the tentative plans we have so far. We would love to have an army praying as we try to finalize things, and we still need many miracles.

This update will be long. I apologize for that, but it’ll take awhile to lay everything out clearly.

It was four weeks ago today that we got confirmation of Scott’s diagnosis of prostate cancer. As I said in an earlier post, it is a bit more advanced and aggressive than we had hoped. Also, there is a 30% chance that the cancer has already spread to tissue outside of the prostate, and one of our biggest challenges is that the exact location of Scott’s cancer makes good treatment options few.

While pretty much any treatment out there would likely carry a high cure rate, almost all of them also carry a very high probability of severe and permanent nerve damage and/or damage to the surrounding healthy tissue, putting it at an increased  risk of more cancer down the road. However, after much research and some phone conversations with experts and people knowledgeable in the world of prostate cancer, we have settled on the treatment that we believe will, by far, provide the greatest chance of full cure (including any cancer that could be lurking in the tissue surrounding the prostate), and provide the least risk of permanent nerve damage. This treatment is called Proton Beam Therapy. Out of 3000 men surveyed after undergoing this treatment, 97% of them stated that they felt they had made the right choice, and 90% of them stated that their quality of life was the same as or better than before treatment. No other treatment options can offer those kinds of results.

Unfortunately, there is a down side to this. There aren’t, yet, any centers in Ohio offering this treatment, and treatments are done daily for one to two months. There is one currently being built only 10 minutes from our home, but it won’t be ready for about another year. We are convinced now, as we look back at symptoms Scott has been fighting with, that we should’ve had this biopsy done at least two years ago, and with the cancer located so close to nerves and the chance that it may have already spread, we can’t wait another year for treatment.

Another down side is that we don’t yet know if insurance will cover this very expensive treatment.

After a number of phone conversations with a leading expert in this field, we have decided on Knoxville as the best location for our treatment. Immediately, though, we were faced with some tough decisions. Some of our children are still new enough that they are in critical places with their bonding, and some are still emotionally “shaky” enough that it could be damaging to them for the family to be split up for even one month — and certainly for two. Scott and I have prayed through this and had many discussions and come to the conclusion that the family will need to walk this cancer treatment journey together. This means that we will need to relocate our whole family — all nineteen at-home kids — for the duration of the treatment. This is huge. It was a big deal when, for the same bonding and adjustment reasons, we took the whole family to Bolivia to complete Colin’s adoption back in 2000. But we only had eight children then. And none of those needed to be catheterized every three hours or had wheelchairs or other equipment. We got a taste of what we’re looking at when we took everyone to Alabama just this past October, so we fully understand what we’re up against both financially and logistically.

Most of those involved at this point believe that Scott’s treatment will be the one-month protocol, but we won’t get confirmation of this until after he completes a couple of visits to Knoxville for some further testing.

So where are we with this right now?

As I mentioned, Scott has been struggling with some symptoms for a couple of years, but he was actually pretty sick through November and early December. His urologist started him on a medication that has greatly helped while we wait for treatment, and he is feeling much better now.

So far, we believe that God has confirmed our direction in multiple ways, and we are just walking through each door as He opens it and trusting Him to either provide all that we will  need, or to change our direction according to His will.

Scott is scheduled for his first consultation visit at Provision Proton Center in Knoxville on February 26. After that visit, the center’s team dedicated to such things will submit all papers to our insurance company and see what happens. If coverage is denied, it is our understanding that this group will launch an appeal on our behalf, but there is absolutely no guarantee that this appeal would change anything.

The  next step will be a pre-treatment visit where an MRI, CT scan, and other preliminary steps will be taken in preparation for beginning treatment. Our goal start date for treatment is April 11. But much of this depends on what happens with the insurance company.

Another team at the center focuses on housing for out of town families. They emphatically  stated that we are the biggest challenge they’ve ever faced. But they also told us that they are touched and honored to be a part of this story, and even excited about seeing how it unfolds. We have already had multiple opportunities to share our faith with everyone along the way.

Our contact for this housing team is Kristin, and she told us right away that finding a big place for our family wouldn’t be a problem because the center is located so close to Gatlinburg where there are many large cabins to be rented for family reunions or whatever. The problem, she said, would be the exorbitant cost for these large cabins. Sure enough, the homes she initially presented us with were $12,000 a month! (Did she not understand the part where we explained that we have no money — as in $0 — for housing at this point?) 😊

Thankfully, though, a couple of days into their search, Kristin connected us with a very sweet couple who owns another home there, only 30 minutes from the treatment center. While not as big as our home, we believe we could certainly make it work for one to two months. This generous couple told us that they could rent it to us for $7000, which is what it cost them per month with their mortgage, utilities, etc. This homeowner named Rhonda went on to say that, if there were any way at all for them to do it, they would offer it to us for free, but that they aren’t in a position financially to be able to do that. This touched our hearts so much.

Later that same day, a gal named Miranda from yet another patient coordination department — this one set up to help find financial aid for families who need it for lodging — wrote to say that she had secured a $2000 grant to be used toward housing expenses for us. That brought the cost of this home down to $5000 for the month. Still impossible, but getting closer.

This next part was more confirmation that we are where God wants us for now:

First of all, Rhonda and her husband’s home is available during (and only during) the dates we would need it if Scott’s treatment started on April 11 and lasted for one month. Although we can’t reserve this home yet because there are still too many hanging pieces, and because we don’t have the money right now, it was interesting to us that this was the only time it was available.

Next, from the very beginning of this cancer journey, we have told the kids that we had no doubts at all that God had already written this part of our story. That He already knows where He wants us to be for this treatment; whose lives He wants to intersect with ours; what kinds of ripples He will create through any of these crossing of others’ paths and where those ripples will lead in the work for His kingdom. So when Rhonda wrote to tell us that she had already been praying about the fact that she feels there is a bigger purpose for her life and asking that this purpose be revealed to her; and when she stated that she believes that we were all supposed to have this connection with each other regardless of whether or not we end up being able to use her home, our hearts thrilled over this evidence that God is directing our path.

We are continually asked about our needs. We still don’t have a clear enough picture of this to present you all with a detailed and specific list, but we hope it won’t be much longer. In general, though:

  • we know that we will have to raise these housing costs
  • that we will have to rent a 15-passenger van because ours couldn’t make the trip
  • we will have to rent a trailer to move everything we will need to live in another state for at least a month.
  • Our mini-van will need work to make it ready for a trip like this, but a gift already arrived this past week from someone who didn’t even know we were considering this treatment path. Another huge encouragement to our hearts, that gift should cover the mini-van repairs, help toward purchasing any bins, etc. needed for packing us up, and maybe even stretch far enough to be used toward van rental.
  • even if insurance does agree to cover any of this, there will still be much not covered by insurance, and we will need to be able to pay for that
  • as we prepare for the move, we are looking for ways to accept offers for practical help like running errands for us; picking up prescriptions for the kids; etc. We don’t have this very well defined yet, as you can see, but we hope to soon.
  • prayer, prayer, and more prayer. As we keep saying, we are facing some impossible challenges. We’ve watched God overcome impossible odds in our life many times (in fact, we wrote a whole book about that very thing) 😊. But He wants us to ask. Please link arms with us and ask God for the things needed to get Scott the treatment for his cancer.

In closing, I’ll briefly fill you in on how the kids are all doing. We’ve had a lot of appointments as we’ve tried to get them all in stable places while they wait until after Scott’s treatment for further treatment or surgeries.

  • Roslyn’s urologist has okay’d waiting until fall for her very major bladder reconstruction surgery. Lilyan and Jaden will both also need this surgery, but their need for it isn’t as pressing as Roslyn’s is.
  • Lilyan’s spine surgeon felt at her appointment last week that we do need to move ahead with her huge spine surgery pretty soon, but also said she’ll be okay to wait until this is behind us.
  • Meghan needs another hand surgery, and this is scheduled for next week. She should be out of her cast before we leave and hopefully have time to heal enough to begin her OT work that can be done on her own while we are in Knoxville.
  • Nathan continues to be in misery much of the time. Some days are better than others, but he is in constant pain. Lately,  he has had a number of really bad days. We just completed the last of his next round of tests, and we will take those results back to Indianapolis to be reviewed by the specialist there with the hope that he can give us a direction. He has theorized that we could be looking at a condition called Exertional Compartment Syndrome. There is much about this condition that seems to fit Nathan’s symptoms. Treating it will require a surgery, and we would certainly love to get this done before we leave for Knoxville, but if we are indeed able to head there in April, this probably won’t be possible. Please keep praying for him. This is so hard. He is weary.
  • Kathryn, who is now eleven, but will never progress much past about a four-year-old, has had such a tough time as her body hasn’t recognized the fact that she will never grow up. We had to have a procedure done for her last week that was very hard for me to accept. You can read about that in my post, Sometimes You Have To Do the Hard Things, if you want to know more. She is pretty much back to normal now, and doing pretty well as we wait to see if this is going to solve the problems she was having.

That’s about it for now. We’ve had a quiet day today, and the kids were able to spend some time playing in the snow. I’ll share a few pictures of that here.

Thank you so much for writing to ask what’s going on, for the kind emails of concern you have sent, for the cards you have mailed to us, for continually asking how you can help, and for loving our family. We have truly been blown away by the number of expressions of love. Thank you from our hearts. We are so blessed.

We’ll try to post more often (which should make the posts shorter) from this point forward.

 

Snow Day 2-15-16 #14

6 thoughts on “Cancer Treatment: The Beginnings of a Plan

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