Developments

Tuesday was our long-awaited appointment with the Oncology department at Randall.  Wednesday was the subsequent appointment with the Oncology Radiology people.

This has been a long week.

After additional testing, Mark's tumor has been more firmly classified as an upper level grade 3 tumor, but this was complicated by the fact that it was heavily damaged during removal. 3 is fairly aggressive, but not super aggressive like a 4.  The reason for setting it at a 3 is that testing on the material put it in the middle of the scale between 2 and 3, but that many (most? all?) of the markers that were measured with it are associated with grade 4 tumors.

Furthermore, since it is impossible to rule out that it may have had some grade 4 material in it, the treatment protocol has shifted back upwards as a precaution.  Mark's treatment will be as if it was a grade 4 tumor.

This is a hard pill to swallow.

The plan is now for six weeks of irradiation and chemo, five days a week.  Then six weeks off for some recovery, followed by six months of maintenance chemo.

This is a hard pill to swallow.

We are learning about what treatment looks like.  Mark will have another surgery tomorrow to implant an IV port, but this is a day surgery where we take him in the morning, and take him home that evening.  This is a subcutaneous IV access device that resides on the chest.  You can google it if you want more info, but in essence it allows easy IV access without having to stick him with a needle each and every time.  When you are looking at six weeks of five days a week chemo...

We were trying to better understand the port, and another kid maybe 7 years old volunteered to show us his.  The huge scar on his head exposed by his chemo baldness told the tale.  He was all smiles though, which was encouraging.  And as always we are reminded that there is a lot of pain and hardship everywhere around all of us, much of it unseen, so always be thinking of those around you and practice frequent random acts of kindness, you never know how you'll change a day, or a life.

Radiation therapy is horrible.  Horrible.  We are told Mark will experience some level of developmental degradation both cognitively and physically due to the radiation exposure.  How much is hard to say.  This is just so hard to process, and I want so hard for some reasonable alternative treatment to be out there that we could have faith in.  We've had lots of feedback from friends on various alternatives, but they are so far all either not really applicable to Mark's situation, or have failed to pass my own credibility researching process.  If you have sent us ideas and are offended by that statement, I just don't have enough gas in the tank to be sorry, so get over it.  We're still your friends and love that you care enough to share, so you'll have to be the bigger person here. Trust me, I am inclined to be open to crazy-sounding ideas sometimes.  Radiation and chemo are horrible, and the last thing I want to do, but there just aren't any options that we feel we can sign on to with confidence.

One bright light, there is a newer technology in radiation treatments that limits what is known as "exit radiation", and thus, limits radiation damage.  However, there is very limited data on improved outcomes for this treatment, because it is new and without a lot of case history, and there aren't very many of them out there yet to build this kind of data.  According to the Radiation Oncology people here, the closest one is in Seattle, and the best group doing this is in Houston, at MD Anderson Cancer Center, part of the University of Texas system.  Our local guy said the dosage is the same so using the newer tech would not diminish its effectiveness, but questioned whether the unknown level of benefit was worth the travel.  We initially agreed, but upon further review have opted to try to go this route.  RCH has sent info on our behalf to MDACC, so we will see how that goes.

If we are accepted at MDACC, Wendi will be traveling with Mark to Houston for a stay of about two months, likely leaving in the next two weeks.  As far as we know, the follow up maintenance chemo will be done here.  What this means is that we are now trying to quickly figure out lodging (Ronald McDonald House is not an automatic option), transportation from lodging to the hospital for six weeks, and how much our insurance will cover.  So far we know that this is out-of-network coverage, so there will be a substantial out of pocket expense, how much I do not yet know.

There are a lot of moving parts, and between all of this and the continuing day-to-day responsibilities, to use a metaphor from Wendi's Dad, it is getting a little harder to keep our BBs in a nice neat little pile when the ground keeps shaking.  And yet, there is much more to come, so we will have to find a way.

This has been a long week.

These are all hard pills to swallow.

Thanks for your continued prayers and words of support.  I'll try to keep this updated when I can.