The life and stories of a cancer ninja
Life is so, so precious. Recently on efamily, we’ve been working through some really heavy things and I just wanted to take a moment to celebrate a lighter event. Our little Karsten Robert Charles, aka: “The Face” hit the grand old age of 10 months! (well, it was a couple days ago and his grand old mother did a little grand old procrastinating, but still…!)
What a joyous 10 months, our little Karsten Lion! May we be blessed with many, many more!
A quick catch up (and by “quick”, I mean “probably not“) …
Well, home after a fashion … We have moved into my parents house for the first week (read: pray for my parents) so that we can have around the clock, one on one care for Chase. Why? Because he’s an active 2 year old boy on steroids, with 40+ stitches in his head, weak muscle coordination, and no center of gravity. Good times.
On that same subject, Chase had his final steroid yesterday…(audible sigh of relief)
We had a wonderful (albeit long) meeting with the oncology team today. Without gushing and going into a lot of cancer jargon, let me just say…we are very glad to be working with them.
We were also informed today that Chase’s kidneys are clear for now. This is the thing with AT/RT: it usually just hits the brain and spinal area (yes, I said “just“), but there is the chance that it can attack the kidneys too…which happens most often in the genetic version of the disease. (yes, I said “genetic“…so yes, our other children could get this). Therefore, as you can imagine, clear kidneys are a huge praise! The tumor will now be flown to Philadelphia where it gets to meet the only person in the world who studies the genetic component of AT/RT.
As soon as Chase gets cleared post-surgery, he will begin a very aggressive eradication process, the name of which sounds like a great title for the newest spy action movie.
Chase is doing so well! His wound had now healed to the “itch” level and it’s driving him nuts. However, in his brain, covering it with a washcloth helps. So we are hearing the phrase “I nee uh washclaf” a hundred times a day and he spends most of his waking (and sleeping) hours with a dry washcloth draped over his cranium.
Dear ones, please know this … As you may read this lighter and even joking tone to some of what I say here: cancer is deadly serious. I am not joking about cancer. Bob and I are finding joy in our son and his rarities on this long (and what will often be dark) journey.
I think this wraps up all the information I’ve been meaning to share with you.
As always, thank you so much for all your love, encouragement and prayers. They mean so much to us.
What do you do when the thing you most feared is suddenly your reality?
Today we got the results of the pathology report, and it doesn’t look good. Chase has an atypical teratoid/rhabdoid tumor (AT/RT), which is a very rare kind of cancer (rare = about 30 new cases per year). Did we really think that Chase was anything other than rare?
The neurosurgeon noticed, on Chase’s original MRI scan, that there was some light-colored shading on his spinal column, which has now been interpreted as the tumor spreading.
It seems like the most likely course of action will be a 51-54 week regiment of chemotherapy and radiation, during which time he will have a treatment every 3 or so weeks in the hospital.
This is hard news to try to process. Am I ready to watch my child go through this? Do I trust that God is sovereign, even over an aggressive malignant tumor? The words (and melody) of a song by Mark Altrogge has been going through my mind today:
Whatever my God ordains is right
In His love I am abiding
I will be still in all He does
And follow where He is guiding
He is my God, though dark my road
He holds me that I shall not fall
And so to Him I leave it all.
Here’s a clip of the song with this verse:
What this looks like, only God knows, but what we do know is that God IS sovereign, and while the tumor is a tragic physical manifestation of the fallenness of mankind, the child is a beautiful manifestation of the image of God, and in this child we have joy.
What a difference two days makes!
Chase is doing unbelievably well. The neurologist laughed incredulously when, after testing Chase’s right hand strength with a high five, Chase said (extended right hand) “Yes, now can you give ME a high five?”
Every moment is a different emotion, one minute up, the next down, but always -much like Saturday’s thunderstorm- strong, inevitable, and a breath-taking display of God’s power.
I turn into a giant ball of stress every time I think of what is yet to come in regards to treatment options and our family life. I feel numb every time I consider this being life-threatening. I feel crazed from dealing with a 2 year old boy on continuous steroids. I wept last night as Chasey lay in his bed and sang the words of one of his favorite songs…”Thou will keep me in perfect peace whose mind is stayed on Thee.” (Isaiah 26:13). And as crazy as it sounds, I laugh. Life with Chase IS comedy. Anyone who regularly reads efamily knows that.
For instance, he loved the Cars movie before he was admitted, but since being admitted, he has obsessed, and he has been cycling between “Cars: Radiator Springs” and “Carstoons with Finn McMissile” almost non stop. The attending neurosurgeon joked that he removed the “Cars” part of the brain, but no dice…both Bob and I have it completely memorized.
Chase also loves to ride the elevator now and every time they wheel his bed into it, he says “To the moon!” or “To infinity and beyond!”
Incidentally, the elevators here have little sound buttons (cars, trucks, trains) and Chase’s grandpa is quite smitten…word reached us that the “door open” button may have been pressed the other day in order to play in the elevator. I’m not naming names … This is probably just a rumor.
We also laugh with Chase about his “baseball head” – with the 40+ neat stitches visible across his cranium.
As I finish typing this, the intercom just announced a “Code Red” on a lower floor and I’m reminded again how moment by moment I need that grace.
I’m so thankful for God’s grace and the joy of laughter along the way…even with a malignant brain tumor.
There is talk of Chase being discharged soon, so stay tuned …
A hospital is not exactly the best place for non-patients to get sleep. We found that Ellie and I were having a hard time getting enough sleep, with Chase being up multiple times every night (and especially worrying that he’ll start scratching his incision in his sleep).
One of the nurses in the PICU told us about the Ronald McDonald House, which has been such a blessing to both of us over the last few days. I don’t know how many times I’ve seen the donation slots at McDonald’s over the years, and never thought about what they do.
Ronald McDonald Houses are all over the country near major hospitals. People that bring their children to a hospital for medical treatment often need a place to stay. It’s their “home away from home.”
I was amazed when I walked into the Ronald McDonald House near Lurie Childrens. It is an amazing place. When the new Children’s Hospital opened up, Ronald McDonald also moved to a new location. They have 60 rooms where families can stay, and it feels like a 5-star hotel. They encourage families to mingle with each other by not having TVs in each room, but they have a common room on each floor where people can be together. There’s also a kitchen where a family can make their own meals together, and a commercial kitchen where volunteer groups come in to prepare meals for the families that are there.
David and the staff and volunteers at RMH have been so loving and caring for us over the last few days. It has been such a blessing. I’ve slept multiple times over there (sometimes just to nap for a few hours), and when I can pry Ellie away from Chase’s room, I’ve sent her there as well.
I know that now that I’ve been the recipient of this wonderful organization, I won’t be able to pass by the little donation slots at McDonald’s without remembering what I’ve been given.