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: “TheFace” 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…!)
The moment he realized that somebody left a Reese’s peanut butter cup in the stroller (see the drool? he gets that from his father, I’m sure…)
What a joyous 10 months, our little Karsten Lion! May we be blessed with many, many more!
Chase flaunting both his cool scar and the awesome view
A quick catch up (and by “quick”, I mean “probably not“) …
Chase is home!
Chase leaving the hospital in the wagon
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.
First post-op steps with the nurse
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.
Chase and his “washclaf”
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.
Chase with this siblings, cousins, and pilfered medical supplies yesterday afternoon
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 …
Crabby Day is coming to a close…and we survived!! We have high hopes that tomorrow will be even better.
Today was an exciting and encouraging day. We were able to move out of the PICU and 2-3 hours of continuous EEG monitoring showed NO subclinical seizures!
The swelling is …amazing. I’ve never seen anything like it, but the doctors assure us that he looks great. At this time, his vitals and reflexes are stellar. The boy had something large enough to throw out the first pitch at Wrigley removed from his head, and they’ve assured me that within the next few days, he’ll be up and managing his pain with Tylenol.
If the amazing human body didn’t impress you before, I hope it does now – Fearfully and wonderfully indeed. (Psalm 139)
I’ve been thinking through the lyrics to a favorite song a lot recently. Today was incredibly encouraging and tomorrow may not be, but I think that if I could embody where I mentally and emotionally desire to be, I would live these words:
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
Whatever my God ordains is right
He never will deceive me
He leads me by the proper path
I know He will not leave me
I take content, what He has sent
His hand can turn my griefs away
And patiently I wait His day
Whatever my God ordains is right
Here shall my stand be taken
Though sorrow, or need, or death be mine
Yet I am not forsaken
My Father’s care circles me there
He holds me that I shall not fall
And so to Him I leave it all
Whatever my God ordains is right
Though now this cup in drinking
Bitter it seems to my faint heart
I take it all unshrinking
My God is true, each morn anew
Sweet comfort yet shall fill my heart
And pain and sorrow shall depart
