The shadow has descended again and I’ve found myself unable to write because of it. Three whole months have passed like the snap of a finger and once again, we stand in front of the two doors: the next MRI is in less than 48 hours.
Technically, the shadow of relapse is always with us, but we feel it ever so strongly the week before the MRI. I wasn’t going to write because I’ve had no words -only fears and fighting fears- and I’ve wanted to be silent in my thoughts and prayers until after the results are known. However, today, I was reminded to open my hands. To relinquish again the dread of the unknown to the One who knows.
So, tonight, I finally sit and write. I still fear much and fight the fear, but today, I opened by hands – a thing I haven’t done in too long. I needed this reminder that Chase is not ours to keep. In fact, none of our precious littles are. They are our entrusted treasures and we are their stewards. We’ve gathered them around us in front of the two doors and we wait… with open hands.
Moment by moment.
The earth is the Lord’s, and everything in it, the world, and all who live in it. Psalm 24:1 [NIV]
These last two weeks have seemed a little like a single long day that wouldn’t quit! As parents of a child with cancer, we have been carefully prepared to be ready at a moments’ notice to pack and run…and pack and run again, but this has been extraordinary even for us. When I think through “moment by moment“, I never expect each new moment to be totally different from the last, but that’s exactly what this two-week day seemed to hold.
It all started as we commuted to the hospital for five straight days of all-day chemo infusions [insert comments and mutterings about traffic here] . We were mercifully able to be home on Saturday, but on Sunday, our best layed plans for “normal” and “rest” were blown to smithereens as soon as I heard the words “Come quick! Chase is bleeding!” and realized that one lumen on his central line had torn. …so, back to the hospital we went.
A lumen repair kit…aka: needle salvation
Sidenote: we often tell hospital staff “It’s Chase.”…as in “Yes, we know this rarely ever happens, but….it’sChase.”
Back to the story… in true “It’s Chase” form, Chase’s line tear was in an area for which they had no repair parts, so after hours in the ER and the vascular access team weaving what can only be described as a sterile burrito (comprised of alcohol wipes, gauze and tegaderms) around the line -to protect from the errant bacteria-, we were discharged. Until Tuesday. When we went back in for blood and platelet transfusions and the line repair. We left that same night and managed to stay out until…Wednesday night. A whole 24 hours. At which point, Chase hit his chemo nadir (when the chemo is at it’s strongest point), spiked a fever, and after sitting in the ER until 2:30AM, were re-admitted to the hospital.
We were hoping to go home fever-free sometime on Thursday when the newly repaired central line malfunctioned (see: more blood everywhere) and so we didn’t leave until Friday night. I should also note that we’ve become very close with the vascular access team. On Friday night, the stability of the line was still somewhat in question, but with nobody finding anything decisively wrong, Thursday’s blood experience was chalked up to a freakish incident of nature and we were discharged with the niggling thought that the line would only ever show it’s cards once we left the hospital…and got home…and tried to rest. …which did indeed turn out to be the case.
The malfunctioning repair
On Saturday night, about an hour into Chase’s infusion, I realized his IV fluids were running down the front of his shirt, so after a brief moment of parental freak-out, I calmly put my eyeballs back into their sockets and we went back to the hospital. Triage in the emergency room lasted so long that by the time the doctors came to look at the line, they declared everything dry and in need of testing. After an hour or more of testing, it turned out that the line was leaking, so around our favorite admitting hour (2:30am, for those of you just joining us), we were again given a room with the promise of surgery consults in the morning.
Without a doubt, the worst part of the loss of a central line is the need for peripheral IVs (the kind they stick in your hand or arm). For Chase, that usually means three to five people holding him down and the collapse of at least one vein from his terrifying struggle to escape the needle. If you were questioning why we’d put up with a central line and all it’s drama in the first place, don’t miss this… The reason we put up with and even love the central line is because it saves Chase from needles. Medical staff can draw blood and administer any medication or chemo through this line – without ever touching his body.
Proudly displaying his IV – “You should see the other guys!”
It took four people and two tries, but they finally got an IV in Chase’s hand. And that concludes the events that led to Chase going into surgery on Sunday afternoon and getting a new central line.
Which summarily ended our two-week long day.
You can’t make this stuff up.
Moment by ever-changing moment.
The heart of man plans his ways, but the Lord establishes his steps. Proverbs 16:9
Sleeping peacefully in pre-op moments before he was taken back to the OR
With his backpack and IV bag preparing to leave in the early morning…
One day down, twenty-nine more to go…
I’ve mentioned before how very much I hate separating from Chase before a procedure and today was no exception. I left my unconscious child in a full body mold in the middle of a huge radiation machine, turned my back, and walked away. With this heavy on me, I cried the whole way back down the hall (much to the chagrin of the nurse escorting me, I’m sure…).
Snug on the ride home; sleeping off the anesthesia
This entire radiation decision feels like a step down the path of destruction. The doctors (and we with them) must tear and ravage his body with everything there is in the hope of once and for all eradicating this terrible thing that is greater still than the near deathly salvation they’ll put him through.
And yet…
I thought again today about the words of Psalm 139 and realized, no, this is not a road to destruction, but to perfection!
I thought I had a healthy and perfect baby boy one December afternoon. I still remember the first pink tinge of life effusing his skin as they laid him in my arms. How beautiful he was.
And yet…
My mind cannot fully grasp this, yet my heart cries out that it is true: that December afternoon was but the beginning of a journey to perfection. Chase is only now becoming who his loving Heavenly Father desires him to be!
We don’t know now. But one day wewill.
So we will endure that we may be complete. Lacking in nothing. (James 1:2-4)
Moment by moment.
Rubbing lotion on his head and back to protect against burns
“He who dwells in the shelter of the Most High
Will abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.” — Psalm 91:1-2
Chase went into his surgery this morning at about 7:45, and the surgery went quickly and well. The surgeon, Dr. Alden, was able to remove all of the tumor that we’d seen on the MRI last night.
However, the initial results of the pathology that was sent in during his surgery showed that the tumor is malignant, which means that it’s an aggressive tumor which gets bigger quicker than a benign tumor, and may spread more quickly. Also, Dr. Alden saw several smaller (“spore-like”) tumors in the sub-arachnoid space of the brain.
The sub-arachnoid space of the brain.
Since the pathology report showed that the tumor is malignant, the doctors are also now more concerned about some gray coloring that they’d seen on the MRI on Chase’s spine. They think that the tumor may have spread down into his spinal column.
So, where do we go from here? That’s the big question that’s been on Ellie and my mind.
Well, the next step is the full pathology report. The full report will tell the doctors exactly what kind of tumor it is (there are a bunch of types of malignant tumors), which will tell them how aggressive the tumor is, and what kind of treatment is needed.
What is for certain is that Chase will need to do some kind of chemotherapy for the next four or so months, and then he will probably need to do radiation therapy. This may continue for some time, depending on the type of cancer it is.
This is going to be a long process for Chase. We appreciate all of the prayers for us and for Chase, and all of the phone calls, texts, Facebook messages, and tweets that people have been showering on us. We are so grateful for all of our family and friends that have been so encouraging to us in every way.
