August 18: “Last night, Chase suddenly started shaking (as if he had the chills) and within half an hour, his temperature went from 99.1 to 102.1. It was a scary moment for our family. He was triaged at a local hospital and was released around midnight after an antibiotic since his blood levels were so stable. We were able to come home and sleep for a few hours before both the local hospital and Lurie started calling…Chase’s blood cultures had grown a bacteria and quickly. He was admitted to Lurie several hours ago and we are waiting to determine the plan for treatment. Because of this, his port surgery (scheduled for tomorrow morning) will probably have to wait. We are thankful to be here and we know this is exactly where we are supposed to be and Chase is overall in a pretty cheerful mood, but we are all experiencing a certain level of “burnout” from all the back and forth and Bob and I are very concerned about all the infections and what role, as his caregivers, we might be playing in them. Praying for wisdom all around.”
What do you do in the ER at 9:45pm? Why, play paper airplanes, of course…
This particular fever and admission were especially difficult as we were still at home and with the other kids when the worst of it really hit him. Chase has never been that bad at home before and they were very afraid. For them, the last time they witnessed Chase shaking, it was a seizure and it changed their lives forever. We were able to talk about it with them and cry a little too. That’s one of the reasons Bob took the above picture – we needed them to see Chase after his dose of Tylenol and see him sitting up and being Chase again. We didn’t want their last memory of that night to be one of him shaking uncontrollably.
On August 21, after days of waiting for negative cultures and many, many discusssions of what could be causing the continued infections, we were able to bring Chase home again on antibiotics.
Uncle Trevor, Grandpa, Mom and Chase all mask-up for a cap change because we’re going home!
At this time, there is no clear reason for his multiple infections, but the constant use of his line (with his IV nutrition) and the exhaustion of his body after a year of chemo are considered to play a big part. Whatever the cause, we were very blessed by a almost a week at home before going back – this time; a planned visit.
On Thursday, August 29, Chase went into the OR for his 8th central line. Eight. During the surgery, the doctors removed the PICC line in his arm and did a spinal tap to check his spinal fluid for cancer cells. After 2+ hours in surgery, we learned that there had been some slight problems with the new port, and the attending surgeon later told us that she had instructed the team to stay in the room – that nobody left until the port was fixed because Chase really needed this line. We were so thankful for her persistence and detail as a lack of resolution would have meant Chase going back into surgery the next morning to repair the damage.
Late Thursday night, Chase and Aunt Carrie celebrate the loss of the PICC and the successful port surgery.
After surgery, Chase was admitted to the hospital for chemo – his first dose since the end of July – the longest chemo break he’s had since radiation ended. He successfully completed the round and as the last hours of August faded into September; began the fighting and healing from the poison with a five hour packed red blood cell transfusion.
And so ended August.
Moment by moment.
“But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and ot be weary; they shall walk and not faint.” Isaiah 40:31
August has been …interesting. I actually find it very hard to define. Chase has been in the hospital more than he’s been out of it and there have been what feel like many complications to an already difficult chemo plan. I’ve had very little time to blog, but I have had moments to post brief Facebook updates from my phone.
August 3: “Its another ‘How many hours were we home?’ day as we made it four hours out of finishing the final dose of chemo for this cycle before Chase spiked a fever. As I write, we are sitting in the ER waiting for lab results and a plan of action. Chase is doing so, so well right now. Despite a ridiculously long week of chemo, he’s being so kind and sweet spirited. That in and of itself is a huge answer to prayer. More updates soon.”
Within a few hours of this post, we were able to come home as Chase’s vitals and labs were stable, but it didn’t last long…
August 4:“Chase managed to stay out of the ER for only about 24 hours this time. We got a call yesterday evening (Saturday) that the blood drawn from Friday night had grown a bacteria. He was finally admitted to the hospital around midnight last night to pursue a course of treatment. In addition to the medicine that runs over two hours of every six, they did a peripheral blood draw (not from his port) to try and determine if the port is the problem – which could mean surgery to remove/replace the port this week. Please pray for Chase and for Bob and I as well. Chase is weak and we are weary.”
August 5: “As of about noon today, the cultures taken in the ER last night had yet to grow anything, so they are keeping Chase tonight to see how things unfold. If a bacteria grows, there is a very strong possibility that he will go through surgery to remove the port. We were exhausted today, but were so blessed through some unexpected visits: Chase’s Aunt Meg, baby Matthew’s family, dear friends from church (who brought prayer and chocolate), and Zeke’s family (another cancer friend), who brought us a wonderful homemade dinner! Being admitted has been discouraging, but we have seen some amazing protections in it…for instance: labs showed that Chase’s hemoglobin was quite low and he received a transfusion overnight. If Chase hadn’t come to the ER, we wouldn’t have had labs until Monday and his hemoglobin would have been very (maybe even dangerously) low. God is good. Please continue to pray…for Chase; also for darling Matthew.”
Pre-op exam
“A consensus has been reached and it looks like Chase is facing surgery in the morning (pending surgical clearance and his ECHO results). For Chase this will be the 7th access surgery and the 15th placement, removal or repair to an access line. Incredibly, he has never purposefully pulled out a line! Slightly overwhelmed by yet another line (as they intend to place a PICC in his arm) and another surgery on this little boy, but Chase just informed me that Grammie, Mommy, Daddy, and Jesus will all be with him and that he will be so brave.”
Saying that we were “slightly overwhelmed” may have been a slight understatement. As we went Chase into surgery, I wept. This was absolutely the right decision to remove the infected port, yet somehow, each time I watch our wide-eyed child being wheeled out and hear the words “Don’t worry. We’ll take good care of him.“, it gets harder, not easier. Regardless of our emotions in the moment, on Tuesday, August 6, Chase went into surgery and the infected port was removed.
August 7:“This boy is a force to be reckoned with! He has been up and very active this morning despite post-surgery soreness, one hand bound in an IV, very low counts, and exhaustion. I wish I had a picture of Chase, wrapped in his tiger surgery gown, peddling a big wheel tricycle (me pushing the IV pole behind him) bursting through a circle of doctors on rounds and yelling: “Gentlemen, start your engines!!” As of right now, the IV needs to stay in his hand for at least another day while he continues antibiotics and hopefully recovers from chemo. As early as tomorrow afternoon or sometime Friday, he may go back into surgery to place a PICC line in his arm – which would allow us to go home while he more fully recovers. One of the hardest moments this morning was his lab draw. Without a port or central line, they had to stick him with a needle. This will happen again tomorrow and every other time they need blood until he has another PICC or port. A necessary evil, but so painful to watch. He is being so brave and Bob and I watch him growing and maturing in so many ways around all these circumstances.”
This is what Chase’s lab draw looks like without a central line. For many kids, blood has to be drawn every day and for some, many times a day. This is why we love central lines.
During the few days without a central line, Chase couldn’t have his regular nutrition and we could see him becoming increasingly gaunt. This was hard to watch, but the doctors did everything they could to “boost” him and Chase continued to be so sweet, despite rough days and nights.
Smiling despite the surgery and weariness
On Friday, August 9, Chase was taken into surgery again for a PICC line. He was thrilled to be losing the IV in his hand, but scared to be going for another “nap”. I wished in those moments that I could just tear him out of his bed and carry him far away from all the pain and sadness, but again, felt peace in the moment that we were indeed doing the right thing for him and were so thankful for our friend Jen being in the operating room with him.
August 10: “We first met Jen through mutual friends after Chase’s initial surgery. She has become an incredibly special person to us – often caring for Chase through some of his hardest days/procedures. We were so thankful to be with her yesterday! Chase was very sad about going back under anesthesia, but informed me (with tears in his eyes): ‘Mom, do not worry for me, because I will be so brave, okay?’ There are no words to describe the heart of this child. Blessed by him at every turn. Thank you all for your continued prayer. A PICC line was successfully placed and after several hours of post-procedure observation, we were able to come home! #nomoreneedles“
Chase with surgical nurse Jen in pre-op for his second line procedure in a week.
After surgery, we had a few days off from the hospital. Chase’s labs remained stable, but Bob and I asked for a one week extension on chemo for a variety of reasons, not the least of which was that Chase just didn’t seem as physically recovered as he should be despite his good lab numbers…
Moment by moment.
[Watch for part II of our August blog coming later this week…]
A slight introduction: I thought about calling this blog “What’s Next?“. I also thought about calling this blog “Hey! The Light At the End Of the Tunnel Isn’t A Freight Train!” I ultimately settled on “The State Of Chase,” as we look to cover both the present and the future in this post. If you have any questions, please don’t hesitate to ask! Message us, or post questions in the comments – we are always happy to answer.
A year ago this month, we knew so little of malignant spread, the low percentage of survivors and the collateral damages of surgeries, radiation and the cancer itself. Now, we are a year older and wiser (I hope) in this cancer path. We know where we’ve been, but where are we going? Where is Chase now in his treatment plan, and what is still ahead for him? This subject is a mixture of speculation and fact, and will likely come out looking like Jell-O I tried to nail to a wall (i.e. there is still much we don’t know, but here are a few things we’re reasonably sure are ahead for him)…
Chase is well over halfway done with his 54-week protocol. He has about 3 chemo cycles left. Each chemo cycle is approximately 3 weeks apart, but the ability to start the next cycle is dependent on a Chase’s recovery from the previous cycle… hence, our one-year protocol* is likely to last about a year-and-a-half. Our highly-uneducated guess is that, should Chase stay on schedule, he will finish towards the end of the fall, hopefully by Thanksgiving**. What a great day that will be!
*protocol: the fancy word they use for a specific chemo schedule of treatment (which drugs the patient takes on x-numbered weeks for x-numbered months/years)
**I cringe over putting a potential end date in writing because it’s a lot like posting when a baby is due. There is such a small chance things will actually happen on/by that exact date. So please, please don’t quote me as fact on this!
It will most likely take some weeks (if not months) for his immune system to recover to the point where he can sustainably feed himself (instead of the 14-hour IV nutrition bag he currently gets every day). This is the unknown bit: how long will it take his body to recover from over a year of aggressive cancer-killing? We have no idea, but we can tell from small things we observe even now that this will not happen overnight. I do know that he will need to undergo speech therapy, occupational therapy and physical therapy. He will also need to keep up with his ENT regarding his hearing (or lack thereof) with the possibility of hearing aids, and he will also begin working with endocrinologists (to deal with some other effects of treatment). He will continue to have full brain and spine MRIs every three months, keeping up with his neuro-oncology team, have yearly ECHOs to check his heart, and some other minor things that will have him visiting the hospital. As I recite this list, my idea of “back to normal” grows more dim and more silly all the time. And over all of this is the shadow…
The shadow of relapse. What if the cancer comes back?
ATRT is vicious and is known to come back, and even if, by a miracle, his ATRT doesn’t relapse, Chase is still at higher risk for secondary cancers because of his treatment. The tasks and appointments are endless, and the possibilities are choking.
Why pursue or continue in this treatment when it’s so harsh? Because Bob and I have complete peace in following our doctors’ recommendations for Chase in this. Because, with a cancer where survival is often measured in days and months, Chase has been here a full year. Because of his current state.
So, what is Chase’s state?
The truth is that in this moment, he is great. He’s a statistic-defying, bald miracle who (as I mentioned at the beginning) is sleeping soundly in the other room. This is why I sign every post “moment by moment“–because the cancer journey is a path riddled with crippling “what-ifs” and the worst-case scenario is often the norm. Tomorrow, and the day after, and the next treatment, and the next round will come in their own time, but in this moment, the state of Chase is a state of grace in which he informs me: “Mom! Everything is under control!” It’s a state in which he screams over blood draws one minute, and teases with residents on rounds in the next. It’s a state in which he sees doctors almost every week, but spends the large part of his clinic time running up and down the clinic hall flirting with nurses. It’s a state in which he informed me on the way into surgery that I should not be worried for him because he will be brave.
Chase amazes us at every turn, and in this moment, God has ordained joyous (yes, I said it was filled with joy) life for him. So we will prayerfully take these other things in stride as they come to us, all the while begging God for the continued perspective that this is just a season of life, but our true joy and is found in Him who promised that one day none of this cancer pain will exist ever again.
Moment by moment.
“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. And he who was seated on the throne said ‘Behold, I am making all things new.’ Also he said, ‘Write this down, for these words are trustworthy and true.” Revelations 21:4-5
Chase with surgical nurse Jen in pre-op for his second line procedure in a week.
“Dad, Chasey is crying in his bed and he won’t stop moving.”
With these words of a frightened child a year ago came the unheard sound of life forever changed. A season of watchful anxiety with no answers silently became a parent’s worst nightmare as we were thrown into a path on which there is no escape, no turning back, and no foreseeable end in sight.
The path is dim and lined with shadows: of lost dreams and old lives, of malignancy and pain, of a terminal condition always a breath away. And yet, God’s grace and goodness to us is woven into this tapestry of pain in ten thousand reasons for our heart to find.
Truly, there is no better sum for the year than this…
“I stand upon the mount of God with sunlight in my soul; I hear the storms and vales beneath, I hear the thunders role. But I am calm with Thee, my God, beneath these glorious skies; and to the height on which I stand, no storms, no clouds can rise. O, this is life! O this is joy, my God to find Thee so: Thy face to see, Thy voice to hear, and all Thy love to know.”Horatious Bonar
Thank you for walking this first year with us, moment by moment.
[As many of you know, Chase’s favorite song is Matt Redman’s “10,000 Reasons.” I hope this very slight picture of the year blesses you as it does us. Trace the faithfulness and joy with us… God is good.
There is a chemo called Doxorubicin. When Doxorubicin is brought into a hospital room, it arrives covered in a dark, photosensitive bag because the light of day can harm it. When Doxorubicin is introduced to the human body in certain doses and suspensions, it requires a “rescue drug” to be given simultaneously to protect the heart.
Doxorubicin makes parents pray that their children escape with only small damages like hair loss, mouth sores, and nausea.
Because of Doxorubicin, cancer patients have heart tests at least once a year for the rest of their lives.
Its mixture of ruby hue and devastation earn Doxorubicin the fearful title “The Red Devil.”
Do I make it sound like it terrorizes villages on dark nights? It might as well. In fact, it is powerful enough that during Chase’s radiation treatment, he couldn’t have this chemo because it, coupled with radiation, would have been too much for his body.
For Chase, whose heart is, at the moment, in good condition, Doxorubicin has a common, but amazing (to us) effect. He gets very neutropenic (which means that the chemo eats his white cells down to a small and critical number) and it always happens, on a bankable level, on the tenth day after his last chemo cycle started. This is, in fact, so predictable that Bob and I can actually see the fevers coming on, pack our bags and be ready to call his doctors and drive to the hospital, all before we clock the first temperature spike… and it has been this way on every Doxorubicin cycle since August 16th, 2012.
Horrible.
Predictable.
The wretched routine becomes oddly comforting in its familiarity… the night of day #9, he cries out and sleeps badly; the morning of day #10, he lays on the couch, weak and white and his temperature hovers… and then it spikes and we are in the ER by the early afternoon at the very latest. Every time.
Yet, as I should well know by now, the only thing predictable about Chase is that you can’t predict him.
Today is day #11.
No fevers.
As I write this, I’m tamping down the overwhelming urge to stalk him with a thermometer. He usually has fevers right now and I can’t help but feel that there’s a monster of a temp simmering right under the surface of his hairless little forehead just waiting to erupt at any moment and the slightest exertion is sure to turn him febrile and tachycardic.
(By the way, one of my many coping mechanisms is hiding behind medical words… hence, the talk of neutropenia and tachycardia)
As I thought about this all day today (and tried not to think about taking Chase’s temperature), I was struck by several things…
By how much a cancer parent hopes for the best and expects the worst…
By how oddly stressful the breaking of a routine is… even a terrible routine…
By how much I resent not knowing what is going to happen from moment to moment…
As wonderful as it is to be out of the hospital, days with “The Red Devil” and unpredictable days like today remind me once again to pray for grace and take this life… Moment by moment.
“The heart of man plans his way, but The Lord establishes his steps.” Proverbs 16:9
