Category: Chase

It’s been a while since I wrote!

Because of Chase’s second line infection, “the powers that be” decided to hold all chemo until the antibiotic finished, thereby giving Chase his largest break from chemo since March.  Almost four whole weeks in-between cycles!

We were able to do some fun things with him and we also had a new experience: his blood counts dropped significantly after he’d recovered from chemo.  They bumped back to “normal” after a transfusion, but it made us realize that our dream -that he will finish his chemo, grow his hair back, pink his skin up, and never again be in the hospital except for scans- may be slightly…okay, very flawed.  Having his counts drop was just a momentary reiteration that Chase is sick and he’s been through hell and back in treatments and that is not going to go away overnight…and possibly not ever.  God, give us strength to handle that time when we get there.

A comical sidenote from his transfusion:  I am becoming more and more convinced that central line pieces were not designed for active three-year olds.  In typical Chase fashion, he was so active as he was receiving his packed red blood cells that the pressure cap on the end of his line loosened, dousing his shirt, shorts, and the bed in bright red blood.  He saw it and started screaming “Blood! Blood!” which, of course, brought almost every nurse in the infusion center running into his room.  He was completely fine.  In fact, he went on to make friends with a little girl in the playroom who he named “Girl“, and when he was discharged, he went to find her, crossed his ankles, put his hands on his hips and said: “Girl? Girl! I have a problem. I have to go home now, but you will be alright. Okay?”  Just a couple of the many, many moments in which we find ourselves shrugging, smiling, and saying “It’s Chase” when we’re at the hospital.

With his counts finally recovered and antibiotics complete, he restarted chemo on Monday and was in the hospital for three days, in which time, he managed to stay central line issue-free, but felt the need to allocate world-class neuro specialists for things other than cancer…like taking a header out of the hospital bed.  He was deemed “stable” enough to be brought home, but he has a large “squishy” section to his head (he calls it his “squishy baseball“) and we are to call his doctors immediately if there is the slightest change to his condition.  So, we watch, above and beyond, almost bordering on stalking him, and actively resist the urge to bubble wrap him as he attempts to play with his siblings in the backyard.

At this moment, our hope and prayer is to get him through the weekend without needing to run to the ER for any reason.  And as these stories show, we often go from weeping to laughing to feeling overwhelmed and back again…sometimes all three at once, which is why we are taking the days…

Moment by moment.

 

 

As a parent, you know when something is wrong with your child.   It’s a gut instinct. It’s often inexplicable. You just know.  Which is precisely why the ER doctor’s words brought little peace: “Chase’s counts are really good, so we will be able to give him a broad spectrum antibiotic and then you should be on your way.”
Within an hour of that conversation, the prescribed antibiotic touched off the real reason for the fevers and Chase’s temperature rose alarmingly (105.8) while his blood pressure dropped. In this moment, the parental gut had been correct and we went from preparing for discharge to preparing for many more hours in the ER and even the possibility of needing to move him to the ICU.
After almost eight hours on the emergency floor, Chase stabilized in such a way that everyone involved felt comfortable sending him to the Hem/Onc floor (his second home) and bypassing the ICU.  Thankful.

Nine Hours Later…
This morning, the doctor came in to inform us that the blood taken in the ER shows early signs of an infection. At this moment, they are still in the process of testing the bacteria and gathering information, but if this is the case; it will be Chase’s second line infection in as many months. There will be a best case scenario of a couple weeks of antibiotics and a worse case scenario in which the line itself is the issue and may need to be pulled (read: more surgeries and peripheral IVs).  And with all of this comes a certain amount of parental self-doubt… What are we doing wrong? How are we mis-caring for the line in such a way that he lays in a bed, shivering and whimpering while his body fights itself?
Ultimately, in this moment, there are no answers as to what the next day or week holds. We will continue as we started…
With grace upon grace… Moment by moment.

(picture: finally leaving the ER; moving from the transport into his room…all the cords)

My darling mother, who often serves as my “right hand man“, was gone for a whole month recently.  By the way, when I say “who often“, I mean “who constantly“.  It took many, many people to stand in the gap as she was gone and as I was trying (very inadequately) to thank all the gap-standers and stretcher-bearers I found myself flipping back through my calendar and the mountain of discharge papers to put together a list of the 31 days.  A thumbnail sketch of our bigger picture.  I’m posting it because the numbers are real and yet another glimpse of our cancer life.

In the last 31 days…

18 days were spent in the hospital.

There were 2 surgeries/surgical procedures.

There were 4 IVs placed and lost.

There were 10 days of chemo infusions.

There were 3 separate trips to the ER.

There were 7 blood and platelet transfusions.

There were 14 lab appointments, dressing changes, or other doctors’ appointments.

…in addition to multiple oral and IV medication given round the clock, the necessary medical care for a child with a central line/IV nutrition, finishing the year of home schooling, taking care of the house, and daily life with four little kids.

The crazy part of this is that I started counting on May 13th, so this list doesn’t even reflect all of Chase’s central line issues before that date or the multiple transfusions/days in the hospital/labs, etc that have happened since.

This isn’t meant to draw attention to our busy schedule, or indicate that we’re above average in any way – as I mentioned at the beginning: I had amazing amounts of help and cancer or not, everybody’s busy.  I just wanted to share these numbers because they’re real and they’re intense…and in a very small way, they explain why I haven’t blogged as much recently, why we have dark circles under our eyes, and why Chase cries more now when we’re at the hospital.

Throughout the 31 days, I have continued to be greatly comforted by Deuteronomy 33:27:

The eternal God is your dwelling place, and underneath are the everlasting arms.

Those arms are strong enough to carry the cancer numbers when we can’t.

Moment by moment.

We are sitting in the surgery waiting room and I wanted to give a quick update on Chase’s procedure…
We got to clinic early this morning (where we meet with his neuro-oncology team) and were told that in discussing the anesthesia issue further, it would be best to put a new needle in the port before Chase went downstairs for his procedure. They know Chase and knew that his fear of a dressing change/new needle is nothing compared to an anesthesia mask.
I should note that he was able to be without a needle in his chest for close to an hour and he spent that time dominating the clinic floor, running back and forth in his gray camo pants and no shirt, proudly displaying his “no tubie” chest to any and all who would look at it.
In this moment, we are so thankful for a team who sincerely considers Chase’s best interests.
Because he had the needle placed, he was able to have the IV Versed (forgetting medicine) and as I walked alongside his bed to the OR doors, he said “It’s okay, Mom. You can go now. I’m going to take my nap.”

Moment by moment.

[picture: that first moment when the needle came out]