Monthly Archives: October 2012

Day Two

Radiation day #2 started at the radiation building, and then due to a fever, moved to the outpatient oncology office, and then to the local ER, and then to an inpatient room, and then discharged from the local hospital to the special transport team, and finally, taken “sirens and lights” to Chase’s hospital.

Waiting in the oncology office after radiation

My apologies for the run-on sentence.  It was a run-on day.  Because of the fever, radiation is currently suspended.

Posing with some members of his spectacular transport team …headed for “his hospital”

Stay tuned for Day #3…

Moment by moment.

Day One: A Reflection

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 we will.

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

In The Dawn Once Again

It’s Monday morning and we are in the dawn once again.

Today, Chase begins radiation.

Though I cannot find the words to adequately describe how I feel about this, I know that God has been with us every step of the way and will not leave us now.

Chase, we’ll again see you on the other side.

From the first step on a new path…

Moment by moment.

It’s What’s For Dinner…

Everybody always seems to be posting pictures of what they’re eating, so here’s a picture of what Chase is “eating”…

 

(This is what I need to assemble and attach a 16 hour nutritional IV bag — which he has every night)

Real Talk.

 

An Average Clinic Day

Today, I’m really excited to share with you what our average clinic day looks like!  (yes, it’s picture sharing day here on EFAMILY…)

When we first get to the hospital, we report to the Hematology/Oncology floor for check-in and vitals.

Chase taking his chances with the germs while waiting in the Hem/Onc play area

After this, Chase goes to a clinic room where they draw the labs and he meets with his Oncology team for a dialogue session and a chemo “push” (a short chemo that can be given in a matter of minutes as opposed to his infusions which are given IV over hours/days).  I have no pictures from our time in the clinic room this week, but I can tell you that despite six adults (four of whom were medical staff and two of whom were supposedly responsible parents) in direct intervention capacity, Chase did try and climb off the clinic table by himself and did fall backwards…you know…directly on his back…the area where he was about to get his spinal tap.  [picture me with my head in my hands at this point]  He was 100% fine.  I think he just wanted to give his Onc team a small taste of “Life with Chase”.  [head in my hands again]

From clinic, we procede to surgery for his spinal tap.  They classify the tap as a surgical procedure because he has to be sedated.  Apparently, a 2 1/2 year old boy can’t always lay perfectly still with a large needle in his back for a long time…who knew? [sarcasm implicit]

In pre-op, taking his own temperature

In preparation for his procedure, Chase is given a small sedation to make seperating from us easier (as we can’t go back with him).  This week, as the drug hit his system, he just wanted to “beep” my nose until they wheeled him out.  “Mellow Chase” is fun.  A sedated procedure is what we call his “Nap With the Doctor“, and as he’s wheeled out for his “Nap“, we always tell him that we love him and we’ll see him when he wakes up.  He often tells me to take a nap too (which usually makes me laugh and cry).

Bob on a conference call in the surgical waiting room

When Chase is in his procedure, we go to the waiting room, which reminds me to highlight the above picture.  My incredible husband has worked diligently with his company to allow him to work from the hospital so that he can always be present with us.  This can be hilariously confusing to medical staff meeting with us for the first time — I had an oncologist turn to me during a conference this week and say “But, we didn’t record the session. What session are you talking about?”  One of those moments when I needed to explain that my husband was speaking to someone in Tempe, Arizona and not to the doctor.  Communication hilarity aside, Bob’s professional sacrifice for us is amazing and I wanted to highlight that here.  What a guy.

After Chase’s procedure, he’s taken to post-op and recovery to be monitored for a while.  During his “Nap With the Doctor“, he usually receives chemo in his spine and has maintenance things done -like changing his dressings- that are much easier to do when your patient isn’t going ninja on you. (a hypothetical scenario, of course…)

Chase, attached to all his monitors, sleeping off his anesthesia in recovery (with Bob -still on a conference call- in the background)

Chase -about 30 minutes later- in a different stage of post-op recovery (different room; same hard-working Dad)

FYI:  That chair Bob is sitting in (in this last picture) is really comfortable and Bob always beats me to it.  He beats me to it so regularly that the one week he didn’t come back to post-op recovery with me, Chase woke up and lectured me about not sitting in “Daddy’s chair”.  [thinking about hanging my head in my hands again]

After Chase is recovered enough to be cleared (awake, talking, swallowing, etc), we are discharged!  …and if we’re really lucky, it’s before rush hour traffic!

And then, all that is left is the ride home …

Chase and his vomit bucket resting after a long clinic day

And that’s an average clinic day for us…

Moment by moment.

The heart of man plans his way, but the Lord establishes his steps.  Proverbs 16:9

 

 **A note: In all of these pictures, there is a prominent bruise on Chase’s forehead.  Don’t worry, that’s not from falling off the exam table.  That is what happens when Chase’s platelets are low.  He bumps or even taps against something and his body -in it’s compromised state- cannot bruise or clot properly.  For the record, his head looks much better after his second platelet transfusion on Friday.**

The Cancer And The Cough

I’d like to take a moment and interrupt our continuous cancer coverage for a brief word on … pneumonia!

That’s right, there’s pneumonia in the house.  And actually, even though I said this was a non-cancer interlude, it does indeed have implications.  Aidan (who is such a strong little man about not feeling well) was tagged with a double-lung diagnosis at the beginning of the week and we are so thankful and exited to report that even with this infection in the house, immune-compromised Chase has sailed through without any extended hospital stays!

Sometimes, it takes pneumonia to remind me how blessed I am.

Here they are: The Cancer and The Cough – on a wheelchair at a clinic visit last month (would the responsible adult please step forward?)

 

Thank You For Cancer

As Chase and I were talking this morning he suddenly began to pray: “Dear Jesus,” he said, “Thank you for my cancer! In Your name I pray, Amen!” The “amen” was almost a shout as he turned to me exuberantly and exclaimed “Mom! I prayed for my cancer!”

I almost had to pick myself up off the floor.

His precious joy is something I needed to record here as a picture of “faith like a child“…no strings attached, no analyzing or questioning, no ulterior motives, simply joy and thankfulness in the moment.

But Jesus called them to him, saying, “Let the children come to me, and do not hinder them, for to such belongs the kingdom of God.” Luke 18:16

Moment by moment.

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Three Days And Back

We’re home again!!  …after our shortest hospital stay yet!!  (only three days!)

Thank you for praying!  Chase had a successful central line surgery on Thursday and his Friday and Saturday chemo passed without any excitement (adverse reactions, weird vitals, etc, just the usual “excitement” involved in AT/RT chemo…)

A couple updates on the specifics for which I’d asked prayer:

  • So far, the central line is holding and has not infected!
  • The cancer is still in his spinal fluid, but that we entrust (as always) to the One who made him.

Our next scheduled chemo clinic is Thursday and we have high hopes that Chase’s white blood count will still be high enough that we won’t be admitted at that time.

I will leave you with a small picture of my Saturday hospital experience… Chase, with his track pants and light-up Spiderman shoes, sans shirt, chest wrapped in an ace bandage, stomp-running down a hospital hallway (while trailing a large IV pole) pointing at medical staff and growling “No smiling in the hospital!” …

Never a dull part of our moment by moment … :)

Chase rockin’ his new central line!

Five Years

Five years later…

My Dearest Husband,
As we pledged our lives to one another, we never could have known what was ahead. I know that these first five years are only a small dip into the well of blessing that the Lord has for us. As I write, I am reminded of the words we sang that day:

“Thine own great presence to cheer and to guide; strength for today, and bright hope for tomorrow, blessings all mine, with ten thousand beside.”

In joyful anticipation of growing closer every year…

Love,
Your Wife

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Nuts and Bolts

Thursday morning, from the surgery floor

I just passed my nearly unconscious son into the arms of the medical team. Have I ever mentioned that this is my least favorite part of procedure days? They give Chase a small drug to relieve “separation anxiety” before they take him back to the OR and he immediately relaxes, but I still hate watching them wheel him away from me. I just do.

After almost two weeks, Chase is back in the hospital today. Right now, he is in the OR to get a new central line, remove the picc line in his arm, get a spinal tap, and receive his spinal chemo. After post-op recovery, he will be admitted for about four days of chemo infusions.

Many times, my thoughts and prayers are more general in nature, but today I have a couple specific requests: Please pray that this new central line does not infect (as his first one did) and please pray that the cancer is no longer present in his spinal fluid.

Thank you.

Hoping and believing outside the OR room…

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