Dear Madeline,
We seemed to hit a sweet spot for just a little while there,
didn’t we? There were actually a few
weeks when everything was going just great.
You starting sitting up and crawling around on your own, and you’re now
flashing a nice little set of teeth and a beautiful smile. Mom and I had waited a long time for a
stretch like that. I guess I got too
caught up in enjoying the time with you that I neglected to write to you about
it.
We didn’t get to enjoy it for very long, though. On May 10th,
just as you were heading into a nice 2-week break from chemotherapy treatments,
we encountered a big problem. That
Tuesday, you were set to receive 2 chemotherapy drugs: the first was the
vincristine that you get every time you’re in the clinic for treatment, and the
second was the doxorubicin that you get only once every several weeks. It was during your doxorubicin treatment that
we encountered the problem. The needle
that fed the IV line into your port somehow slipped out of place, spilling the
doxorubicin into your flesh instead of your central line. The result was a significant burn, and you
sure let everyone in the clinic know about it.
I guess there’s a reason that the “doxo” earned the nickname “Red Devil.”
They stopped the medication right away, and set about trying
to estimate how much of the drug made it into your blood stream versus into the
tissue around your port. In the
meantime, a couple of bags of ice helped keep the swelling down, constricting
nearby blood vessels to staunch the spread of the drug further into your
tissue. To help treat the burn, and, as the doctor put it, “rescue to the
tissue” around your port, we needed to apply a drug solution called DMSO to the
affected area. Oh, and the stench... the DMSO carried one of the most pungent,
garlicky odors I’ve been exposed to in a long, long time. And, as our luck
would have it, you seemed to be allergic it to the DMSO because after a while,
it seemed to be having the opposite effect.
It made your burn seem larger, causing more redness and swelling, not less.
By the following Friday, the burn had become so bad that you
would not let Mom anywhere near your chest to apply the DMSO. She rushed you back down to the clinic, and I
raced to get the next available train from Washington, DC to Baltimore in order
to get to the clinic to meet you there.
A few hours later, you were still unhappy but at least on your way home.
And that last all of about 30 hours.
The next evening, you started running a fever. Once it got beyond 100.4 F, we called the
on-call pediatric oncologist, quickly packed a bag, and were off to the
pediatric ER at Hopkins. Mom and I both knew what you were in for before we
even arrived. A fever like that is a
sure sign of infection, and the only question in our minds was whether your
infection was caused by your chemo-induced immuno-compromised state, or if the
infection was caused by your burn. Turns
out it was the latter.
The doctors drew blood and sent samples down to the labs to
check your counts, and the results came back okay. Meanwhile, your fever was
rising, as was your pain. By the time a
decision was made to admit you, there was no room on the oncology floor and you
were admitted to the 6th floor.
The 6th floor, my dear, I suppose is just fine
for most kids. However, the differences
were apparent immediately. In comparison
to the 8th floor, the room was not cleaned nearly as well, the
nurses were not nearly as familiar with the special needs of cancer patients or
the attending protocols for administering care to them, and the isolation from
your medical team was disconcerting.
Communication between the nursing staffs took forever; it was so bad
that I ended up shuttling between floors in order to get answers and to simply
maintain visibility so that folks would not forget about you.
You ended up staying in the hospital for 10 long days while
the medical team administered an antibiotic regimen to lick your infection. It
was here that the isolation really started to come into play. The first pronouncement of that came when a
P.I.C.C. nurse came by to talk to us about running another central line.
What’s a P.I.C.C. nurse and why was she talking to us about
that before the doctors? Turns out, a
P.I.C.C. is a peripherally inserted central catheter;
it’s a line that they’d run from a blood vessel in your arm to the major blood
vessels near your heart to draw blood and administer the medicine you needed,
whether fluids, antibiotics, chemotherapy or something else. Why a P.I.C.C.?
Well, with the burn and the infection, the doctors had concerns about the
ongoing viability of your port. In short, if the infection had spread to inside
your port it was unlikely that the antibiotics would be able to completely
defeat it. In that case, your port might
need to be surgically replaced. This
might have been nice to hear that from the doctors first, but oh well. After extracting a promise to have you moved
to the 8th floor in a couple of days, you underwent a procedure to
place the P.I.C.C. in your left arm on May 17th. This was not a
major procedure, but because you are so independently-minded at such a young
age, they needed to administer anesthesia to ensure it would go smoothly.
Another illustration of a difference in care? After your
P.I.C.C. was inserted, a phlebotomist came by to stick a needle in you to draw
some blood for lab analysis. This was pointless and uncalled for, we explained,
because you have the secondary central line. You know, you'd think that might be the end of the discussion, yet only after verifications and confirmations and umpteen CYA-related conversations did they back away.
After a few days on the antibiotic, you were still pretty
sick. (Your burn was healing, but the irony there is that it improved after
discontinuing the DMSO.) The discharge coordinator
had been by to counsel us about options in case we wanted to take you home and
finish your treatment there, and the home case nurse came by your room to
demonstrate how we would administer the IV antibiotics through using your
P.I.C.C. By May 19th, we saw
the doctors who are directing your care (not just the ones who are on the
current rotation).
How fortunate we were. They stopped by to see you directly
upon their return from a conference, and we explained how you came to be in the
hospital and how you were reacting to the medicines. It was only after they came through that
anyone bothered to check how much of the medication was in your bloodstream and
whether it was at a safe level. It turns
out that the amount of medicine in your bloodstream was much too high, which is
a rather big deal since that particular medication can be toxic to your liver
and your remaining kidney. The results
of the blood work dashed any thoughts of taking you home early. You clearly
needed to be better monitored. I wish I knew why the other doctors had not
already been looking for this. All the while I was still shuttling between
floors to get answers and to maintain visibility. Upon hearing this news, I
immediately set about getting you transferred from the 6th floor to
the 8th floor, not taking “no” for an answer. We finally got you
moved at about 11 PM on May 20th.
After you were transferred, things seemed to settle down
considerably. What a relief for your mother and I to see nurses we knew, and
in in whom we had great confidence, caring for you again. I’ve tried my hardest to be at
your side throughout your entire stay, but I was forced to return to work the
following Monday and I was heartsick about it. It was a blessing though to have
you home with us again on the next day.
Things have been working out just fine since you’ve been
home. You’re back to your old self, you’re crawling around – really motoring! –
and pulling yourself up on furniture. You’re smiling and babbling up a storm. The P.I.C.C. hasn’t been a major bother. And the doctors are pleased both with your
progress, and with your port. They think
they should be able to start reusing your port soon, and Mom and I are eager to
see the P.I.C.C. go so we can get you back to doing things babies should be
doing without precaution or restriction. Once again, you’ve shown just how
resilient you truly are. God is with you, baby girl. That much is clear.
Love,
Daddy
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