Avalon Update
The good news is, I have nothing but good news to tell you! Try not to fall over from the sheer
shock...
Thursday was Avalon's big clinic appointment. I did, indeed promise good news...but we have
to get through some rough spots before we get there.
This was a "big" day, because Avalon had a spinal tap (lumbar puncture), spinal chemo, and a
Vincristine infusion (IV chemo) on her schedule. In addition, she had a PICC dressing change,
and typical blood work. Again, the PICC line would not draw blood, which meant a finger prick.
All the way around, not a pleasant day for her.
The PICC dressing change was a typical scream fest, as was the finger prick. Face it, having
your finger sliced and squeezed is just never going to be terribly pleasant. Neither is having a
needle stabbed in your back to have spinal fluid removed and chemo put in...there's no way of
sugar coating any of that. So yes, lots of Thursday was utterly miserable for Avalon, but with
cancer - you learn to look at the bigger picture.
First of all, this was the calmest and least upset Avalon's been in the last 4 L.P.'s. From
requiring 3 people just to hold her down...to only crying and requiring Daddy and a nurse, is a
huge improvement. Second, a skin prep that we've been using under her PICC dressing, is
doing its job wonderfully. Her skin is still in fairly good shape, in sharp contrast to what we all
had predicted a few weeks ago. Third, her chest wound is continuing to heal nicely.
Admittedly, it has slowed in progress this past week - but at least the daily dressing changes
are nothing compared to what the daily packing was.
The biggest scare of the day was with Avalon's PICC line. Diane, our nurse practitioner, had
concerns about the viability of using the line for chemo, since we've never been able to draw
blood from it. They decided to try to "clear" the line, by injecting a chemical into it. The
chemical had to sit in there for an hour, before they could try to draw again. Unfortunately for
Avalon - the next draw didn't work either. That failure bought her a ticket to Xray to make sure
the line was positioned properly. Thankfully, the X ray showed the PICC in "pic-ture" (OK, I
couldn't resist...) perfect position.
In fact, the time that elapsed while Nick and Avalon waited for the chemical to sit, to take her to
Xray, then in X ray, then to get the results back...ended up being about 3 hours from entry of
chemical to beginning of chemo. Somehow, in that time, the line finally opened up. One of the
nurses described the following to Nick: Sometimes when a PICC is put in, it can develop a sort
of film over the end. When fluids are pushed into the line, it pushes the film up and the fluid
goes into the blood stream just fine. However, when they attempt to draw blood, it pulls the
film tight against the end of the PICC, blocking blood flow. The chemical they put in the line
was to break down the film. In Avalon's case, it would appear that the one hour wait just wasn't
long enough. Alls well that ends well...the PICC finally draws blood, which means (hopefully)
the end of finger sticks. Add this to the list of positives for the day.
The Vincristine infusion went flawlessly. Of course, she's against food again at the moment,
and has already started the stumbling, dropping behaviors associated with Vincristine. Oh,
and lest I forget - her biting furniture thing started this morning as well, as we found her
chewing on Aurora's desk chair. She bites things because the Vincristine makes her jaws hurt
and its the only way she knows how to deal with that. Its one of the more interesting side
effects...
Although Avalon's numbers (ANC) did drop off this week, from 2050 last week to 1459 this
week - but they are still in the safe range. Its almost frightening to have them so good for
several weeks in a row. I feel like I'm waiting for the other shoe to fall. Avalon's weight at least
held steady this week, although I had high hopes that we would have regained what we lost the
week before. Apparantly, her body refuses to break that 10 kg mark. I wish the steroids would
make her hungry again...instead of just cranky.
Yes, she's back on steroids for 5 days - she always is with a Vincristine infusion. To sum up
her Thursday chemo therapy regimen: lumbar puncture with spinal methotrexate (spinal
chemo), Vincristine infusion (IV chemo), decadron (oral steroids), oral methotrexate (oral
chemo), purinethol (6MP - oral chemo), Zantac (to protect her stomach from the steroids), and
two mouth treatments. Whew! What a load!
Avalon will take the 6 MP every day for the rest of her chemo protocol (19 more months). She
only takes oral Methotrexate once a week, and the Vincristine infusions and matching 5 days
of steroids are down to once a month. After this week, her L.P. and spinal chemos are
stretching out to once every 3 months...Wahoo! We are three weeks away from being in the
"Maintenance" phase of chemo...the final leg of our journey. Now, if we can convince Avalon's
body to accept another SIP (Subcutaneous Infusion Port) - her life can normalize a bit. Wish
her luck.
Avalon has an appointment on Tuesday for her vein study. Yet another sedation, which
means yet another day of starvation...but it will all be worth it, if she gets her SIP back.
Wednesday she has an appointment for pictures to be taken for the Circle of Friends
fundraiser, and Thursday we see the surgeon again to discuss re-implantation. If we manage
to survive this week - we'll tell you what we learn.
You may be asking yourself, "Is she nuts? Didn't she say good news?" Admittedly, yes, I'm
rather cashew in nature...but I wasn't mistaken about the good in our news. Avalon's PICC
now draws blood - yay! Her ANC was over 1000 - double yay! Her weight held steady -
yippee! Her chest is healing nicely - super yippee! And her L.P. was the least eventful of the
past several months - wah-stinkin'-hooey!!!!!!!! You see? Life is all a matter of perspective.
I'm betting her Thursday makes yours look like a cake walk, doesn't it?
We are thankful you choose to read about her days, good and bad, Love to ALL of you!!!
Alicia, Nick, Aurora, Ambrosia, and Avalon
