January 22, 2011
This is about day 10 of working on an update – honest, it
really is! We are home with Josie and
most people would think it would be easier to get to an update, but on the
contrary, life at home is just about as chaotic as the hospital routine, if not
more so, but in different ways. At home
we draw and push medicine, we are the night care givers (you really get used to
having nurses and techs help out in the middle of the night!), we are Josie’s
appointment keepers and then just regular ole “mom and dad”! Plus we are still trying to adjust to life
with 3 children – every hospital stay starts the adjustment process all over
again.
We have been asked by numerous people when an update will be
posted – hold on to your seats, cause this one will be a long-winded one! J
Round 3 of chemotherapy is done! Josie came through like a champ – even
surprised the doctors once again! Each
time Josie has chemotherapy, there is always one chemotherapy drug that is
really strong and will be harsh on her body.
I believe I posted this a while ago, but Josie has 2 types of cancer
within her brain tumor. One cancer is
called a glioma (general cancer term) and the other is called a PNET (acronym
for a very long cancer name). When Josie
gets treatment, she gets one round of a 3 drug regiment to attack one type of
cancer and the next round is a 4 drug regiment to attack the other type of
cancer. For those that like details,
here are the drugs:
3 drug treatment:
*Vincristine (1 time a week for 3 weeks) – given in a
syringe to her broviac line over the course of a minute.
*Temodar (1 time a day for 5 days) – given in a syringe
through her feeding tube
*Carboplatin (1 time a day for 2 days) – given through an IV
bag over the course of an hour. This is
the strongest drug in this treatment
4 drug treatment:
Vincristine and Temodar (same as above)
*Etoposide or called VP-16 – (1 time a day for 10 days)
given in a syringe through her feeding tube.
*Cytoxin (1 time a day for just 1 day) – given through an IV
bag over the course of a couple hours.
(I think that is how this one is done – regardless…it is something like
this) This is the strongest drug of this
treatment.
During round 3 (which was the 3 drug treatment), Josie seemed
to handle the chemo in different ways.
The first time she received the 3 drug treatment, they only gave her a
half dose of the strong drug because they weren’t sure how she would handle
it. This time they gave her the full
dose. The drug did make Josie sick and
she ended up throwing up a lot, she was also agitated and would sleep fitfully
- in general she just didn’t feel well.
We had a hard time watching her go through this round and did a lot of
praying over her and holding her to try and make her comfortable. The surprising aspect of this round was that
Josie’s blood counts never really took a nose dive. The blood counts did drop some and they still
gave her medicine to help boost her white blood cells, but by day 12, which is
at the end of the cycle, they were surprised that her blood counts were holding
steady. We ended up going home earlier
than expected and we were good with that!
We are so thankful and know that God had His hand on her through this
round. I had gone into this round
somewhat fearful and God showed me that He had everything under control – there
was no need for my fear, it obviously did me no good! I’m learning a lot about faith and trust; that
is for sure!
Although Josie did well during this round of chemo, the last
six months (yes, Josie turned 6 months on January 11!) is catching up with us
and we have felt more exhausted. Here’s
an example of a typical week in our life while Josie is at the hospital:
Sunday night – Marc stays overnight at the hospital and
leaves for work on Monday by 7 or 7:30 – the Techs and Nurses keep an eye on
Josie until Darcia can get up to the hospital after getting both girls off to
school – usually around 8:15.
Monday/Tuesday – Darcia stays at the hospital w/Josie and
will stay the night and then stay all day on Tuesday until she transitions
w/Marc at around 5:00 – we see each
other for 2 minutes (literally) and then Darcia heads home to pick the girls up
from a friend’s house and settle in for dinner.
Notice that Marc and Darcia will probably not see each other on Monday,
as he will pick up the girls on his way home from work and Darcia is at the
hospital.
We then flip/flop like this throughout the rest of the
week.
We have truly been blessed by so many friends and family
have swooped in on us and made these low times do-able and many have made sure
that Marc and I are getting quality time as couple. Thanks to several good friends, (who have
become my personal day planners and phone callers), we have multiple people
coming up to the hospital to sit for a few hours here or there so that we can
both be home for dinner a couple nights a week with the girls or sometimes Marc
and I even get to go on dates and that is truly priceless!
Friends from my previous Teacher Education department at
Cornerstone gave us a gift of 2 webcams – one for the hospital and one for home
and that has been a fun treat – especially when I have been at the hospital for
2 full days – it is refreshing and sweet to my soul to see my girls and they
can see me and Josie!
We have not had the girls come up to the hospital very much
because of the flu and sickness season (seems like everyone has either strep or
the flu) – with Josie getting an infection in the last round of chemo, we are
being very careful. Any volunteers that
come to sit with Josie need to be healthy and should not have been exposed to
anyone with a fever or other illness that is contagious. Right before Josie was admitted for this 3rd
round of Chemo, our daughter Eliza (4) came down with a red, itchy rash all
over upper body – her chest, back, arms and face were covered. I took her in to the doctor and found that
she had Fifth disease (the 5th disease to be discovered that had a
red, itchy rash – clever huh!?). This
is a very common and non-threatening rash, never-the-less, Josie had been
exposed. All was well and Josie never
developed the rash and neither did Reese – Praise God!
Speaking of our break:
prior to round 3, we were able to be home with Josie for Christmas! What a blessing! We were home for around 11-12 days and during
that time; we had a surprise blessing from Josie – her reflux mysteriously went
away. Technically it stopped at around
the same time she had sodium problems. Such a pleasant change! Since this 3rd round of chemo and being sick
from the drugs, she has started refluxing again. The reflux has slowed down from what it was,
so we will continue to enjoy at least fewer changes of clothing!
The Monday before Christmas, the girls were surprised with
having Santa come to visit them – AT OUR HOUSE!
A rep from an early care for ill children program called a few weeks
before Christmas to set this up and at first I thought that this wasn’t
necessary and our girls know that Santa isn’t real (sorry if I just popped a
few bubbles!) and that he is just a fun figure at Christmas time. Then I changed my mind and thought the girls
would love having Santa come to their house.
It was well worth it, for sure!
He told the girls that on Christmas Eve he goes to everyone’s houses,
but that Mrs. Claus has a VERY special list of children and those are the ones
that Santa goes to see before Christmas.
Reese, Eliza and Josie were on her VERY special list this year. He was a great Santa too – real beard that
was perfectly Santa and he had a beautiful suit – not a generic Santa suit by
any means! What a fun evening and the girls truly loved
it. Although they wanted to know why he
came in a truck and not a sleigh!
Our breaks are all too short and are still filled with many
appointments throughout our time at home.
We came home on Monday, January 10 and during that week, I was at the
Hem/Onc clinic with Josie on Wednesday, on Friday, on Monday and then again on
Friday. They want to continually check her blood counts and make sure they
maintain at the correct levels. Sometimes
these appointments can last up to 3 hours, which was the case this past
Friday. One really nice thing about the clinic
is that it has now moved to the new hospital, so that will at least make the
appointment more fun with being in a new place!
By the way, the new Helen DeVos Children’s Hospital is quite amazing – Grand
Rapids has truly been blessed! Security is a bit of a bear, but I am sure
they will be ironing out some of those kinks as time goes on.
This next round of chemo (round 4) for Josie began this past
Friday (January 21). She was given a
dose of the Vincristine chemo drug in the clinic and then we were given 2 chemo
drugs (Temodar and Etoposide) that we will administer to her at home. During this appointment, the doctor gave good
news about Josie’s treatment. The first
is that this is the last of the Vincristine that she will receive – they
typically discontinue this drug in the treatment plan after round 3. He gave her one more dose for various
reasons, but she will not need another dose during this round. The other good news is that we will be home
for the duration of the chemotherapy we give to Josie at home, which means we
won’t admit Josie until February 2, when she will receive the 4th
drug. This is the strongest drug of this
cycle and this will be the one that will drop Josie’s blood counts which is why
she must be admitted.
As far as health, that is a definite item of prayer, as she
is surrounded by sisters that have yucky coughs and colds. We are not taking her out of the house except
for appointments and a few other little outings. When Josie receives the strong chemo drug, we
are praying for her to be healthy and that there will not be any infections
this time.
Marc and I are healthy – tired, yes, but otherwise healthy. We have had our share of craziness, I had my
wisdom teeth pulled (all 4!) on December 30th and have had to have
several teeth filled and in the process one of my teeth ended up having to be
rebuilt – still not sure if it is quite right. Other than those blips, we are
staying well. Thank you to everyone that
is praying not only for Josie, but for the rest of our family. We have felt it in so many ways and know that
God is sustaining us through all of you.
Blessings!
Marc & Darcia
