Chemo, chemo, chemo

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 3^rd 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 5^th 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 4^th 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 30^th 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

EEG - recheck

7/23/10
A little eventful morning - Josie had to have the EEG put back on for a spot
check, which meant putting 26 little electrodes on her head again and then
record it for 2 hours or so and then take those 26 little electrodes off again.
Then the nurse gave her head a bath (not a popular choice!). Poor kid - her
head has already had so much happen to it. She is still seizure free and down
to 2 anti-seizure meds.
The rest of the day was very calm and Marc and I had some really nice and long
cuddle time with her. So nice to be able to hold our baby again.
I (Darcia) am staying here at the hospital with her and now Marc will get some
good rest. I need to get there myself while Josie sleeps.
Blessings- Darcia

Quiet Josie Day...

7/17/10 Quiet Josie Day...
We have had a pretty quiet day today and for that we have been thankful.
Josie's breathing tube came out today without much problem and she has been
breathing on her own most of the day.
The evening however has been a little bit harder. Josie started having seizures
around 4pm today - she has clusters of them and then she will sleep for a
while. The doctors and nurses have told me several time tonight that this was
to be expected because her brain has gone through quite a trauma. They have
given her 2 anti-seizure meds and so far they are still not under control.
Watching her is quite painful to me. I can touch her and sing to her though
whenever she goes through a seizure. I am getting tired, but just don't want
her to go through these seizures by herself. The nurses and doctors are
watching her extremely close - which is reassuring to me.
For now, please pray that they can get these seizures under control and that
they are not harmful to her brain and the healing that it needs to be doing.
God is with us - we have felt him all along the way - He is the great healer
and He is the one in control of Josie's little life. With God - there is always
hope.

Post Surgery

7/16/10 Post Surgery
Josie is out of surgery. The day has been very rough all the way around. Once
Josie was taken to the OR, we walked down with her and it was very hard to see
her in pain, her pain med had worn off and she cried a lot and we could tell she
was hurting.
Once in the OR, the surgery started at 10:50am and finished somewhere around 4
or 4:30 (although time just meshed together, so we aren't completely sure).
The doctor came up and talked to us about the procedure and he even said that
Josie had a rough time of it in surgery. He was able to remove 50-75% of the
brain tumor, but due to excessive bleeding from the blood vessels around the
tumor, he had to close things up. The tumor has become more aggressive since
her biopsy and was putting lots of pressure on her head - which is why she was
in so much pain. Josie also had some heart issues during this time and they had
to move quickly, fortunately they did and she came out fine. She is back up in
her room recovering. She has tons of things hooked up to her and she is getting
transfusions of blood. A prayer request would be that she start making her own
blood (which she is doing) enough to keep things going well. Josie will have an
MRI tomorrow morning in order to see how much of the tumor is left. The doctor
will most likely do another surgery when she is a bit bigger (6-9 months) to
get the rest of the tumor, unless she needs one sooner - dependent on the
growth rate of the remaining tumor. For now, she is stable and actually looking
around and moving her limbs.
Here is a bit about what Josie has:
Desmoplastic Infantile Astrocytoma
Non-cancerous tumor (praise God!)
Rare form of tumor 3-5% of tumors in children and even lower percentage in
infants
We are tired tonight, so we will give more information at a later date - both
of us are having a hard time thinking.
Thank you for all your prayers - we needed them today and Josie needs continued
prayer.
Marc & Darcia

Respirator Update

7/15/10 Respirator Update
Marc and I were able to go home last night and get some better sleep, which is
much needed. We completely trust the doctors and nursing staff here at the
Pediatric Critical Care Center (DeVos Children's Hospital) and could rest with
this in mind.
We were able to meet with the Doctors and nurses this morning for their daily
updates and we met individually with Josie's Neurosurgeon. We hope to have a
plan of action sometime tomorrow if all goes well.
Josie was able to have her breathing tube removed this afternoon. It was a
little more nerve racking than anticipated and Josie experienced quite a bit of
pain, but she is breathing on her own and resting with some pain meds while I
write this update. She needs to have a good cough or cry to help things smooth
out in her breathing. Keep praying for this.
As for things to pray for, the doctor said that when the biopsy results come
back and when they do the next surgery, the best outcome would be that they
find that the tumor is growing from the outer area of her skull (not really
medical terms used here) rather then near the center of her brain. Everything
is waiting though for final results on her biopsy.
Thank you for praying! We are truly blessed by the support that we have been
receiving.