Josie's Home

Josie is home! After a 5 day hospital stay, Josie was released yesterday. She is feeling good, and even got her Broviac line removed!! She's down to one tube sticking out of her now. She will be on antibiotics for a week or so here at home, and should be good to go. Thanks for your thoughts and prayers through this. More details later...

www.milansmiraclerun.com

Hi everyone. Well,
the time is approaching for the 2nd annual Milan's
Miracle Run to raise money for pediatric cancer research in West
Michigan. We had the
pleasure of participating in last year's run, and had a great time. We had a group of about 13 people
representing "Team Josie" last year - thanks to those who
participated! This year, our desire is
to have a larger "Team Josie" participating in the second run. Milan
was a young girl who lost her battle to pediatric cancer a few years ago. Her parents are very active in raising money
for pediatric cancer research, and set up this annual run. To see more about Milan's
story, please visit

www.milansmiraclerun.com

Last year there were about 400 runners / walkers. Hopefully there will be many more this
year. If you are interested in joining
us this year to help raise money for pediatric cancer research, please let us know. If we have enough interest, we are thinking
about putting together some "Team Josie" T-Shirts for our team to
wear during the event. You'll also get a
Milan's Miracle Run shirt, I
believe. So let us know! See the website for more details. You'll need to register there. The event is on a Sunday morning, so that may
complicate things with church service obligations. If that is an issue, no worries.

The event is April 29, and starts at 9 am. Should
probably arrive earlier. There is a 1K
kids walk, 3K run/walk, a 5K run and an 8K run.
It's $25 if you register before April 1, and $28 if you register after
April 1.

Hope to see you there!!

Marc

Also... we're on the
search for a creative team name. If you
have any suggestions, send it our way!!

48 hours into 6 days...

Josie has never liked to be the typical case and she is following that pattern this time in the hospital too!  Earlier this morning, the plan was still the same and we were hoping to be out of here by tomorrow (Wednesday) at the latest.  At 11:30, the doctors did their rounds and the plan had drastically changed.  The new cultures that they took yesterday had started growing infection as well, which means - we don't get to go home tomorrow!

The doctor believes this infection was actually already present in one of Josie's lines and it was by the grace of God that things happened the way they did on Sunday because now it has been caught before she became terribly sick and it really did become an emergency.  One way to alleviate problems like this is to get rid of the IV line and since she is now done with IV chemo (as of last Friday! WOOT, WOOT!) they can pull the line safely.  This is scheduled for tomorrow (Wednesday) at 9:00am and is a procedure done under sedation.  Once this is done, they will give her a peripheral line in her arm and run antibiotics through that for the following 2-3 days.  Our best guess at being home with her now is late Friday or Saturday (most likely Saturday the doctor said).

On a side note, Josie had a very crazy beginning to her day with several diaper blow outs - one of these blowouts ended with us cutting off her shirt and throwing everything away.  That was at about 5am - nice way to start the day!

She is still acting fine and is stealing the show with the doctors and nurses! :)  She's waiving at them all in her special way as if she was the queen in a parade!

Sleep is scattered and after tonight, I think Marc and I will start switching back and forth again.  Please pray that this does clear up by the weekend - visions of our month long stay last summer are all too fresh.

Blessings & hope,
Darcia & Marc

Hospital Visit - March 2012

Darcia's Latest Facebook Posts... never a dull moment.

I was so looking forward to a quiet week this week...but Josie just won't go for it! We are in need of prayer for Josie, here's the short version of what it happening: Josie's IV line got compromised yesterday (long story) and we ended up taking her to the ER for 2 antibiotic infusions and blood cultures to make sure there wasn't an infection in her blood. She never spiked a fever or anything to... indicate infection, but they are very cautious when it comes to IV lines like the ones Josie has. Well, this morning I got a call from her pediatrician and it appears that the blood cultures grew "infection" and grew it quite quickly. So...now we are waiting to find out what needs to happen next. It could be we are admitted to the hospital or it could mean taking her in every day for blood cultures or something like this. The pediatrician is checking with the oncologist office and they will call me later this morning. I'll keep things posted. Meanwhile...Josie is acting incredibly cute and silly this morning, which is a huge blessing!


Finally got a call...Josie will be admitted today for at least 48 hours for observation and anti-biotic treatments. Will post more as I know more. Thankful that we were able to stay out of inpatient for this long - it's been since July of last year!

Greetings, Earthlings!!

Eliza and Dad had a little creative fun with Josie! She didn't seem to mind at all! We're blessed to have such a happy kid (most of the time).

Good News MRI

February 1, 2012

It has been a week since Josie’s MRI.  We had received preliminary results last Friday, but did not want to post anything until we had reviewed the actual scan with her Oncologist.  Today we were able to do that. 

We are pleased to say that Josie’s tumor is once again smaller and showing signs that it is stabilizing.  In fact, with this latest MRI, they started using a new higher resolution format that shows more specific cancer areas.   Some of the areas that they had previously been watching are now considered not cancer areas, due to what they could see with these new scans.  Praise God!  She does still have tumor in her brain, but at this point, they are considering the portions that they see, non-threatening. 

The treatment plan is to continue with IV chemo for 2 more rounds after today,  so it will be done by the end of February.  After they stop the IV chemo, they will have her continue on the chemo that we do at home for 3 months.  By June or July of this year, she will most likely be off all chemo.  They will continue to watch her carefully by doing MRI scans every 2 months.  If the tumor continues to be stable, they will go to MRI’s every 3 months and so on. 

At first we were a little taken back that she will be off chemo, but the doctors are pleased with where she is at and believe that this is a good route for her.  She cannot stay on chemo indefinitely and they can always start her back up on chemo again (for a while) if they do see growth in the tumor.  We will cross that bridge only if it comes up.

We are still digesting all that we have seen and all that we heard today – almost a little numb (in a good way) to the news.  Praising God for such a good report and look forward to what God has for this little lady.  We love seeing our little girl develop and take on her own little character – she is truly a sweet natured, fun-loving and silly girl!

On a side note – we are on a break from Josie’s reflux and it is extremely refreshing.  Her neurologist believes that her reflux hits in cycles because of possible seizure activity.  If the reflux starts up again (we are praying that it doesn’t start up again), she will be going in for an EEG to try and pinpoint if it is seizures.  For now though, we are enjoying not carrying around a burp rag everywhere!

Blessings to you all,

Marc & Darcia