2 Year Post Surgery Anniversary!

October 23, 2012

This past weekend was the 2 year anniversary of Josie's 2nd and almost fatal brain surgery.  We think back to that time in life and shutter, remembering all of the uncertainty and trauma of Josie's little life.  Fast forward to the present and we are immediately awe struck by the amazing life that Josie is now leading.  We are still in constant prayer for continued healing and development, but 2 years ago, we would never have guessed Josie would be doing what she's doing today. 

Here are a few glimpses, as well as updates on what has been happening with "Jo" as she so affectionately likes to call herself.

"Mirror, mirror on the wall, who's the fairest of them all?"  If you put Josie in front of a mirror, she will immediately point to herself and say, "Jo" and then will proceed to talk non-stop to herself.  Mirrors have been the key to a lot of Josie's developmental progress.  We have a little portable mirror that we keep in the living room, we have a mirror in the van that sits right in front of her and we use mirrors as incentive at her therapy sessions.  In fact she will get bored playing with one of us and search the room out until she can find her reflection - whether in a mirror or in something that reflects, such as the glass on our entertainment center.  Vanity, vanity... :)

Josie is starting to catch up to her 2 year old counterparts, at least in her vocabulary.  She can now say loads of words.  She has her sisters names figured out and will mimic most anything you ask her to say.  She understands what we are saying as well and will answer appropriately with "yes" or "no" or various other responses.  We let her watch a show called "Baby Signing Time" from time to time, and she has surprised us on several occasions that she can sign and say some of things that she has seen on this show.  She is very attentive to anything that will allow her to communicate.  She can make the sounds of at least 8-10 animals when we look through books.  Communicating and being with people are her favorite things!

As far as being mobile, Josie is making good progress in this area of development too.  We have taught her how to scoot around in a circle as well as she can move forward a little now too.  Marc came up with an idea that has helped Josie move a little faster in her scooting and it is in the form of the furniture movers called the "sliding robot".  They are these hexagon shaped plastic discs that have a foam top.  Typically you slip these under heavy furniture and it makes it easier to move the object.  For Josie, it is the same concept, we slip it under her bottom and then she can move her own body faster.   It was a joke at first until we realized that it actually helped her get around better!

She is becoming stronger in her standing and her walking during therapy and at home.  Currently in therapy they are working with her on using a basic walker and she seems to be adapting to it well.  She is still not stable enough to walk with it by herself, but each week we see improvements.  Her arm is also starting to become more active and she will initiate play with that hand and arm.  The fingers on her left hand are starting to show movement too.  Tonight she actually grasped my finger when I was playing with her. 

The last oncology report that we received at Josie's clinic visit proved to be encouraging.  Josie is still on a maintenance dose of chemo every month for 5 days and we were told that the last round of chemo will be in January.  Only 3 more to go and then she will be off chemo completely!  The oncologist also did not see any medical concerns at this time to schedule an MRI until after her last dose of chemo.  Our guess is that she will have her next MRI in February.  This will be the longest stretch of time that we have gone without any imaging of Josie's head - Praise God! 

Last month we had a follow-up appointment with her Neuro-surgeon and once again he was amazed by Josie and what she is doing.  He said he never imagined that we would have a 2 year follow-up from the surgery he thought she would not live through.  He is pleased with her progress, needless to say.

Josie has such a sweet spirit and has showed that she is a fighter.  She is truly a delight and a sweet reminder of God's plan for each of us. 

Many Blessings,

Marc & Darcia

Happy Birthday Josie - 2 years old!

July 11, 2012

Josie woke us up at 3 something this morning, crying and having a fit when daddy tried to hold her and not mom.  Her teeth are coming through in a hurry and it is making for a miserable 2 year old.  At about the same time two years ago, this little lady was making her first appearance into our lives.  Maybe that's why she was up in the night...just a reminder to us that "here she is" and life will never be the same. 

I can't look back on the day Josie was born without getting caught up in the emotions of what took place that day.  I remember vividly watching the resident doctor come in to give us a report about the ultrasound that they had done earlier in the day.  I was all smiles as he started telling us about the procedure and still remember the moment when my lips began to quiver in fear and disbelief as the prognosis unfolded.  My heart breaks each time I replay the resident doctors words to us, "Your daughter has a tumor in her brain, it is the size of a racquetball.  I'm really sorry." 

I cried so hard that I am sure they heard me far down the hallway.  I only stopped crying so loudly because I had this thought occur that I didn't want to scare all the other new moms that were delighting in their new babies.  Babies that didn't have a tumor or have an uncertain future so early in their life. 

Marc was so strong during this time, he was visibly shaken and emotional, but somehow had the strength to calm and soothe me despite our world turning upside down.  The first phone call we received after the news, was from our neighbor and that was the first time Marc had to verbalize to anyone what we had just heard about our baby girl.  The emotion was raw and horrible.  Somehow putting it into words made everything real.

There's a little glimpse into the first day of Josie's life.  We have had many days similar to this one, almost losing her several times.  I had longed for a third baby for so long and had cried out to God for a child, but I had no idea what was in store when we finally made the decision to have another child.  As I replay the different days of uncertainty, yes, my heart hurts and would love to have never had to go through those difficult times, but I do know this, our pain and suffering is not in vain.  God is using Josie and our family for His glory and that is enough for me.  Do I like the pain?  NO.  But I have learned so much about who God is and who I am in Him that I would not trade this experience.

Josie is a true blessing.  Do I see it that way every single day?  No.  We are still in the midst of the battle, even though we are not in the trenches like we were.  Being tired is our constant mode, in fact Marc said this morning that we haven't caught up yet from the night she was born.  

The past two years have been long and hard, but Josie makes everything worth it.  For those that have never met her, she has the sweetest personality.  Her smile is brilliant and will make you smile too.  She is a social butterfly, people make her happy.  If she can have center stage, she will take it and live it up.  She is a mommy's girl, but loves her daddy like crazy (just not in the middle of the night or early morning, she wants mom then).  Her sisters...they are her constant entertainment and she lights up whenever she sees them.  Josie's laugh is priceless, she can really belly laugh (which unfortunately makes her reflux a short time later).  She can blow kisses and loves to hug.  One of my friends says she feels like she is hugging an angel when she holds Jo.  We feel the same sometimes, like she is a little glimpse of heaven.

We love to tell our story, so please don't hesitate to ask us how things are going or what is new in our life or Josie's.  The best part...this is not just our story, this is God's story.

Blessings,

Marc & Darcia

Attached are 3 messages, 2-part series from Greg Laurie (pastor in California) and one from our pastor Louie Konopka.  Both messages are about handling crises and suffering.  They are great for anyone to listen to...enjoy and be encouraged.

Hope for those facing Crisis 1 - Greg Laurie
http://www.harvest.org/includes/mp3/player.php?media_type=radio&id=3634&mid=3634
Hope for those facing Crisis 2 - Greg Laurie
http://www.harvest.org/includes/mp3/player.php?media_type=radio&id=3635&mid=3635

When Suffering Sandblasts Us - Louie Konopka

http://www.youtube.com/watch?v=sFlehD7Wp5Q&feature=em-share_video_user

Jo's New Wheels!!

April 2012 - MRI results

April 18, 2012

Yesterday Josie had her MRI and by 10:00 today we had results!  I was out running errands when the call came, but by the upbeat message we received, I had a feeling things were looking good and I was right.

Josie's tumor is once again decreased in size, possibly up to 20% smaller, and according to the nurse that I talked to today, she said that both the oncologist and the neurosurgeon were pleased with this scan.  This was the first scan since Josie has been off of her IV chemo and we are extremely pleased that things continue to improve.  Our hearts are full today with the good news! 

Josie is developing in so many ways and it is exciting to see her start to catch on to things quicker and quicker.  Last night I was singing the "Itsy Bitsy spider" song to her and I always tickle her at the end of the song.  As soon as I started the song, she was anticipating the tickling at the end and would start to squirm and squeal by the time I got to the end.  Then she started mimicking me by wiggling her fingers like the spider as it is crawling - (I just wiggle my fingers like the crawling legs) and also mimicked me doing the motions for "out came the sun".  It was so fun to see her trying so hard to do the song with me and that she was having fun because she could participate.  LOVE IT!  We look forward to what God is going to do with this little lady!

Singing praises!
Marc & Darcia

April Update

April 11, 2012

It's Josie's monthly birthday today!  We celebrate, well at least say happy birthday every month to her on the 11th, because every month is a miraculous milestone in her journey.  She has come a long ways and is such a blessing in the midst of all the crazy things that have happened to her. 

We have several things that are worthy of an update and we are praising God for the change in direction that things are taking for Josie.  We finally feel like we are getting a bit of a break and can get our heads above water for more than just a quick breath. 

So here is what has been happening:

NO MORE HELMET!!!  Many of you have seen Josie or pictures of Josie with her pretty pink helmet.  The helmet was requested by her neurosurgeon to help shape her head.  The orthatist at Mary Free Bed was skeptical of the outcome right from the start, but at the last helmet check-up, Josie's head had changed shaped by 8-10mm.  At Josie's 6 month appointment with her neurosurgeon just a couple of weeks ago, he was fine with the change - although he didn't see that it did too much and said she did not have to wear the helmet any longer.  She is quite past the age of good shaping and there is no reason to keep her wearing it if it's not going to do much more for her.  At some point, if she starts to crawl or walk, she will need a different type of helmet for protection, but at this point, she is pretty stationary.  We are relieved, to say the least.  The thought of dealing with a helmet during the summer was oppressing - it already stunk just from wear during the winter months - can't imagine the smell after sweat and heat!  Now we get to see her beautiful hair all the time and she sure has a lot of it!   She has quite a bit of curl in her hair, we hope it is natural and not chemo curls (chemotherapy drugs can change hair and many times it is curly).  Either way, we love it and enjoy seeing it all the time.

The reflux problem seems to be coming to a halt.  We noticed it was not so bad about 5-6 weeks ago and on a spur of the moment thought, I (Darcia) decided to start running her formula through her stomach port instead of her intestine.  I was only going to do it for a few hours as a trial, but then she did so well with it that I left it all day and even in the night.  We were still putting meds into her intestine, but after a week of no reflux and the food running in her stomach, we now do everything through her stomach port.  This is a huge step and we are hoping to get to a place where we can do bolus feeds - which is where we give her an amount of food over a short span of time into her stomach.  Similar to how we eat breakfast, lunch and dinner, we would feed her only at certain times instead of running a pump around the clock.  We are also starting to try tastes of baby food in her mouth, at least when she lets us.  She is still very averse to anything in her mouth, but she is showing interest in what we eat and drink.  We need to decide now whether or not to start feeding therapy, we will be talking with her neurodevelopment doctor's office to help make that decision.  We are very hopeful that someday Josie will be able eat using her mouth.

Since our hospital stay for the strange infection in her port, in which her port was pulled, we have enjoyed having one less cord to deal with at home.  At the clinic they now have to poke her when they need to draw labs, but as of today, she only needs to go once a month for labs!  They have switched all of her IV meds to a medicine given at home or dropped some of them all together.  The clinic visit also only lasts about 2 hours instead of the whole day, much more manageable in all aspects. 

We are still doing 1 chemo drug at home through her feeding tube.  Today we start with a higher dose and will continue to up the dose each month until her maximum is reached.  We had been told originally that she would be done with this chemo drug in June or July, but now the plan has been changed to continue the drug for 6-9 more months. 

This coming Tuesday, April 17, Josie will have her next MRI.  These scans are now going to be done every 3 months until the doctors feel that the tumor is under control enough to go longer than that.  When we met with the neurosurgeon, he is always the realist, which is good in some ways and heart breaking in others, he said that even though the tumor appears to be shrinking, we have no idea how this tumor will act without the other chemo drugs.  It was just a bit of reality that we don't know Josie's true prognosis and have to keep that in mind even though she is starting to make such strides in her development. 

I asked him if he had seen any other tumors like this since Josie was born - he said he has seen 2 babies with brain tumors, but nothing like Josie's.  He is still amazed by her and how well she is doing, so much so, that he just shakes his head whenever he sees her - especially when chattering away to him in her own little language and flashing her sweet smile and princess wave.

His final words at the appointment - "we wait and see".  It's what we have to do with all of our kids...wait and see and most importantly, PRAY!  When I look at Josie some days, I feel like I "see" the prayers of so many people in everything she does, it usually brings me to my own knee's.  Thank you for praying and loving her and us so much...she is a living proof. 

2nd Annual Milan's Miracle Run - Join Team Josie!!

Hello everyone. I just wanted to remind you of the 2nd Annual Milan's Miracle Run that we will be participating in at the end of April. This is a great opportunity to help raise money for pediatric cancer research here in West Michigan. If you would like to participate, please follow the link below to register. I believe it's a bit cheaper if you register prior to April 1, but you can still register later if you're unsure if you're able to join us. Darcia and I would like to coordinate "Team Josie" again this year, and we hope to have more participants than last year. If you're planning on running / walking this year (1k kids fun run, 3k walk, 5k run / walk, 8k run), and would like to be on "Team Josie", please let us know by April 10, so we can have the appropriate number of "Team Josie" t-shirts made up. We would love to have you join us!! Shoot me a quick email ( marc.black21@gmail.com ) if you're planning on joining "Team Josie" and be sure to include what size t-shirt you'd like. One little catch in this event is that it's held on a Sunday morning. If you are unavailable due to church - related committments, I completely understand. Even if you've already said you'd like to join us, please respond to this note with your t-shirt size, as I don't think I currently have any recorded!

www.milansmiraclerun.com

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

Our Happy Josie (right after a bath!)

Upper GI - MRI

January 18, 2012

Upper GI – MRI

This will be a brief update, as I am trying to write it while Josie sleeps here at the clinic getting her chemo.  Thankfully she has been doing really well with taking naps in her stroller while we are here – gives me a bit of a break from entertaining her or maybe it’s her entertaining me!   

Tomorrow, January 19 – Josie will be having an upper GI done again based on the referral from her GI doctor.  He would like to see an updated image of what is happening with her Nissan (the wrap around her esophagus).  If they can determine what is happening and if every doctor is on board, they may try and redo the Nissan.  We are a little apprehensive since it didn’t work the first time and the surgeon that did it had no rationale as to why it would not have worked.  Regardless, the last month of Josie refluxing has been extremely draining, not only on her, but on us too.  Ironically, the past few days we have seen a drastic reduction in her reflux and today was the first day in months that Josie did not reflux even once.  We completely feel like this is the wind down of one of her cycles, of which we hope to have some reprieve for a little while.  We will meet with the general surgeon next week to discuss the upper GI and what options we have for Josie and surgery. 

Our prayer is that this upper GI will show the doctors what they need to know and that both the doctors and Marc and I will have wisdom of what to do for her regarding surgery and her reflux. 

Next Thursday, January 26 will be Josie’s annual MRI.  These are always the indicating markers of what the tumor is doing and what treatment plans will follow.  We are of course on our knees about this imaging.  We will not know the results until the following week when we can meet with her oncologist see the actual MRI. 

So the next few weeks are weighing on us and are big things for our little girl to go through. 

We would appreciate prayer for each of these things. 

Finally, we are working on a blog spot for Josie that will be easier accessed by those with facebook or email.  I am working on putting all of the old posts up from the very beginning of Jo’s life and once those are added, it should be ready to go.  We will let you know when it is available – hopefully soon!

Blessings to you all,

Marc & Darcia