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

Teething, Therapy and other Thoughts

March 30, 2011

Teething is the newest phase in Josie’s life right now!  Sometimes we forget the stages of “normal” babies and things like teething catch us off guard.  This has been a good stage for Josie though as she is now sticking her fingers in her mouth in order to sooth her inflamed gums.  The fact that she allows her own fingers in her mouth without gagging herself is monumental.  She really likes her index finger and has been toying with her thumb the past few days; we never thought we would appreciate a child sucking on her own fingers so much!

We may be turning a corner with Josie starting to eat – this past week she has tolerated tastes of applesauce, bananas and pears.  She has gagged a bit, but has learned to swallow the gags and once she does that, she seems pretty proud of herself and breaks out in smiles.  It is a very slow process, but we are encouraged with a little progress.  Josie is getting Speech therapy once a week to help work on this area of development. 

We met with Josie’s Neuro-Development PA (Physicians Assistant) and she suggested that we go ahead with a g-tube (tube that is surgically placed in her stomach) so that we can get the tube out of her nose and that will hopefully help with the reflux and also will help the progress of eating and swallowing.  Right now the consultation with those surgeons will not be until April 28 and the surgery will be pending the MRI results.  Until then, we have been blessed with some fun and colorful tape to use on Josie’s face.  Since she has to have the feeding tube, we might as well make it a little bit pretty and fun!

Josie has also started outpatient Physical therapy once a week.  We have only had one session and by the end of it Josie was so exhausted that she fell asleep sitting up.  We are going to PT today and in the first visit the therapist mentioned using special tape on her left arm to try and “wake up” her muscles and she also mentioned getting braces for her legs that would help her when she is in the standing position.  Not sure if all of that will happen today, but I am very encouraged by this therapist and that she wants to get Josie to go as far as her body will let her go.

During the week we also have an “Early On” therapist that comes to our house.  Early On is a program through the school districts that helps kids like Josie.  Josie loves “Miss Liz” and has seemed to make progress each week that she has had this therapy.  Liz works with her on PT, OT and speech from both a developmental and educational standpoint. 

We have been weaning Josie’s pain meds and she is now off both of the meds she was addicted to (Morphine and Ativan) – Praise God!  That also means we have dropped 6 syringes of medicine a day!  Josie met with her Neurologist and is now being weaned off of one of her seizure medicines too.  This will be a very slow wean, to drop just the middle of the day dose, it will take 7 weeks.  Regardless of how long it takes, we are pleased that she is being weaned from this medicine.

Based on the appointment with the Neurologist, Josie will have an EEG in May, to monitor any seizure or other neurological activity.  This is a routine test for brain trauma patients.

On April 25, Josie will have an MRI.  By this time, she will have had 2½  rounds of this new chemotherapy.  This image will tell us if the chemo is shrinking the tumor that has started growing into the left hemisphere of her brain.  If the chemo has worked, then our Oncologist has given the okay to take a little break in order for Josie to get the g-tube in her stomach.  If the results are not favorable and the chemo appears to not be working, then we are at the end of our options for chemotherapy.  So this MRI is a big deal and it is with quivering knees we approach this timeframe.  We are praying continuously for a miracle and for God to heal our Josie.  Some days we almost forget how fine a line we are walking with her because she seems to be doing so well from an outward appearance.  Things like this MRI bring us back to the reality of what is going on in our little girls head and brings us to our knees before our magnificent God. 

On May 1^st, we are taking a walk against pediatric cancer.  There is an 8K run/5K walk that we have signed up to walk.  All proceeds raised from the walk will stay here in west Michigan for research for pediatric cancer.  The top 2 pediatric cancers are brain tumors/cancer and leukemia.  If anyone is interested in doing this walk with us, you can register at the following website – the early bird registration is done, but you can still register for the race.

www.milansmiraclerun.com

Finally, we are planning a “Birthday Bash” for Josie on July 9 from 2pm-5pm.  It will be an open house at our church and everyone is invited.  We will send something out a little closer to that timeframe, but we wanted to start getting the word out a little early.   Feel free to spread the word to others that would be interested in coming, but might not have facebook or get this email update.  We know many of you are too far away to come, but please know that we appreciate everyone that has supported, prayed and just been with us through this year of Josie’s life.  We are looking forward to a fun time of celebrating Josie and maybe, just maybe by that time, she will be able to try some cake!

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

Daddy daughter bonding

7/22/10
Hello all. Well, we have reached the end of a long and eventful day. Darcia has
headed home for what will hopefully be a long, peaceful night of sleep, and
Josie and I are just hanging out here in the Butterworth PCCU. A little father
- daughter bonding time, if you will. She is currently sleeping in a crib, and
the only thing running into her is a feeding tube. Praise God! Yesterday the
breathing tube came out. Today, all sorts of stuff came out - the catheter, the
arterial line, the EEG electrodes, the constant pain killer drip. Tomorrow,
there's talk that her central line (IV under her collarbone) will be removed.
We've had a speech therapist here (to discuss her feeding abilities, not her
speech, that comes later), an occupational therapist to evaluate her arm and
hand movements, the neurologist, the neurosurgeon, and a host of other folks to
poke, prod, and assess her. So, it has been a very busy, but very good day.
Darcia and I got to hold Josie this evening, which made us both quite happy, since
it's been about a week since she's been held.
I guess that's pretty much the summary for the day. I feel like there should be
more, but that's enough, I suppose. We are excited for the progress over the
last couple of days, but are trying to remain cautious and keep in mind that we
have a long road ahead of us, with lots of appointments and tests, and another
major surgery (unless God chooses to resect the rest of this tumor in a
different way :) ) and the rehab that accompanies it. Thank you again for all
of your prayers, calls, cards, and all around support. Josie is in the hands of
our Creator, and we continue to pray for her continued healing and
rehabilitation.

Not So Quiet Josie Day...

7/18/10 Not So Quiet Josie Day...
Ok, so Josie is now having about 26 EEG electrodes attached to her head to
monitor her seizure activity. She'll also be on video. Josie has had quite a
first week! The doctors are saying that if anyone is entitled to have some
seizures, it would be Josie. She has had some tremendous trauma to her brain,
between the raquet ball size tumor and the surgery to remove part of it. So,
she is on some anti-seizure meds to control them as well. This will hopefully
keep her calm, which should help in the healing process as well.
We saw the "after" MRI photos this morning, and there appears to be
quite a difference. There's a bit more room in her head now, so that's good.
Her head circumference has gotten smaller as well. Hopefully, after a morning
of getting picked at, poked at, and fussed with, Josie will have a good
afternoon of rest and be able to work on recovering from her major surgery on
Friday.

7/18/10
Well, things have calmed down a bit since the last post. Josie now has a
breathing tube in again, to help regulate her breathing. She is on some
anti-seizure medication, hooked up to a continuous EEG to monitor any seizure
activity, and she's been somewhat sedated to help her remain calm. I think
right now there are about 42 different wires / hoses going into her or coming
out of her. Poor kiddo. This morning was a little rough for Darcia and me (I've
hijacked Darcia's account to post this). Seeing and hearing our little lady
upset, in discomfort, and struggling for breath was very disconcerting, as you
may imagine. We are feeling that the previous week is catching up to us, but
are really trying to maintain our rest and food intake, and I doing ok with
that. Thanks so much for all of your prayers, visits, notes, and visits. We lov
eyou all and really do appreciate and feel your support and prayers...