IMPROVEMENT!

September 1, 2011

Our update has been a while in coming, but mostly because we have been in a waiting pattern ourselves.  Josie had and MRI on August 22, we found out preliminary results the very same day, but wanted to wait to post anything until we knew more.  We were told that it would go to the Tumor Board that same Friday, but when I called to check on the results of that meeting, I was told that Josie's case was not even on the agenda for the day.  There was a miscommunication along the way, so we continued to wait.  On Tuesday of this week, we met with Josie's Oncologist and viewed the actual MRI. 

We are pleased to say that there is improvement in Josie's brain tumor! 

There were some spots that they were watching in her left side of her brain that have gotten much smaller.  Both the chemo and time are working in this area.  The main source of the tumor, which had begun primarily in her right side of her brain, has  now settled around the midline of the two hemispheres of her brain. This midline area is a little murky because it is part tumor and part scar tissue from surgeries.  The tumor portion still has part of the original tumor as well as the cancerous portion.  This area looks a little improved, but because it is a combination of things, it is hard to know exactly what is going on in this area.  Over time and with her chemo regimen, the hope is that the scar tissue will continue to heal and shrink and the tumor will continue to get smaller. 

The plan is to continue on with the chemo that Josie is currently receiving, as long as she is tolerating it.  She does tolerate it pretty well, the first 48 hours her stomach is rocked quite a bit, but then she seems to get back to normal.  Josie will have MRI's every 3 months, so the next one will be in November or December.  This is standard for brain tumor patients, and will help us keep track of what her tumor is doing. 

We are very thankful for improvement and ask for continued prayer for this tumor to go away.  We know that Josie is doing well just by how interactive she has become,  and for that we are again very thankful. She is a sweet baby and is developing such a fun little personality.  She is still not taking much by mouth, but she is getting her nutrients through her GJ tube in her stomach.  The tube being out of her nose has been developmentally the best move Josie could have received - she has learned how to make wonderful noises with her voice and can communicate so much better.  

Josie's birthday party was a blast!  Thank you to everyone that came and celebrated with us.  We went through 2 full size sheet cakes!!!  We loved celebrating Josie's first year of life and she had a great time too!  Looking forward to many more birthdays with this little lady.

There is so much to be thankful for and we are taking these moments day by day.  Each day is a reminder of how far we've all come this past year.  We look forward to the this coming year and wait to see what God has for us. 

Blessings,

Marc & Darcia

Post-Surgery Update

October 23, 2010  Post-Surgery Update (this will be a long post and somewhat detailed, so if you get queasy, it may be hard to read)

It’s hard to know where to begin – we have lots of information that we would like to share.

Let’s start with the day before her surgery.  Josie was in the hospital the day prior for a procedure called embolization.  Embolization is a process by which they take a micro fiber catheter and feed it to the specific artery that they want to “block” the blood flow.  The doctor that did the procedure was able to find a large artery that was feeding the tumor and was able to block it off.  Basically, this was a successful procedure.  The hope was that when Josie went to surgery, there would be less bleeding because this artery was blocked.

The day of surgery:  Josie went to an MRI first thing prior to surgery.  This was to help them during the surgery so they could tell from the images where they were and what was tumor and what was brain.  Later we were informed that the tumor had doubled in size since the last MRI, which was a little less than 4 weeks ago.  This made the tumor the same size again as when they first found it right after birth.  It is an extremely aggressive tumor.

Everything was going well during Josie’s surgery; every update seemed to be a fairly positive report.  One of the last updates, they said that she had a little bleeding, but they had gotten it under control and were continuing.  Then we were told that she was out of surgery – that she was fine and to wait in a little conference room for the doctor.  We thought it was odd that we got a conference room when most people were told right in the waiting room how things went for whomever they were waiting for.   But since they told us that she was fine, we did not anticipate what the doctor came in to tell us.  He sat down and looked weary and then told us that things did not go so well.  Josie started bleeding, they would get it under control and then she would start bleeding from somewhere else, they would get that one under control, but then she started bleeding from places they weren’t even touching.  She received 3 volumes of blood and then her body stopped coagulating (wouldn’t clot).  She was in serious condition.  They ended up leaving some cotton balls soaked with a clotting medicine inside and then closed up her head.  We were obviously devastated.  In fact the doctor was even shaken by the way things turned out since they had gone so well for the first 4 hours. 

They took Josie up to the PICU, where they worked for 1.5-2 hours trying to stabilize her, of which they were able to do.  Praise God.

Thursday morning:  Josie had another CT scan and then we talked with the doctor.  He was surprised that she was holding her own – said he thought maybe she was stronger than he gave her credit for.  The CT scan didn’t show any worse than right after surgery.  Josie even opened her eyes and looked at the doctor.  Earlier, she had moved her legs enough to kick her little blanket off.  The rest of the day she was pretty quiet – which is a good thing.

Thursday night:  Josie started having seizures again – not to be unexpected due to her trauma.  They are currently still trying to get these under control with meds. 

Friday morning:  Josie went for another MRI – this is for post-operative imaging.  During the MRI, the neurosurgeon came by to talk to Marc and me.  The news was quite sickening.  The part of the tumor that had grown back was checked by pathology and the new tissue is malignant.  The type of tumor she had at first, an astrocytoma can have multiple cell mutations in it.  When pathology checked it the first time, there were not indicators of malignant cells, but the part that was left in her brain from the first surgery must have either had those cells in it or they mutated since, which is a possibility.  

The first steps are to get Josie better from surgery, which at this point, she seems to be doing okay, although this morning they found that she has a urinary tract infection from her catheter.  They are on it though and are giving her antibiotics.  Stopping the seizures is another step they need to get under control. 

Next step…the doctors (neurosurgeon and the oncologist) are creating a plan for her.  At this point, they are planning on a new chemotherapy drug – used in infants.  Then they will develop a further plan from that stage. 

So…we wait and we pray.  This will be a long haul for our sweet baby Josie.  Not sure of the future, but glad that she is resting peacefully here in the hospital and also in the loving arms of Jesus.  My emotions have been pretty raw, but for the most part Marc and I are working through this moment by moment.  The girls (Reese & Eliza) are doing well; they are at Nana & Papa’s this weekend and having a great time I am sure.  Pray for them as they are going to get shuffled around a bit for a while. 

Thank you to all who have been and continue to pray for Josie – she needs it.  Thank you to all of our family and dear friends that have surrounded us – we need it.

Blessings,

Marc & Darcia

Tumor is growing...

September 24, 2010  growing…

It is with a heavy heart that I post an update for Josie.  This past Thursday, Josie had another MRI to check on the remaining portion of her tumor.  Unfortunately, her doctor told us that it is growing once again.  L  We were quite shocked to say the least.  My thoughts going into this check-up were that the tumor was either the same as the last time or my hope was that it would be smaller and going away.  I quickly remembered the nauseas feeling I had when we were first told that she had a brain tumor right after her birth, because I was once again feeling nauseated.  We were shown the images of her tumor and the doctor compared the before pictures and the after pictures.  I couldn’t believe what he was saying, yet I knew he was telling us the truth. 

Because the tumor is growing, Josie will be going in for her 3^rd brain surgery (her biopsy was an actual surgery) in 2-3 weeks from this post.  A date has not been set as our doctor wants to have the other pediatric brain surgeon in Josie’s surgery with him and that doctor is not back until next week to make the appointment. 

The doctor took Josie’s case to the “Tumor Board”, which is held every Friday.  This Tumor Board is made up of 30-40 doctors/PA’s and other specialists that make decisions on tough cases within the hospital.  They all agreed that this is the route that needs to be taken for Josie’s tumor. 

As for our other concern, her feeding tube, it has now become a lesser inconvenience in light of what she is up against.  She is still having reflux multiple times a day (went through 4 outfits today) and sometimes it really hurts her and other times, we don’t even realize she has something coming out of her mouth.  We did have an ultrasound of her stomach and everything is in working order according to that screening.  The doctor (neurodevelopment) has started Josie on a new medicine, but it doesn’t seem to be helping…yet.  

The one thing that we must do is to keep Josie healthy.  She has to be “sick free” in order to have the surgery.  We will now need to keep Josie home as much as possible.  This will be difficult, especially with kids in school now and germs are everywhere.  We have noticed that she is pulling at one ear and that is a concern as to whether or not she has an ear infection.  I will be calling her pediatrician on Monday if it continues. 

Tonight I am struggling with letting my baby go through this whole ordeal again, yet knowing that she must undergo it for healing to take place.  There is that fear of the unknown and what will happen during this surgery.  As I was praying over her tonight while I rocked her to sleep, I had to fight the urge to grasp at the situation and try and control it (which I can’t very well do anyway), or open my hands and give it to God.  I think a few of my fingers were pretty reluctant to let go.  My heart is still sad and grieving, but my heart and Josie are in a safer place – God’s hand.

Please pray with us as this rollercoaster starts up all over again.

Blessings,

Marc & Darcia

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...

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

Post Biopsy

7/14/10 Post Biopsy

Praise God!! Josie came through the biopsy surgery incredibly well!!! She is sedated and on pain meds yet and will be for a while - she has a few more tests that she needs done in order to help the doctors in her prognosis and what the next steps will be for her journey. The biopsy was taken without much bleeding - which was the main cause for concern during this process. At this point, that was a positive during this process. The biopsy will now need to be processed and we will hopefully know more by the end of the week. At this point, we will take this as a good step for Josie.

God has heard our prayers and we are so humbled by how many of you are praying.

Marc and I decided on the name for Josie, mainly because we liked it. When I later looked up her name, it means:

Josie - God will give.

I am looking forward to seeing what God will give throughout this journey - he has already given so much by giving us such an incredible daughter.

Blessings for this evening. Darcia