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

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

G-tube and Skull surgery

April 30, 2011

We received word that the members of the tumor board were in agreement that Josie's tumor is not growing and somewhat improved.  The neuro-surgeon was in favor of replacing Josie's skull bone, in fact, he would like to get it in sooner rather than later in order for it to start growing.  The cotton balls that are in her head from the last surgery are going to remain where they are for now.  The neuro-surgeon said that they are not causing a problem and could remain in there for years without any medical concerns.  He was more worried that if he removed them now there would be bleeding problems again and then we would be back to square one.  Unless there is a medical necessity to remove the cotton balls, they are going to stay until a later time.  Marc and I are in agreement with this decision and have no concerns with leaving them in her head. 

Based on this response, they would also like to go ahead with giving Josie a G-tube for feeding and nutritional support.  Although this is another surgery for her, we are in complete favor of having this done because it will mean that she will no longer have to have tape on her face and a tube going down her throat.  We have always thought that this was a major factor in her gagging and hope that it will help her in wanting to learn how to eat and drink. 

Josie will need to take a break from one of the chemo drugs (Avastan) that she is currently receiving, since it inhibits the healing process in her body and for obvious reasons, she needs to heal from both surgeries.  At this point, she had her last dose of this drug on April 22 and will not receive another dose until July 8.  She will continue to receive the other two drugs during this timeframe.

The two surgeries could not be done at the same time since the g-tube surgery is considered a "dirty" surgery and the skull replacement must be an absolutely sterile surgery. 

The G-tube surgery will be first surgery and will be scheduled sometime during the week of May 23 and most likely it will be an outpatient procedure.  She may possibly have to stay overnight for observation based on her history, but that is to be determined yet.  We meet with the g-tube surgeons this coming Friday, May 6 for a consultation and from there the date should be set for the surgery. 

The skull replacement surgery will take place sometime during the following week of May 30.  This will be a stay of 3-5 days, as far as we know.  I will be calling the neuro-surgeon's office this coming week to start those arrangements. 

Meanwhile, since Josie will need the other chemo drugs, those have now filled up the calendar and the month of May just got REALLY busy!   We are not complaining though - the MRI and Tumor Board response have been so encouraging and we feel like she is in great hands.  She is loved by so many people and that includes the medical staff.  Every time we go to clinic, there is always a little party surrounding Josie when we get there because the nurses, doctors and techs all have to come see "their Josie"! 

We are looking forward to this next step in her life and also seeing how God is going to continue to work through this precious kiddo.  Our constant prayer for her is that God will be seen clearly through her life - because it's not about her or us, it's always about Him.

Many blessings,

Marc & Darcia

MRI results

April 26, 2011

We are cautiously optimistic.  This is the only way that Marc and I can think of to explain the outcome of Josie's MRI.  Josie's Oncologist was modestly pleased with the new MRI and felt that the chemo was working.  Here are the bullet points of the preliminary results (more information to come Friday after the Tumor Board meets):

* The tumor has not grown, which means the new chemotherapy is doing what it is supposed to be doing.

* The tumor has not necessarily shrunk, but it appears to have changed and the area of the tumor looks "cleaner" than the last MRI in February.  This is a good thing.

The MRI still needs to be read by the Neuro-Surgeon and will go to the Tumor Board this coming Friday.  Things that need to be determined at the Tumor Board are the following:

* When to replace her skull bone and take the cotton balls out from her last surgery.

* When to do surgery for a G-tube in her stomach.

* If and when to do a stem cell harvest - which would be needed for the last rounds of chemotherapy at some point in time.

* What type of chemotherapy to use in the coming months - another round of inpatient was given as an option. 

We are encouraged with this first consultation, but also realize that we are still in the midst of this battle with cancer.  Josie still has a long road ahead of her.  The bright spot is that the doctor is extremely encouraged by how well Josie is developing.  She gave him some good smiles and showed him how she can really get rock'n!

After Friday, we will give another update as the pieces fall into place for Josie's treatment.  Thank you to all those that are praying for us - we have felt the peace of God in the midst of all that is happening this week.  When we think that we should be worried and anxious, we have been supplied with peace.  When we are tired and feel like we are at the bottom of our strength, there is always someone that steps in and helps us or gives us a word of encouragement to keep struggling well. 

May God be praised,

Marc & Darcia

New unexpected news

February 18, 2011

This will be a short update as I am very tired after a long emotionally and physically draining day at the hospital with Josie.  The day started with a 9am appointment at the Heme/Onc clinic where they checked Josie’s blood counts to see if she needed any transfusions.  She didn’t end up needing a transfusion, but had she needed one, she would have needed it before her surgery to replace her broviac at 2:30pm, thus why we needed an early appointment.

The Broviac replacement surgery went much longer than expected and they ran into a few complications as Josie has an occluded vein in the right side of her chest.  They ended up putting it into a different vein than they usually use, but were able to get it in.  I left the hospital for the day at 5pm. 

After her blood counts came back, Josie’s primary Oncologist came to speak with me.  Earlier in the week Josie had an MRI and the phone call we received from the Oncologist at that time was that he was encouraged and saw some shrinkage in the tumor.  He told us that the Neuro-Surgeon still needed to review it and that her case would go to Tumor Board on Friday.  We were also encouraged at that time.  This time though when I talked to the Oncologist, it was a bit different story.   The tumor has shrunk on the right side of her brain, so that is evidence that the chemo has been working.  Then he told me that a different part of the tumor has started growing into the left side of her brain.  I was completely caught off guard by this news.  As I tried to wrap myself around this info, the oncologist immediately said we should go take a look at the MRI so that I could see what he was explaining to me.  He pulled up the last MRI and the one done earlier this week and with my untrained eyes for reading such images, I could even see the growth on the left side of her brain. 

The plan at this point is to change Josie’s chemotherapy treatment plan.  She will be receiving a very potent regimen of 2 new drugs.  This treatment plan is all outpatient, so we will have 2-3 appointments a week at the Heme/Onc clinic, but will not need to stay at the hospital.  Josie will have 2 rounds of this chemotherapy and then they will do another MRI. 

We are still whirling from this news – it was not what we were hoping for, but know that God is not surprised and still has our lil’ Jo in His hands. 

Still on our knees,

Marc & Darcia

Sodium problems

December 12, 2010

Today didn’t start off quite as well as I was hoping.  The doctor came in this morning and said that Josie’s sodium levels are not staying where they need to be and that this is of great concern.  They are working on getting her body what it needs, but it appears to be a symptom of the tumor and brain injury. 

The doctor suggested that she might go back to PICU since that is more of their specialty, but was also good with her staying on the Hem/Onc floor if they could get her sodium regulated.  So we wait. 

Josie appears fine and has given us lots of smiles and sweetness so far today. 

We are definitely in need of prayer today. 

In Him,

Marc & Darcia

Next Surgery Date

September 30, 2010  Next Surgery

We received the call yesterday for Josie’s surgery date.  She will be going in to the hospital on October 19 for a procedure called embolization.  This procedure will be done to block the veins that are running to the tumor so that when they do the operation the hope is that she will not bleed like she did during the first surgery.  The actual surgery will take place the following day on October 20^th.  The same doctor will be performing the surgery and we are more than confident in his abilities.

We are now in the process of figuring out how everything will work during that timeframe for the rest of the family since the girls are both now in school.  My mom is coming to help some of the time and we will work out the rest of the logistics as we know more. 

We continue to covet your prayers…we know God is at work in this beautiful little lady!

Blessings,

Darcia & Marc

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

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.

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