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

Specialists...

September 26,  2011

September is going by so fast!  School started and we have seen almost every specialist that Josie has during this month.  Makes for very busy days and weeks.

Josie is doing well and seems to be turning some developmental milestones, of which we are so extremely excited to see.  She has started really sitting up on her own - for long periods of time.  Once she gets leaning to the left though, she can't catch herself due to the weakness in her left arm.  So even though she is sitting, we are still right next to her the whole time, she doesn't need any bumps and bruises from falling over.  As for her speech, she has started to say "mama"...not necessarily related to her actual mama. :)  She uses the "mama" sound for when she is happy and babbling as well as when she is hopping mad.  We've started to hear a few other sounds, but that is the main one right now, I must say, it is precious to hear!  As for other things she is doing, she is starting to love the simple baby games, such as peek-a-boo and leaning backwards because she wants to go upside down and she is learning that she can make fun sounds by pounding her hand and foot on things.  These are all great things to see her start doing and does our hearts good to see her learning and developing.

The reflux issue is back with a vengeance.  We had quite some time where the reflux was hardly happening - we weren't even carrying burp rags around with us anymore.  Then one week it started up again - nothing changed in her care, but it came back and has been non-stop.  Mornings are the worst and tend to be more painful and traumatic to Josie with lots of crying.  This last week has been a bit worse because she also got a cold and the drainage made her reflux more than usual, plus we were having to wipe her nose too.

Today Josie went in for an Upper-GI to see if something was triggering her reflux.  They do this under fluoroscopy and inject barium into her stomach through her g/j tube.  The procedure was going along fine, aside from Josie not caring for being strapped to a board and being turned almost upside down, but then they decided to add a little more barium to her stomach for better imaging.  It was like Josie was a volcano and barium came spewing out of her.  It was everywhere!  Needless to say, they got a good image of what happens when she refluxes!   Unfortunately, the PA that was doing the procedure said he didn't see anything out of the ordinary and that perhaps it is neurological.  Back to square one.

Last week we met with Josie's Neuro-surgeon that replaced her bone flap in her skull.  This was a follow-up visit to the surgery that was done in June, to see if her body was accepting the bone and healing.  As soon as he felt her head, he shook his head and said that the bone didn't take, her body was absorbing it.  We were definitely bummed, but thankfully God had already prepared us for this news.  Several weeks ago both Marc and I had started feeling soft spots on Josie's head and as the weeks continued the spots were getting softer.  We had a feeling that the bone hadn't taken and already had time to process this information - the doctor just confirmed it for us.  Aside from this news, the doctor was extremely pleased with Josie's development as well as he is in agreement with her oncologist that the chemo is working. 

What happens next?  Well, Josie now has the same soft spot, so we are just careful with her on that side and the doctor has ordered a helmet to be made for her.  Not so much for protection, but more as a shaping helmet.  Time will tell if it will mold her little noggin.

This week was her ophthalmologist appointment.  We have been worried about Josie's left eye for the last couple of months because it can tend to wander.  The girls have dubbed it "Josie's funky eye" thing.  Thankfully the eye doctor was very pleased with Josie's eyes and the progress she has made since the last time he saw her.  She does have some wondering in her left eye, but hopefully patching her eye for an hour or so each day should help strengthen her eyes.   She also has some peripheral damage, but at this point, he is just going to put it on the "watch and wait" list in her chart.  Her sight seems to be appropriate in all the other areas.  We are thankful for sure, now we just have to get her to leave her patch alone.

Over all, we are so glad to be home and getting into a routine of "normal" life.  We are praying that we will not have any unplanned hospital stays this year.  After this month, hopefully life will slow down - at least as far as appointments go.  

Josie is a true gift and we are blessed by her daily.  Thank you to all who are continuing to pray for us, we are still in need of it and know that God is hearing these prayers 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

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

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