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

Christmas update

December 9, 2011

Christmas is almost upon us and what a different Christmas this will be for us from last year.  We were in and out of the hospital at this time last year and Josie’s MRI in January had showed us that the particular chemo she was on was not working like they wanted it to on her tumor.  Now fast forward 10-11 months on a new chemo regiment and the tumor is still there, but responding to this chemo (as of August’s MRI).  Praise God for this encouragement. 

Josie will be having another MRI in January (date not scheduled yet) and we will see then what the tumor is doing.  Our prayer is that the tumor will be drastically reduced and we can have a better management plan of what needs to happen next.  At this point, her doctor has scheduled us for 6 more months of chemo.

We haven’t posted in quite a long time and you can assume in these quiet times that things with Josie are going fairly smoothly.  But…since we haven’t posted in so long, here are some highlights of what has been going on in her life and ours.

Many have asked about Josie’s reflux issues and many have told me that they are praying specifically for this problem.  Thank you!  Reflux continues to be the outward sign of the many complicated issues going on inside Josie’s body.  We have been told that her reflux may be caused by neurological disconnects and that it may not respond to typical treatments.  We have also found that reflux is cyclical, which means at certain (or uncertain) times Josie will have a break from her reflux and then it will start again.  We experienced one of these breaks for about 3-4 weeks in October and November.  We thought that a new med we started her on in October was the answer, but now realize that it was coincidental to the end of a cycle.  After her reflux started up again in mid-November, the doctors had us up her dose of this new med.  Now we know the medicine does work and has minimized her reflux, although it has not stopped it. 

The other significant aspect to this new medicine is that the med is typically prescribed to help low tone in muscles.  In Josie’s case, the med was not prescribed for that purpose, but we have seen a huge improvement in the movement of Josie’s left arm since starting the medication.  We count this as a real blessing and we think Josie does too!  She is so pleased with herself when she gets her left arm up and can clap or pat it with her right hand.  We have started Occupational Therapy for the left arm and our hope is that we will see some real progress in movement and strength. 

The newest development is in her mobility.  She has learned the fine art of rolling over – from her tummy to her back.  At times she needs a little assistance, but is starting to do it all on her own.  The pride in her eyes is priceless when she finally gets herself over and realizes it was her own strength that rolled her over.  She also wants to get moving in the worst way.  We have been working with her by putting her on her hands and knees.  As soon as we put her in this position, she starts rocking herself as if she would like to crawl.  Her left side is weak, so we are supporting her the whole time she is in this position, but she is getting stronger and hopefully she will be able to support herself soon. 

At Physical Therapy, they are working on getting her body moving and they are doing that by making her walk on the tread mill!  When the therapist told me she was going to put her on the tread mill, I was a bit skeptical, but they have this cool harness contraption that Josie kind of hangs from this while the therapist helps her move her feet.  She really likes this exercise and is starting to put a little effort of her own into moving her right foot, her left is going to need more support and help.   

If you have seen pictures of Josie lately or seen her in person, she is now sporting a pretty pink helmet with lots of butterflies on it.  Josie’s neuro-surgeon prescribed a helmet for her to wear to help shape her head as well as keeps her soft spot safe.  When we went to Mary Free Bed to have her scanned to get a helmet made, the orthotist was a bit uncertain of how to do a helmet for her because he has never made one for a child that did not have part of their skull.  He was also not sure that a helmet would even mold her head, since most babies are between 3-8 months for the best possible shaping time and Josie was just getting fit for one at 15 months.  We just had her first size check and her head has moved 3mm in just 2 months time!  It’s working!

We were worried that Josie would absolutely hate her helmet, since she really dislikes hats on her head.  As I was on my way in to the first trying on of the helmet, I realized that I had not given this fear/worry over to God and right then and there gave it to Him.  The orthotist brought in the helmet and from the very first time he put it on her, Josie LOVED it!  As soon as it was strapped on, she took her little fist and banged on it and then broke out into huge smiles!  Answered prayer!!!  She wears the helmet 23 hours a day and she has not cried a bit about it. 

As for teaching Jo to eat, we moved our therapy to Mary Free Bed’s feeding therapy program.  The therapy started in September, with therapy twice a week.  This past week Josie was discharged from therapy.  Josie hasn’t learned to eat yet, but we have learned a lot along the way of how to help get past the aversions of touch to her mouth.  Food is going to come down the way for her.  Since she gets chemo every two weeks, we were going one step forward and then one step backwards because her stomach would get rocked from the chemo and we’d have to start the process over.  We feel we have been given the right tools to continue on without therapy and can maintain the things we have learned.  Plus…that free’s up our schedule quite a bit, which is refreshing for a change.

Josie is developing in such fun ways right now.  We had mentioned previously in a post that she was starting to say “ma-ma”.  Then within a day or two of that post, she regressed and wouldn’t say it anymore.  So much for a proud “ma-ma”!  Now in the past few weeks, she has started to say it again and this time we can tell she understands that she is communicating with us. 

Her personality is really coming out as well and we have found that this kiddo has quite the sense of humor and is a bit mischievous!  She will grab a toy on her high chair tray and wave it around while we watch her and then as soon as we aren’t paying attention anymore, she throws it overboard and then smiles and laughs at the “trick” she just played on us.   I remember our other girls going through this stage, but for Josie it is a real milestone for interacting with us. 

Time to bring things to a close, I could go on and on about the many aspects of this sweet baby.   We are so thankful for the progress she has made and the loving nature that she has throughout all of the things she is going through. 

We are looking forward to a wonderful Christmas of celebrating another baby – the most important baby, Jesus.  We couldn’t be where we are without Him.  We are blessed!

Merry Christmas,

Marc & Darcia

Baby Dedication

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