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

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