Unexpected visit continued

June 21, 2011  Unexpected visit continued…

We are now at the end of day 9 of the unexpected hospital visit.  Josie has been a bit of a mystery once again to the doctors.  The fever and the rash are not explained – they are still treating her with antibiotics to make sure it wasn’t something bacterial, but nothing grew from the blood cultures that they took to pinpoint it as such.  Aside from the fever and rash, Josie’s blood counts started to drop and then they bottomed out and have been hovering at the bottom for the last 4-5 days.   The latest conclusion is that Josie had several factors that affected her blood counts.  The first is that the higher dose of chemotherapy that we administer to her at home, had finally hit her threshold, causing her counts to drop (similar to the chemotherapy she had inpatient) and she also contracted a virus of some type.  The combinations of those two things have wiped her out.  It is taking her body a while to bounce back from the attack it has had on it.  One doctor has let us know that Josie is not critical, but it is just going to take time.  Josie’s blood counts have to be at a minimum number and show that they are rising in order for us to take her home.  Currently her infection fighting cells are at zero, so she is considered neutrapenic – or at high risk if she were to get something else.

At this point, she has had 2 platelet transfusions and today she received a red blood cell transfusion.  She was starting to look a little pale and her lips had very little color, so I knew she was low in red blood cells even before they told me.  She is much pinker tonight and hopefully feeling better with the transfusion. 

Tonight I did find that she may have a little bit of a yeast infection – I immediately put on her “Magic Butt Cream” (no lie…that’s what it is called!), which has medication in it for clearing up a yeast infection.  The doctors will check on this in the morning to see how she is doing.  She may also be running a little fever now – hoping for nothing new, but glad that the nurse tonight is so concerned.  More blood cultures being checked.

Meanwhile, the other girls are having a blast going to day camp and then spending the rest of the day with their good friends.  They are wiped out when they get home, but they are having a great time.  Marc and I are once again like ships passing in the fog.  I saw him for a whole 15 minutes today and that was 10 minutes more than expected since the PA was in the room talking to both of us this morning.  This is a crazy life! 

That’s all for now and hopefully an okay night of sleep here with Josie.

Blessings,

Darcia & Marc

Josie's unexpected hospital stay

June 15, 2011

This past month has been a flurry of busyness. Josie’s last MRI showed that there was a slight improvement and therefore they made the decision to give her a break from one of the chemo drugs that inhibits healing. This was done so that Josie could have two surgical procedures done; the first surgery was the placement of a g-tube (or button) for feeding along with the Nissen procedure that would help stop her reflux. The second surgery was to put her bone flap back into her skull. With these plans in place, we started a laundry list of doctor appointments and pre-operation “to-do’s” as well as the typical chemo appointments at the clinic and various therapy appointments.

The first surgery for the g-tube was on May 23rd – all went well with the surgery and the doctor was done in about 2 hours. We were looking forward to being able to see Josie without the tape on her face and also for a reprieve from her reflux. The Nissen is a procedure where they take the top corner of the stomach and wrap it around the esophagus and then sew it to itself. This allows food to go down if eating by mouth, but then the food cannot come back up. We had been told many times prior to this surgery that Josie would probably never be able to throw up, reflux or even burp once she had the Nissen procedure. The day after surgery, they started giving Josie her formula through her g-tube. To our surprise and pretty much everyone else’s surprise, Josie refluxed through her Nissen. We thought that perhaps they had started her with too much in her stomach and that the sheer force of the volume is what brought it back up. We were okay with that concept…at first. The second day after surgery, Josie continued to reflux through her Nissen and then they kept us there for 4 more days trying to figure out how to keep food in Josie’s belly. They finally sent us home after 6 days at the hospital with a slow program for how to increase Josie’s food intake. We left on a Sunday and by Monday, we were calling the doctor’s office because Josie was not only refluxing formula, but medication and doing so in large quantities. On Wednesday we took her to have an upper GI done so that they could check the Nissen and the g-tube sight. The upper GI showed that the Nissen did in fact fail – they could not tell precisely why, but they could tell that she was able to get reflux up the esophagus and that shouldn’t happen with a Nissen. After much discussion, the decision was made to change Josie’s g-tube to a gj-tube, BUT they could not and would not change it until her g-tube sight had healed for at least 3 weeks or more. Therefore…Josie once again was given an NJ tube – which is the same tube she had prior to surgery and now has tape on her face again. We were so disappointed. We were right back to where we started from, except now she had a new piece of equipment extending out of her belly that we couldn’t use.

Even with the new tube in her nose, her reflux is really bad and Marc and I cannot get a full night’s sleep because she is coughing, gagging and throwing up.

Josie’s skull surgery was on June 8 and both of us are looking forward to getting over this next hump in the journey. The surgeon wasn’t sure how the bone flap would fit into the hole in Josie’s skull, but he had multiple routes that he could take, and we were comfortable with all of them. The surgery was targeted to start at 8:30am and she was off to the OR right on time, with the anticipated timeframe of 2 hours for this surgery. At 10:15, one of the nurses came out to give us an update and said that they had just got her positioned and that the surgeon took great care to make sure she was exactly where he needed her to be. That being the case, they had only started the surgery 10 minutes prior to the update, but already things were looking good. The bone flap was almost the exact size of the existing hole; in fact, he had to trim it a little to make it fit just right. At a little after noon, we got the word that all went well and she was in recovery. We all let out a sigh of relief! Josie was finally being kind to the surgical team and took it easy on them!

We were sent home after only 2 days post-op – record time for any of Josie’s hospital stays. Marc kept on saying “okay, when’s the hammer going to drop”, because it seemed to be going a little too well for a Josie situation.

He wasn’t too far off…we came home on Friday and then on Sunday, Josie started running a fever (took her temp 4 times!) and she had a funny rash on her belly. Since she is a chemo kid, we are supposed to call in if she has a temp over 100, she was at 101 and 102. We were told to take her right in to the ER. When we got there, they moved us right in – no waiting in the waiting room for us, this was serious. We have been in the hospital ever since and without any real answers. They took blood cultures and nothing has grown to indicate that there is an infection. Josie’s torso/back and diaper area started out screaming red and looked like a bad sunburn – the kind where you touch your skin and your finger leaves a white mark because it is so red. Her fever is gone and she is on some pretty high doses of antibiotics. We were hoping to go home today (Thursday), but Josie has started having diarrhea and her blood counts are down. Josie is acting much better and has seemed herself for the last 2 days and the rash on her belly is looking better – not so red. This is a hospital stay we were not anticipating, but the doctor was and is so glad that we got her in when we did.

We are so tired, we feel like we need a break, but know that with Josie there may not be much of a break. She is so worth it though – sure we would love it if she didn’t have cancer, but this is her journey and there is a purpose so much bigger than we can see. We rejoice at the littlest things and savor them so much more because of this journey. She has started sitting up on her own – she wobbles because her left side is not as strong and she can’t catch herself, but she is learning to compensate. She has two teeth – one is all the way through and one is still trying to break through. Her left arm surprises us and she will make it move when we least expect it. The small things, but huge for Josie and for that we are content.

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

Easter MRI

April 23, 2011

What a mighty God we serve.  We are so thankful for Easter, to remind us what God has done for us.  This year though, we are even more aware of His presence than ever - due to our sweet Josie.  The day after Easter, Josie will be going in for an MRI at noon.  This MRI has us constantly on our knee's and asking God to clearly show us His plan for Josie.  Our prayer is that the tumor will have shrunk with this new chemo regimen that she has had 5 doses of over the past 2 months.  On Tuesday, April 26, we will meet with Josie's Oncologist to go over the results.  Most likely her case will go to the Tumor Board on Friday.  We know that God is in all of this and that we are not walking alone - not by any means - He is with us, and we know that so many of you are walking with us too. 

Please keep us in prayer this next week!

Blessings,

Darcia & Marc

Milan's Miracle Run Info

One of Josie’s wonderful nurses from the inpatient Heme/Onc floor shared with us that there is an 8K Run/5K Walk on Sunday, May 1^st to support research for Pediatric Cancer.  Any funds raised from the race will stay here in West Michigan for research.

The research will specifically target the top 8 pediatric cancers in West Michigan.  The top 2 pediatric cancers are brain tumors/cancer and leukemia.  Obviously this impacts us greatly and is near to our hearts. 

Marc and I are planning on signing up (for the 5K walk – we don’t have time or energy to train for the 8K!) and would love to see others support this research and ultimately support Josie.

If you are interested, here is the website with more information about the race and registration.  Early registration ends March 31^st – hurry and register if you want the lower rate.

www.milansmiraclerun.com

Please send us a note if you do sign up – we would love to know who will be there with us. 

Blessings,

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