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

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

Birthday Party rescheduled

August 11, 2011

Hello all.  Well, as you may have noticed, there hasn't been much as far as Josie updates lately.  In our minds, that is good.  It means she's behaving herself.  :)  The past month has been relatively quiet, with only one trip to the ER, which thankfully did not result in a hospital stay.  She had some sort of fever that, of course, went away as soon as Darcia and Jo reached the ER (at 3:30 am).  They were home by 7:30, and things have been pretty good since then. 

Josie has started up Physical Therapy again, at the Rehab Center and at our house.  She's also got Speech Therapy, and is back in the swing of things as far as chemo goes.  Josie continues to grow, and has started a new diet this week.  Hopefully that will give her the nutrients and such that she requires as a 1 year old.  I guess baby formula only goes so far. 

Darcia has been pretty busy getting Josie to various appointments, juggling things around the house, and setting up appointments and get-togethers for Reese and Eliza.  Also getting things ready for back-to-school time.  That should make things....more busy, I suppose! 

Anyway, we haven't fallen off the face of the earth, we're just back to our "normal" life with Jo.  Thanks so much for your continued prayers and thoughts. 

We hope to see you at Josie's birthday celebration, if you can make it!  (August 20, 1-4 pm, Blythefield Hills Baptist Church, Rockford, MI, open house, no gifts please!). 

Fever & Seizures

July 8, 2011

One month ago today, Josie had her bone flap in her skull replaced.  Time at the hospital is kind of like the “Twilight Zone” – fast and slow at the same time.  For the life of me, I can never remember what day it is and sometimes even what month we are in.  The one thing I do know is that we were supposed to celebrate Josie’s birthday tomorrow with everyone and of course that has been postponed since the birthday girl is still in the hospital.  There have been some talk of the “H” word (home) by her actual birthday – July 11 (Monday), but the doctor has made sure we know that is only a “thought” at this time. 

Meanwhile, as we continue to wait to go home, I can at least catch all of you up to date on what has happened since the 4^th of July.  Actually let me back up to just a little before that date to give you some idea of how Josie ended up in the PCCU (Pediatric Critical Care Unit).  We had been told last Friday that we might possibly go home over the weekend, if Josie’s counts continued to go up – we had a little hope of this, since she finally did have counts and it was a big deal.  We would have to give her shots at home, but they thought she would be okay if things continued to progress.  Well during Saturday and Sunday, her counts went down and then up and then down and then she needed transfusions, so we knew we were not getting out until at least the following week.  We were still hopeful even with these setbacks to be home in time for the birthday bash and even on Monday morning, the doctor thought maybe Wednesday or Thursday for going home.  It would be a crunch, but we decided we could do it in order to still have her party.  Josie had other ideas…

Monday afternoon – things for Josie turned terribly sour and caused quite a commotion on the 9^th floor.  Josie spiked a high fever – not only did she spike, but it came out of nowhere.  She had not had a fever since June 22 and she hadn’t even had a fever that morning.  When she spiked, the nurse and I noticed possible seizure activity, but it was not more than a blip and then she was fine.  They had just ordered blood cultures because of the fever and the resident doctor was consulted, but the consensus was to watch her and see if this fever went away as quickly as the others.  Josie had been crying out in pain during this time too and I was starting to get a little panic stricken with these symptoms.  I decided to get her calmed down, laid her in bed and went to the bathroom so that I could come out and just hold her while we waited this out.  When I went into the bathroom, she was calm, when I came out, I noticed she was not responding to me and then I sat her up to try and get her make eye contact with me and she was completely limp.  I quickly ran out to the nurse’s station and told them she wasn’t responding.  When the nurses came in they found her in a seizure, her oxygen level had dipped extremely low and she was turning blue.  From that point on – everything became a blur – they called a “code blue” and literally within seconds, her room was filled with doctors, nurses, respiratory techs and multiple other people.  Josie’s seizure meds were not up to her normal level and when someone has a high fever, automatically the threshold for having seizures drops.  The combination caused a severe seizure.  They were able to stop it with a powerful drug and then whisked her off to the PCCU, where we stayed for 2 nights until they were comfortable that her seizures had stopped. 

The fever this time had been brought on by a bacterial infection that got into her blood.  She is now on an antibiotic for that infection and seems to be doing well – i.e. no fevers for the past 48 hours.  This antibiotic is done through her IV and is the complicated reason we may or may not go home.  We have not had to access her IV line at home other than to keep it clean and flushed.  The antibiotic treatment is a couple weeks long, so the doctors are mulling over if they want us to do it at home. 

Yesterday Josie had a CT scan and a bone scan to check her head to see if there was a secondary infection area where her bone flap was replaced.  Thankfully these scans came back clear and negative for infection.  Praise God for that!  The doctors that ordered these scans wanted to make sure that they weren’t missing something else.  We so appreciate the thoroughness! 

At this point, that is the latest on Josie – we are constantly hoping and praying for healing, recovery and getting home.  A friend sent us this verse earlier this week and it has stuck with me and sums up where I believe we are at:  Psalm 119:81  “I am worn out waiting for your rescue, but I have put my hope in your Word.” 

Blessings,

Marc & Darcia

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

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

Chemo, chemo, chemo

January 22, 2011

This is about day 10 of working on an update – honest, it really is!  We are home with Josie and most people would think it would be easier to get to an update, but on the contrary, life at home is just about as chaotic as the hospital routine, if not more so, but in different ways.  At home we draw and push medicine, we are the night care givers (you really get used to having nurses and techs help out in the middle of the night!), we are Josie’s appointment keepers and then just regular ole “mom and dad”!  Plus we are still trying to adjust to life with 3 children – every hospital stay starts the adjustment process all over again. 

We have been asked by numerous people when an update will be posted – hold on to your seats, cause this one will be a long-winded one! J

Round 3 of chemotherapy is done!  Josie came through like a champ – even surprised the doctors once again!  Each time Josie has chemotherapy, there is always one chemotherapy drug that is really strong and will be harsh on her body.  I believe I posted this a while ago, but Josie has 2 types of cancer within her brain tumor.  One cancer is called a glioma (general cancer term) and the other is called a PNET (acronym for a very long cancer name).  When Josie gets treatment, she gets one round of a 3 drug regiment to attack one type of cancer and the next round is a 4 drug regiment to attack the other type of cancer.  For those that like details, here are the drugs:

3 drug treatment:

*Vincristine (1 time a week for 3 weeks) – given in a syringe to her broviac line over the course of a minute. 

*Temodar (1 time a day for 5 days) – given in a syringe through her feeding tube

*Carboplatin (1 time a day for 2 days) – given through an IV bag over the course of an hour.  This is the strongest drug in this treatment

4 drug treatment:

Vincristine and Temodar (same as above)

*Etoposide or called VP-16 – (1 time a day for 10 days) given in a syringe through her feeding tube.

*Cytoxin (1 time a day for just 1 day) – given through an IV bag over the course of a couple hours.  (I think that is how this one is done – regardless…it is something like this)  This is the strongest drug of this treatment.

During round 3 (which was the 3 drug treatment), Josie seemed to handle the chemo in different ways.  The first time she received the 3 drug treatment, they only gave her a half dose of the strong drug because they weren’t sure how she would handle it.  This time they gave her the full dose.  The drug did make Josie sick and she ended up throwing up a lot, she was also agitated and would sleep fitfully - in general she just didn’t feel well.  We had a hard time watching her go through this round and did a lot of praying over her and holding her to try and make her comfortable.  The surprising aspect of this round was that Josie’s blood counts never really took a nose dive.  The blood counts did drop some and they still gave her medicine to help boost her white blood cells, but by day 12, which is at the end of the cycle, they were surprised that her blood counts were holding steady.  We ended up going home earlier than expected and we were good with that!  We are so thankful and know that God had His hand on her through this round.  I had gone into this round somewhat fearful and God showed me that He had everything under control – there was no need for my fear, it obviously did me no good!  I’m learning a lot about faith and trust; that is for sure!

Although Josie did well during this round of chemo, the last six months (yes, Josie turned 6 months on January 11!) is catching up with us and we have felt more exhausted.  Here’s an example of a typical week in our life while Josie is at the hospital:

Sunday night – Marc stays overnight at the hospital and leaves for work on Monday by 7 or 7:30 – the Techs and Nurses keep an eye on Josie until Darcia can get up to the hospital after getting both girls off to school – usually around 8:15.

Monday/Tuesday – Darcia stays at the hospital w/Josie and will stay the night and then stay all day on Tuesday until she transitions w/Marc at around 5:00 – we see each other for 2 minutes (literally) and then Darcia heads home to pick the girls up from a friend’s house and settle in for dinner.  Notice that Marc and Darcia will probably not see each other on Monday, as he will pick up the girls on his way home from work and Darcia is at the hospital. 

We then flip/flop like this throughout the rest of the week. 

We have truly been blessed by so many friends and family have swooped in on us and made these low times do-able and many have made sure that Marc and I are getting quality time as couple.  Thanks to several good friends, (who have become my personal day planners and phone callers), we have multiple people coming up to the hospital to sit for a few hours here or there so that we can both be home for dinner a couple nights a week with the girls or sometimes Marc and I even get to go on dates and that is truly priceless! 

Friends from my previous Teacher Education department at Cornerstone gave us a gift of 2 webcams – one for the hospital and one for home and that has been a fun treat – especially when I have been at the hospital for 2 full days – it is refreshing and sweet to my soul to see my girls and they can see me and Josie! 

We have not had the girls come up to the hospital very much because of the flu and sickness season (seems like everyone has either strep or the flu) – with Josie getting an infection in the last round of chemo, we are being very careful.  Any volunteers that come to sit with Josie need to be healthy and should not have been exposed to anyone with a fever or other illness that is contagious.  Right before Josie was admitted for this 3^rd round of Chemo, our daughter Eliza (4) came down with a red, itchy rash all over upper body – her chest, back, arms and face were covered.  I took her in to the doctor and found that she had Fifth disease (the 5^th disease to be discovered that had a red, itchy rash – clever huh!?).    This is a very common and non-threatening rash, never-the-less, Josie had been exposed.  All was well and Josie never developed the rash and neither did Reese – Praise God!

Speaking of our break:  prior to round 3, we were able to be home with Josie for Christmas!  What a blessing!  We were home for around 11-12 days and during that time; we had a surprise blessing from Josie – her reflux mysteriously went away.  Technically it stopped at around the same time she had sodium problems. Such a pleasant change!  Since this 3rd round of chemo and being sick from the drugs, she has started refluxing again.  The reflux has slowed down from what it was, so we will continue to enjoy at least fewer changes of clothing! 

The Monday before Christmas, the girls were surprised with having Santa come to visit them – AT OUR HOUSE!  A rep from an early care for ill children program called a few weeks before Christmas to set this up and at first I thought that this wasn’t necessary and our girls know that Santa isn’t real (sorry if I just popped a few bubbles!) and that he is just a fun figure at Christmas time.  Then I changed my mind and thought the girls would love having Santa come to their house.  It was well worth it, for sure!  He told the girls that on Christmas Eve he goes to everyone’s houses, but that Mrs. Claus has a VERY special list of children and those are the ones that Santa goes to see before Christmas.  Reese, Eliza and Josie were on her VERY special list this year.  He was a great Santa too – real beard that was perfectly Santa and he had a beautiful suit – not a generic Santa suit by any means!   What a fun evening and the girls truly loved it.  Although they wanted to know why he came in a truck and not a sleigh!

Our breaks are all too short and are still filled with many appointments throughout our time at home.  We came home on Monday, January 10 and during that week, I was at the Hem/Onc clinic with Josie on Wednesday, on Friday, on Monday and then again on Friday. They want to continually check her blood counts and make sure they maintain at the correct levels.  Sometimes these appointments can last up to 3 hours, which was the case this past Friday.  One really nice thing about the clinic is that it has now moved to the new hospital, so that will at least make the appointment more fun with being in a new place!  By the way, the new Helen DeVos Children’s Hospital is quite amazing – Grand Rapids has truly been blessed!  Security is a bit of a bear, but I am sure they will be ironing out some of those kinks as time goes on.

This next round of chemo (round 4) for Josie began this past Friday (January 21).  She was given a dose of the Vincristine chemo drug in the clinic and then we were given 2 chemo drugs (Temodar and Etoposide) that we will administer to her at home.  During this appointment, the doctor gave good news about Josie’s treatment.  The first is that this is the last of the Vincristine that she will receive – they typically discontinue this drug in the treatment plan after round 3.  He gave her one more dose for various reasons, but she will not need another dose during this round.  The other good news is that we will be home for the duration of the chemotherapy we give to Josie at home, which means we won’t admit Josie until February 2, when she will receive the 4^th drug.  This is the strongest drug of this cycle and this will be the one that will drop Josie’s blood counts which is why she must be admitted.

As far as health, that is a definite item of prayer, as she is surrounded by sisters that have yucky coughs and colds.  We are not taking her out of the house except for appointments and a few other little outings.  When Josie receives the strong chemo drug, we are praying for her to be healthy and that there will not be any infections this time.

Marc and I are healthy – tired, yes, but otherwise healthy.  We have had our share of craziness, I had my wisdom teeth pulled (all 4!) on December 30^th and have had to have several teeth filled and in the process one of my teeth ended up having to be rebuilt – still not sure if it is quite right. Other than those blips, we are staying well.  Thank you to everyone that is praying not only for Josie, but for the rest of our family.  We have felt it in so many ways and know that God is sustaining us through all of you. 

Blessings!

Marc & Darcia