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