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