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!). 

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

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

MRI and much needed breaks

November 13, 2010

The last few days have been a whirlwind of visitors, doctors and finally getting both of us home for a family fun evening.  Last week my sister-in-law Tara was able to come spend an overnight at the hospital with Josie so that Marc and I could both come home together and then last night my sister-in-law Lisa did the same.  It was so good to have some “normal” family time.  Our girls have been doing great with all of the juggling that we have had to do, but it has started to wear on them.  Eliza got a little teary the other night when I called her from the hospital – she asked me when I was coming home for the night and I had to tell her I was not going to be home.  She said “well, that makes me so sad” and almost cried – thankfully Aunt Lisa gave her extra hugs that night.  The girls came up to the hospital last night and as we were walking to the cars to take them home, she accidentally dropped her gum from her mouth – you would have thought something absolutely terrible happened from the way she was crying.  That silly gum was the last straw for her and she cracked.  Thankfully we had some good mom and dad time with them last night and this morning and they appeared to be refreshed and ready to go again. 

Josie had an MRI on Thursday to see if there was something triggering her reflux/vomiting. The MRI was still not very clear for the Pediatric Radiologist to read since there is still so much blood from the surgery.  This is to be expected though, it typically takes 6-8 weeks post-op for the blood to clear enough to get a good image and it has only been 3+ weeks since her surgery.  They do believe that the reflux/vomiting is a result of the pressure and swelling in her brain.  We dealt with this issue prior to this surgery, so we are not surprised by it, but we are bummed that it has returned. 

Typically with chemotherapy, a person’s white blood cells get low and that in turn causes them to get sick because they can’t fight off infections and germs as well.  Josie seems to not be affected this way and her white blood counts are staying quite normal, in fact, they were giving her shots to boost her white blood counts each day and had to back off to giving her shots every 3^rd day instead.  This is a huge answer to prayer.  Along with this good news, we have been once again hearing the “H” word again.  Going “H”ome is the word on the hospital floor and possibly as early as Monday or Tuesday of this coming week.  This is exciting news and a bit unnerving at the same time.   We were nervous to take Josie home the last time, but this time she has a few more complications.  She has a broviac port that needs to be cared for and used, she has more medications this time around and she is still missing that portion of her skull.  We know we can care for her, but it will be different than what we knew last time, then again, nothing has been typical with Josie. J

Josie still has one more injection of chemotherapy for this cycle, but we have been told that we could just bring her in to the hospital as an “out-patient” and then take her home again.  The next cycle would start somewhere around the beginning of December and then we would be in the hospital again for a little while, but again, we have been told that if her numbers stay pretty steady, that stay may be shorter too.  We are quite amazed by all of this information and are extremely thankful too. 

We completely see God’s hand moving in Josie’s life – we are in awe of what He is doing and can’t wait to see what He plans next for her. 

We continue to covet your prayers – she is doing well, but we know she still has a long road ahead of her. 

Blessings,

Darcia & Marc

Post-Surgery Update

October 23, 2010  Post-Surgery Update (this will be a long post and somewhat detailed, so if you get queasy, it may be hard to read)

It’s hard to know where to begin – we have lots of information that we would like to share.

Let’s start with the day before her surgery.  Josie was in the hospital the day prior for a procedure called embolization.  Embolization is a process by which they take a micro fiber catheter and feed it to the specific artery that they want to “block” the blood flow.  The doctor that did the procedure was able to find a large artery that was feeding the tumor and was able to block it off.  Basically, this was a successful procedure.  The hope was that when Josie went to surgery, there would be less bleeding because this artery was blocked.

The day of surgery:  Josie went to an MRI first thing prior to surgery.  This was to help them during the surgery so they could tell from the images where they were and what was tumor and what was brain.  Later we were informed that the tumor had doubled in size since the last MRI, which was a little less than 4 weeks ago.  This made the tumor the same size again as when they first found it right after birth.  It is an extremely aggressive tumor.

Everything was going well during Josie’s surgery; every update seemed to be a fairly positive report.  One of the last updates, they said that she had a little bleeding, but they had gotten it under control and were continuing.  Then we were told that she was out of surgery – that she was fine and to wait in a little conference room for the doctor.  We thought it was odd that we got a conference room when most people were told right in the waiting room how things went for whomever they were waiting for.   But since they told us that she was fine, we did not anticipate what the doctor came in to tell us.  He sat down and looked weary and then told us that things did not go so well.  Josie started bleeding, they would get it under control and then she would start bleeding from somewhere else, they would get that one under control, but then she started bleeding from places they weren’t even touching.  She received 3 volumes of blood and then her body stopped coagulating (wouldn’t clot).  She was in serious condition.  They ended up leaving some cotton balls soaked with a clotting medicine inside and then closed up her head.  We were obviously devastated.  In fact the doctor was even shaken by the way things turned out since they had gone so well for the first 4 hours. 

They took Josie up to the PICU, where they worked for 1.5-2 hours trying to stabilize her, of which they were able to do.  Praise God.

Thursday morning:  Josie had another CT scan and then we talked with the doctor.  He was surprised that she was holding her own – said he thought maybe she was stronger than he gave her credit for.  The CT scan didn’t show any worse than right after surgery.  Josie even opened her eyes and looked at the doctor.  Earlier, she had moved her legs enough to kick her little blanket off.  The rest of the day she was pretty quiet – which is a good thing.

Thursday night:  Josie started having seizures again – not to be unexpected due to her trauma.  They are currently still trying to get these under control with meds. 

Friday morning:  Josie went for another MRI – this is for post-operative imaging.  During the MRI, the neurosurgeon came by to talk to Marc and me.  The news was quite sickening.  The part of the tumor that had grown back was checked by pathology and the new tissue is malignant.  The type of tumor she had at first, an astrocytoma can have multiple cell mutations in it.  When pathology checked it the first time, there were not indicators of malignant cells, but the part that was left in her brain from the first surgery must have either had those cells in it or they mutated since, which is a possibility.  

The first steps are to get Josie better from surgery, which at this point, she seems to be doing okay, although this morning they found that she has a urinary tract infection from her catheter.  They are on it though and are giving her antibiotics.  Stopping the seizures is another step they need to get under control. 

Next step…the doctors (neurosurgeon and the oncologist) are creating a plan for her.  At this point, they are planning on a new chemotherapy drug – used in infants.  Then they will develop a further plan from that stage. 

So…we wait and we pray.  This will be a long haul for our sweet baby Josie.  Not sure of the future, but glad that she is resting peacefully here in the hospital and also in the loving arms of Jesus.  My emotions have been pretty raw, but for the most part Marc and I are working through this moment by moment.  The girls (Reese & Eliza) are doing well; they are at Nana & Papa’s this weekend and having a great time I am sure.  Pray for them as they are going to get shuffled around a bit for a while. 

Thank you to all who have been and continue to pray for Josie – she needs it.  Thank you to all of our family and dear friends that have surrounded us – we need it.

Blessings,

Marc & Darcia

We're HOME!

8/1/10

It's August and we are home! When Josie was diagnosed with a brain tumor, we did not foresee that we would be home this soon. Honestly, we expected to be at the hospital for a couple months, so we are extremely happy to have Josie home this early.

Leaving the hospital was actually anti-climatic, we were blasted with information and then there was a shift change and when we left, not many of the nurses or doctors that we had been working with were there, so we just kind of walked out of the hospital. Not sure what we were expecting, but it felt a little strange.

The homecoming was just as strange - we got out of the hospital later then we thought, when we got home - everyone greeted us and then the on-call nurse pulled up to help us get Josie set up at home. It was a bit chaotic - thankfully my in-laws took the girls out for dinner and we were able to get josie settled in -although there was a bit of craziness with that too.

It is good to be home - did I say that already?! Last night was our first really rough night of sleep. We think Josie was over stimulated from the day, so she had a hard time settling in and then her feeding tube pump kept giving us errors. Unfortunately, it is a very irritating high pitched beep that lets us know there is a problem. Not nice when it wakes us up from already scattered sleep.

The biggest prayer request we have for Josie is that she will start taking a bottle. She only had 2 days to try out the sucking process before her surgeries and then after those she was on an IV and now on a feeding tube. She needs to be "re-trained" to suck, but she has no interest and so far it has made her REALLY mad when we put anything into her mouth. We have a speech therapist to help with this process, but it is simply something that she will have to relearn and we have to be the administrators of that process.

Josie seems to be doing typical baby stuff, which is a great sign that her brain is working well. Time will tell, as far as how this whole trauma has affected her, but at this point, she is doing normal baby stuff. She doesn't like transition (not many of us do!) from one place to another. Plus she is constantly bombarded with kisses and ever-doting sisters, which overwhelms even me, so I am sure Josie is getting it too. :)

I need to stop rambling, but wanted to get a few notes out about Josie's homecoming. We will probably update this page less as we are not sitting in a hospital room - we have 2 other kiddo's and all of the rest of life to get back into the swing of around here.

Keep praying...we are going to need it just as much now.

Blessings,
Marc & Darcia

Back to work for Marc

7/26/10

Since it has been really quite quiet with Josie the last few days on Floor 7, I haven't posted much. We are very pleased and excited for all the good reports we are having about Josie. I was told at one point today that the doctors and nurses in their rounds are calling her a miracle baby. She sure is!!! We are truly blessed.

Today has turned out much more crazy than I anticipated. Marc was planning on going back to work today - he still did go, but he ended up going in later. Josie's CAT scan was moved to 9am (was at 5am), so when Marc got here to the hospital, he ended up waiting - hoping to talk with the neurosurgeon before he went to work. He left at 11:30 and of course the doctor came at noon. It was all good though and the CAT scan of Josie's head is looking good. YEAH!

From that meeting with the doctor, I ended up talking to so many other doctors, nurses, specialist and friends. Somewhere in there I was supposed to take a nap...it didn't happen. :) Everyone is coming to meet with us to prep us for going home.

Home...it's a wonderful, yet terrifying word. I am trying to turn my worries into trust in God as I hear these words. I truly believe we will be equipped by everyone here to handle the transition, but it will be quite the transition. For example, one of the discharge nurses is going to create a calendar for us with meds and dosage and other such information. Any help we can get...the better!

We were worried about Josie's neck having a kink in it because she likes to always look to her left side, but thankfully, PT (Physical Therapist) came today and let us know that she is only a little tweeked that way and promptly showed me techniques to get her to go the opposite way - and they work!!! Tried them already!

Lots of other information that I won't go into, but wanted to let you all know that Josie is doing well. We still covet your prayers as this next stage of life is going to be just as crazy, but in a different way.

We are thanking God for such a miraculous recovery that Josie is making. We couldn't have made it through without all of your prayers being lifted up on our behalf for our baby girl and our family.

Blessings,
Darcia

*By the way - big sisters are coming home tomorrow! Can't wait to see them - they've had a GREAT "vacation" with Uncle Josh and Aunt Tara and of course their cousins!