Good News MRI

February 1, 2012

It has been a week since Josie’s MRI.  We had received preliminary results last Friday, but did not want to post anything until we had reviewed the actual scan with her Oncologist.  Today we were able to do that. 

We are pleased to say that Josie’s tumor is once again smaller and showing signs that it is stabilizing.  In fact, with this latest MRI, they started using a new higher resolution format that shows more specific cancer areas.   Some of the areas that they had previously been watching are now considered not cancer areas, due to what they could see with these new scans.  Praise God!  She does still have tumor in her brain, but at this point, they are considering the portions that they see, non-threatening. 

The treatment plan is to continue with IV chemo for 2 more rounds after today,  so it will be done by the end of February.  After they stop the IV chemo, they will have her continue on the chemo that we do at home for 3 months.  By June or July of this year, she will most likely be off all chemo.  They will continue to watch her carefully by doing MRI scans every 2 months.  If the tumor continues to be stable, they will go to MRI’s every 3 months and so on. 

At first we were a little taken back that she will be off chemo, but the doctors are pleased with where she is at and believe that this is a good route for her.  She cannot stay on chemo indefinitely and they can always start her back up on chemo again (for a while) if they do see growth in the tumor.  We will cross that bridge only if it comes up.

We are still digesting all that we have seen and all that we heard today – almost a little numb (in a good way) to the news.  Praising God for such a good report and look forward to what God has for this little lady.  We love seeing our little girl develop and take on her own little character – she is truly a sweet natured, fun-loving and silly girl!

On a side note – we are on a break from Josie’s reflux and it is extremely refreshing.  Her neurologist believes that her reflux hits in cycles because of possible seizure activity.  If the reflux starts up again (we are praying that it doesn’t start up again), she will be going in for an EEG to try and pinpoint if it is seizures.  For now though, we are enjoying not carrying around a burp rag everywhere!

Blessings to you all,

Marc & Darcia

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

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

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

Chemo, Sodium and Infection

December 18, 2010

We are home with Josie and we were able to go to church as a whole family yesterday!  She is stable and holding her own, so the doctors were comfortable with her going home.  We are so thankful that we will get to spend Christmas all together as a whole family.  The girls couldn’t wait to see Josie – they had not been up to the hospital since she was admitted for this round of chemo, so it has been a long wait.  In one of Reese’s papers from either church or school, one of the questions asked was “what are some things that are hard to wait for” – her answers were things like “Christmas, new snow pants, going home”.  Then the next question asked “What has been the hardest thing lately to wait for?” – her answer: “My sister to come home”.  Needless to say, we are all ready for Josie to be home. 

The stay at the hospital this last time has been a bit more stressful.  The chemotherapy that she received was quite strong and ended up wiping out her blood counts.  For a few days, she only had around 100 white blood cells working in her body when the norm is around 10,000.  This is quite typical for chemotherapy, and they are constantly monitoring her, but it is still very nerve wracking.  Josie’s hemoglobin dipped twice and she ended up needing 2 transfusions. After she receives these transfusions, she always seems to glow with a pretty shade of pink all over her body.  The first time she had one, I thought something was wrong with her, so I kept asking the nurse if she was okay, but I was assured over and over that it is absolutely normal.  Now I don’t worry, I just enjoy her pretty pinkness!

Josie ended up giving us two scares during this time period.  The first was that she ended up with a bacterial infection in her blood.  We are not sure where she picked up the bacteria – it could have been her broviac line or it could have come from something in her sinuses, we won’t ever know.  As soon as it was discovered, she was immediately put on antibiotics – 3 in fact.  They put her on several types that cover a general/broad spectrum of bacteria’s until the culture that they took grows enough in the lab to let them determine what exactly it is.  This seemed routine and no one appeared terribly concerned – until later when we found out it was an extremely dangerous bacteria.  Thankfully they had caught it early and were able to get it cleared up before it became really bad.    

The second scare – which was scary right from the start, was that her sodium counts went really low.  A normal level is around 130-160, Josie’s started going down first to the 125’s, then the 120’s and finally to 115.  The doctor that was on during this last week informed us of how serious this situation was and let us know that she had called in the kidney doctor.  It appears that Josie had a situation where her kidneys were getting rid of too much salt.  After trying to correct the sodium issue on the Hem/Onc floor, Josie’s sodium kept going further in the tank.  Finally, the Hem/Onc doctor had Josie transferred to the PICU (intensive care) for further treatment.  In the PICU, the doctors can be a little more aggressive with the treatment plans because they can have a nurse in her room watching her more carefully.  They did a great job of getting Josie’s sodium turned around.  They ended up giving her this medication that helps sodium stick to the cells and then gave her a pretty high dose of concentrated sodium.  The nurse that Josie had when we got up to the PICU was a bit nervous about the concentrated sodium and was very thorough with checking and rechecking the rates before he gave it to her since this type of sodium can be toxic if given incorrectly.  We were thankful for his thoroughness!  Her sodium is now holding strong in the normal range.  On Saturday, we talked to her primary oncologist and found that the real reason for her salt wasting was due to the steroid that Josie has been on since her second surgery and how it affected the adrenal gland on her kidneys.  They have since stopped giving her this steroid and balanced her sodium with other medications.

 

The funny thing about this sodium problem is that the doctors were perplexed by Josie’s demeanor.  For a typical 5 month old with a sodium count of 115, the child should be extremely lethargic, if not close to comatose.  Josie on the other hand doesn’t like to be typical, so throughout all of this she was happy, wide awake and flashing that sweet, sweet smile.  In fact, she wouldn’t even take a nap, she would stay up from 8:30am until 2:30pm and then she would finally give in to sleep.  When the Hem/Onc called to tell the kidney doctor that Josie’s level had dropped to 115, she asked if Josie was unresponsive and was blown away that she was wide awake and happy.   If you’ve seen the latest pictures on facebook, those were taken the day that her numbers were the lowest.  She is a funny girl!

After Josie’s sodium numbers leveled off, she was then sent for an MRI to check to see if there was something that had moved or changed in her head to cause this sodium wasting.   She did great for the MRI and this time she was stable enough to not need a ventilator during the scan.  The results of the MRI were only slightly changed.  The tumor did not grow any larger from her previous scan in November, but it didn’t really shrink either.  The radiologist said that it was maybe 2-3 millimeters smaller, but not significantly smaller for the types of chemotherapy she has undergone.  What does this mean?  The chemo is at least keeping it from growing, but it did not shrink like they had planned.  There are varying opinions about the next stage for Josie, depending on the doctor.  Josie’s case was taken to the tumor board (a group of up to 40+ specialists for tumors) and there was no “right” direction, but several options, all with pro’s and con’s. 

At this point, we are planning on going ahead with 2 more rounds of chemotherapy – the first will be a 3 drug cycle and then the second round will be the 4 drug cycle that she just completed.  This would mean that Josie will be in the hospital again for 3 weeks at a time to be observed for complications.  There are always the risk factors of complications – no matter which route we go.  Please pray with us that she will not get another infection and that she handles her counts going down to nothing again. 

We would love for someone to tell us that this is exactly the right route, but ultimately, we have to make the decision with God’s help, and it weighs heavy on our hearts.  The one thing that we have not lost sight of though is hope.  Our desire is for Josie to be cured and be rid of this tumor and for that we are praying intensely.  We also know that there is a greater hope beyond this world and we know that we must hold on to Josie as best we can in this world, but hold her loosely too.  At this point, we are just enjoying each day with her and she is indescribably precious and sweet. 

This update has taken me 4 days to write, so I need to wrap it up.  Continue to pray for Josie and for us as we wade these deep waters.  We have been so blessed this Christmas by so many – it will truly be a special year!

Merry Christmas,

Marc & Darcia

Thankful hearts!

December 2, 2010

What we were thankful for this Thanksgiving…

*Marc & Darcia were thankful for being under the same roof (our roof!) at the same time!

*Reese was thankful for the new Wii game “Mario Kart” that someone allowed us to purchase.  Quite honestly, it is very fun for everyone to spend time together playing the Wii!

*Eliza was thankful for candy and all the fun play dates that she gets to go to each week!

*Josie was thankful for not being hooked up to so many wires and lines and that she could be carried all over the house, and not be on a 4 foot leash!

*The whole family was thankful for 9 ½ days at home and to celebrate Thanksgiving all together! 

Once again it has been a while since we posted an update, it was so nice to be home and somehow being home didn’t allow me to get on the computer quite as much as I do at the hospital.  

We have had many people ask, “what was it like being home with Josie?”.   We LOVED it – although it did come with its own challenges.  The last time Josie was home we administered her daily medications, but this time she came home with twice as many medications.  Marc posted a picture on Josie’s group page on facebook of all the bottles of “goodies” that we brought home.  At 9am and 9:30pm each day, she would get a “cocktail” of 8-9 medications.  We also had to give 6-7 at 3pm, one med at 5:00 and one at 8:30pm and then we each took a turn at night getting up – Marc got up for the 1 am med and I got up for the 3am med.  Thankfully the meds in the middle of the night didn’t wake Josie up – only us! 

On top of the medications, we also administered 2 chemotherapy drugs at 9pm.  The first night home I ended up calling the Hem/Onc nurse and had to ask some questions since I was a bit nervous and didn’t want to mess anything up.  Marc would draw up the other meds while I would do the chemo.  One of the drugs I had to open the capsules and dissolve the medication in water, which meant I had to wear special chemo gloves and wear a mask so that I didn’t inhale any of the powder from the capsule.  The other drug was just a syringe that we had to push into Josie’s feeding tube, but I still had to wear the special gloves to even handle the syringe.  Talk about nerve wracking – but so willing to do it in order for Josie to be home!

While at home for the week, we still had doctor appointments – so we were out and about to the Neurologist and then to the Hem/Onc Clinic for Josie to get labs drawn, a dressing change on her broviac and then to get a dose of yet another chemo drug that we could not give to her at home.  I believe that is how it is going to be anytime that we are home – run, run, run!  Actually, I wish I was really running – all this sitting at the hospital is doing nothing for me! J

We were given a bit of a present before we left the hospital – we can now hold Josie on her right side – which is the side without a bone-flap.  We are still very careful with her, but if we want to hold her on that side, it’s not a problem unless Josie shows us that it is a problem.  Talk about a bit of freedom!  Up until this point, we have been extremely, extremely careful to not even touch that side.  To now be able to pick her up and not worry as much has been such a gift.  The rest of the gift is that Josie does like to be on that side and will snuggle right in to our arms (especially her daddy’s).

Having everyone home was good and also made us realize how used to being on the go our other girls have become.  On Friday, the day after Thanksgiving, the older girls were like wild caged tigers – Marc and I both heaved a sigh of relief once they got into bed that night!  On Saturday, Marc took them on some errands in the morning and that little outing made all the difference for the rest of the day.  It was so nice though to be home with the girls and to be able to let Josie’s big sisters hold her once again.  They are so in love with her!!

This past Monday we went back to the Hem/Onc clinic for blood to be drawn and then they admitted her back to the hospital for the final chemo drug of this cycle called Cytoxin (sounds simply dreadful, doesn’t it?!).  Cytoxin is the most powerful drug in this cycle and they wanted Josie admitted because it can cause her blood counts to drop.  They are right – her blood counts dropped today and she is currently as I write this, getting a blood transfusion because her hemoglobin dipped to far down.  Her other blood counts have all dropped today too, not dangerously low, but they still dropped.  Thankfully they are not surprised by and of this and they just give her what she needs; a boost of blood or platelets or a shot to increase her white blood cell production.  The medical world amazes me.  

Here’s my little plug and then I will get off my soap box – if you want to help – not just Josie, but lots of people, giving blood is huge!  Josie has had several blood transfusions –during both surgeries and also since she has been on chemo – it has been literally life saving for her.  Okay…I’m stepping down. 

Once Josie’s blood counts stop dropping and start to recover, an MRI will be scheduled and that imaging will help the doctors determine the next regiment for Josie’s treatment.  We hope to be able to come home once her blood counts recover and that is what the doctors are hopeful for as well.  To be home for Christmas would be absolutely wonderful and we are praying to that end!  

We have been so blessed throughout this journey – even though it is a heart wrenching journey.  God has touched our lives through so many people; words cannot even begin to explain our overflowing hearts.  We know that God is working and we see it every day in the beautiful life of our baby girl.  We continue to be on our knees and know that God is using this journey for His glory, not ours and that is the ultimate reason for anything.

Continued blessings,

Marc & Darcia

Home...so nice!

November 21, 2010

Josie is HOME!  On Friday the Oncologist for this week came in and said she didn’t see any reason that Josie couldn’t go home for a little while.  Even though she is on chemotherapy right now, these particular drugs are not the ones that will drop her blood counts.  News to us…but good news!  Josie’s reflux has also improved greatly since the last time I posted – we know without a doubt that this is due to God answering our (and your) prayers on behalf of this issue.   The 11-12 refluxes in an hour was pretty exhausting – for Josie and for us.  Along with these improvements, the doctor noted that Josie was not needing as much of the nurses care any longer – they were giving her medicine and other basic care, but the rest of the care came from me and Marc.  The Occupational, Physical and Speech therapists have showed us how do much of Josie’s therapy and felt they didn’t need to come see Josie as much since we were working with her so well.  I think we both should have new degrees once we get through all of this! 

Josie will need to go back to the hospital on November 30^th for a different chemo drug in this cycle.  This particular drug is the one in this cycle that will possibly drop her blood counts, so she will need to stay for a couple of weeks (so they say) to be watched in case her counts do go down. 

Once we arrived home yesterday and unloaded our bags of stuff that we accumulated over the past month, our house looked like it had been trashed!  In order to not have more chaos, Marc’s parents took the girls for the rest of the weekend – this took a bit of the stress level away.  Thankfully we had thought a little ahead of time and bought a 7 drawer storage bin yesterday morning.  The bin seemed huge when I brought it into the house, but we filled it completely with all of Josie’s supplies for her 9 day stay at home! 

We are administering two of Josie’s chemotherapy drugs, giving her a plethora of other medications (see picture that Marc posted today) and we have to flush her broviac central line every day.  We gave medications to Josie previously, but this time it is elevated to a whole new level.  Administering the chemo is a bit nerve racking, especially the first time, but we did it and are more than willing to do it since it means she can be home with us!

We continue to be amazed by how quickly things can change for Josie and we are extremely pleased to have Josie home even for a short time.  This Thanksgiving will truly be a thankful time for our family this year. 

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

First round of Chemotherapy

November 9, 2010

Josie is handling chemotherapy pretty well so far.  She has started throwing up as of this last Friday morning.  Aunt Tara (my brother Josh’s wife) was staying overnight with Josie to give us a much needed break and ended up witnessing the first bout of yuck.  Josie has now thrown up multiple times, but the doctor does not think it is chemo related since it has been several days since her last dose and typically the nausea starts the day of or the day after treatment.  My belief is that she has started refluxing again – like she did while she was home with us.  They are keeping a close eye on her and are trying a couple different things to see if it helps her.  The main concern is they do not want her to get anything in her lungs and cause her to get sick.  Keep praying that she stays healthy as well as Marc and me.  If one of us gets sick, it means we cannot be up here with her and that would be downright rotten. L

Many people have asked about Josie’s treatment and what that looks like for a baby. The treatment that she is being given is part of a new treatment plan based out of a hospital in Los Angeles.  She receives 3 different chemotherapy drugs throughout the cycle.  One drug is a onetime dose the first day of the cycle, one drug is given once a week for 3 weeks of the cycle and the third drug is given for the first 5 days of the cycle.  Don’t quote me on all of this information, as we are still trying to wrap our minds around the whole process ourselves.  At day 7-10 of the cycle, Josie will probably be at her lowest point because her white blood cells will be low and it is harder to fight off infections.  Tomorrow starts day 7 of the cycle – they draw her blood levels every other day and will watch her closely.   After each cycle, she will probably have some type of scan done to see how the tumor is responding to treatment.  If after a couple of cycles they find that the tumor is not responding, they have another option of a 4 drug chemotherapy treatment.  It’s not necessarily a stronger treatment, just targeting the tumor differently.  At this point though, we just wait and pray.

Yesterday she had a surgical procedure done to place a broviac line in her chest.  This is a more permanent and safer port that she can have in for an extended period of time for chemotherapy.  Everything went fine with the procedure – it took a little longer since she is an infant and her veins are very tiny.  When the time comes for her to go home, the line will remain in and we will be able to use it to administer medication at home.

I had a glimpse of hope today as Josie looked at me and actually smiled and shortly after that gave me another smile along with some itty bitty coo's.  My heart melted, I must say!  It feels like things are clicking back into place for her - like she is coming out of the fog of all the surgery and drugs in her system.  When we thought we might lose her the night of her surgery, one of the only things that kept going through my mind, was her precious smile, the thought of not seeing that smile again tore me up.  I asked God that night, that if He spared Josie’s life that I might see her smile again.  Thank you God for answered prayer and proof that He cares about even the smallest things like a smile!

A friend of mine wrote me today and said, “I don’t know how to make sense of Josie’s suffering.”  I pondered her words for a while throughout the evening, my conclusion: I can't make sense of Josie's suffering either.  It makes it all the harder when I can't just pick up my baby and comfort her because I have to be so careful not to pull any wires and cords; and I can only hold her a certain way because she is missing part of her skull; and that sometimes picking her up to hold her makes her more uncomfortable than she was just lying in her bed.  Some days it stretches me extremely thin, yet each day, I realize that God has put Josie in our life and her life is for a reason, no matter how long or short her days may be on this earth.  God has a much bigger picture than I can ever understand, in fact he has the whole picture and every brush stroke of that picture is perfectly painted – including Josie.  With that truth, I am secure – it doesn’t mean we won’t have a lot of tears and heartache for our baby girl to have a “normal” life or even life in general.  The strokes seem harsh right now, but they are forever making the final picture glorious.  For right now though, I am looking at the beautiful brush stroke of a miraculous baby smile. 

Blessings (and hopefully a restful night here with Lil’ Jo),

Marc & Darcia

Decisions

November 3, 2010

We have been in a whirlwind of doctors, specialist and transition over the past several days.  Once again…where to begin is always the hardest part, do I start with the newest info or do I start with what got us to the newest info?

Last Thursday, Josie’s Oncologist came to talk with us.  He explained our options for Josie’s care, we basically have two options:

1.  Take Josie home with hospice care

2.  Start chemotherapy and see if the drugs will shrink/shrivel the tumor

The doctor explained to us what chemotherapy would be like and what it would mean for her care.  This will be a long process lasting at least 6 months to even longer depending on how the tumor reacts to the drugs.  At this point it will probably be a 4 week cycle where she will have chemo administered and then she will stay at the hospital for 3 weeks in order to monitor her carefully and keep her immune system from being compromised.  The last week of the cycle she will be at home and then the cycle will start over.  Being able to go home though will most likely depend on how her blood counts are doing and if she would be susceptible to infections during that 4^th week.  The Oncologist told us that he would not even present this option if he did not feel that there was a good chance that this will work. 

We had the weekend to discuss our options and were given more information to review the chemotherapy choice in order for us to make an informed decision.  Although chemotherapy is a hard choice to make, and has its own downsides, we have decided to go this route in order to give Josie a chance at life. 

Chemotherapy will be starting tonight (Wednesday).  Originally they had told us Friday, but they want to get this started sooner than later.  This tumor is very aggressive and our Oncologist is concerned that it is even now growing.  As the body heals, it releases healing chemicals and those healing chemicals even go to the “nasty” tumor, which then thinks that it needs to heal and grow too. 

Sunday and Monday we started to see some improvement in Josie’s behavior.  Previously if Josie wasn’t sleeping, then she was in a constant state of irritation/fussiness.  It seemed to be that it was a toss-up of whether she was still in pain or if she was having withdrawal from the pain medicines that she had been on.  Marc and I knew she was being well cared for, but we really wanted to see something work to help her agitation.  Finally they gave her a large boost of Phenobarbital (seizure med) along with some other variations of milder pain medications and it has done the trick.  She is very calm now when she is awake and will stay awake for quite some time.  Josie still doesn’t like to be picked on and is very sensitive to touch, but getting better with more and more stimulation. 

Yesterday (Tuesday), we heard rumor that Josie is no longer intensive care and could now possibly be moved to the 7^th floor in the Hematology/Oncology section.  We started packing things up, but then of course things didn’t move as quickly as we thought, so we ended up waiting for a couple hours before they did indeed move us.  She is now resting well in a very large crib.  We really like the staff in the PICU, but it is nice for Josie not be considered intensive care any longer. 

The 7^th floor is nice and we have our own room and even our own bathroom in the new room.  Being on this floor though also means that we do more of the basic care for Josie, so we are changing diapers, doing oral care, strapping on these little arm splints that she has and even holding Josie now!!!  It makes my blood pressure go up a little to handle her since her head is very fragile.  Josie’s head is fragile because she is missing part of her skull, there was too much swelling after surgery, so they could not put the skull flap (that’s what they call it) back in place – it is somewhere here at the hospital in a freezer.  For those that have never heard of this before, it is completely safe and even though they don’t have the skull flap in place, there is skin over it, which is why we have to be so careful.    

Occupational and Physical therapy were here today and were able to turn Josie very gently over on her tummy and she tolerated it for about ½ an hour.  This is a very good sign and good for her to be able to move to another position other than on her back. 

Marc went back to work today for the first time and so it is just me here with Josie.  Pray that we can find balance with being here, our girls at home and now with Marc working.  It is quite the juggling act – we are so thankful for the many people that are helping us out.

With God there is great hope.

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