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

Sodium problems

December 12, 2010

Today didn’t start off quite as well as I was hoping.  The doctor came in this morning and said that Josie’s sodium levels are not staying where they need to be and that this is of great concern.  They are working on getting her body what it needs, but it appears to be a symptom of the tumor and brain injury. 

The doctor suggested that she might go back to PICU since that is more of their specialty, but was also good with her staying on the Hem/Onc floor if they could get her sodium regulated.  So we wait. 

Josie appears fine and has given us lots of smiles and sweetness so far today. 

We are definitely in need of prayer today. 

In Him,

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

not home yet and reflux

November 15, 2010

Josie will not be coming home this week and actually not for several more weeks (we think).  The vomiting/refluxing is terribly worse and the only explanation is that the changing pressure in her head is messing with her central nervous system.  For example of how bad her reflux is, this morning between 8am-10am, she refluxed around 6-7 times.  She didn’t get tons out, but each time there was either saliva or stomach acid, not to mention it makes Josie miserable as she tries to get it out.  Then during the ten o’clock hour alone, she refluxed 4 times, plus gagged quite a bit.  Marc and I have been very concerned that they would send us home with her like this – since it is much worse than what we were dealing with in the summer.  We are starting to keep a running log of every time she throws up so that we have a better handle on how often it happens and how much she gets out each time.  We should have started a log earlier, but now have and it has already been helpful when we talked with the doctor. 

We did just talk with the doctor and he said that due to her increased vomiting, they don't see her going home right now.  This is good in many ways and yet it’s hard to stay here even longer.  We did voice our concerns about taking her home in this condition and they agreed that it would be more stressful and they can observe her condition more closely here.  There is a secondary rationale for keeping her here as well.  Since her blood counts have been staying even - not dipping down, and she is handling chemo so well, they would like to proceed earlier with the next round of treatment.  Instead of taking a week off, they will start the next cycle toward the end of this week, which means she would stay in the hospital anyway. 

Last night they took Josie for a CT scan because her head has started changing shape during position changes, such as when we hold her or move her in her bed.  She will get a fairly good-size "sink hole" toward the front of her head where the skull flap is missing and then it seems like fluid fills the back side of her head.  Change her position and her head goes back to "normal".   The CT results thankfully did not show anything dangerous or irregular going on inside.  The only difference is that some of the swelling has gone down around the edges of her head and that change in less fluid is most likely causing the shape changes. It’s similar to when someone loses quite a bit of weight and the first place you notice it is in their face because they have lost some of that puffiness/extra fluid.  Best analogy I could come up with to explain Josie’s head shape change! J

We hope and pray that she can come home soon, but we are also praying that a solution can be found to relieve Josie of this reflux, or at least lighten it up.  She is on several medications to help with nausea and even one that is suppose to help with inner-cranial pressure nausea, but so far not much has helped.    We just wait and see as they try to figure her out - each day seems to bring something new for Josie’s treatment. 

Keep praying...we serve a God who hears!

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