Unexpected visit continued

June 21, 2011  Unexpected visit continued…

We are now at the end of day 9 of the unexpected hospital visit.  Josie has been a bit of a mystery once again to the doctors.  The fever and the rash are not explained – they are still treating her with antibiotics to make sure it wasn’t something bacterial, but nothing grew from the blood cultures that they took to pinpoint it as such.  Aside from the fever and rash, Josie’s blood counts started to drop and then they bottomed out and have been hovering at the bottom for the last 4-5 days.   The latest conclusion is that Josie had several factors that affected her blood counts.  The first is that the higher dose of chemotherapy that we administer to her at home, had finally hit her threshold, causing her counts to drop (similar to the chemotherapy she had inpatient) and she also contracted a virus of some type.  The combinations of those two things have wiped her out.  It is taking her body a while to bounce back from the attack it has had on it.  One doctor has let us know that Josie is not critical, but it is just going to take time.  Josie’s blood counts have to be at a minimum number and show that they are rising in order for us to take her home.  Currently her infection fighting cells are at zero, so she is considered neutrapenic – or at high risk if she were to get something else.

At this point, she has had 2 platelet transfusions and today she received a red blood cell transfusion.  She was starting to look a little pale and her lips had very little color, so I knew she was low in red blood cells even before they told me.  She is much pinker tonight and hopefully feeling better with the transfusion. 

Tonight I did find that she may have a little bit of a yeast infection – I immediately put on her “Magic Butt Cream” (no lie…that’s what it is called!), which has medication in it for clearing up a yeast infection.  The doctors will check on this in the morning to see how she is doing.  She may also be running a little fever now – hoping for nothing new, but glad that the nurse tonight is so concerned.  More blood cultures being checked.

Meanwhile, the other girls are having a blast going to day camp and then spending the rest of the day with their good friends.  They are wiped out when they get home, but they are having a great time.  Marc and I are once again like ships passing in the fog.  I saw him for a whole 15 minutes today and that was 10 minutes more than expected since the PA was in the room talking to both of us this morning.  This is a crazy life! 

That’s all for now and hopefully an okay night of sleep here with Josie.

Blessings,

Darcia & Marc

New unexpected news

February 18, 2011

This will be a short update as I am very tired after a long emotionally and physically draining day at the hospital with Josie.  The day started with a 9am appointment at the Heme/Onc clinic where they checked Josie’s blood counts to see if she needed any transfusions.  She didn’t end up needing a transfusion, but had she needed one, she would have needed it before her surgery to replace her broviac at 2:30pm, thus why we needed an early appointment.

The Broviac replacement surgery went much longer than expected and they ran into a few complications as Josie has an occluded vein in the right side of her chest.  They ended up putting it into a different vein than they usually use, but were able to get it in.  I left the hospital for the day at 5pm. 

After her blood counts came back, Josie’s primary Oncologist came to speak with me.  Earlier in the week Josie had an MRI and the phone call we received from the Oncologist at that time was that he was encouraged and saw some shrinkage in the tumor.  He told us that the Neuro-Surgeon still needed to review it and that her case would go to Tumor Board on Friday.  We were also encouraged at that time.  This time though when I talked to the Oncologist, it was a bit different story.   The tumor has shrunk on the right side of her brain, so that is evidence that the chemo has been working.  Then he told me that a different part of the tumor has started growing into the left side of her brain.  I was completely caught off guard by this news.  As I tried to wrap myself around this info, the oncologist immediately said we should go take a look at the MRI so that I could see what he was explaining to me.  He pulled up the last MRI and the one done earlier this week and with my untrained eyes for reading such images, I could even see the growth on the left side of her brain. 

The plan at this point is to change Josie’s chemotherapy treatment plan.  She will be receiving a very potent regimen of 2 new drugs.  This treatment plan is all outpatient, so we will have 2-3 appointments a week at the Heme/Onc clinic, but will not need to stay at the hospital.  Josie will have 2 rounds of this chemotherapy and then they will do another MRI. 

We are still whirling from this news – it was not what we were hoping for, but know that God is not surprised and still has our lil’ Jo in His hands. 

Still on our knees,

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

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