Saturday, December 18, 2010

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




Sunday, December 12, 2010

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

Thursday, December 2, 2010

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