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