So as some of you may already know we are still home! Unfortunately I got a call from Sloan Kettering on Friday, March 16th telling me that Bailey’s counts were still not high enough for her to start the new trial. Of course this was a bit unexpected since our flights were scheduled to leave on Sunday and we were prepared to be in New York for about 2 months. Needless to say that Friday seemed to last forever…between cancelling flights, calling our home hospital to figure out the interm plan, talking with Dr.Basu from Sloan to hear her thoughts and opinions on what we should do for now until Bailey’s counts come up, etc. etc. etc….this momma was exhausted that is until I got home and told Bailey that we would get an additional 3-1/2 weeks at home…she was elated to say the least! This goes without saying that our time at home would not be all fun and games considering the interim plan including her getting low dose chemo at Tulane, but we were grateful all the same for the added time at home.
With that being said, Bailey did low dose chemo (irinotecan) at Tulane last week. It was done out patient which means mommie, Mimi and Bailey drove everyday back and forth to Tulane in New Orleans. It probably would have been much easier to stay in New Orleans but we all were determined to sleep in our own beds every night Bailey did absolutely amazing with her chemo. The Monday was a little tough on her because the chemo made her sick (as we had to pull over on the interstate three times so she didn’t throw up everywhere in the car) but everyday after that, with the right medicines thanks to her awesome oncologist Dr. Kanter, we were able to get the side effects at bay and she was able to have an easier week. We were very thankful the doctors chose a low dose chemo for her instead of high dose so that she is able to enjoy the extra time at home without alot of hospital visits and yucky sick days. She is definitely taking full advantage of her extra time at home and keeping us on our toes and on the road with all the places we must go before having to leave again. The energy my little girl has is beyond amazing!!!
So here we are again back to the waiting game. We are monitoring her counts and praying they continue recovering before the next trial opening gets here. The next trial date is scheduled for the week of April 16th so I have been asking God to make it possible for Bailey to be able to start on this date because the longer she goes without maintenance treatment the more chances we face of relapse (which is why she had low dose chemo in the interim in case some of you are wondering why they would give more chemo if we are waiting for her counts to come up) . Of course we have to do a complete workup with scans, etc so we will have to head up to NY on the week of April 9th. I should get more information and more definites in the next week or so…until then please continue praying for high counts!
On another note we have had some prettty amazing things happening during our time at home! For starters Bailey’s teacher, Mrs. Habetz, along with the help of Mrs. Jennings and all of the third graders at RCE surprised us with a very generous donation toward our travel expenses to get Bailey back and forth to NY for treatments. A few months back, Mrs. Habetz approached me with the idea of selling Bailey Prayer necklaces. The necklaces have two pearls and three charms which have a very special meaning. The purpose of these necklaces is that the children would pray for Bailey as they are making them and the person who purchases the necklaces would remember to pray for Bailey every time they put the necklace on. Her idea was to have the students make the necklaces as part of their stewardship hours for school and she would sell them and the proceeds would go towards travel expenses, medical expenses, etc. Let’s just say that a small project turned into ALOT of necklaces. Last week during school mass the entire third grade along with these two special teachers presented us with a donation of $5,000.oo!!!!!! To say that touched my heart is an understatement! The fact that two teachers, who are busy enough with their teaching responsibilites and have families of their own to tend to after hours, took the time to do this for our family is so amazing to me and I cannot say thank you enough…not only to them but to all the third graders who gave their time so selflessly to help their classmate! This is truly a blessing to our family!
The necklaces are still for sale for anyone that would like to purchase one…they are $15 and you can call RCE at 337-334-5657 to place an order or feel free to contact me and I will gladly assist!
As always I must say that we are so thankful for all of the blessings we receive…big and small! Our faith is big and NOTHING IS IMPOSSIBLE! We are still standing on faith that God will heal Bailey and she will be restored to full health and will live a long cancer free life! Until that day we will continue the fight and stop at nothing for a cure!