Monday, September 27th…

Well alot has happened since my last post…The 7th round of chemo ended and as usual Bailey’s counts bottomed out. Thankfully this round of chemo was not as bad on her as the doctors expected. She was tired and slept a good bit, but she wasn’t sick with nausea or vomitting. She did however begin running a fever which was very scary due to the fact that she needed so many transfusions. Transfusions are not typically given when fever is present but due to the fact that her counts kept dropping there was not choice for the doctors but to give the transfusion with hopes that the fever would not rise during the transfusion. Much to everyone’s amazement all went according to plan. Bailey was able to get all the transfusions she needed even with the fever staying at a constant 102.

Last week she was confined to the room due to the fever and her counts being so low. Of course my little social butterfly did not like this but thankfully we made it through! Much to our surprise her counts started coming up on Saturday morning, so with that being said we were able to come home last night to finish recooperating. Her doctor was very pleased with the way her body was responding to the medicine that helps recover her white counts and decided that we could come home until Thursday. We will head back to Tulane to check her blood counts and will start the new injections on Friday. These new injections (shots) will be given to help her body produce the cells that are needed for the stem cell collection which will take place next week. This will be our fifth attempt to collect these cells so please pray that the fifth time will work!

During the weekend when we start the new injections, Bailey will be getting four shots everyday. The shots will make her body very achy and I am being told that she will more than likely be in alot of pain. So extra prayers would be appreciated so that she will not have to experience this. As always thank you all for your continued support on our journey…it has definitely been a long one so far but we have been blessed beyond our imagination!

The best part of it all is that no matter what, I still have a smiling little girl…I couldn’t ask for more!

Wednesday, September 8th…

So once again we are back at our home away from home! We arrived at Tulane on Monday afternoon to begin the pre-hydration to prepare Bailey’s body for chemo. Of course my little girl was so happy to see everyone here…there is nothing like watching her face light up when she sees the people who have been taking such good care of her on this journey. Needless to say I think they were just as happy to have us back as it has been a month since we have been here! Funny how times flies!!!

So Tuesday started day one of chemo. Everything went good and Bailey wasn’t sick at all. The chemo she is on is very toxic (as is most chemo) but this one is more so because of the dosage she is receiving. With that being said, they are having to give her medicine to empty her bladder every hour. As you can imagine this is not a fun part of the process. All that aside that is the worst of it so far. Last night was a very LONG night due to the changings, medicine timing, beeping IV pump, etc. I was up every half hour checking her to see if she needed changing or actually changing her. It was definitely not fun but we made it through. Poor Bailey was so tired this morning but as you would guess even that didn’t stop her. After her daily cup of coffee (something that she has started since being in the hospital) she was more than ready to get out of the room and begin her day.

So here we are mid-day and we are still changing her every hour and she is still rollling around the hospital as if she owns the place. The bug mobile visits the playroom at 1:30 so that will occupy her time until her art appointment with the hopsital staff at 2pm. AFter that appointment she will do school work with Mimi (while mommie continues to work) until about 5pm and then playtime starts all over again. Where she gets her energy from, I cannot tell you …but if I had to guess it is sent from above with all the other blessings HE has bestowed upon us.

Thanks as always for the prayers and I will keep you updated as to how our days are going here.

Thursday, September 2nd….

All I can say is that God has really big ears!!!! I got a phone call from Dr.Kanter, Bailey’s oncologist, and I must say she delivered some of the best news we have received in a very long time. The final results from all of the scans are in and the spot is definitely not a tumor and even better is nothing we need to be concerned about!!! After comparing all of the scans, bloodwork, etc. it was concluded that the spot was negative. With that being said, we are still heading to Tulane on Monday to start round 7 of chemo. The doctors have agreed that Bailey should receive another round of chemo before receiving her first dose of the antibody. This will ensure that her body is 100% ready to accept the antibody with no chance of rejection. After the chemo is complete we will then have a plan as to what the next step is.

The doctors are weighing the option of possibly doing another surgery to go in from her left side to clean out the area by her spine and around her spinal cord a little more. The scans showed there may be some residual tumor still there, meaning its dead tumor but it has not disected enough to make sure the radiation will work as effectively as it could if that weren’t there. So over the next few weeks we need lots of prayers for guidance for her doctors. All things considered I am very happy with the news and we are as ready as ever for the next step in this journey.

I will keep you all updated as to how chemo goes but in the meantime pray that Bailey will not be so sick on this round. Thank you as always for your prayers, they are appreciated more than you ever know.