August 8, 2012…When patience isn’t your virtue!

Well let me begin with thank you thank you thank you to everyone who came out to the blood drive! We had a tremendous turnout and it was so much more than I could have planned for. Bailey had such a great time visiting with everyone and I must say I did too! You don’t realize how much you miss everyone until you find the time and a reason to meet up again. Her blood drive gave us a reason and people found the time to come …I can’t say thank you enough! We had 137 donors and raised over $10,000 to help with the travel expenses and bills for her treatments. I was absoutely overwhelmed by the generosity of our community, family and friends. It touches my heart to know that so many people care about my little girl and want to help me fight to keep her here! Thank you again!

So on to the news that I am sure you are all anxious to hear about…treatment. We left for Philadelphia on Monday, July 30th (my birthday) because we had an appointment at clinic on Tuesday. Thankfully our flights to Philadelphia were uneventful and we arrived on time and according to plan (to bad I can’t say the same for the return flight home, but I’ll get to that in a minute). Anyways on Tuesday Bailey was seen by the team to make sure she looked good, felt good, etc. before being admitted on Wednesday. Of course she passed the test and as always, gave them a few good laughs with her sassy spunky personality. So it was decided that we would return to the hospital on Wednesday to be admitted and also so she could receive a blood transfusion before the MIBG therapy would be administered. Her red blood count was at 9.8 and in order to start the study it had to be at 10.0 or greater (although normally if she is over 8 she is fine but since this was part of the study protocol she had to get the transfusion). On Wednesday we headed over to clinic and waited around for our room to be ready so we could get settled in.  We were able to roam around and grab some lunch before she needed to go to her room and let me just say that hospital is HUGE!!!!

 Once we were settled into her room they gave us the run down as to what we would expect over the next few days although I soon realized that everything they told me to expect would be nothing like what we would experience…(not surprising for Bailey right!) Every inch of the room was covered in plastic…floors, walls, hospital bed, railings to hospital bed, door knobs, telephone, toilet, hospital computers…everything! Of course the bed has sheets and pillows for her to be comfortable but underneath was plastic! We were told that only one person is allowed in the room at a time and you had to wear closed toe shoes covered with those little blue hospital booties and if you must approach her bed you had to wear the yellow contamination gowns and gloves. Upon moving away from her bed you must immediatley throw away the gown and gloves by carefully removing them without touching them with your bare hands. Also upon leaving the room you had to remove one shoe covering bootie at a time by lifting one foot up, removing the bootie and placing it in the HAZMAT cardboard box by the door while carefully putting your shoe over the red line at the door then repeating the process with the other foot. Her IV pole was also placed right by the door so that the nurses could hang medicines and access the pump without having to come into the room as they are allowed to only enter the room under emergency cases when the parent cannot provide the proper care alone. Parents are not allowed to eat or drink in the room at any time and must do so in the hallway when needed. Anything that Bailey touched must stay on the opposite side of the room and could not be brought back to the “clean corner” where I slept. Every person that entered the room must have a dosimeter reader that tracks the amount of radiation they were exposed to while in the room and must record the reading on the paper that was outside of the room upon leaving….needless to say lots and lots of things to remember.  Wednesday night Bailey received her blood transfusion which takes about 3-1/2 hours to complete, not to bad right…wrong! The nurses got tied up with another patient so her transfusion which was supposed to start at 8pm didn’t start until 10:45pm which made it a really long night! 

On to Thursday,MIBG infusion day. So that morning we waited around for the radiation specialist to come and set up Bailey’s room with all the special things we would need in order to make it through the first day of infusion. Bailey was taken up to the OR to have her foley cathedar put in and let’s just say she was not a happy camper. Thankfully Dr. Mosse gave her some medicine that helped her bladder relax a bit and that seemed to do the trick. We were told her infusion would start around 1pm and would take 2 horus to administer. Well 1pm came and went and no infusion. Finally around 4pm they infusion started and we had to leave the room until it was over. I must say that was on of the hardest parts. I hated to leave my little girl there in that room surrounded by lead shields all by herself while she was getting a dangerous liquid radiation infusion….but rules are rules and so I did…although I lifted the shade on the window to the door and pulled up a chair and sat there by the window so that she could see me anytime she wanted :) . I put a movie on for her before we had to leave to try and occupy as much of the 2 hours as possible and thankfully it did! Once the infusion was over I was allowed back into her room as long as I followed all of the rules. The first hour or so after the infusion was fine. Bailey watched more movies and I sat on my “clean corner” sofa and watched along with her…then the fun began. Bailey kept telling me she was nauseated so I told the nurse and they gave her a nausea medicing by IV to try to help but unfortunately that did not work. Minutes later Bailey started throwing up…this continued throughout the night despite all of the attempts to try to help control it with the use of IV medications. Also during her throwing up she told me she though her foley cathedar was leaking because her legs felt wet…let’s just say it wasn’t a leaky cathedar but the something far worse that would be a HUGE mess to clean up…if you guessed diarrehea you guessed right. Now diarrehea under regular circumstances wouldn’t be the worse thing in the world, but lying in a bed with a cathedar inside of you and only a few hours after receiving a high dose of liquied radiation as well as oral chemo that made you nauseated to the point that you cant’ stop vomitting…well that is just down right horrible! Let’s just say the nurse had no choice but to come into the room to help me. So basically we didn’t get to sleep until 7am on Friday morning…horrible horrible night!

Thankfully on Friday when the radiation specialist came in, Bailey’s radiation numbers were coming down and everything was going as planned except for her being so sick. Saturday was good as well as it was decided that the magic number 7 that we were waiting for would happen on Sunday. So being the sneaky mommie I am, I decided to wake Bailey up a little early on Sunday so I could sponge bathe her to get as much of the excess radiation off of her skin as possible, so that when the radiation specialist came in her number would be below 7. Thankfully it worked and her number was at 6.4 when he came…we then had to take out her foley cathedar and wait for the quick MIBG scan to be done. The reason they do the quick scan is to make sure the MIBG treatment reached every cell in her body, but mainly the tumors that we are trying to get rid of. Let’s just say that when I looked at the scan as it was being done I could have literally vomitted…my poor little girl lit up like the 4th of July…if you are a parent of a child with cancer you know this is NOT what you want to see. I know her disease had spread even more, specifically to her lungs, base of her spine, behind her liver and the two previous spots that were in her chest area grew evern large…. but OMG this was horrible to see! It is one thing for a doctor to tell you things have progressed alot and that this cancer is trying to take over her body, but it is definitely another thing to watch it on a screen with your own eyes as your little girl, oblivious to it all, lies there on the table being scanned. Sick to my stomach does not even begin to describe the feeling!

Anyways I had to suck it up and say a prayer like I always do because no matter what those scans show, or what the doctors say,  I know GOD is bigger! He will prevail and she will be healed…end of story!  So off we went to the hotel we had to stay at for the night before flying home. We had a very enjoyable night in which we actually got more sleep than we had in the previous 5 days. Our flight left Philadelphia at 3:30pm on Monday and we were in Houston by 7pm. Let’s just say that United had a little surprise for us that we definitely could have done without. Our flight was delayed then cancelled…but of course they didn’t mention this until 9:20pm!!!!! To say I was furious is putting it lightly…my little girl just had a week of hell and now I can’t get her home. Oh and I forgot to mention that I had to get her to Tulane in New Orleans by 8:30am!!! So off we went to rent a car and finally at 10:30 we were on our way home. Of course my phone was dead by this point and I had no directions…so let’s just say I did get lost once but eventually we made it home…at 3:30am!

Thank GOD for my awesome husband who could see there was no way I could sleep for 2 hours and get up to drive 3 hours to Tulane after the week I had, so he saved the day as always and drove us to New Orleans so I could sleep on the way :) At Tulane, Bailey did some bloodwork and an EKG all of which came back fine. Her counts had dropped slightly but that is to be expected. Once we finished up in New Orleans we headed back home to enjoy life once again!

So for the next few weeks we will be making alot of trips to Tulane as well as to Women’s and Children’s. THat being said, we are also having to fly back to Philadelphia next week so Bailey can receive a transfusion of her stem cells. This will be a short trip and we are praying for no delays!!!! She will finish up the oral chemo (Vorinostat) on Tuesday, August 13th and then we just wait. We will go to appointment, probably get a few transfusions as her counts try to recover…but mainly we will wait, wait, wait and pray, pray, pray. She will not get scans until the week of September 24th (Cody and I first wedding anniversary so I know it will bring good results) so until then mommie gets to practice that little thing called patience…which is not one of my favorite virtues!!!! Bailey on the other hand is just happy to be home lol! She is so non-chalant about things it really cracks me up. You would think she if fighting a common cold…not a life threatening cancer that could take life away from her at any minute.

For this I am grateful…I am so grateful that she continues to teach us how to live life to the fullest each and every day despite our circumstances. At the end of the day we cannot control these circumstances…we can only control how we face them. We will continue fighthing with everything we have. We will not stop until she is healed. In the meatime, mommie will practice that patience thing and trust that the man upstairs will take care of the rest….like only HE can! I will continue to be thankful that my little girl is still here with me everyday. She is my constant reminder that NOTHING IS IMPOSSIBLE!!!

As I watched her through the window...

 

My sleeping princess fighting through it...

 

Another treatment down and heading home!