Well unfortunately I did not have the time I thought I would once we arrived in Philadelphia to update everyone on here …so my apologies for updating so long after the fact. When we arrived in Philadelphia we went to clinic and it was determined that Bailey’s liver functions just weren’t where they needed to be in order for her to get another round of MIBG/Vorinostat. Thankfully God worked things out as always and the doctors did agree to let her get another round of MIBG only this time…I was very happy with that news!
She was admitted into the hospital on Thursday, October 11th, for a blood transfusion (just like last time to make sure her hemoglobins were high before the injection) and for lots of fluids. On Friday she went into the OR to have her cathedar placed which she absolutely hated…can’t say I don’t blame her….then she got the MIBG injection that afternoon. Just like last time it took about 2 hours for the injection to finish. During those two hours we had to sit in the hallway outside of her door again…I HATED that part. There was my little girl in this hospital bed, all alone getting a high dose of liquid radioactive isotope and all I was allowed to do was watch her through a window on the door. Now don’t get me wrong, she was able to watch movies and draw on her special paper, with her special markers, that had to be thrown afterward…but regardless I hate that I could not be in that bed with her, holding her and distracting her like I always do.
Anyways, our few days went by without any chaos and for that we were very very thankful! She didn’t get sick this time and thankfully the worse part of our stay was her being so bored from having to sit in that bed without ever leaving the room. We were discharged on Monday and we flew home on Tuesday to begin the recovery process. So while we were up there I discussed what the next steps would be after she finished recovering from this round and much to my surprise the answer I got was not at all what I was expecting. Once again I had to hear, “Well we really don’t have anything else to offer. Thankfully she responded so well to the first treatment that we expect the same if not better results this round and that limits what options are available. There just aren’t many options out there to keep kids clear once we get rid of the active disease.”
ARE YOU FREAKING KIDDING ME!!!! Once again we are being told to go home and wait for this disease to try to take over her little body AGAIN so they will be able to offer more treatments. Disgusted is not the word!!! Basically the way it works is that as long as her body has disease we have treatments but when things get to the point of clearing or tumors dying off, well unfortunately there just aren’t any treatments out there to help keep things that way despite knowing the way this cancer works and knowing it is just a matter of time before it comes back…..so you are told to go home and enjoy your time until this freaking disease decides to rear it’s ugly head and invade my little girl’s body….well quite frankly that is not good enough!
So being the proactive mommie I am, I decided that as soon as we got home I was going to do something! Wasn’t sure what but I was not about to sit around and do nothing. So needless to say in our week that we have been back home, in between running to the hospital for blood work, transfusions, etc. I have been doing research and contacting lots of hospitals and doctors to find something! Thankfully my prayers were answered in a matter of days! Dr. Sholler up in Michigan (place we thought of going awhile back before the MIBG/Vorinostat spot opened up) said she would meet with us the first week of December. She assured me that she has trials and treatments that are very promising and that Bailey could benefit from whether she has active disease or not. THANK YOU GOD FOR LISTENING AND OPENING THE RIGHT DOORS!!!!
So as of now we are home recovering and going back and forth to Tulane in New Orleans (3 hour drive from our house for those of you who follow our journey but have no clue where we live). Bailey has had to go to Tulane twice this week and needed a blood and platelet transfusion already. Her counts have dropped and are continuing to do so thus beginning the need for GCSF shots every night. As if that isn’t enough to deal with, she has developed another UTI, probably due from the cathedar being in for four days and counts dropping, etc. So she is taking antibiotics twice a day to clear that up. She is also have to take the SSKI drops which she is not very fond of and will have to continue doing so until the end of November to make sure the MIBG isotope doesn’t ruin her thyroids. She will get repeat scans at the end of November to see how this treatment has worked.
It never ends…but neither do her smiles, laughter and joy!
Despite the struggles and obstacles we are faced with, we know we have soooo much to be thankful for and we are giving thanks for each and every one of those reasons! We will not give up this fight or our faith that healing will come. God is able and we are trusting in HIS plan. No one knows what the future holds but I know who we give our unknown future to. We will not let the little obstacles along the way steal our joy. We will continue to smile and laugh and take things day by day. The past 2-1/2 years have been rough at times but God always pulls us through…somehow…someway…and we are trusting Him to do the same now… Thank you for your prayers and support! We love you guys!
NOTHING IS IMPOSSIBLE!
Matthew 17:20 “…Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”