As some of you may already know…we arrived in NYC on Saturday. It was very nice weather when we arrived… Not at all freezing like we expected. We were able to get to the Ronald McDonald house and get all settled in before dark. On Sunday we decided that we needed to go get a few groceries and so we set off after lounging around in our PJ’s for majority of the day. Needless to say our timing was HORRIBLE…we did not realize that the great NYC marathon was taking place right on 73rd avenue where we are staying. Fortunately on our way to the store we were able to cross the street despite all of the baracades and police officers surrounding the streets, although we were not so lucky on the way back. What we didn’t realize is that once the marathon started there was no crossing back to the other side until the entire race was finished unless you wanted to walk down to 52nd Avenue. AT first that was a ridiculous idea for us to walk with BAiley in her wheelchair with about four bags of groceries…that was until we had been standing outside for over an hour watching what seemed like half a million runners! Needless to say we happily walked 28 blocks to return to the Ronald McDonald house before night time…LOL! Oh what an experience NYC is.
So today was day one of the 3f8 treatment. The morning started out ok as we had to arrive at 8am. Unfortunately they forgot to mention that upon arrival Bailey would have to get a finger prick to check her blood. That was the end of her great morning as it quickly upset her because she still doesn’t like “pokies”. AFter much persuading we got the finger prick over with and she was able to go to the playroom before treatment started. On the first day of 3f8 treatment, there are alot of pre-medications that must be filled and alot of questions that needed to be answered. With that being said the treament did not officially begin until 2:11pm. By 2:19pm Bailey was in the most excrutiating pain imaginable. Nothing could have prepared me for the pain I had to watch my little girl endure. The doctors and nurses all told us that there is alot of pain when receiving the 3f8 treatment but I was not at all prepared for what I saw. My heart broke into a million pieces as I had to watch her go through this pain for over 30 minutes. Thankfully they gave her alot of medication to help cope with the pain but it still was not enough. She cried and screamed for what seemed like an eternity but bless her little heart as soon as they told her she was finished with the treatment, through her tears she said “Yay, I did it…I finished it…yay”. My little girl is so extremely brave as it all of those children that were in the day hospital with us today. It is so unbelievable to see the strength and courage these children display every day of their life. They know the importance of treatments and like their parents are so willingly to do whatever it takes to get them better.
Thankfully we were able to come back to the Ronald McDonald house late this afternoon. Bailey is still in alot of pain as I know this because even as she sleeps she is still groaning in pain despite the dilaudid (a morphine like medicine only stronger) I am giving her every two hours. She is such a brave little girl and such a fighter. I thank God every day for my little girl and everyday I get to spend with her. There is nothing I wouldn’t do to take all of her pain away but because I know that I cannot do that I will continue to faithfully pray that God will. He is very capapble and able of healing my little girl and I will continue to believe for a miracle.
Please keep Bailey in your prayers, especially this week as she has four more days of this treatment. I appreciate all of the prayers and support as always. I will keep you updated with day two of treatment.