Wednesday, March 19, 2008, 11:58 PM
Yesterday Adelaine has part two of her sinus surgery. She had a lot of anxiety about it this time. She was very upset and crying and kept repeating “I don’t want to have a surgery” over and over the entire morning. She went on to explain exactly which parts she didn’t like about it too! The biggest hurdle was the actual part of being put to sleep. This time she decided that she did not want either the mask or the white “milky” medicine that they push through her port to put her to sleep. While we were getting ready I kept thinking, “How can this be my life?” “I have a three year old who is crying about having surgery and explaining with educated detail why she hates it so much!”
Once we got there, and after giving the Anesthesiologist a very cold shoulder, she made it through! I did get the Oncologist to agree to do both her sinus surgery and her spinal injection of chemo both at the same day, so Adelaine wouldn’t have to go through all this two days in a row. I am sooo thankful that worked out! Hopefully she won’t have to be put to sleep again for three more months. Then once more after that and we will be all done!!!
She keeps saying how she never wants to have surgery again, so we’ve been talking today about getting her port surgically removed after she is all done with treatment. She remembers me telling her how they put her port in and has figured out that they must be taking it out in much the same way. She seemed intrigued that they will be cutting her skin to get it out and sewing her back up. (She knows that’s why she now has a scar!) I told her that the doctor will give us her port and she can soon hold in her little hand, what is now inside her body! I for one can not wait to have the port out and on her nightstand that first night! It will mean that ALL this is really over, and she will have her freedom once again to live a “normal little girl” life!
Doctor Orobello, her ENT, has been so wonderful throughout all of this. I have decided to give a name to those rooms where you wait while your loved one is in surgery. I’ve called it the Vulnerability Room! There is nothing that slows time down quite like waiting for your child to get out of surgery. It seems like every minute that goes by is really more like an hour. Tick……….tick……..tick. Then you think you hear the doctor coming, but it turns out to be someone else going to their Vulnerability Room to wait their fate. Finally after seemingly hours go by, the doctor comes in, his next words could be great or they could change your life forever. The next second could become one of the highest highs or the lowest low of your life. Before the doctor ever speaks a word you are doing everything you can to try and read what he will say next. The only way I make it through sitting in that room is knowing that God loves me and my precious daughter and no matter what He’s going to be there with me, holding my hand, and hers!
After three recent surgeries, this time my meeting with Dr. Orobello in the Vulnerability Room was far different from the first one, and far better. He came in, (not with the cup of coffee in his hands like last time, which would have been cool because I would have known right away that everything went well. Like I’ve said before, it’s not like a doctor is going to come into the V. room and say, “I’m sorry but you daughter didn’t make it through surgery, but on my way in, I stopped off and grabbed myself a fresh cup of hot coffee! No, that’s not likely to happen!) Anyway he said that everything went well and that her infection is 100% GONE! We went from him being very concerned that this infection could take her life, a few weeks ago, to the infection being 100%GONE! WOW! We are so thankful, thank you God!
Although, two days ago Adelaine had Vinchristine injected into her port, (which is an extremely powerful and harsh chemo), a second sinus surgery (in two weeks) on yesterday, along with another harsh chemo injected right into her spinal cord, another five days of steroids began (as of yesterday as well), plus tonight she restarted her oral chemo, TODAY WAS A GREAT DAY FOR HER! She played so hard with all her toys and we spent the entire day at home. After her first sinus surgery she began snoring horribly. Finally about 4 days ago, the snoring completely stopped. Even after her second surgery yesterday, she is sleeping peacefully and quietly in her bed. She looks great too! Her color looks rosy, and her counts are back up. Through all this since her hair started to grow back last year, I have not seen, or felt, or found one single strand of her hair that has fallen out! Looking at her know, no one would ever guess all that she has been through. The only thing would be her tiny little port scar over her heart. That is her battle scar and we are all VERY proud of it!!!!!
Thank you for praying for Adelaine. God has heard and God has answered!
Ang
PS The fashion show was amazing. I will post pictures soon. Adelaine has discovered that she wants her ears pierced. She decieded this after the first fashion show a few weeks ago. Every day she’s asked about it. I told her about the needle that would be involved and how it might hurt. She stuck her chin out and said, “I can take it”! And you know, I bet she can!!!! Maybe that could be one of her end of treatment rewards. It seems ironic to me that after being stuck so many times that she will be rewarded with yet another stick!!! Isn’t that life?
