So many thing have happened since the last post. We have spent so many days each month in hospital and February wasn’t going to be any different. We had been home for a few days and in the evening on Valentine’s Day Audrey got a fever and had to be admitted again. Of course she didn’t go in without some supplies to make it more fun. Her new fake rat Mark, the yarn Viking hat from another cancer friend and her festive Valentine balloon. When we got to the ER she had the rat in her pocket which scared the nurse. Audrey was very proud of that and laughed very hard.
We were in for most of the week but we had a very important event coming up that we knew we had to attend because Audrey had been looking forward to it for months. The annual Children’s Cancer Network fashion show. We had been positioning it all week that if we were still inpatient we were going to need a temporary pass to attend as sometimes you just have to live life. The good news is we were discharged on Friday and were able to attend. Cole and Audrey were both in the show and it was a wonderful event. We were so blessed to be a part of something so great.
The next day we had our last round of this cycle of chemo which also means the last scheduled inpatient chemo that we will have to get. Audrey has started to enjoy scaring people and decided she needed to step up her game a little. We borrowed a mask from our friends in POTC and Audrey and Child life Tracey went around the floor scaring staff. Turns out some people are terrified of clowns. Audrey would laugh really hard and tell them don’t be scared it’s just me. Audrey decided she was tired of being in the hospital so when her chemo and blood had run she was ready to go home at 2 AM in the morning so we left.
This would be another short stay at home and on leap day we were back in the hospital. The really strong chemo she got had caused her counts to crash and she was burning through platelets and red blood cells like crazy. On top of that her white cells were completely gone and needed some time to regenerate. Of course everything is better when you are transfused with Unicorn blood. This time she was taking a long time to recover and another event that Audrey had been looking forward to for a while was coming up. So we started working with our doctors to make sure we could get a short pass to leave attend the event and come back. This event is called Respect Bald. It is a fund raiser that Joe Maddon from the Chicago Cubs organizes every year. The players and fans donate money and get their heads shaved. Audrey and Cole shared shaving Joe’s head and other players throughout the event. After we got done the Cubs had a suite waiting for us and the other children cancer families that were helping at the event. Along the way Audrey met her new best friend Clark the cub. He is the Cubs mascot and Audrey fell in love with this guy. They smile on her face and the joy she showed every time she looked at him and hugged him was awesome. Definitely what she needed in this dark time of being hospital bond. I was very tired as I had spent the night before with Audrey and fell asleep during the game only to wake up to a foul ball being hit into the suite next to us. NEVER sleep at a baseball game. During the game Clark came back to visit with Audrey and she just loved on him the whole time. She hugged him, held hands with him and even took selfies together. It was great to see her smiling and outside of our one room suite in Mesa.
We had 6 hours of great play time but we knew we had to be back at the hospital by 4 and we were. It was a few more days before we finally got the counts we were looking for and got to go home. The day before we left we also found that a special guest was stopping by for a visit. Charlie Puth a young singer and song writer stopped by and said hello to all the kids in the forever young zone. Audrey didn’t know who is was but it was fun to have something to do that day. We finally got discharged but knew we had to be back Thursday for her MRI. We were very nervous about this MRI because it was our first one since we got back from radiation and felt it was really going to set the tone for treatment going forward. If we got a clean scan it would mean we continue course and finish the current chemo plan. If we didn’t see favorable results however we were going to pause reevaluate and change course. Let’s just say it was a very long day of waiting. Our awesome doctor called that evening to give us the good news. No visible cancer! This doesn’t mean she is out of the woods yet but it does mean the treatment is working and for the first time in 10 months she has a better chance of beating this first round of cancer. These were amazing words and something that would trigger some deep thought. Of course I was overjoyed to hear that we are winning but I have been doing the best I can for the last 10 months to mentally prepare myself to bury my daughter at any moment. I have been preparing for the day when the doctor tells us worse news if that’s possible. It turns out it’s not an easy shift in thinking it takes some time to understand. Now we are starting to not worry about her leaving soon but starting to think about the long term ramifications to the choices we have been forced to make. Nothing with cancer comes without a cost. Turns out the chemo to treat cancer can cause cancer especially at the dosages and the number of times Audrey has gotten them. Then the radiation will cause some level of brain damage over time as well as growth issues in her back. All things that we will work through but a new mindset none the less. I had a realization one day that we now have a kid with special needs. It seems obvious now but in all the craziness of just trying to keep her alive and rid her body of cancer I hadn’t thought of that.
Since the MRI was good we have continued the plan to slowly scale back the intensity level of chemo that she has been getting with the most intense being completed. She is still getting 3 different chemo’s but we have switched out the most intense with to a new one. The new one doesn’t seem to hit her blood counts as hard but seems to make her very nauseous. The best part is she only gets it every three weeks which has led to much less time in the hospital. Her awesome medical team has also worked out a way to get chemo that is normally given inpatient to be given outpatient with IV fluids and home health care. This means we spend a day getting chemo then go home with an IV. The next day the nurse comes and takes out the needle and verifies everything is good. We really like being at home. On the 10th day after chemo we had a clinic appointment but Audrey was looking a little run down. She also had a special friend make a surprise trip to the hospital to see her. It turned out Clark the Cub wanted to see her one last time before heading back to Chicago. He hid around the corner and her smile lit up the world when she came around the corner and saw him. A very special video. Clark posted that to the Cubs facebook page and it got over 292,000 views, over 2,700 shares and more than 400 comments of encouragement. It was a very special moment. Audrey’s counts were low and she had a low grade fever so they admitted us for the evening to get reds and platelets as well as observe her. The next day was the planned Easter egg hunt. A new friend Audrey had made named Ashton was in getting his very last chemo treatment so he hid the eggs for all the little kids. With the visit from Clark, the racing around the unit with Ashton and the Easter egg hunt this was a very good visit. Being home for a couple of weeks before coming back probably helped a bit as well.
Easter would mark a huge milestone in our treatment. It is the first holiday minor or major we have been home for since June 16th when the journey began. We spent the day just playing around in the morning. Audrey and Cole went through their baskets then were ready for an Easter egg hunt out front as we do every year. Audrey was good for a couple of rounds but quickly ran out of gas. Cole however played for many rounds and is getting much better at finding the eggs.
Since then we have just been spending as much time at home and together as possible. We had 3 solid weeks at home before getting admitted yesterday after going to the clinic 10 days after chemo and again needing platelets and red blood cells at about 5 she spiked a fever and they admitted us for observation. Hopefully a short stay. The good news is it gave me the time to sit down and catch everyone up. We are blessed every day to spend each day with Audrey and finally have a better chance of tomorrow. We will keep praying and keep taking it day by day. We know there are challenges yet to be faced but we also know that this little girl will not settle for anything but greatness.