Keeping up the fight

Cydney has completed three of her nine chemo cycles. She remains to handle it all with incredible strength and resilience. 

She does have anxiety about being accessed and having to be poked. While we apply a cream that numbs the area and helps to lessen the pain of the poke she knows what is coming and gets nervous. Now as soon as I put on the cream she says she does not want and "owie".  Once she is accessed she is laughing and smiling again. 

Her first two cycles were A Cycles. We arrive at the clinic in the morning to get lab work done and check her counts.  Once counts are back and she is cleared for Chemo she is admitted overnight for the administration of two Chemo drugs, Cisplatin and Vincristine. Over the course of 6 hours they are given and she is under observation as well as receiving fluids and anti nausea meds. The next morning as long as she is handling it well she is able to be discharged. The following day we return to the Clinic for a Neulasta shot to help fight off infection. Cycle A runs for three weeks. With the first day being the inpatient treatments, then the following two weeks only going into the clinic for Vincristine infusions. These days we are there for a few hours. She has a three week break before going back in for he next cycle.

Next is a B Cycle which runs for two weeks. Again we start in the Clinic for blood work before being admitted. This time she is inpatient for two nights to receive Vincristine and Cyclophosphamide. She also receives a bladder protecting drug named Mesna along with the anti nausea meds and a lot of fluids. On the third day as long as she is doing well she can be discharged with a return to the Clinic for Neulasta the fourth day. The second week we go in for a Vincristine infusion and again are only there for a few hours. 

Waiting in clinic for lab results

Lobby of Diamond Children's

                   

In Clinic for Vincristine infusion

Now that we have been through a few cycles and know what to expect it is not as scary. Still makes me anxious to see how she will respond to each treatment and hope no issues arise. 

Now we have completed the first two A's and one B cycles. There is a three week break before starting another A cycle on Feburary 20. 

The past few weeks have remained busy as usual. We had a meeting with the school teachers and therapists to begin making a plan for Cyndey to return to school. We are hoping to slowly get her back into school a few hours a week soon. She was happy to see her friends again that day and they were all very excited to see her. In the following weeks she will have more evaluations with the therapists from the school to start some in home therapy sessions. We will then be able to have therapy session at home a couple days a week, making it a little easier and not have to transport her to the therapy center everyday. We have also begun the application process to get her some Hippotherapy Sessions (Horse Riding Therapy). I found a facility close to our home the offers the program. There is a wait list she will be placed on once the application is completed.  

Here are a few highlights of the last few weeks. 

Nathan has started Karate, he seems to love it and really enjoy having something of his own to do. He was shy at first, but quickly warmed up and was watching to make sure I was there to see what he was doing. 

On Monday, Cydney's Mic-Key button became dislodged. We had arrived at the Therapy Center and were getting out of the car. The extension tube got snagged on the car seat belt and pulled the button out of her stomach. I did not have a syringe on hand to deflate the balloon or her replacement. We were on the other side of the hospital from the ER, I quickly loaded her back into the car and drove over to the ER. The situation can be urgent as her stoma would begin closing an make reinserting the button hard and a surgery if not done in time.  The waiting room was full of sick kids and families, as I checked in and told them what happened we were taken back to wait in a separate triage area with no one else around. We were also quickly placed in a room where a catheter was placed while we waited for a replacement button. After the nurse informed me the hospital did not have a button the correct size for Cydney I called Jared to bring in our replacement from home. A couple hours in the ER and she got the new one placed.

Lily Turned 2! On Sunday January 28. We celebrated with a Moana Cake, family and a few gifts. I loved her excited expression when she saw the cake. It was a moment I will remember.

Cydney and I went to watch a University of Arizona Womens Gymnastics Meet. We both had fun watching the gymnasts compete and even seeing a few former Olympians compete in person. Cydney was in awe of the skills they were doing and kept commenting on how much they must practice to be so good at gymnastics.

100 days of Kindergarten. Nathan dressed up like an old man to celebrate the 100th day as well as made a poster with 100 Legos.

Cydney's New Wheels! She received her custom built wheelchair earlier this month. As she learns to wheel herself around she will gain more independence and be able move around the house on her own.

Keep going strong Cydney! We love you and your courage to keep on fighting.