Yay!! Cydney made it through treatment! She had her last day of Chemo on September 11, 2018.
This is a day we had been counting down to. A day marked on the Calendar for the past 15 months. One that at times seemed as though it would never arrive. One I also could not have every said we would be celebrating. I still find it hard to believe that we were thrown into the world of Childhood Cancer just 15 months ago.
The day was set to be a happy, joyful and amazing day. We had family in town to help celebrate. We had a party planned with friends and those local that have supported us through the journey.
First thing that morning preparations for the party were finalized, we all went to Clinic together and began the waiting game. The day in Clinic began as it usually does. Getting her vitals, and settled in to the room. By this time Cydney is really nervous and has been anticipating the port access. The worst part! Saying she doesn't want a shot and she can't do this again. It is tough to see her put up the fight and not say it is OK, because it's not! She shouldn't have to do this, no child should. She follows the directions though and through her tears and pleads to no do this again, she is accessed! Blood is drawn for her labs and sent down while we wait again. The tears are dried and a joke made to bring laughter. I gave her a hug, telling her "good job, it's done" then gave her a bigger hug. She will then either ask for her tablet or snuggle in for a nap. While we wait for her labs to be done and counts to be reported we talk with the doctors, child life specialist, and social workers about Cydney's current condition. Ask questions we have thought of since the last visit and discuss what visits will look like in coming months. he also needed Platelets, which added another hour to our stay.
There was miscommunication and misunderstanding about what was to happen on her last day. We were thinking this being her last Chemo treatment would be the day to celebrate. We were told there would be a gong to hit and they have a song to sing for her. As things were wrapping up from her treatment there was not any mention of bringing the gong or where she would go to ring it. After asking one of the nurses about it, we were told that normally the celebration is kept for after the end of treatment scans coming back clear. We elected to let her ring the gong this day, as to us the celebration is being done with Chemo. She will be getting scans for the rest of her life, there is no end to those.
There are a mixture of emotions that come with the end of treatment. Happy to not have to go back to the Clinic for Chemo, excited to have no more nights in the hospital on the calendar, overjoyed she has made it to this point. There is also fear and uncertainty, the "safety net" of the Clinic is gone. No more getting blood counts, vitals, the peace of mind that someone is there monitoring her. Of course we know if we have any concerns at all to call them right away and they will see her. Leaving behind a piece of you life for the past 15 months is not always easy! Even if that piece is not necessarily a wanted part of life.
We are moving on into a new phase of life. Life after treatment. What does that mean? What does that look like?
For now it means she will no longer be going in for the chemo treatments in three week chunks. She will not be getting the chemotherapy drugs and will begin to regrow her hair. She will still be going in monthly for her port to be accessed and flushed, she will increase her time in therapy sessions as well as in school as her stamina rebuilds and she is able to handle more time. She will remain to get MRI scans for the rest of her life. She will get one at the end of the month and then again in December. After that one as long as all looks well and there is No Evidence of Disease (NED) she will be able to wait 6 months in between scans for a two year time span and then move to yearly scans.
Plans to remove the port will be discussed after the December scan. The g-tube will remain for the time being. She needs to be able to eat enough by mouth she is gaining weight. She is consistently in the range of 32 to 35 lbs. While she is small and always has been we need to see that number increase to be comfortable to get the feeding tube out. The tube also makes administering medication easy. As we follow up with neurology and her nausea subsides or goes away we can consider pulling back the nausea meds as well as reevaluating her seizure medication. She will be monitored for any late effects from the Chemo drugs.
End of Treatment Party
The party for Cydney went well. Many of her friends and teacher came over to celebrate her being done with Chemo. Cydney looked forward to the party for weeks. She told me during the party, that "this is what a party looks like" seeing the support come together and to see her classmates and friends over to interact with her was heartwarming.
The kids took interest in pictures of Cydney's journey. Many of them I'm sure have not seen what she has endured over the last 15 months. They have been told the story and have seen her for the last 6 months since she has returned to school, although they have not seen the setbacks she has had to overcome.
We were able to receive a cake from the Icing Smiles organization. After applying for a cake you are set up with a baker in the area to design and make the cake for you event. It was a touching coincidence the baker was a mom of a friend in Cydney's class. We also ordered cookies from another school parent, Q Confections.
Coming up:
MRI scans in Phoenix on September 27. There are nerves surrounding these scans, as there will be for any and all in the future. We hope for clear scans, that the treatment she has endured the past year has done its job and there are no signs of cancer left behind.
An appointment to get fitted for new leg braces. Her foot drop, an effect from the chemo drug vincristine is getting worse. Her tendons are tight in the back of her foot and ankle, causing her to loose the range of motion and foot to be in a pointed position. Making being flat footed hard which in turn make walking harder. We are hoping the new braces will help stretch these tendons and give her the range of motion back. Other options are casting or surgery.
An appointment with an ophthalmologist to check for any vision problems or eye concerns. There have been times she says she can't see certain things or I find her looking at a book and straining to see what it says. Whether this is a vision issue or processing issue we don't know. The last time an ophthalmologist looked at her she was unresponsive and not able to tell them how things were looking to her. Hopefully we can get some clarity on any issues she may have if any and how to help her work around them.
Trip home to OK for Christmas. We are all very excited to go HOME and to see all the family and friends there.
Make a Wish Trip in January. The kids and our family will have a trip of a lifetime to Disney World, thanks to Make A Wish Arizona and Give Kids the World. 
Our families will be able to meet up with us in Florida and experience Disney with Cydney, Nathan and Lily; as we all take some much needed time away and to let the kids be kids, with no worries and tons of fun!
Thank you all who continue to follow our journey and send messages of support, prayers and encouragement.
