As we close out on 2017, the hardest and scariest year we have had, I choose to focus on the Joy we have had.
Not to forget the struggles, fears and loss of the "easy" life we had. These challenges and struggles we have faced the last several months have taught us to cherish each moment. Take nothing for granted!
Moving to a new town is always challenging in some ways. The need to settle the family into a new home, kids into a new school, building a circle of friends and support. Never did we expect to endure a life changing experience as drastic as Childhood Cancer in the first few months of being here.
While we do not have family in the local area we were able to lean on our Military family in those first crucial hours. Finding care for Nathan and Lily as we were tossed into the whirlwind of the PICU and learning what the next step would be for Cyndey's medical needs. Phone calls were made and numerous families were ready to help anyway they could. From meals, helping Jared get things situated at work allowing him to focus on family, gift cards to help with fuel expenses and other expenses that came up while living and traveling between two cities and preparing our home with new accomodations for Cyndey's wheelchair.
We can't express enough how Thankful we are for the quick responses and endless prayers from everyone.
Cydney continues to progress each day. Working hard through her therapy and school sessions.
This week she has started showing interest in using a tablet. The coordination to move her finger around in a controlled manner to perform the tasks required is something that has been hard for her. She also read a few sentences during school on Monday! This is a huge step as we get an idea of where she is academically and cognitively as well as what she is able to see. There is some optical nerve damage, although an official vision test has not been done. Up to this point her speech was not at a place we could do a proper vision test to determine what she is seeing and how well she sees.
As we enter the new year we will be having her assessed with the school district in order to line up any and all services she needs to get on track academically.
Sibling thereapy is the best therapy! Seeing the kids play together and encourage Cydney to play along is fun to see and hearing the belly laughs from the next room is heartwarming. Nathan gets the best laughs from his jokes and whoopie cushion sounds. Lily's silly antics and loudness also bring out the deep down belly laughs.
May you and your family find Joy this holiday season!
These last several weeks with a break in the Chemo treatments has given Cydney a chance to concentrate on therapy sessions and get some rest days in when needed. She still tires easily and needs a couple naps each day.
Our daily routine consist of waking up and getting Nathan ready for school and onto the bus, feeding Lily and getting her and Cydney dressed for the day, preparing Cydney's food for the day, preparing Cydney's medications for the day, then we are usually off to Therapy by 930 or 1000.
Depending on the day Cydney has an hour or two of Therapy each day. As she gets stronger and on days she has more energy they will extend the sessions as she is eligible for three hours each day. She receives Physical, Occupational and Speech therapies. Each working on their own goals and objectives while working together at the same time. Many times we co-treat during at least one session a day to ensure she can see each therapist in the time frame Cydney is able to work before getting too tired. On Chemo weeks I usually give her a day to two off and just take my cues from her as to how much she can handle.
Once we are home from Therapy it is time for lunches and a much needed nap for Cydney and Lily. Cydney is feed small feeds throughout the day through her g-tube. We try to get as much as we can in order to keep her weight up and energy as high as possible. It can be hard to get enough in her some days, especially if the nausea is too bad and she ends up getting sick, sometimes multiple times a day. She is still mainly on the Liquid Hope/Nourish Formula as well as blended meals of what we have at home. She is sensitive to smells, therefore we have to be aware of foods we are making and to keep strong odors to a minimum. Each day is different in regards to how nauseous she feels and how much food she keeps down.
After a nap, hopefully, Cydney has a teacher come in for homebound schooling. Right now she is able to work for 30 to 45 minutes before getting too tired. She will work up to 4 hours a week, as that is the maximum she is eligible to receive. Nathan gets home from school by 3:00pm, Cydney enjoys going out to the bus stop and waiting for Nathan. She also gets to say hello to the bus drivers who have been asking about her and how she has been doing.
Evenings consists of more feedings, medications and bathing. Cydney enjoys her baths, they relax tired muscles and give her a distraction as she works on sitting on her own. She has been approved for a shower/tub chair. We are waiting for it to be provided to us from the Medical Equipment Company. We are also waiting for her custom wheelchair. We were told it would take several months to be ready, so hopefully any day now.
Some challenges we face with her right now are her emotions and her fears. Emotional lability is something that is a side effect of the Posterior Fossa Syndrome. She fluctuates from happy to sad and back in a manner of seconds. Sometimes she will even pretend to be sad about something and will end up in tears. She has a hard time with me being too far from her for too long, and her patience can be thin. It is a constant balance in being with her or close enough to her she is content and being able to do other things around the house. When she is upset though, it is usually pretty easy to get her mind to something funny or a good thought to cross her mind and she is laughing as hard as she can. She is also fearful to swallow, and while we have tried to motivate her with foods and things she liked before she is scared. It is a constant work in progress and will come in time, we can only offer the foods to her and hope one day she will be ready to try them.
One fear she is working on in Therapy is getting more comfortable with the walker. She is more comfortable having me hold her from behind while she walks as opposed to using the walker. She chooses to walk anywhere she needs to go, just as long as I am holding her from behind. It is more of a security feeling at this point. I am not holding much if any of her weight, only there to keep her from falling when she gets tired or off balance. Her speed has also increased dramatically in the last couple of weeks. We try to motivate her to use the walker to give her the independence to go on her own around the house. She is not ready for that just yet.
Her voice has gotten much stronger and is much easier to understand than just a few weeks ago. There are still times we don't understand a word and it can get frustrating for her until we are able to figure it out. Most of the time we can find humor in our misunderstandings.
As we continue this journey I try to see the Joy in each day. Every day she is getting stronger, every day we are shown how much a fighter she is and how her determination will carry her far. There are many rough days ahead and we will face those with as much grace as we can and take them one day at a time.
Mt. Lemmon
Santa at the Squadrons Children's Christmas Party
Zoo Lights
Tree decoration
This Tuesday, December 12, Cydney begins her second cycle of Chemotherapy. We will spend the night Tuesday in the hospital where she will be given her Chemo drugs over a 6 hour infusion as well as fluids and observation for the night. We hope to be able to come home Wednesday afternoon and continue on with our daily routines. She has three days of Chemo this cycle December 12th, 19th and 26th. As long as all her blood counts stay good and she is able to stay on schedule, we will then have another three week break.
Thank you for all the continued support and prayers. They are truly appreciated and felt.
