Joy

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! 

Getting stronger

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.    

Being Thankful

As Thanksgiving approaches I look to my family and find many reasons to be Thankful. Even as these last several months have sent us on an emotional rollercoaster with so many twists, turns, peaks and descents, there is still plenty to be Thankful for.

*For family. Not only those living in this house, but those who have reached out in support as we have traveled the road of the scariest and most stressful time of our lives.

*For the support that has poured in through providing meals, cards, letters, and gift; being available to help at the house with our daily life and juggling of all the kids needs. In an effort to keep life normal and as uninterrupted as possible.

*For the health of Nathan and Lily and the continual improvement of Cyndey.  While it seems some days we have not made progress or that progress is slow, to look back to pictures and videos of just four short months ago to see how far she has come is a blessing.

* For being home as a family. Happy to be able to celebrate the holidays in the comfort of our home all together. 

*For each other as we learn to live our new normal and to have each others backs on the hardest of days.

Seeing my children play together, fight and pester one another brings Joy. I am Thankful they have this time together. 

Wish everyone a Happy Thanksgiving!

First round done

Cydney has completed her first round of Chemo.  She handled it beautifully and didn't let it get her down.  She now gets three weeks off to focus on rehabilitation therapies and get even stronger. 

She has improved so much in her ability to walk with us giving her only the slightest amount of support for balance under her arms.  She is holding all her weight on her own and controls the pace. Her strides have become more even and there is less crossing over with her feet.  She is still very cautious and scared to use the walker, she likes the feel of us behind her. One of our main goals in therapy is to gain the confidence to use the walker on her own.  Giving her the indepence and freedom to go where she would like on her own.

Another milestone she is getting closer to is using the toilet consistently. She is able to let us know when she needs to use the restroom, and then we are able help her get there. 

Her speech improves more and more each day. Her tone is still quiet, and some letter sounds sound the same. It may take me a few rounds for me to catch her whole thought, but I eventually catch on to what she is saying.

A favorite activity in therapy is swinging.

She is also in the process of getting a homebound teacher to do schooling with her at home. She is excited to start school again.  Hopefully a teacher will be lined up in the next few weeks. 

We are constantly amazed at how well she handles all of this. Her overall attitude remains positive, until visitors have to leave. She does not like saying goodbye. 

Thank you for all the continued prayers and well wishes. I let her know often she has many supporters out there and all are wishing her the best. 

Chemotherapy has begun

Cydney has had her first two doses of Chemo. Last week she went in for the first dose. We showed up to the Oncology Clinic around 9am. Cydney was taken into a large room with several chairs lining the walls filled with other children waiting to begin their Chemo treatments. In this room, her port is accessed and blood work is taken for the necessary labs. Cydney does not like the port access process. Although she is numbed by a cream, the idea of a poke is still traumatic for her. We were also introduced to the Social Worker, Child Life Specialist, Education Specialist and several nurses on the Oncology team. Everyone was welcoming and ready to make our stay as comfortable as possible. After about an hour of getting settled in and having blood drawn we waited for her labs to come back and clear her Chemo treatments that day. This will be the routine each time. 

November 1, 2017-First day of Chemo. Waiting on nurse to come access port

Once her labs came back we were taken upstairs to her hospital room and started on fluids, nausea meds and also gave her some formula. The Chemo infusion was to last 6 hours this time and she is admitted overnight for the first dose of Cycle A. After the Chemo is given she receives more fluids overnight and is able to go home 12 hours after those begin. The quick overnight stay is not too bad and gives her a chance to get some nice peaceful rest. Something that is not to come by at home with two younger siblings.

Cydney was surprised to have Grammy come in for a visit. She enjoyed her time with Grammy through the weekend and was very sad to see her go. Cydney loves to have visitors and has had a steady stream of them since coming home from the hospital. It is hard to say good-bye each time, but know they will be back soon. 

Having the extra help at home has been very helpful. Cydney's needs require someone to be close by at all times. To ensure she does not get sick and aspirate, keeping up with her feeds and medications throughout the day as well as getting her to and from the bathroom as she needs. She has been able to alert us when she needs to go and will walk, with assistance, to and from. She has also started to dress and undress herself again. Regaining that independence is a huge step for her. Her verbal communication is getting better each day as well. There are times she is telling us something she wants or needs and it is hard to understand, which causes a lot of frustration for her. Her emotions also go extreme from one minute to the next. From laughing to crying in a matter of minutes. At the clinic one day she was talking with one nurse about Didgee and started to make him dance, when the nurse mentioned she liked monkeys to Cydney became very protective of him and held him close. Repeating that Didgee was "all mine", and she is never letting him go, no one else can have him. This ended in her crying for several minutes, repeating that no one can take him.

Beads of Courage strands

The day after she was discharged we went back into the clinic for a Neulasta injection. This is to help her fight infection as her immune system is now compromised. We have to be cautious who she is around and to keep her away from crowds as much as possible. While we don't want to seclude her and keep her in the house all the time, we must be careful to not expose her to much.

Getting back to therapy after 4 days off was hard for her to get back the desire to put in some hard work. After easing into the session with a game of Don't Break the Ice, she warmed up and was motivated to do some walking and eventually the swing. The swing has become an incentive for her to work hard and do what is asked of her in therapy.

The second dose of Chemo was today, November 7. Again we go into the clinic for labs and await the results before receiving chemo. Today's Chemo infusion was only about 15 minutes long, but with the wait for labs and pharmacy to send up the drug we were there a total of 3 1/2 hours. Cydney slept most of the time we were there. She was not happy to have to be accessed, part because she is scared and part because they woke her up to access the port.

Kisses for brother! 

We return next week for one more dose of Chemo for this round and will then have a three week break before doing another Cycle.

Thank you all for the continued prayers, messages, cards and letters. Knowing she has so many thinking of her and encouraging her is heartwarming.

4 Months gone by!

It has been 4 months since we first noticed signs something was off with Cydney. What started with neck pain quickly developed into more concerning symptoms as she began to walk with an unbalanced and staggered motion to being unable to balance herself.

June 19- At doctors office for Nathan and Lily's well checks. Also asked about Cydney's complaint of neck pain for several days and her changed in gait.

June 21- Went in for blood work to rule out infections or other unseen issues.

June 26- Going in for X-Rays to check alignment and possible scoliosis. 

June 27- Taking a video of Cydney to show her difficulty with walking as well as not being able to move head or neck around.

June 29 8am- Went into see pediatric orthopedist, to get his opinion on her X-rays.

June 29 6pm- Being admitted to Tucson Medical Center to receive an MRI in the morning.

June 30- Went in for an MRI at 8am. We waited until close to 11am for her to be done and to see her again in the recovery area.

 Close to 1pm, back in her hospital room awaiting the results of the MRI.

June 30 1:15pm- ER doctor, our pediatrician and a hospital case manager were waiting for us in a conference room across the hall. We were then told about the 5 cm tumor at the base of Cydney's brain. Decisions had to be made on her immediate care, we opted to be transferred to Phoenix Children's Hospital as soon as possible. Soon after phone calls to family and friends began as we quickly began planning for the next steps in Cydney's care. By 4:30pm Cyndey and I were being loaded into a helicopter and on our way to Phoenix.

July 1 8am- Cydney is taken back for a pre op MRI and surgery would immediately follow. After the longest and very stressful 13 hours, Cydney was brought back to PICU from surgery and we were able to see her again.

Morning of Surgery- July 1, 2017

Night after surgery- July 1, 2107 9:30pm

These past 4 months have been stressful and emotional. We have seen an incredible amount of fight in Cydney and her determination is unwavering. We did not know how she would wake up from the surgery. We were told by our neurosurgeon about the possibility of Cydney not being able to talk right away and could be mute for a few weeks or months. We were told motor function could be slow at first but should come back with Physical Therapy. The extent of her loss of function was a surprise to many. For weeks doctors were unsure how to proceed or what to expect in her recovery. Posterior Fossa Syndrome effects each child differently and the rate at which they come back is on a large spectrum. Some recover quickly within a few weeks others it can take years. The range of improvement also varies significantly.

Going thorough the therapies has been a lot of work for her. There have been many days she was in pain or tired and did not want to do the work. She always found strength to do some work each session, getting stronger and stronger by the day.

Day one of Therapy:
July 11, 2017

First time in wheelchair and out of PICU room- July 11, 2017

First time on Tilt Table- July 18, 2017

First attempt at coloring during Physical Therapy- July 25, 2017

Getting fitted for hand braces- July 27, 2017

Getting an EEG after Seizure-July 30, 2017

Working through Occupational Therapy and Physical Therapy- August 2, 2017

Fitted for braces to help support legs as she stands.

Third EEG-August 20, 2017

August 28, 2017 Therapy Session

Speech Therapy- September 1, 2017

There have been set backs and days where after radiation she was too tired to really participate in much therapy. The last month she has show tremendous progress not only in her physical endurance, but her speech is coming back and movements are becoming more coordinated. 

Saying 'Mommy'- October 10, 2017

Sibling Therapy is the best kind of therapy!!

First walk in gait trainer- September 14, 2017

Final Radiation Treatment- September 18, 2017

First day on bike- September 29, 2017

Physical Therapy- October 25, 2017

Painting during Therapy Session-October 27, 2017

The joys of being home, include being able to all be together under one roof doing normal family activites and enjoying quality time. Sitting outside by the pool, having the ability to easily wheel Cydney down to the Ramada to join us as we cook out and watch football games or listen to music is a favorite of hers.

Taking a nap on the couch while the younger siblings play and make ruckus. 

Night out at the Halloween Howl!

We were able to have her Chemo treatments transferred down to Tucson. She will be seen at Banner University Medical Center. Having the chemotherapy done in Tucson will help in being able to care for her as well as Nathan and Lily. Her first treatment is November 1st.  The next phase in her battle will be a rough one. Being the fighter she is, I am sure she will face this phase just as she has everything else. With a positive attitude and sheer determination.