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.  

2018 *Let's Do This!*

2018 has begun! We are ready to face this year with courage, love, and joy.

There are challenges ahead and it will be a year of treatments, doctor visits, intense therapy and a lot of relearning for Cydney. Our goal is to be as encouraging as we can through her struggles and celebrate all the accomplishments she will make.  She remains to fight hard and show determination to get back to doing the things she could before her surgery.

2017 ended with family visiting, sickness and a relaxing night in for New Years Eve. Just before Christmas I took Nathan into the doctor for some issues with snoring at night. Much to our surprise he had strep throat. He never complained of a sore throat or had a fever and never acted like he did not feel well. We got him on antibiotics and did our best to keep him from getting too close to Cydney. Thankfully it did not get passed along to anyone else.

Waiting for Doctor to bring prescription for Antibiotics after finding out he has Strep Throat

Cydney loves to sing and put on a show. She has recently gotten in the signing mood again and showing a glimpse of herself prior to surgery. She puts all her emotion into the songs and is quite expressive with her hands. One day at therapy she put on a show in the hallway to "Let it Go". There were a few tears from those watching and lots of cheers when she was done.

We Celebrated Christmas with my family from Oklahoma (Grammy, Pop Pop, Aunt Jo and Aunt Cait). We kept the day they were arriving a surprise for Cydney. For one she loves surprises and has the best reactions and if she knows they are coming she gets impatient waiting for them. I left to pick them all up at the airport and by the time I got home she was upset that I was gone and had been asking for me. I give her hugs trying to calm her down telling her I was back home. Then one by one they all walk into the room for her to see. She had the best reaction!

Opening gifts. So many wonderful people from the hospital and therapy center sent gifts for the kids. We are grateful they took the time to think of the kids this holiday season.

A few days after Christmas, Cydney spiked a fever. We are instructed to call the clinic immediately with any fever and to come in for labs to make sure her numbers are good. If numbers are low and she has a fever she will be admitted to the hospital. This time we were concerned for Strep, since Nathan was just getting over it himself. Cydney was given both the Strep and Flu swabs, blood was taken and some antibiotics given. After a few hours in the Clinic we were cleared to leave as her counts were good and there was no longer a fever. We would wait for 3 days on the blood culture to be read and would receive a phone call if any further medication was needed. Thankfully all came back clear.

The New Year began with a scheduled ultrasound. Cydney has been complaining on and off of side and stomach pain. We wanted to get a look just to be sure there was not something serious going on. The area she points to as painful is close to the shunt catheter. There is a possibly of pseudocysts forming around the catheter at any point after a shunt placement. Something we will forever be concerned with when abdominal pain presents. Everything was clear and we were sent on our way.

Therapy continues to go well. Cydney can be stubborn some days and not want to cooperate fully with the therapists plans. Some days takes more coaxing and encouragement to get her ready to work. She always ends up doing the work needed, she is just doing it on her terms. I can't blame her, she is trying to have control of something and that is the one thing she can take control of. You can't force her to move. I can only imagine how frustrating it can be to not be able to do the most simple things for yourself. I can see she gets bored with the same activities and disappointed she can't do more. We all work together to keep her excited about therapy and to keep the activities fun. Some days there is compromise for her to do their plan, then she can choose an activity or game she wants to do.

Dream BIG !! Painting is a favorite activity

Working on writing and drawing. Her fine motor control continues to improve. Her writing is back to where she was at the age of 4 or 5. Some letters are backwards and spelling is not quite there on some words, but the fact she is holding the pen correctly and writing letters is something to cheer about. 

Bath chair arrived! Much easier to give her baths now as well as giving her the independence back to do it on her own without me having to hold her up. She loves the chair and to relax in the tub, with bubbles of course! 

Working on the treadmill to get her to extend her stride and to help her make a more natural step. She currently leads with her left foot and will bring the right one next to the left as she steps instead of each foot being placed in front of the other. We play music, sing, blow bubbles or just talk. Anything to distract her from the work. 

Working on her fine motor grasping. She really enjoyed this activity and it was a favorite of this session. We will incorporate this at home as well. 

Working on reaching and stabilizing herself, as well as tracking. The worm moves back and forth as she attempts to get the rings around him. She has named the worm Herman. This is  also a favorite activity.

Gaining confidence with her walker.

More work on reaching, this time some cross body reaching. Also working to see where her vision and tracking are best. Seeing things midline are a little more difficult for her and her accuracy of placing items or finding items is less than when seeing something a little higher.

Working on keeping her balance while reaching for the objects stuck to the mirror then placing them back in the bin.

Homebound schooling has been going well for Cydney.  We try to get her 45 minutes each day. Next week we will meet with the teachers,specialists and therapists to determine the best services to provide Cyndey through the school.  

Nathan has returned to school. I think he was ready to go back and to get into his routine again. It is an adjustment as he is tired when he gets home. He has decided he would like to try out Karate, so I will be looking for a local class for him.

Our sweet Lily will be 2 soon! She is full of energy and is cute as can be. She knows it too! She has the best facial expressions, full of sass and sweetness.

Next Chemo cycle, cycle 3, starts January 23. This time she will be inpatient for two days and released on the third day if all goes well.  

Thank you all for the continued support and prayers! We are truly greatful! 

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!