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.