Tuesday, November 7, 2017

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.

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