We have been back home from the Wish Trip for a couple months now and life went back to normal. Back to our daily routines and schedules. It was hard to come back from a week where there were no worries, no doctors and no schedule dictating where and when we had to be somewhere. We look back on the trip with happy memories and look forward to being able to go back to visit Give Kids the World on our next trip to Florida.
Fashion Show benefiting Children's Cancer Network
Cydney , Nathan and Lily were asked to participate in the annual Children's Cancer Network Fashion Show in Phoenix. Before leaving for Orlando at the end of January we had met the coordinator to pick out clothing for the kids. The kids were able to pick out an outfit from Macy's and would be able to keep the clothes they chose. Nathan decided he was not interested in being in the show, Cydney and Lily enjoyed trying on the dresses they picked out and showing them off to the Coordinator before deciding on their final choice.
On February 10, the weekend after returning home from the Wish Trip we were back in Phoenix for the show. This years theme for the event was "All You Need is Love", a signature event for the organization to celebrate survivors and their families. Over 40 survivors and their siblings were there to share their hopes, dreams and inspirations with others. The event also included an Auction, Raffle and Luncheon all benefiting Children's Cancer Network.
Cydney enjoyed getting her makeup done, talking with the other kids and being on stage. Lily decided last minute she was not going to walk out on stage without Mom.
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| Rehearsal |
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| Lily decides walking out without Mom is not going to happen. |
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| AZ Cardinals Christian Kirk |
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| When she misses her nap and only wants to be held |
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| What Love means to me! |
Follow ups and new specialists
As we navigate the road of being off treatment we are facing several after effects of Chemo and Radiation.
We had begun to notice times where Cydney was unable to hear us or had trouble hearing the radio or TV. During one of her follow up appointments in the Oncology Clinic we discussed her need for a hearing test. A known effect of the Chemo drug Cisplatin is hearing loss. Hearing tests throughout treatment had not shown any changes or deficiencies. While effects can present during treatment it can also take time for them to be seen. Her Nurse Practitioner wrote us a referral to have the testing done again in a couple weeks. We went in for this test on January 24, before preparing to leave for Florida. The test results showed moderate hearing loss in both ears and hearing aids were recommended.
We then had to get a referral to a specialist clinic for audiology and met with them on April 4 for another hearing test and to talk about hearing aids. It is unknown if the amount of hearing loss will stay where it is or if there will be any continual decline. The hearing aids she is set to get are programmable, and can be reset if any further hearing loss is to occur.
Cydney was able to pick out a color she likes and had an impressively positive attitude about her need for hearing aids. Cydney stated her friends at school would be happy for her to have the hearing aids to help with her hearing and they would all think it was cool for her to have them because she would be the only one with them at school. She surprised the Audiologist with her upbeat attitude and encouragement about getting the hearing aids, the audiologist wished she would have been recording Cydney's statement. Now we are waiting for the insurance approval for them to be covered.
On April 2, we met with an Endocrinologist for some abnormal thyroid levels in a recent blood test she had at the last Oncology Clinic followup. After more blood work and talking with the Endocrinologist about the effects radiation can have on the Thyriod based on where the radiation was done and to the areas of her brain it is common for issues to arise, he felt getting her started on medication would be beneficial. She could face issues as puberty comes and her body not producing the needed hormones as well as growth issues in the future. She has now been put on Thyroid medication to be taken daily. At first we were concerned with her ability to swallow a pill. She has done well with that and was not nervous to do so. We have told her this was one step closer to getting the G-Tube out, being able to take medication by mouth either the pill form or liquid. She asks almost daily when the tube can be removed, and I think we are on our way to being able to do so.
This week Cydney underwent an EEG to determine if there is still any ongoing seizure activity. We have not seen any signs of seizures since she had them in the Hospital following surgery in July 2017. We are hoping there are no signs of seizure activity and we can begin weaning her off those medications.
Next week Cydney will undergo a Neuropsychological test. This is a test to assess her skills and abilities linked to her brain function. They will measure areas such as language, memory, problem solving, decisions making, visual spacial skills, IQ, academic skills and social emotional functioning. Having this testing done will give us an idea of any areas she is struggling with and any areas she may need more assistance or adaptions in school. The test is a day long process where she meets with a Neuropsychologist to talk with her and participate in assessments.
Field Trips
Cydney has been looking forward to going on Field Trips with her class.
February 7 Cydney was able to attend her first Field Trip with the Class this year. The first one being to University of Arizona to get a tour of the Sports facilities in February.
February 15 She was able to attend the Gem and Mineral Show with her class, this has been her favorite Field Trip. We were able to walk around the show and to see Gems brought in from around the World. Cydney was able to break open her own Geode and bring home a collection of Gems and stones.
March 7 The third Field Trip was to Saguaro National Park. The class was able to learn about the how the Hohokam relied on the plants and animals of the desert to not only survive, but thrive. Students moved through stations that engaged in discussion and hands-on activities in trade, communication, shelter, food and how people today research these ancient people.
Zoo Lantern Night February 17
The Zoo was having an Asian Lantern Festival for several weeks. The kids enjoyed seeing the bright hand made Lanterns, music, acrobats and animals. Most of the animals were sleeping since it was after dark.
Habit Burger Grill Fundraiser February 21
I received a phone call from the founder of Children's Cancer Network, Patti Luttrell. Asking if our family would be interested in being a host family for a Fundraising event held on February 21 benefiting the Run to Fight Event being held in March. We were asked to write up a short description of Cydney's story and journey through diagnosis and treatment as well as have pictures or some information to have present at the restaurant on the day of fundraising. We also were present at the restaurant to share a meal with those who stopped by to support the fundraising efforts.
SNOW February 22
We woke up to a rainy day that quickly turned to snow. The kids were excited to see snow and went out to play for a few minutes. We did not have enough snow gear for them to comfortably play in the snow for long. We enjoyed and day inside watching it snow. School was already scheduled to be off that day for the Rodeo.
Port Removal March 15
Cydney had been waiting for this day for a while. After two sets of clear scans following end of treatment she was able to get her port removed. Scheduled for a procedure first thing in the morning we arrived at the hospital at 6am for a 7 am scheduled procedure. The doctor asked us if we would like to keep the port. I said we would, to give Cydney the opportunity to see what was in her body and what was used to supply all the chemo drugs as well as her weekly pokes for blood labs. She can decide what to do with it at a later date.
Camping March 28- March 30
We took a chance to get away for a weekend at a Cabin on Mt. Lemmon. Enjoyed cooler weather, fun with friends and massive cookies.
Cookies from Icing Smiles April 1
We got a surprise delivery of Cookies from a Cookie Decorator with Icing Smiles Inc, a wonderful organization that make cakes and cookies for children and their siblings facing serious and chronic illnesses. Our first cake from a local baker was for Cydney's End of Treatment Party.
Physical, Occupational and Speech Therapies
Cydney continues to attend therapy session twice a week at an Outpatient facility. In Physical Therapy she has been working on independent standing and walking, reaching and moving objects for one location to another while standing, bending and squatting to pick up objects from the floor.
Occupational Therapy sessions include her working on self care aspects, fine motor skills and following written directions to complete a task. Activities done include cooking exercises, arts and crafts, learning to tie shoes again, button clothing, and zippers.
Speech Therapy focuses on her being able to hold a conversation with others, speak in a loud voice so others can hear her as well as being able to find the correct words to use. As fatigue comes on her ability to talk clearly and find the words she wants is difficult. These therapies will help her with breathing and speaking at the same time, finding helpful ways to communicate through any mental or motor weakness caused by the Posterior Fossa Syndrome.
Therapeutic Horse Riding
Cyndey completed another session of Theraputic Horse Riding. She continues to improve and really enjoys the riding. It has built some core strength, and endurance. She is able to direct the horse where she wants him to go through direct reining and preform walk halt transitions. This session her horses name was Ringo. Over the weekend they had the Winter Showcase. Cydney is looking forward to one more session this year before breaking for the summer.
School
School has been going very well for Cydney. She really enjoys being with her classmates and friends. Favorite parts of her day are Art class, Library time and Lunch. She continues to have Home bound schooling three days a week as well as attending school three days a week from 9 to 2. Her goal for next year is to attend full time and receive all her academic instruction at school in the classrooms. She has been using the walker for the majority of her time in school, she says walking with the walker makes her feel happy inside.
Looking ahead, we are excited for end of school year activities and Summer Vacation.
