Overdue update

Going Home:

After a five day stay in the hospital we were able to go home April 19! Counts came back that morning at 890, a big jump from the 140 the day before. As soon as the nurse told us her numbers were up  I told them we were ready to go home then and the discharge paperwork was started. This happened around 730 that morning and by 1pm we were signing the discharge papers and heading home. Cydney was very excited to go home! Excited to be with Nathan and Lily, see Sonora and to relax in her bed. 

Once home Cydney was able to open mail that had been waiting for her. One of the envelopes contained a CD of the song written for her by the Songs of Love organization. A national organization that creates personalized songs for children facing medical, emotional and physical challenges. She loves her song and has listened to it over and over. 

April 20th I attended the service for a 6 year old boy in Phoenix who had battled Medulloblastoma for 18 months. Super Sammy and his family were one of the first we connected with in Phoenix, following Cydney's diagnosis. While his passing hit very close to home I was happy to be able to attend his Celebration of Life.

Kindergarten Zoo Field Trip

Phoenix Trip for an MRI:

April 25th Cydney and I headed up to Phoenix for another MRI. Every three months for the next year or two she will get scans to look for any changes or new tumor growth. Back in February her scan had shown a spot which did not show up in  previous scans. After a follow up scan in March which the doctors could not determine if the spot was new tumor, radiation scaring, or something else we were scheduled for another scan in April. Due to her check in time being 6:30 am we decided to stay overnight in Phoenix at Ronald McDonald House. It was much easier to drive a couple miles down the road for an early appointment, rather than leaving Tucson at 3am. We checked in at Phoenix Children's Hospital and met with the anesthesiologist, who was not comfortable sedating Cydney with her still having a cough and a raspy airway. Therefore we did not get the scans done and would need to reschedule.  

Super Siblings Event:

When Cydney started her Chemo treatments we were introduced to an agency which supports children impacted by serious conditions and death. Tu Nidito comes into the home or hospital to do activities with the children, giving them an outlet and support as we navigate this challenging time in our lives. There are also support groups for the families to attend as they are able. On April 27th they held an event for the siblings to come and have a night of Star Wars themed fun at a local Parkour gym. Nathan really enjoyed going and being able to attend an event geared towards him. 

Cydney continues to make progress in eating by mouth. She is now willing and able to eat bananas, watermelon, apple, and ice cream. She has also gotten back to her drawing and art projects. She has always enjoyed doing these things and the fine motor control is back to a point she can get back to these two activities she enjoys. 

Nathan had been asking for months to go to the Trampoline Park. I was reluctant to take him with Cydney in tow, feeling that she would be disappointed she could not jump or participate as much as Nathan. She overheard him asking to go and stated she would be ok with watching him jump and have fun. We loaded up and went to the trampoline park, everyone had a fun day. Cydney was able to get into the foam pits and play, bounce on the trampoline with me as well as thrown and kick the ball around.

A Big Surprise for Cydney:

Back in January my Aunt Janet had asked if going to a Taylor Swift concert in May would be something Cydney would be able to do. I knew Cydney would love to go and as long as her Chemo schedule worked out we could go. Also knowing there is a lot unknown with her health it was not something I wanted to promise her from the start to only have her not feeling well and unable to go. Tickets were purchased and for months we sat on a secret surprise for her! Several days prior to the concert Aunt Janet, Aunt Cait and Cousin Nicole came to Tucson. Cydney figured they were coming out for a visit only and in true Cydney fashion was over the moon to have them out for a few days. The night before the concert we surprised her with the news we were going to the concert. About a week before we were listening to Taylor in the car and Cydney asked if we could please go to a concert one day. It was very hard not to break and ruin the surprise. 

Video of Surprise Reveal: FF to 3:30 for a reaction that does not disappoint.

BEST DAY EVER!!

T.R.O.T

(Therapeutic Riding of Tucson)

Several months ago I had read about Therapeutic Horseback riding and it benefits to improve coordination, core strength, balance and posture. I began researching to see if there was anyplace in Tucson to offer such programs. To my surprise there is a center just a few miles from our house. I sent in an application to TROT and waited for a call back. Last week we received a phone call for Cydney to come in for an assessment and while Spring Session is wrapping up they would like to get her in for a few sessions before it ends and pick up again with the Fall session.

Chemo Cycle 6:

This week is the beginning of Cydney's 6th Chemo cycle. We will be admitted to the hospital for two night to receive her chemo drugs (Vincristine, Cyclphosphamide)  as well as a bladder protecting drug Mesna. We came in this morning for port access and blood draw before being admitted. Once on the oncology floor Cydney is started on her maintenance fluids,  and anti-nausea meds before the chemo drugs are administered overnight and the next day. As long as she is handling everything well we will be released on Thursday and back to the clinic on Friday for a Neulasta injection. Once through this Cycle Cydney will be 2/3rds done with the chemotherapy. In some ways it feels as if time stands still and moves so quickly at the same time.

May is Brain Tumor Awareness Month:

*Medulloblastomas represent about 20% of childhood brain tumors, arise from underdeveloped stem cells in the cerebellum. Medulloblastomas are highly malignant, but with appropriate treatment many children can be cured.

*Medulloblastomas are usually accompanied by headaches, and vomiting; particularly first thing in the morning. Sometime the child will show behavioral changes and deterioration in school performance.

*Diagnosis is suspected by CT or MRI scans and confirmed through pathology after surgical removal.

*Treatment includes: surgery, radiation (except in the very young) and chemotherapy.
Source: Memorial Sloan Kettering Cancer Center