Cydney has completed the 8th cycle of chemo. This one was her last "A" Cycle. She spent one night in the hospital for the first week of the round, July 24-25. She got infusions of Cisplatin, Vincristine and Lomustine (CCNU). Went back to the clinic on the 26th for a Neulasta shot to help boost her immune system and keep infections away. The following week July 31 we went into the clinic for a Vincristine infusion. This time only in the clinic for a few hours and were able to go home that afternoon. Today, August 7 she went in for her last infusion of this cycle. Again, only a few hours spent in the clinic for Vincristine and we were home by 2pm.
She has become very anxious about the port access and knows it is coming! This is not a fun part of the day. There is no activity, show, song or discussion that can provide a distraction. As soon as the port is accessed it is all smiles again and goofing around like nothing just happened. We hold hands and grit our teeth to get through. There are tears and pleading to not give her a shot, and a lot of reassuring the hard part is over quickly.
We saw one of our fellow medullo family/friends there today and talked for a bit about each others progress, setbacks, and similar reactions to the whole process. There is a bit of comfort talking to others going through the same things, someone who truly understands!
Now Cydney gets a three week break before she begins the next and final cycle! September 11th is the day circled on the calendar as her final treatment day. As long as her counts can stay up and she can stay on track she will finish on time.
Waiting for her turn to start Chemo
Waiting for counts to come back from Lab, so we can be admitted and go upstairs to begin Chemo.
Napping while she gets fluids before beginning Chemo for inpatient stay.
Visit from Merida!!
Getting glasses:
Pima Air and Space Museum:
Receiving Chemo in clinic, July 31 2018
First Day of School:
Meet the Teacher Day
Happy 9th Birthday Cydney!!
Sign made for Cydney by a friend in OK. Thank you Emily!
This summer has been filled with a lot of swimming. Both Cydney and Nathan have made a lot of progress in their swimming abilities over the season. Spending almost everyday in the pool has allowed them to work on the skills and become comfortable in the water. Lily is also a fan of the water and enjoys playing in the pool.
We are looking forward to getting the school year underway and adjust our routine again to fit in therapies, doctors appointments, Nathans school schedule, school days for Cydney and other after school activities for both Cydney and Nathan. Cydney will be attending school three days a week for two hours each day. As she finishes up treatment and is able to have the energy to go longer we will extend her days and time as appropriate. While in school she will receive all three disciplines of therapies, classroom time and eventually adaptive PE. She has an aide with her throughout the day to help when needed. Cydney loves being back at school and among her friends.
We thank everyone who continues to send positive thoughts, prayers, words of encouragement and support!
One year ago; a day I will never forget, one that had changed our lives forever. The day Cydney was diagnosed with Medulloblastoma.
I remember that day vividly. Sitting in the hospital room waiting on results of her MRI, seeing a case manager, ER doctor and our pediatrician walk into the room and ask us to walk across the hall to speak with them. Walking across the hall to a conference room to see them sitting at the table, pediatricians eyes were red and the mood somber. Having knots in my stomach and throat of what had been found on the MRI scans. The doctors words "There is no easy way to say this"..... "there is a fairly large tumor on her brain".
Thrown into a whirlwind of emotions, questions, thoughts and activity. Not knowing what was to come, only that we needed to get her into surgery as soon as possible!
The past year has gone by fast in some instances and other it has seemed like the days would not end.
Looking back on the last year and seeing just how far Cydney has come is amazing. She is a fighter and is not giving up. Relearning how to do everything has taken a lot of determination; it has meant overcoming pain, frustration and fears.
The year has been full of good days and bad days, hard days and easier days; days of sickness and days full of energy. There have been lots of laughs, tears, hugs and kisses and silent prayers. There have been countless doctors appointments, therapy sessions, hospital admissions, tests for hearing, kidney function tests, MRI scans, ultrasounds and lab work.
Cydney finished up Cycle 7 this week. Two more to go! End of treatment comes with its own set of emotions. The feeling of wanting life to go back to normal, but it is not as though things are all over as soon as treatment ends. There will still be years of therapy, scans and other tests, doctors appointments and a constant uneasiness whenever concerning symptoms arise.
Cydney will continue on in school this fall, going into 4th grade. We are looking to increase her to three days a week at first and increase time as her stamina allows. She has been doing summer homebound schooling in efforts to keep her on track and to keep the improvements coming.
I can't forget to mention how incredible Nathan and Lily have been through all this as well. From being sent to stay with our friends, whom they did not know, for a month as we got accustomed to Cydney's needs in the hospital and then living with constant change of who was home with them and who was in the hospital with Cydney. They have gone with the flow, made their own sacrifices in regards to time with us; sometimes needing to see the attention focused on Cydney and her needs more. They remain to build a strong bond with Cydney and I can see that sibling love in them. They are concerned when she is sick and not feeling well and excited to play when she has the energy to join in the fun.
We can't say Thank you enough to all the family, friends and community who have lent a hand, sent meals, prepared our home for Cydney's home coming and got the proper adaptions to the house made, sent cards, sent gifts to the kids, babysat, given advice or just being open to hear venting.
As we proceed through this next year, I can only hope to what her accomplishments will be and how much further she will come. I was talking to Cydney today and she told me " you know nothing is impossible, it may be hard sometimes but I can do it if I want!" Her outlook on everything is remarkable and while she is very self aware of what is going on and how she has changed, she is not down on herself. She often times jokes about when she gets sick. As it can happen at any moment, with little to no warning it seems. She is quick to joke about it happening and move on to what she was doing. I hope she can keep this attitude about life.
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
