Tuesday, May 15, 2018

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.


(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

Monday, April 16, 2018


We find ourselves in Isolation!

Saturday night at home just before bed, Cydney felt warm. We took her temp and it was reading 103.0. We took it a few times in different spots and with different thermometers. Readings ranged from 100.4 to 104.5. Jared then called the after hours number to let them know and we were told to come on in they were preparing a bed for her.

By 9:30 pm Cydney and I were in the car headed to the hospital. After a 30 minute drive we were at the hopsital being greeted at the oncology unit doors and lead to our room.  They began taking vitals, asking us for details of what was going on and preparing to access Cydney's port. After applying some numbing cream and giving it time to take effect the nurses came back in to access the port and get labs drawn.  This is when Cydney got very upset, pleading for the nurse to not give her a shot.  As soon as the needle was on and dressing over the site, Cydney threw up! Thankfully not on the port side of her chest. Otherwise we would of had to redo the whole thing.  We all quickly got her cleaned up and settled back into bed. Once the labs were drawn and masks were off, Cydney was happy, joking and laughing again. 

By the time we  got settled in it was close to midnight and we were both tired.  Cydney decided to turn on her Junie B. Jones audio book and curl up to sleep.  I prepped her overnight water bag and set the pump to run for the night. Got my bed made and tried to sleep some.  Cydney slept well throughout the  night waking up around 6. 

 Around 2am the nurse came in to start the antibiotics her ANC level was 10, very low!  Got those started and I went  to sleep.

Cydney woke up in a good mood and said she was hungry! As soon as we got her morning seizure meds and nausea meds given I began her food. Towards the end of her feed, 30mL to go of the 200mL, she threw up everything.  I stopped the feed to give her a break and would start her another feed in an hour or so after getting a different anti-nausea med. Which she again threw up at the end with 50 mL to go. She continued to feel nauseous the rest of the day and evening, but not having anymore episodes of vomiting.

After talking to the doctors about her levels dropping  and fever it was determined she would be put under isolation. Anyone entering the room is to wear a gown and mask. No visitors, especially children. Therefore we are keeping Nathan and Lily out. Besides Lily has a cold or allergies going on and we can't risk Cydney catching anything. 
The day was spent drawing, coloring, reading, singing, watching movies , napping, and talking to doctors and nurses as they came in and out of the room throughout the day.  Cyndey likes to greet them with a smile as they enter the room. She is very sweet to the nurses talking to them about Didgee, her nails,what she likes to do and she makes sure to remind them that she loves her family!

Throughout the day her ANC levels reached 60, hemoglobin was also low. The doctors decided to give her some blood products.  Another set of labs were drawn for type and cross.  We would not be leaving. The doctor would like to see her levels trending upward before considering sending her home.  One doctor said 200 was the level she is comfortable sending kids home, while another said it would take several factors into consideration.  Levels to trend upward, no fevers, keeping food down to start with.  

Cydney is happy and in good spirits for the most part.  She gets sad when it sets in she is not going home. She misses Daddy, Nathan, Lily and Sonora. She misses being home.  I can usually distract her with a new activity or just talking with her for a while.  She takes naps off and on throughout the day, covering herself completely under the blankets. Hiding from everyone, she says.  

This morning, Jared and I switched for the day. I went home to shower, wait for the washing machine repair man and repack my bag while Jared sat with Cydney for a few hours. Cyndey was visited by some singers, the teacher and child life specialist while I was away. Once Nathan got off the bus, I drove back to the hospital and switched with Jared again. Cydney was very happy to see me back! Giving me a huge hug!!

As we settle in for the night I will look on Grub hub to order dinner to be delivered, Cydney is setting up a game of  Sorry and looking for a movie to watch. 

Tomorrow she is scheduled for her last round of Chemo for this A cycle. The plan is to go ahead and give it to her soemtime tomorrow while she is inpatient. She will then have a three week break.  

Praying for her counts to continue to rise, and for us to be headed home as soon as possible.  

Tuesday, April 3, 2018

Cycle 5 begins

Today we begin Cycle 5 of chemo! Arriving at the Clinic at 930 this morning for port access and labs. Her vitals are taken and she is weighed and measured. Today she was 15. 7 kg (34.6 lbs) and 111 cm (43.7 inches). Once labs were back and counts are good, Cydney is cleared to get her Chemo treatments. Cydney does not like her port accessed and knows what is coming when I put the numbing cream on her at home just before we leave. She pleads to not have to get a shot or a poke!

Cydney passes time at the clinic waiting either sleeping or watching her tablet. Today she chose tablet. After a couple hours of waiting we were cleared to head upstairs to her room and get situated for the overnight administering of Chemo.

Once in the room we got her settled into bed and set up her activity box! She has play-doh, crayons and markers, a coloring book, flash cards, and playing cards. We also bring along a few books to read. As I was getting her set up with play-dough and a movie on the tablet she stated "This is the best day ever! Both a movie and play-doh!"

By the time we got into the room, they begin fluids and anti nausea meds, review her needed medications and get an update of the past few weeks they began Chemo around 3pm. Today she is getting Vincristine, Cisplatin, and CCNU.

We pass the time; playing, talking, watching movies and hopefully her getting a nap. Although that is difficult to do when someone in walking into the room every 30 minutes. Due to the fluids she is also having to use the restroom every 20 minutes it seems.

We are hopeful to get out of the hospital tomorrow, as long as her nausea is not bad and she is handling the drugs well we will be discharged. So far each time we have not had any issues and been discharged the next day. We then return to the Clinic on Thursday to receive a Neulasta injection, to help fight off infection.

Halfway through Chemo! She is amazing and handles all of this as well as anyone could imagine.

No school this week, due to the treatments. She is looking forward to returning next week.

Thank you all for the continued support and prayers.

Thursday, March 29, 2018

Progress continues

Cydney continues to get stronger and stronger. Continually working on her physical strength and gaining endurance. She is also doing well with school and her retaining information.

The first two weeks she was back in school I attended with her, taking her from class to class; with the Special Education teacher coming with us to get to know Cydney. We then had a meeting to talk about her needs, what comforts her when she  gets upset, and how much to push her in preparation for me to step out of the room and let Cydney attend on her own. Last week she went on her own, with the Special Ed teacher and I waited in the car. This was hard for Cydney, she likes me to be close. I was nervous for her, hoping she did not get too upset and could enjoy her time in school.  Both days went well and she did enjoy herself. She gets upset as she is taken back to class, but returns happy and excited to tell me what she had done that day.  It reminds me of when she was 2 and going to day care. Every day I would return to pick her up and she would be so excited, running across the room with her arms held up saying "Mommy, you came back, you came back, I missed you!" She always had a big smile on her face and welcomed me with a huge hug and kiss. I would wrap her up in a hug and then we would walk out while she talked about all she had done. 

 "Crazy Hair Day" at school

Cydney has started eating ice cream by mouth. This is a step forward as she has previously not liked the taste of anything. We are still trying other foods and textures, to which she declines after trying.  She expresses wanting to not be tube fed anymore and is tired of having "pea soup" all the time.  Her formula Nourish is referred to as Pea Soup. We still blend food for her as well.  Until she can obtain the necessary calories by mouth, she will remain tube fed. Our goal, hope, is for her to eat by mouth and only need the tube as a supplement for when her appetite is low due to the chemo treatments.

Therapy continues to go well. Sessions have dropped down to twice a week at the Therapy center along with her two days at school she gets therapy.  We work at home the days she does not go in for Therapy.  Taking trips to the park, working on using her walker and wheelchair to get herself around, and playing with Nathan and Lily are also good  ways for her to build up strength.  She is able to stand for longer periods of time, is able to dress herself and is beginning to get the strength to crawl. 

We still struggle with emotions. Keeping her from swinging to the extremes is difficult some days.  It is worse when she is tired and has not gotten enough rest during the day.

Our newest family member Sonora:

The next round of chemo starts next week. This will  be round 5 of 9.  Another "A" cycle.  Three treatments over the next three weeks before another three week break.  We also go back to Phoenix for another MRI on the 26th of April.   The MRI will be once again to look at the spot seen in February, checking for any changes.

Thank you for the thoughts, prayers and continual messages of encouragement sent our way.