We have been busy...

The month of December was busy, fun and went by incredibly fast. With more progress from Cydney, school events, holiday celebrations and a much needed trip home to Tulsa the end of the year ended on many positive notes.

There have been some big steps forward in Cydney's recovery. She is getting much stronger and having more energy each day. Her appetite has been increasing, with the episodes of nausea vomiting decreasing. She continues to be on anti nausea medications twice a day, down from 4 to 6 depending on the severity of her nausea that day. Her days at school have been extended an hour, and she is doing well with and enjoying the extra time. She really enjoys the social aspect of being able to be with her friends and eat lunch in the cafeteria. Next month she will be able to join the class on a couple field trips.

One day Cydney decided she wanted to use her walker to get herself in the car when it was time to leave for her therapy appointment.  I gave her the walker and stood back to let her try on her own. This was the first time she had attempted doing this, normally we would be holding her up while she walked or carried her to and from the car. I stood close enough to catch her if she were to loose control, but she did not need any assistance. She even navigated the step down on her own with ease. When we returned home she again said she could do it alone, so I decided to video her to show our friends, family and Cydney supporters just how far she is coming along. All through her recovery she had been the lead in what new steps or progress she makes. Once her mind is set she is not turning back. She has since used the walker predominately. When going to a store, walking around the house on her own, going to school and therapy. She says she is ready to be done with the wheelchair. It is still used for days when there will be a lot of walking.  

A few weeks ago, Cydney became upset that you could see her leg braces when she was wearing dresses or skirts, and does not like the limited shoe selection that fits over them. While out shopping we looked for a way cover the braces and still "be pretty" as Cydney explained. We found the leg warmers in the girls section and this solution immediately made her happy and accepting of wearing the braces. She has always liked wearing them, as they give her the ability to stand on her own and take steps unassisted. We still don't have a great solution for the shoes, but having the pretty leg warmers seems to please her for now. 

We found a new dentist here and took the kids to their first visit there. Lily was not a fan at all, Nathan was slightly nervous and Cydney did very well.

We were contacted by Children's Miracle Network at the beginning of December to come share her story during their Radio-thon at the Tucson Medical Center. While it was slightly nerve wracking to be interviewed on the radio, we go through it and were happy to share he story with others.

Nathan has continued to do well in school and karate. He tested up in belt color and is now a yellow belt. He attends 3 to 4 days a week, working on his skills.

Lily is a bundle of energy always on the go, into everything Disney Princesses, and learning so much.

Just before leaving for the Christmas Break the school had a Jingle bell Run and Sing a long program.

 We took a trip home to Oklahoma! Our much anticipated trip home to Tulsa was all it was expected to be and more. We stayed busy seeing family and friends. Celebrating the holidays and enjoying some much needed family time away from our daily routine of therapy appointments, doctor visits and school.  Seeing family we had not seen in a couple years, our first big trip since Cydney's diagnosis and getting back to Tulsa renewed my spirits.

                             

Warm Welcome Home at the Airport: we were surprised to see a group of people waiting for us to arrive at 1130 at night.

 Enjoying S'mores:

We were treated to a private screening for Mary Poppins Returns for the Funk Family. 

Almost 60 strong! Thank you Funk Family for joining us for the movie. Missed those who were not able to make it that day. It was great to see you all!

 A Visit to Gathering Place: Making a visit to the newest park in Tulsa was at the top of our list of things to do. This new park is over 66 acres for the first phase. There is a sensory garden, a variety of slides and swings, climbing structures, sand boxes, playhouses, bridges to walk across and towers to climb, and much more.  There is so much to do and see we could not see it all in one or even two days. 

 

We attended Christmas Eve Mass and Church of the Madalene. Cydney was excited to be in the Children's Program.

Christmas Day was spent with the family:

 Fun with new gifts:

There was a Thank You Party for Aunt Janet and Uncle Bill, showing them our appreciation for all they do for the family. Taylor Swift made an appearance, along with several other celebrities.

The much anticipated and talked about Girls Night Sleepover too place at Aunt Janet's. A night filled with fun games, good snacks, movies and lots of girl talk.

Took the kids bowling followed by a visit to Braums for lunch and Ice Cream:

Celebrating New Years: New Years was low key spent the night at home watching Taylor Swift Reputation World Tour on Netflix.

Back in October, Cydney received a autographed picture from OSU Football player Dillon Stoner. He then contacted me to arrange a meeting with Cydney following the Bowl Game before we returned to Tucson. Cydney said it was "very cool" to meet a football player. Thank you Dillon for taking the time to meet with Cydney!

Saying "see you later" is the hardest part of coming home. We know it has to end at some point so we can return to Tucson and continue with our daily life there. Back to busy days for therapy, school and doctor visits.

January was set to be busy as well..

We returned back home to Tuscon and prepared for the next MRI for Cydney. This would be her three months post treatment scan. As usual scans bring some anxiousness and the ever creeping thoughts of what if. We all drove up to Phoenix on Sunday afternoon to be close to the hospital for a 530 am check in. After the scan was completed Cydney and Jared returned to the hotel for naps before we returned to Phoenix Children's for a meeting with Dr. Wetmore, where we would receive scan results and to meet her for the first time. Dr. Wetmore is now our primary oncologist, as the one in Tucson left Banner. Dr. Wetmore has followed Cydney's case from the beginning, this was just our first face to face meeting with her. Scans were clear and we are now in the process of getting her Port Removal scheduled. As long as the port is in, she will have to go into the clinic to have it flushed to prevent infection. Getting it removed as soon as possible is our goal. The main question is will the surgeon in Tuscon be comfortable removing it, due to it being placed by the surgeon at Phoenix Children's.

The girls received a pair for sparkly ballet slippers from Tippi Toes . A company started by two sisters I attended High School with at Bishop Kelley in Tulsa. Thank you Megan Reilly for contacting me to set this up, the girls will love dancing around in them.

We are back to our daily routine. Cydney will be starting up Therapeutic riding again, PT/OT twice a week at TMC and hopefully beginning Speech Therapy as well. She remains to get all therapies in her three days at school as well. 

Cydney was asked to be in the new promotional video for Banner UMC/Diamond Children's. We went after school one afternoon to attend the video shoot. 

 The New Year is off to a great start! We look forward to what 2019 will bring.


Many thanks to all the supporters! Your prayers, thoughtful messages, and cards are much appreciated!

Happy Holidays!! and an update....

We are now three months past the end of treatment and life is going well. 

Cydney has been gaining energy, stamina and weight. At her clinic visit this week she weighed in at 36 lbs, up three pounds from the end of treatment day! She has a great appetite most days and is continuing to try more and more foods. She is still on tube feedings overnight to keep the calories coming. She is ready to have it taken out for good. Next step is to get her to be able to swallow a pill and take her meds orally.  

The set of scans following the last chemo day were clear and we go in for more next month when we return from our trip back to Oklahoma.  I have to say though the nurse practitioner that called needs some phone call training. He was stumbling over words, making pauses before he said things at important moments in the statement. My heart dropped and stomach was in knots before he got out "scans show no recurrence, they are clear." 

We met with a neurologist who will follow Cydney's progress and monitor her seizure medications. Right now we will stay on the meds and this spring reevaluate the need in hopes to taper off and end the meds. Cydney has not had any seizures since being in the hospital in Phoenix and shows no signs of having them. The doctor would like her to be seizure free for 18 months, before discussing any changes. 

We also saw and ophthalmologist, the eyes look great and there is no evidence of damage. We go back in February. There was concern of some possible optic nerve damage, based on what an ophthalmologist had seen while she was in Phoenix. We got a second opinion due to Cydney being no verbal or very responsive at the time of that initial exam in Aug 2017. 



Her new AFO's (leg braces) were completed. From the day she was able to get them she was eager to stand and walk. They are comfortable now and give her the support she needs to stand and take steps on her own. Her foot drop is pretty severe, causing her feet to point downward and not have the range of motion needed to be flat on the ground. The tendons in the heel are tight and need to be stretched. These braces do this for her, they are built with a wedge on them. As the tendons stretch and the range of motion increases she can get the wedge taken down and eventually out completely. Cydney is also able to wear a soft pair at night to keep the foot in the proper position. The alternative to not wearing the braces and getting the issues fixed this way would be surgery and serial casting. Not something we would like to have happen if we can help it, so the braces will be worn. Thankfully they are comfortable now and not a fight to get her to wear them. 

Cydney continues to attend therapy sessions two days a week. Working on her standing, walking, being able to bend down to pick items off the floor, put items back on tables or shelving, transferring in and out of the wheelchair, as well as to gain confidence in using her walker.

Her school days remain at 3 a week, with next week extending her time in school to include lunch time. She has been asking for this for several weeks now and we were waiting on a swallow study to be completed. Now that this is done and she is cleared to eat a variety of foods by mouth she is able to stay through their lunch time followed by a little more class time before I pick her up at 1230. 

Cydney has completed her first semester of Therapeutic Horse Riding at TROT. This weekend will be her final show where she can demonstrate the skills she has learned. We look forward to returning next semester.  

Next up on our calendar is a trip to Tulsa, Oklahoma for Christmas! We are all excited to get back and to see all the family and friends who have been sending love and support our way over the past 18 months. 

We would like to wish everyone Happy Holidays and a Wonderful New Year. Thank you for the continued messages of support, thoughts and prayers, love and encouragement sent Cydney's way. She loves to see the cards, messages and to just hear that so many people from around the World are cheering her on. 

She is done, she made it through.!!

Yay!! Cydney made it through treatment! She had her last day of Chemo on September 11, 2018. 

This is a day we had been counting down to. A day marked on the Calendar for the past 15 months. One that at times seemed as though it would never arrive. One I also could not have every said we would be celebrating. I still find it hard to believe that we were thrown into the world of Childhood Cancer just 15 months ago. 

The day was set to be a happy, joyful and amazing day. We had family in town to help celebrate. We had a party planned with friends and those local that have supported us through the journey. 

First thing that morning preparations for the party were finalized, we all went to Clinic together and began the waiting game. The day in Clinic began as it usually does. Getting her vitals, and settled in to the room. By this time Cydney is really nervous and has been anticipating the port access. The worst part! Saying she doesn't want a shot and she can't do this again. It is tough to see her put up the fight and not say it is OK, because it's not! She shouldn't have to do this, no child should. She follows the directions though and through her tears and pleads to no do this again, she is accessed! Blood is drawn for her labs and sent down while we wait again. The tears are dried and a joke made to bring laughter. I gave her a hug, telling her "good job, it's done" then gave her a bigger hug. She will then either ask for her tablet or snuggle in for a nap. While we wait for her labs to be done and counts to be reported we talk with the doctors, child life specialist, and social workers about Cydney's current condition. Ask questions we have thought of since the last visit and discuss what visits will look like in coming months. he also needed Platelets, which added another hour to our stay. 

There was miscommunication and misunderstanding about what was to happen on her last day. We were thinking this being her last Chemo treatment would be the day to celebrate. We were told there would be a gong to hit and they have a song to sing for her. As things were wrapping up from her treatment there was not any mention of bringing the gong or where she would go to ring it. After asking one of the nurses about it, we were told that normally the celebration is kept for after the end of treatment scans coming back clear. We elected to let her ring the gong this day, as to us the celebration is being done with Chemo. She will be getting scans for the rest of her life, there is no end to those. 

There are a mixture of emotions that come with the end of treatment. Happy to not have to go back to the Clinic for Chemo, excited to have no more nights in the hospital on the calendar, overjoyed she has made it to this point. There is also fear and uncertainty, the "safety net" of the Clinic is gone. No more getting blood counts, vitals, the peace of mind that someone is there monitoring her. Of course we know if we have any concerns at all to call them right away and they will see her. Leaving behind a piece of you life for the past 15 months is not always easy! Even if that piece is not necessarily a wanted part of life. 

We are moving on into a new phase of life. Life after treatment. What does that mean? What does that look like? 

For now it means she will no longer be going in for the chemo treatments in three week chunks. She will not be getting the chemotherapy drugs and will begin to regrow her hair. She will still be going in monthly for her port to be accessed and flushed, she will increase her time in therapy sessions as well as in school as her stamina rebuilds and she is able to handle more time. She will remain to get MRI scans for the rest of her life. She will get one at the end of the month and then again in December. After that one as long as all looks well and there is No Evidence of Disease (NED) she will be able to wait 6 months in between scans for a two year time span and then move to yearly scans.

Plans to remove the port will be discussed after the December scan. The g-tube will remain for the time being. She needs to be able to eat enough by mouth she is gaining weight. She is consistently in the range of 32 to 35 lbs. While she is small and always has been we need to see that number increase to be comfortable to get the feeding tube out. The tube also makes administering medication easy. As we follow up with neurology and her nausea subsides or goes away we can consider pulling back the nausea meds as well as reevaluating her seizure medication. She will be monitored for any late effects from the Chemo drugs.  

End of Treatment Party

The party for Cydney went well. Many of her friends and teacher came over to celebrate her being done with Chemo. Cydney looked forward to the party for weeks. She told me during the party, that "this is what a party looks like" seeing the support come together and to see her classmates and friends over to interact with her was heartwarming. 

The kids took interest in pictures of Cydney's journey. Many of them I'm sure have not seen what she has endured over the last 15 months. They have been told the story and have seen her for the last 6 months since she has returned to school, although they have not seen the setbacks she has had to overcome. 

We were able to receive a cake from the Icing Smiles organization. After applying for a cake you are set up with a baker in the area to design and make the cake for you event. It was a touching coincidence the baker was a mom of a friend in Cydney's class. We also ordered cookies from another school parent, Q Confections. 

Therapeutic Riding of Tucson

Therapeutic riding has started back up. Last session Cydney attended a trial day and even though she got sick after the ride, she enjoyed it and wanted to go back. This session is held on Tuesday evenings. The riding will help Cydney to build core strength, the ability to follow tasks and working with multiple parts of the body to accomplish a task. The fun and excitement of riding a horse make the work fun! Session will run into December.  

Coming up: 

MRI scans in Phoenix on September 27. There are nerves surrounding these scans, as there will be for any and all in the future. We hope for clear scans, that the treatment she has endured the past year has done its job and there are no signs of cancer left behind. 

An appointment to get fitted for new leg braces. Her foot drop, an effect from the chemo drug vincristine is getting worse. Her tendons are tight in the back of her foot and ankle, causing her to loose the range of motion and foot to be in a pointed position. Making being flat footed hard which in turn make walking harder. We are hoping the new braces will help stretch these tendons and give her the range of motion back. Other options are casting or surgery. 

An appointment with an ophthalmologist to check for any vision problems or eye concerns. There have been times she says she can't see certain things or I find her looking at a book and straining to see what it says. Whether this is a vision issue or processing issue we don't know.  The last time an ophthalmologist looked at her she was unresponsive and not able to tell them how things were looking to her. Hopefully we can get some clarity on any issues she may have if any and how to help her work around them. 

Trip home to OK for Christmas. We are all very excited to go HOME and to see all the family and friends there. 

Make a Wish Trip in January. The kids and our family will have a trip of a lifetime to Disney World, thanks to Make A Wish Arizona and Give Kids the World. 

Our families will be able to meet up with us in Florida and experience Disney with Cydney, Nathan and Lily; as we all take some much needed time away and to let the kids be kids, with no worries and tons of fun!

Thank you all who continue to follow our journey and send messages of support, prayers and encouragement. 

End of Treatment is near!!!

As we near the end of treatment we are counting down the days! Wow, only 16 days! What seems like a lifetime ago has also passed quickly before our eyes.  I will always remember the day of diagnosis and the hours that followed.

Counting down to fewer trips to the Clinic, fewer doctors visits, along with many different emotions. Sometimes feeling that all things will be going back to normal, but knowing we have a new normal now.

There are still endless therapies, continuing doctors visits, MRI scans, and a constant unknown and fear of "what if". The next MRI is scheduled for two weeks after end of treatment, she will then get another in December. After that she will get them every 6 months for a year and yearly after that.

Eventually she will go in to get the G-Tube and Port a Cath removed. Both of these will be in for at least another 6 months. The Port a Cath will stay for the next two sets of scans at least. After getting two sets of clear scans the doctors will be comfortable and willing to remove it. She will still go into clinic once a month for a Port flush to prevent infection. The G-tube will stay in place until she is able to eat enough by mouth she is gaining weight. This is something we struggle with, she fluctuates between 31 and 35 lbs. While she is eating all meals and snacks by mouth during the day and getting an overnight feed through the tube, with sickness and her not having a huge appetite it is a struggle to keep weight on.  The tube is also a very convenient and quick way to get meds administered. No struggles with bad tastes or having to swallow pills.

We have gotten on a good rotation of nausea meds and most days can get through without any puking. There are still days she will be sick in the mornings and some days can't keep anything down. Emotions have leveled out as well. She can still get upset very easily when tired or frustrated.

Cydney will be starting up Therapeutic Horse Riding at TROT. She will attend one evening a week for 8 weeks. We hope the sessions go better this time around. Last time she went she ended up feeling sick half way through and needed to stop. She says she is excited to try again and looks forward to starting back up soon. Sessions start September 18. Timed perfectly for after treatments end. Hoping her energy will be up and feelings of nausea will subside.

School is going well and she is enjoying being there her three days a week/two hours each day. As treatment ends and her energy levels rise she will be able to extend her time at school. Currently her favorites during the school day are Art, Recess and Library time. She enjoys being back with her friends and says they are all very helpful while she is in class, on the playground, or just getting around the campus. She does have Aides with her during her time as well as receiving Physical, Occupational and Speech therapies. As her time at school increases she will be able to attend an Adaptive PE class as well. I cannot express how thankful we are for our school community. The transition back to school since diagnosis and recovery has been seamless. Being able to get the services and resources she needs without a question or resistance has made being back in school a nice slice of normal. Having a very friendly and family like community to welcome her back with open arms has ensured her love for school remains. Thank you ACES family!

The rest of the year is giving her a lot to look forward to. We are planning her End of Treatment party, preparing for Halloween, Thanksgiving with family at our house in Tucson, Christmas at home in Tulsa and a trip to Florida in January for her Make a Wish Trip to Disney World!



As we come up on her end of treatment I would like to highlight the Charities, Organizations and Medical Facilities we have utilized or who have generously provided our family with assistance and services. As well as those who fund research for Childhood Cancer.

Phoenix Children's Hospital

Ronald McDonald House-Phoenix

American Red Cross



 






Banner Health

Tucson Medical Center

Make a Wish Arizona








Tu Nidito

                                                   Border Patrol Tucson Sector

                                              Jimmy Jet Foundation

Icing Smiles

       Alex's Lemonade Stand

St. Jude

Thank you all for the continued support, prayers, generosity and love. We feel it all and appreciate everything! We could not have gotten through this past year without having our friends and family by our side.