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. 

Cycle 8 is done!

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!