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!