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!
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
American Red Cross
Banner Health
Tucson Medical Center
So glad you have so much to look forward to! Praying for her daily! ❤️
ReplyDeleteThis is my favorite post yet! Keep up the good work, Cydney!
ReplyDelete