Tuesday, February 20, 2018

Cycle 4 of Chemotherapy

This week begins her third "A" Cycle of Chemotherapy. She is on the fourth Cycle of nine total cycles.  She will be getting Cisplatin, Vincristine, and Lomustine.  We will be in the hospital Tuesday overnight and as long as everything has gone well, discharged on Wednesday. We then return to the Clinic the next two Tuesdays, for an infusion of Vincristine. Following those treatments there will be another three week break before going back and doing another A cycle.

On Monday 2/19, Cyndey had a kidney function test. The drug Cisplatin can cause Kidney damage, therefore we are monitoring her function throughout treatment. Monday morning we arrived to the Clinic to have her port accessed and labs drawn in preparation for Chemo on Tuesday. The kidney test required a radioactive solution to be injected through the port. She then laid on a table while a camera scanned the kidneys providing data on how they were processing the solution.

Therapies continue to go very well. She was happy and ready to get back to therapy after having taken two weeks off.  Cydney worked on walking up and down stairs this past week. She was very cautious at first and getting the coordination to do them was a little tricky at first. She did great though and by the end of the session was getting faster and more comfortable going up and down. She also worked on standing alone without support. This made her very nervous! She was scared of falling over and not being able to catch herself. The therapist kept assuring her she is there to catch her, eventually Cydney got the confidence to stand on her own for several seconds. Her fine motor skills and strength are also coming along well.

Cydney will be starting back to school on March 7th. Last week we met with the school therapists, teachers, and special education staff to determine her needs and to set some goals. An IEP was written up noting what accommodations will be needed for her return as well as the goals set for her therapy sessions. For now she will be attending two days a week for two hours each day. While there she will be able to be involved in the classroom activities and work as well as receiving therapy either in the classroom setting or in a one on one session. She will be provided with resources to help her communicate with classmates and teachers for when she is tired and maybe can't find the words for what she needs. There is a program they use to provide her with the classroom books on audio, Book Share, making it easier for her to keep up with the reading material they are covering. Using a tablet as a communication device while her word recall comes back. Sometimes she can't recall the word she is needing, although she knows what something is, for example show her an apple and she will say she does not know what it is. Ask her if an apple is a apple or tomato she can tell you it is an apple.

For the first few weeks I will attend with her, working to increase the time she is apart from me. This I think will be the biggest challenge. She is attached! She does not like me to be away for long.  I am hoping that once she gets back into the classroom and around friends she will get more comfortable being away from me again. She still tires easily and quickly, therefore two hours seems like a good start.

Cydney will continue to receive the homebound instruction each day as to keep up with the academic part of school. Her progress there has been coming along well also. She is beginning to recall the letters of the alphabet and their sounds. Her recall of numbers and the quantity they represent has become more consistent as well.  Hand writing is becoming clearer and more consistent.

We are still waiting to hear results of the last MRI. The scans were sent to PCH and will be reviewed at the tumor board this Wednesday. We hope to hear something soon from either the neurosurgeon up there or from our oncologist here sometime tomorrow afternoon or evening.

Thank you all for the continued thoughts and prayers. Thank you for the messages and cards sent encouraging Cydney to keep fighting.

Tuesday, February 13, 2018


Every three months for the next couple of year Cydney will receive MRI scans to monitor any growth or changes in the brain. Today was her first one since Chemotherapy treatments have begun. There is a lot of anxiety about what you will find out along with hopes and prayers the scan is clean and NED (no evidence of disease). 

The day began like all others, with Therapy in the morning and short break home for a nap and then off to the hospital to get MRI. We arrived there at 2pm to complete registration and make our way to the Radiology unit for the 3pm appointment. Once checked in downstairs we were taken back to the exam room to wait on the anesthesiologist. To my surprise it was the same Dr. who attended Cydney's initial surgery at Phoenix Children's. After a minute of recounting Cydney's story she recalled the events that took place that day. She commented on how happy she was to see how far Cydney had come since July. 

Cydney was taken back to the MRI room at 4:15 and the waiting began. Three hours later the receptionist called me to come back to the recovery area. Cydney was agitated and scared. I could hear her crying for me as soon as I walked through the doors. For the next hour we waited for Cydney to wake up more and to record her vitals, as well as for neurosurgery to come reset her Shunt. By 8:15 we were headed home and would wait to talk with her oncologist Tuesday afternoon. 

Tuesday Cydney had therapy in the morning before heading to Banner to meet with her oncologist. Cydney was tired and chose to lay down for a nap during the meeting. The oncologist and the nurse came in the room with results in hand. She sat at the computer to bring up the images. While doing so she began to talk about there being something show up they were unsure of. It can not be clearly defined as a tumor or as something else, only that it is something that was not present in the October scan. She proceeded to discuss her plan to send the images to the specialists in Phoenix for their opinions and to send it to the tumor board that meets weekly. 

Scan from Monday showing a new spot. 

View from top of head showing spot

While results were not all clear today and could not confirm NED there is no confirmation it is more tumor at this time. It could be artifact, as it is next to the shunt. It could be radiation scarring showing up. The steps forward will be determined by what the specialists in Phoenix see. We could do another scan in a few weeks, the method of treatment could change, or it could be nothing and we continue as planned. We hope for it to be nothing! It is rare for reoccurrence to happen while in treatment, but possible.

The last two weeks have been rough on Cydney. The B Cycle hit her hard. Along with the G tube coming dislodged and replaced, resulted in an infection. Three hospital trips that week for fever and pain made for a long week. After a round of antibiotics and  rest the infection is gone and she is feeling much better. We took two weeks off of therapy to get better and get much needed rest. Her counts were low that second week of the B cycle causing her to be neutropenic, making the fevers and infection even more concerning.  

Last Saturday afternoon we attended a Beads of Courage fundraising event. Cyndey has been growing her collection of these beads as she goes through treatment. Each bead signifying a step in the journey, telling her story in a visual manner. It was a fun evening and nice to meet the founder and owner of Beads of Courage. Cydney was gifted a  beautiful bead holder as well as a few special beads.

This coming week we meet again with school therapists and teacher to lay out a plan to get Cydney back in school.

The next days and weeks we will be wondering what is seen in the scans by the doctors in Phoenix. We wait to hear their opinions and whether or not a change in treatment will be discussed.

Wednesday, January 31, 2018

Keeping up the fight

Cydney has completed three of her nine chemo cycles. She remains to handle it all with incredible strength and resilience. 

She does have anxiety about being accessed and having to be poked. While we apply a cream that numbs the area and helps to lessen the pain of the poke she knows what is coming and gets nervous. Now as soon as I put on the cream she says she does not want and "owie".  Once she is accessed she is laughing and smiling again. 

Her first two cycles were A Cycles. We arrive at the clinic in the morning to get lab work done and check her counts.  Once counts are back and she is cleared for Chemo she is admitted overnight for the administration of two Chemo drugs, Cisplatin and Vincristine. Over the course of 6 hours they are given and she is under observation as well as receiving fluids and anti nausea meds. The next morning as long as she is handling it well she is able to be discharged. The following day we return to the Clinic for a Neulasta shot to help fight off infection. Cycle A runs for three weeks. With the first day being the inpatient treatments, then the following two weeks only going into the clinic for Vincristine infusions. These days we are there for a few hours. She has a three week break before going back in for he next cycle.

Next is a B Cycle which runs for two weeks. Again we start in the Clinic for blood work before being admitted. This time she is inpatient for two nights to receive Vincristine and Cyclophosphamide. She also receives a bladder protecting drug named Mesna along with the anti nausea meds and a lot of fluids. On the third day as long as she is doing well she can be discharged with a return to the Clinic for Neulasta the fourth day. The second week we go in for a Vincristine infusion and again are only there for a few hours. 

Waiting in clinic for lab results
Lobby of Diamond Children's

In Clinic for Vincristine infusion

Now that we have been through a few cycles and know what to expect it is not as scary. Still makes me anxious to see how she will respond to each treatment and hope no issues arise. 
Now we have completed the first two A's and one B cycles. There is a three week break before starting another A cycle on Feburary 20. 

The past few weeks have remained busy as usual. We had a meeting with the school teachers and therapists to begin making a plan for Cyndey to return to school. We are hoping to slowly get her back into school a few hours a week soon. She was happy to see her friends again that day and they were all very excited to see her. In the following weeks she will have more evaluations with the therapists from the school to start some in home therapy sessions. We will then be able to have therapy session at home a couple days a week, making it a little easier and not have to transport her to the therapy center everyday. We have also begun the application process to get her some Hippotherapy Sessions (Horse Riding Therapy). I found a facility close to our home the offers the program. There is a wait list she will be placed on once the application is completed.  

Here are a few highlights of the last few weeks. 

Nathan has started Karate, he seems to love it and really enjoy having something of his own to do. He was shy at first, but quickly warmed up and was watching to make sure I was there to see what he was doing. 

On Monday, Cydney's Mic-Key button became dislodged. We had arrived at the Therapy Center and were getting out of the car. The extension tube got snagged on the car seat belt and pulled the button out of her stomach. I did not have a syringe on hand to deflate the balloon or her replacement. We were on the other side of the hospital from the ER, I quickly loaded her back into the car and drove over to the ER. The situation can be urgent as her stoma would begin closing an make reinserting the button hard and a surgery if not done in time.  The waiting room was full of sick kids and families, as I checked in and told them what happened we were taken back to wait in a separate triage area with no one else around. We were also quickly placed in a room where a catheter was placed while we waited for a replacement button. After the nurse informed me the hospital did not have a button the correct size for Cydney I called Jared to bring in our replacement from home. A couple hours in the ER and she got the new one placed.

Lily Turned 2! On Sunday January 28. We celebrated with a Moana Cake, family and a few gifts. I loved her excited expression when she saw the cake. It was a moment I will remember.

Cydney and I went to watch a University of Arizona Womens Gymnastics Meet. We both had fun watching the gymnasts compete and even seeing a few former Olympians compete in person. Cydney was in awe of the skills they were doing and kept commenting on how much they must practice to be so good at gymnastics.

100 days of Kindergarten. Nathan dressed up like an old man to celebrate the 100th day as well as made a poster with 100 Legos.

Cydney's New Wheels! She received her custom built wheelchair earlier this month. As she learns to wheel herself around she will gain more independence and be able move around the house on her own.

Keep going strong Cydney! We love you and your courage to keep on fighting.  

Thursday, January 11, 2018

2018 *Let's Do This!*

2018 has begun! We are ready to face this year with courage, love, and joy.

There are challenges ahead and it will be a year of treatments, doctor visits, intense therapy and a lot of relearning for Cydney. Our goal is to be as encouraging as we can through her struggles and celebrate all the accomplishments she will make.  She remains to fight hard and show determination to get back to doing the things she could before her surgery.

2017 ended with family visiting, sickness and a relaxing night in for New Years Eve. Just before Christmas I took Nathan into the doctor for some issues with snoring at night. Much to our surprise he had strep throat. He never complained of a sore throat or had a fever and never acted like he did not feel well. We got him on antibiotics and did our best to keep him from getting too close to Cydney. Thankfully it did not get passed along to anyone else.

Waiting for Doctor to bring prescription for Antibiotics after finding out he has Strep Throat
Cydney loves to sing and put on a show. She has recently gotten in the signing mood again and showing a glimpse of herself prior to surgery. She puts all her emotion into the songs and is quite expressive with her hands. One day at therapy she put on a show in the hallway to "Let it Go". There were a few tears from those watching and lots of cheers when she was done.

We Celebrated Christmas with my family from Oklahoma (Grammy, Pop Pop, Aunt Jo and Aunt Cait). We kept the day they were arriving a surprise for Cydney. For one she loves surprises and has the best reactions and if she knows they are coming she gets impatient waiting for them. I left to pick them all up at the airport and by the time I got home she was upset that I was gone and had been asking for me. I give her hugs trying to calm her down telling her I was back home. Then one by one they all walk into the room for her to see. She had the best reaction!

Opening gifts. So many wonderful people from the hospital and therapy center sent gifts for the kids. We are grateful they took the time to think of the kids this holiday season.

A few days after Christmas, Cydney spiked a fever. We are instructed to call the clinic immediately with any fever and to come in for labs to make sure her numbers are good. If numbers are low and she has a fever she will be admitted to the hospital. This time we were concerned for Strep, since Nathan was just getting over it himself. Cydney was given both the Strep and Flu swabs, blood was taken and some antibiotics given. After a few hours in the Clinic we were cleared to leave as her counts were good and there was no longer a fever. We would wait for 3 days on the blood culture to be read and would receive a phone call if any further medication was needed. Thankfully all came back clear.

The New Year began with a scheduled ultrasound. Cydney has been complaining on and off of side and stomach pain. We wanted to get a look just to be sure there was not something serious going on. The area she points to as painful is close to the shunt catheter. There is a possibly of pseudocysts forming around the catheter at any point after a shunt placement. Something we will forever be concerned with when abdominal pain presents. Everything was clear and we were sent on our way.

Therapy continues to go well. Cydney can be stubborn some days and not want to cooperate fully with the therapists plans. Some days takes more coaxing and encouragement to get her ready to work. She always ends up doing the work needed, she is just doing it on her terms. I can't blame her, she is trying to have control of something and that is the one thing she can take control of. You can't force her to move. I can only imagine how frustrating it can be to not be able to do the most simple things for yourself. I can see she gets bored with the same activities and disappointed she can't do more. We all work together to keep her excited about therapy and to keep the activities fun. Some days there is compromise for her to do their plan, then she can choose an activity or game she wants to do.

Dream BIG !! Painting is a favorite activity

Working on writing and drawing. Her fine motor control continues to improve. Her writing is back to where she was at the age of 4 or 5. Some letters are backwards and spelling is not quite there on some words, but the fact she is holding the pen correctly and writing letters is something to cheer about. 

Bath chair arrived! Much easier to give her baths now as well as giving her the independence back to do it on her own without me having to hold her up. She loves the chair and to relax in the tub, with bubbles of course! 

Working on the treadmill to get her to extend her stride and to help her make a more natural step. She currently leads with her left foot and will bring the right one next to the left as she steps instead of each foot being placed in front of the other. We play music, sing, blow bubbles or just talk. Anything to distract her from the work. 

Working on her fine motor grasping. She really enjoyed this activity and it was a favorite of this session. We will incorporate this at home as well. 

Working on reaching and stabilizing herself, as well as tracking. The worm moves back and forth as she attempts to get the rings around him. She has named the worm Herman. This is  also a favorite activity.
Gaining confidence with her walker.

More work on reaching, this time some cross body reaching. Also working to see where her vision and tracking are best. Seeing things midline are a little more difficult for her and her accuracy of placing items or finding items is less than when seeing something a little higher.

Working on keeping her balance while reaching for the objects stuck to the mirror then placing them back in the bin.

Homebound schooling has been going well for Cydney.  We try to get her 45 minutes each day. Next week we will meet with the teachers,specialists and therapists to determine the best services to provide Cyndey through the school.  

Nathan has returned to school. I think he was ready to go back and to get into his routine again. It is an adjustment as he is tired when he gets home. He has decided he would like to try out Karate, so I will be looking for a local class for him.

Our sweet Lily will be 2 soon! She is full of energy and is cute as can be. She knows it too! She has the best facial expressions, full of sass and sweetness.

Next Chemo cycle, cycle 3, starts January 23. This time she will be inpatient for two days and released on the third day if all goes well.  

Thank you all for the continued support and prayers! We are truly greatful!