Progress continues

Cydney continues to get stronger and stronger. Continually working on her physical strength and gaining endurance. She is also doing well with school and her retaining information.

The first two weeks she was back in school I attended with her, taking her from class to class; with the Special Education teacher coming with us to get to know Cydney. We then had a meeting to talk about her needs, what comforts her when she  gets upset, and how much to push her in preparation for me to step out of the room and let Cydney attend on her own. Last week she went on her own, with the Special Ed teacher and I waited in the car. This was hard for Cydney, she likes me to be close. I was nervous for her, hoping she did not get too upset and could enjoy her time in school.  Both days went well and she did enjoy herself. She gets upset as she is taken back to class, but returns happy and excited to tell me what she had done that day.  It reminds me of when she was 2 and going to day care. Every day I would return to pick her up and she would be so excited, running across the room with her arms held up saying "Mommy, you came back, you came back, I missed you!" She always had a big smile on her face and welcomed me with a huge hug and kiss. I would wrap her up in a hug and then we would walk out while she talked about all she had done. 

 "Crazy Hair Day" at school

Cydney has started eating ice cream by mouth. This is a step forward as she has previously not liked the taste of anything. We are still trying other foods and textures, to which she declines after trying.  She expresses wanting to not be tube fed anymore and is tired of having "pea soup" all the time.  Her formula Nourish is referred to as Pea Soup. We still blend food for her as well.  Until she can obtain the necessary calories by mouth, she will remain tube fed. Our goal, hope, is for her to eat by mouth and only need the tube as a supplement for when her appetite is low due to the chemo treatments.

Therapy continues to go well. Sessions have dropped down to twice a week at the Therapy center along with her two days at school she gets therapy.  We work at home the days she does not go in for Therapy.  Taking trips to the park, working on using her walker and wheelchair to get herself around, and playing with Nathan and Lily are also good  ways for her to build up strength.  She is able to stand for longer periods of time, is able to dress herself and is beginning to get the strength to crawl. 

We still struggle with emotions. Keeping her from swinging to the extremes is difficult some days.  It is worse when she is tired and has not gotten enough rest during the day.

Our newest family member Sonora:

The next round of chemo starts next week. This will  be round 5 of 9.  Another "A" cycle.  Three treatments over the next three weeks before another three week break.  We also go back to Phoenix for another MRI on the 26th of April.   The MRI will be once again to look at the spot seen in February, checking for any changes.

Thank you for the thoughts, prayers and continual messages of encouragement sent our way. 


 
 

Results came back....

Wednesday afternoon we received the phone call about Cydney's scans she had in Phoenix. The results were reassuring for now.  There was no change from the previous MRI, and the PET-CT was negative. There are some enhancements shown but unsure what they are exactly.   We will be going back for scans in six weeks.  

It was a weight lifted off our shoulders. Our worst fears were not confirmed, we can breathe a little easier for now.  There will be anxiety as more scans come up I'm certain. Treatments will continue as planned.  

Chemo Day: Cycle 4 Round 2

Receiving her Vincristine during Chemo infusion 

On the road to Phoenix for scans

In recovery at Phoenix Children's after her scans, waiting for anithesia to wear off and for her shunt to be reprogrammed before heading home 

H.O.P.E Presentation & Monkey in My Chair

A week before Cydney started school we went in to meet the students and to sit in on the H.O.P.E. presentation to the entire Third Grade. The program addresses the issue of childhood cancer; through facts of the realities of cancer, and preparing the classmates with strategies for a successful transition in Cydneys return. 

After the H.O.P.E. presentation was complete the Child Life Specialist and Educational Specialist from Banner University talked with the class more specifically about Cyndey, the procedures she has gone through and what treatments look like for her.  They used dolls and stuffed animals to show them a Port and Mic-key button, explaining their functions. Discussed proper hand washing, wearing of masks when needed and sanitizing of the classroom. All important to help Cydney be able to come into class and lessen her possibility of catching a cold or other illness. We discussed her emotions and her tendency to get upset quickly and easily. We discussed ways to help her calmly explain what she is needing and the importance to give her space when she requests. 

They then presented the Monkey in my Chair. The monkey is a representration of Cydney on days she is not in school. The class can take the monkey with them throughout the day to different classes documenting the day to day activities.

Cydney named the monkey Cydney

Back to School
This week Cydney went back to school.  There was a lot of excitement for everyone.  The classmates are eager to help her anyway they can, and have been very encouraging of her as she adjust to the classroom setting.

She is attending two hours on Wednesdays and Thursdays each week.  Her days consist of some classroom time, therapies and recess. She does get very tired by the end of the two hours. It is a lot of activity to take in and can be overwhelming at times. The school has been very supportive and accommodating to her needs. Giving her a place to have quiet time when needed, time to transition from one activity to next and helping her express her needs as far as the amount of help she wants from her classmates. 

I am attending with her and slowly keeping my distance as people learn to communicate with her and provide her the assistance she needs.  The therapist either work with her in the room or in their own classroom one on one. 

Once we leave she returns home for a nap before the homebound teacher arrives. 

Ready to head into the school

Working on her Art project

Made a clay cupcake

Working in Speech Therapy

Going for a walk with friends

Looking through drawings and cards made for her by friends

Working on fractions

Getting help from a friend with a fraction puzzle

Taking a tour of the classroom

Books donated to the classroom by H.O.P.E

                  Occupational Therapy

She has completed the 4th cycle of Chemotherapy. Next one begins on April 3rd.

Waiting......

We received phone calls from several doctors today after the Tumor board met in Phoenix.

They could not definitively say it was NOT a tumor, they would not say it IS. They would like to get more scans in several weeks in Phoenix on the PET CT machine. 

The doctors have also suggested a Lumbar puncture, to detect any cancerous cells in the CSF.  In order to do this they would like to wait for this cycle of Chemotherapy to be over. They are concerned of Cydney's counts being too low. We expressed our desire to have the scans earlier and if a Lumbar puncture would hold the scans up to forgo that for now and get a scan done. 

Getting another look to either confirm or deny a tumor is obviously the most important to us. If the scans confirm a tumor we need to look at the course of treatment she is currently undergoing and discusses changes needed. We have asked to have scans done as soon as possible. 

So many questions! What other protocols are there, would another surgery be needed, could a shunt tap show us the same as a Lumbar puncture. The neuro-oncologist implied he had not seen a case of a tumor returning to the focal site this early into treatment in his 30 years of work.

For now we wait some more. Wait for scans to be scheduled, hopefully sooner rather than later.  Wait with hopes it is still nothing concerning and we can continue with the treatment plan we have. 

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.

Scanxiety

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.