Tuesday, September 19, 2017

She is determined!

The last 10 days have shown us just how determined Cyndey is to get better and to be ready to go home.  In what should have been the hardest and most tiring week of radiation she powered through her therapies and progressed more than we could have imagined.

She has had good spirits for the majority of her sessions and worked hard to retain the skills she is relearning.




Monday September 18th was her last radiation treatment.  After 6 weeks of daily trips to Mayo Clinic and once a week doses of Chemo, she will get a welcome break for 4 weeks. Radiation brought on nausea, pain in the neck and back, exhaustion, and frustration. 


Watching Cyndey walk down the hall toward the waiting room to ring the bell, which signifies her completion of radiation treatments, was filled with many emotions. We are very proud of her and the hard work she has put in to get her to this point.  We can only imagine how much more she can give now that radiation treatments are done and she will have more energy. 




Up until a week ago it was still much of a guessing game as to what Cyndey wanted and needed. Now we are able to get clear yes and no from her, either by her shaking or knodding head or with the use of her communication buttons.




Now we look forward to moving back to the rehabilitation unit to begin aggressive therapies 6 days a week. In preparation to get her home.  

Chemotherapy will begin in 4 weeks and will run for 42 weeks.  It is a long road ahead and hard battle to fight still. 

I know with her  determination she will make it through. 




Saturday, September 9, 2017

Stronger everyday!!

We continue to see great improvements with Cydney. The weekends show the most progress. Having a couple days off from radiation gives her a lot more energy and stamina to work on her body movements and control. She tends to lose a little strength and endurance throughout the week as radiation drains her.

Raising her head and being able to control putting it back down is a huge step. 

We are looking forward to these last 6 radiation treatments! Ready to get them complete and give her a break from the intense treatments. Our hope is for her to be able to engage in some aggressive therapies once she has more energy and for the progression to continue at a faster pace. 

She still has some nausea and gets sick occasionally. That is to be expected from the Chemo. We attempt to stay ahead of it with medications. Her feedings seem to be under control and working well for her. She ocassionally complains of pain on her neck and back from the radiation. Her skin is slightly red at times, much like a sunburn. It is not as red or there is not as much peeling as I expected to happen, I was told that could still come as she gets towards the end and for week or so after. Aquafor helps ease the pain and keeps her skin from being too irritated. 

This past week I took Nathan and Lily to the Beads of Courage studio in Tucson to make Cydney a Sun Catcher. Nathan picked out all the Beads based on what he thought Cyndey would like.  He took pride in making something for her, saying "She will think this is really pretty." He then told the studio owner that he was going to take this to his big sister in the hospital.  



Thank you all for the encouraging messages, cards, and phone calls. I share with Cydney all those messages to her and continually let her know there are many family and friends around the world thinking of her and praying for her recovery. 





Tuesday, September 5, 2017

She is Amazing!

For now we have won the nutrition battle. There does not seem to be a nutritionist who wants to work with us or has the time to talk with us about Cydney. So for now we have control of her feedings. The past three days she has been on bolus feeds and a overnight feed. She has tolerated it all well, without any issues.

Also in the last few days she has made some awesome improvements. Reaching up for Didgee, moving legs in and out on command, turning head side to side (giving us another way to communicate and get "yes"and "no" answers from her).

video


 Nathan and Lily went up to Phoenix for the weekend for a visit with Cydney. They all have fun being together.

Beads of Courage Program is a way for children to tell their story through colorful beads each representing each milestone of treatment. We are only at the beginning of Cydney's bead collection and working on stringing them together to display for her. Giving her a visual representation of the battle she is fighting and her strength which continues to impress us. It was nice to learn the program is local to Tucson and has a studio we can go to and make fun special pieces.




Everyday we look forward to what Cydney will do next. Waiting so impatiently for her all her  "second firsts" . Sitting up on her own, saying words, standing, walking, learning to eat again. Skills we may have taken for granted as she learned them as a baby. Knowing how precious those moments will be to see again brings tears to my eyes. She is amazing and working her hardest to regain these skills.



Saturday, September 2, 2017

Fighting for our daughter!

The past two weeks have been met with frustrations and tense conversations with the nutritionist. Other concerns and frustrations we had with communication with the medical team have been addressed and are improving.

Since radiation treatments began Cyndey's feeding schedule was changed from several bolus feeds during the day to a continuous feed for a span of 13 hours.

Due to her scheduled radiation treatments each morning she is not able to have food past midnight. Radiation is schedule for 7:30 or 8:00 am each day. She is transported by ambulance each morning by 6:30 to Mayo Clinic. Once the treatments are done and she is transferred back to Phoenix Children's Hospital it is 11:00.

After a few days of getting sick we made the decision to change her formula to one called Liquid Hope. Being a blended food option we felt her stomach would handle that better than what the hospital was providing. That decision was met with resistance, from the nutritionist as it is not the hospital provided option.  Once past that discussion, we began the new formula and noticed a better tolerance, but she was still getting sick.

Cydney was moved then to the oncology unit. The nutrition team followed us to this unit and remained to be resistant on our choice of formula. A formed was signed stating we are taking responsibility of her feedings.

We have had MANY discussions with the nutritionist that we feel the feeding issue comes from them trying to push too much volume in order to reach a calorie count they feel is needed for Cydney.  Countless times we have attempted to explain to them how small Cydney is and how she is not normally a big eater.  We have discussed ways to increase her caloric value without increasing the volume and met with resistance there as well.

One solution the nutritionist and doctor brought to us was a IV fluid called TPN or PPN. Seeing as her stomach and GI tract is still working, along with risk of infection it was not a route we felt was best for her.  Again asked about ways to increase the caloric value without increasing volume.

The nutritionist seems to be stuck on this magical caloric value of 1300 kCal, based on a growth chart of  an average 8 year old.  Many times we have explained to them Cyndey is very small for her age, always having been in the 1%. The numbers presented to us are based off a child in the 25%, somewhere Cyndey has never been. Again showing them formulas and recommendations from other sources to support our goal of a calorie dense volume, that does not exceed what her stomach can handle at this time.

Seeing her be fed, until she pops and the doctors and nutrition continue to blame the treatments, formula itself and Cydney makes frustrations rise quickly.  Not being listened to and our suggestions of how we think she will tolerate feedings dismissed makes us angry.  Being told we are starving our daughter by pausing feeds when she vomits and will be forbidden to touch the pump is infuriating. We want what is best for her obviously, and want to find a solution that will work for her benefit.

We have asked for a new nutritionist, one who will sit with us and discuss the best solution for Cydney.

We have 10 radiation treatments left. The countdown is on!!


Cydney continues to improve with head and trunk control. She is swallowing more, was able to get pudding down and has almost no more drooling.

She has started to be able to reposition herself slightly while in bed.  Rolling for side to back and adjusting shoulders, moving head from side to side, and getting legs in a position that is comfortable for her.

She gave us a thumbs up today! Holding her hand in front of her she watches her thumb as she raises it up! Lots of cheers for that accomplishment.


September is Childhood Cancer Awareness Month! Keep all those children who are fighting this awful battle in your thoughts and prayers!