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!