Progress Continues and Happy News!!!

Each day continues to be better than the last and we can see things improve more each day.

Progress on the house:
The home projects are coming along. The ramp is almost fully completed and the inside modifications are beginning this week. We are very happy with the results of the ramp and are excited to show Cydney!

Cydney's Progress:
Cydeny continues to get stronger each day. She has mastered the bike and loves to ride up and down the halls.

She is coming along with being able to mouth more words and become easier to understand.

 She has also started to use a walker for walking as well as trying to without. Monday her shoulder was bothering her and she elected to walk down the hallway with only a little support from the Physical Therapists hands under her armpits. She continues to show the strength and determination we have seen from the beginning to get her body and mind back to being Cydney.

Cydney's Thinking face. Anytime she is asked a question she sits like this for a few seconds before answering. 

Working on walking with no walker

Taking time out of bed to stretch out on a mat and work on rolling from side to side.

Using her walker with PT

Being silly!

The best news of the week came today when they told us she would be discharged on Friday!!! This Friday, October 6th!!!

We are very happy to have her coming home. She will get almost 10 days at home before having to start her Chemotherapy treatments. She will remain to do Outpatient Rehabilitation Therapies in Tucson. Her evaluations are scheduled for next week already. I have never seen Nathan smile so big as when I told him she would be home very soon. Followed by claps and squeals, he was jumping up and down and then proceeded to name off all the things he needs to show her and do for her when she gets home. Lily is also excited and followed Nathan's lead of clapping and squealing. 

Looking forward to being back home together as a family! 

Putting in the hard work

This past week, Cydney was moved to the Rehabilitation Unit of Phoenix Children's Hospital.

Cydney continues to put in hard work during her therapy sessions. She continues to progress each day, getting stronger and closer to coming home.

Working on standing on her own

Practicing counting on her fingers

In the past few days she has also started to mouth words, trying her hardest to get the sounds to follow. We are hopeful this means hearing her talk again is not too far off.

The past week we were all able to be together in Phoenix as a family. It was fun to have all the kids together again. Cydney enjoys having them there to laugh and play with. We call Nathan and Lily "Chaos" . Asking Cydney each morning if she is ready for Chaos to come, she laughs at this and nods her head. Seeing her laugh at Nathan's never ending "Booty" jokes and Lily's constant jabbering about wanting to eat is heartwarming to see. 

All three together watching a movie

Cydney and Nathan laughing with each other, as Nathan most likely is continuously saying "booty, booty don't smile Cydney"

Cydney sat up on her own towards Nathan while he was playing with her

Lily enjoying some snuggles with sissy

Hiding from doctors, nurses and therapists whenever they walk into room

Cydney remains in good spirits though it all

We have also begun the modifications at the house in order to prepare to bring Cydney home. We want to thank all that have contributed to the Welcome Home Cydney Fundraiser set up by our Squadron family. We hope to have a comfortable an adapted home for Cydney to come home to very soon. Having her in the comfort of her home as she begins Chemotherapy next month is something we feel will be a big boost to everyone's spirits. We all miss being at home together as a family and not having to shuffle between two cities. 

Work on Backyard Ramp underway:

Thank you all for the continued thoughts and prayers. We appreciate all the kind gestures, meals, and messages to just check in on us. Knowing so many are continually thinking of her as she fights this battle is comforting.

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. 

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. 

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).

 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.

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!

Acknowledging the small improvments

It is easy to get bogged down each day with the struggles and frustrations of not having our healthy Cydney back at home and having to see her endure all she has in the last 7 weeks. Knowing that she is missing out being in school with her friends, one of her favorite places to be; and being spilt up as a family. Living our lives in two separate cities, staying updated through phone calls and texts; not able to all be together is tough. We are adjusting though and making the best of the situation. We are grateful to have family who are able to come out to help either at home or up at the hospital.

Looking back to where we were 7 weeks ago, Cydney was sedated and on a ventilator. We were living exclusively in the hospital with two of our kids taken in by our amazing friends and still in disbelief of what had just transpired in the days past. So much unknown, so many questions to have answered.

2 days post suregery

Today we are able to get responses from her. From smile and laughing to crying. We use her emotions to communicate. While not always easy, it is a step forward.

The past week has been about making small improvements. Improvements in communication with the medical teams. Being her advocate to give her the best care we feel she deserves and needs. Being her voice. Jared has gone round and round with the doctors on how we would like to see things happen and what we feel is in her best interest. Met with resistance at times, it has not been easy to get his concerns heard clearly or to get an acceptable compromise or solution. We are making headway and on a forward moving track now hopefully with no more major road blocks.

Her MRI came back clear of any shunt malfunction. The shunt settings were adjusted and will have another MRI in a few days to see if there is any change in pressures or fluid levels in and around the brain.

She is on an anit- anxiety med, to hopefully calm her down and lessen some anxiety she appears to be having. Her seizure meds have also been adjusted and seem to be helping. Her latest EEG showed no seizures, Yay! She has started on her new formula Liquid Hope. The rate and volume remain to be a battle as we learn what her tolerance is before getting sick.

Radiation continues to knock her out and the exhaustion is more prevalent now as she takes longer to wake from sedation. This week is her third week of radiation.  Wednesday will be her final day of whole Brain and Spine radiation. The next 17 treatments will be focused on the tumor site. She has had two rounds of the drug Vincristine and 4 more to go in this phase or treatment.  Her hair has begun falling out. Coming out in handfuls as it is brushed or her head rubbed.

It is important to get her adequate rest on the weekends when she has days off of radiation. We attempt to keep them low key. This past weekend we took Nathan and Lily up to see her. Seeing them all together and smiling was fun to see. Nathan has become more comfortable around her and was eager to jump up on the bed and watch a movie with her, give her a hug and attempt to tell her a funny joke or two. Cydney was the happiest we had seen in a few days. She lit up when she saw both Nathan and Lily come into the room.

Fun with the siblings

Peaceful sleep

Ready for a walk outside

We are hopeful to have turned a corner and to be able to continue to see more improvements each day. Everyday things change and we see a new action, reflex or response to stimuli. Some things come for a day or two and then you won't see her do again. Like sticking out her tongue. Over the weekend she started doing so, sometimes on command and other times you would look over at her and the tongue would be sticking out. She also started to have a stronger grip on our hands or finger as we held her hand. Almost making a thumbs up sign in response to a command. She remains to get stronger in sitting and holding up her head and having trunk control.

The encouragement continues, as small improvements are made each day. I am amazed at her strength and will to fight through it all.