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!







Tuesday, August 22, 2017

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.



Thursday, August 17, 2017

Can't catch a break

After the last several days of high HR, poor sleep, and not being as responsive to us Cydney has been moved out of rehab and back to the 6th floor. Just a step down from ICU.

There is a lot going on with her and many doctors working to find an answer and solution.

One thing we are concerned about, and probably the most concerned, is her shunt. The signs of shunt failure are headaches, nausea, vomiting, irritability, change in behavior or intellectual performance. Since Cydney is not able to talk to us we can only guess what is causing her the pain and discomfort. She has vomited, several times in the last week; she has been irritable when it comes to therapy or anyone wanting her to do something that forces her to work. After much pleading and short of demanding she is now ordered for an MRI to check and make sure all is working as it should.

She had a kidney ultrasound yesterday after a culture came back positive for a UTI. There were small calcifications found in the kidneys, the doctor did not want to call them stones. She is on antibiotics for the infection.

She has had two EEGs in the last 48 hours that have shown seizure activity, seizure meds are being adjusted. They seizures are subclinical, so we have no real outward sign they are going to happen or are happening. She stares off into space a lot and sometimes it takes a few seconds to get her to snap back and have a response to us.

She had an EKG done that showed no real concerning issues. She remains to have her heart rate in the 130-150 range. With it coming down to 120-130's while she sleeps. We are still looking to find the reason for the increased HR.

Her red blood cell counts are low, she received a transfusion this afternoon. With her counts low, she would not be able to move forward with the radiation treatments. With the transfusion she should be on track to continue tomorrow as planned.

Her poor body is fighting exhaustion, and with the schedule of rehab being very intense for her she can't get a break or time to rest. Her body is being put through too much and it is time to pull back on some things to give her the rest she needs.

Wednesday at 4pm she finally got her Chemo drug administered. After waiting for three days for an answer to when it would be given, frustrations were high. Communication has been almost non existent with oncology since the day they told us the plan and explained to us the cycle schedules. She was originally scheduled for Monday.  Talked with the oncology team and hopefully got our thoughts on the lack of communication across and we are now going to be more informed.

We have talked with her about the upcoming hair loss and trying to make it as light hearted a situation as we could. She handled it well, and we talked about some fun ways to wear scarves, hats or wigs when the time comes if she chooses to go that route.

I am very happy to see her smiles, when she is alert enough to smile for us. We still can get giggles from her, and that is the best sound ever!! She loves to laugh at mom and dad being silly and telling silly stories or jokes, she still responds to tickles. Her ability to control emotions is also affected. She will be happy smiling, laughing one minute and it will switch to crying so quickly. All we can do is comfort her and try to change the subject back to happy thoughts.

Cydney adores the nursing staff at Mayo, they dote over her from the minute she arrives to as she is being wheeled out the door. They love to watch her Cydney videos, seeing her talk and express who she is. It gives them a personal connection to her, as not just a sick child lying in bed coming in for radiation. They can see her sense of humor, he quick wit and her love of talking.

We all were laugh crying at some of them the other day, even Cydney! It is hard to see her in all this pain or frustration that she is having and not able to tell us exactly what is bothering her. We know our Cydney is in there and we have to be patient for her to heal.  The smiles and laughs make these hard moments easier to bear.

Prayers continue for her to keep fighting this battle and as we await test results from her MRI. Prayers as we continue to move forward in her treatment plan, as things are not going to be easier on her. Prayers for our strength as we support her through her battle.


Nathan and Lily continue to do well all things considering. Lily is learning so many new words and doing more toddler behaviors. She has the best "evil" look and she will shoot you that look if you tell her no. She loves Moana! Gives the best hugs and kisses to me anytime I ask for them. So sweet!

Nathan is doing well in school, his teacher called me today to say he is a very happy boy in class and shows his love of learning every day. I was very grateful to hear that and to get a phone call from her today. Puts my mind at ease. He was able to choose a toy out of the treasure box today and showed me what he picked out. He told me that he had chosen it for Cydney, because he already had one similar and wanted her to have it too because it would make her laugh. Before he went to sleep he was asking about her and how she was able to shower or brush teeth in the hospital. I was able to show him the videos and pictures we take on a daily basis of her activities. I think it helps him to see what she does and what her surroundings look like on a daily basis. He always comments on her smile and how she will be happy to see him.

Thank you, Thank You, Thank you all for the continued support. All messages and comments are read and received. We absolutely feel the love from everyone.


Waiting for transportation to Mayo Clinic

Soaking in the sun and warm air. Hospitals are so cold!!

New shoes and leg braces to help stabilize the ankle when she is able to stand and bear weight










Tuesday, August 15, 2017

It has been a rollercoaster

The past few days have been a rollercoaster for us all.

Saturday was a rather relaxed day, with shortened therapy sessions and no plans for anything else. We took advantage of the down time and let Cydney get as much rest as possible. That evening she ended up getting sick and we had to stop her feeds for a while to give her stomach a break. It is a fine line of how much we can mess with the feeding schedule.

The nutritionist and nephrology units have an amount of fluid and calories they would like to see her get in a day, and her window of time to receive the feeds is shortened. Due to her needing to be NPO for radiation each day, she is not fed past midnight.  Only clear liquids are allowed, and those can only run until 6am when we leave for her radiation treatments. We do not get back to PCH until 1030 or 1100, and feeds can be started back again.  We don't want her fed too fast, which can lead to getting sick.

Sunday was a very low key day. No therapies at all. Cydney was able to sleep most of the day. We made a switch in the time of day her Zolpidem was given, in order to be able to observe if there were any effects on how she reacted to the medication. As it has been used in cases of Cerebellar Mutisim/Posterior Fossa Syndrome patients before who showed increased communication and movement. She had been getting the drug at night time and we would see more movements out of her an hour or so after having been given the medication. After her dose on Sunday afternoon she slept and seemed to get some quality rest.  She is beyond tired and working so hard to stay awake.

Late Sunday night early Monday morning, Cydney had another episode of getting sick, this time it happened just after stopping her feed at midnight and repositioning her in the bed. The nurses jumped into quick action and got her all cleaned up and back to sleep as fast as they could. By 230 everything had calmed back down and we were able to get a few hours of sleep before the Ambulance transport was ready at 615 am.

Monday Jared drove up to Phoenix to be here for the first day of her chemo administration. Although it did not end up happening and there has been no word from Oncology why she was not given the drug. As we got back to PCH she began her feeds and went right on into Physical Therapy. Each therapist said she was very tired this day, but was able to push herself through the sessions and do well.

Monday afternoon there was a point that she did some twitching and eye movements that appear to be seizure like. We discussed with the doctors about it and were told she would be monitored and to keep a close eye for other incidents like that one.

Monday night there were some issues keeping her calm and staying asleep. Jared was staying in the hospital room with her, up until the early morning hours watching over her.

Today, Tuesday, Cydney was very tired. You could tell she did not get a good night of sleep, she was very groggy and slow to react to our commands. We had a scare just before leaving for radiation when her HR spiked and Oxygen rate dropped really low. She took a few moments to respond to our touches and voices. We are not sure if these are seizures or what is going on. The past several days her HR has been high and she seems in discomfort. We are not able to pinpoint the source of pain, if that's what it is, due to her inability to communicate with us.

She had an EEG ran again today, to monitor for seizure activity. We will await the results and findings if anything comes from that. Doctors do not have an explanation for the elevated HR, when her BP is in a normal range.

We continue to watch her vitals and note any significant changes we see. Knowing that radiation and the eventual Chemo is only going to make the tiredness and possible sickness more pronounced we are evaluating her daily to see how much she is able to participate in the therapies. If she were to get to a point she is not able to participate or benefit at this time we will move to a different room on a different floor that can more accommodate her need for closer monitoring.