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.  

Friday, August 11, 2017

Week One Complete

The first week of radiation treatments is done. Cydney did well with the treatments has powered through therapies each day.

Riding in the ambulance after her radiation treatment. 

Today she also had a G-tube placed. This will replace the NG-tube in the nose. She looks more comfortable with the nose tube out. She is not feeling that well, due to not having been fed since midnight. With the radiation treatments and the following procedure she has been NPO since then. We are getting her fluids in the mean time and going to get feeds started again at 8pm. I think she will be much happier once this happens and will then be able to get some sleep.

During physical therapy she is working on holding up her head and trunk control, stretching limbs and getting range of motion back. Occupational Therapy is working on getting her arm and hand movements to be controlled and consistent. Speech Therapy works on swallowing and facial movements. It has been and will be a long slow process.

Hopefully we are done with procedures for a while and can concentrate on getting a consistent feeding schedule that keeps her nourished, happy and thriving. We will be starting to provide her with a whole food feeding tube formula called Liquid Hope. It is not provided by the hospital so we will be supplying that for her and working with insurance to get the coverage.

Looking forward to a low key weekend with some therapies and lots of rest for Cydney.

Week two of radiation with include her first dose of the Chemo drug Vincristine.

Cydney enjoys her visits from the Therapy Dogs.
Meeting Napa

Meeting Rosie at Mayo Clinic
We keep the encouragement coming for Cydney, continuously explaining to her what is going on and why she is having to relearn all the things she knew how to do. It is hard to see her struggle and become frustrated. Seeing her smiles and laughs make the hard times easier to face. She enjoys watching old videos of herself, Nathan and Lily. We have even dug out some old baby videos of her just learning to talk and walk. She gets a good laugh out of those.

Thank you for the continued support and messages of encouragement.

Monday, August 7, 2017

First Day of radiation treatments

Bright and early we were up preparing for transport to Mayo Clinic for the first day of radiation.  Cydney was very sleepy this morning, but in a good mood. Every week Monday-Friday will be pretty much the same routine. For the next 7 weeks. With radiation at Mayo and then back to Phoenix Childrens for therapies.

We waited in a pre-op room for about an hour before the anithesisologist came in to talk about the process and get a check up on Cydney.  From there she wad wheeled into another prep room where we gave our hugs and kisses before they administer the sedative and place her in her radiation bed.

We waited for almost 2 hours before we were told she was done with today's session and on her way to recovery where we could go sit with her. Once she was awake they prepared to transport her back the Phoenix Children's.

Once back to the hospital she was assessed by the nurses and cleared to begin her physical therapy session. She was not happy at all and cried the whole time! She went down to the rehab gym and played with some toys to help her use her hands to manipulate buttons and switches.  She was not happy, but she participated and completed what the therapist asked of her.  There was lots of praise for her, especially as she was holding her head up really well and engaging the core to pull herself forward as she sat on the treatment table.

She was allowed an hour break to get a feed started before occupational therapy would come by. Followed by speech therapy.

We also saw the bell. A goal! To be ringing this bell as loud and as hard as she can at the end of treatments. Right now that goal seems so far away. We must keep focus and think positive as we support her towards this goal.

Sunday, August 6, 2017

Treatment begins

Sunday afternoon we moved down to the rehab unit in preparation for the next step in recovery.  In rehab she will be on a set schedule for her therapies as well as a daily trip to Mayo Clinic for Chemoradiation.  These next 7 weeks will  be a real test in endurance and determination. The progress that is reported to come from this intense therapy is promising, and we need to be ready to support her more than ever. She will have days she does not want to participate and she will be pushed to work. It is all for her benefit as hard as it will be to watch.

Monday morning Cydney starts her Chemoradiation treatment.  She will be transported by ambulance to Mayo for the treatments then brought back to the hospital to begin her afternoon of therapies.  The days will be long and exhausting for her.

This past week, getting Nathan into his school routine has been a somewhat welcome does of normalcy. He was pumped to ride the bus on Friday, unfortunately we missed it because we did not wait long enough at the bus stop.  He was disappointed to miss catching it for the ride to school, but that afternoon I stood at the side of the road waiting for his bus to bring him home. He was grinning ear to ear as he exited the bus.

While hard to send him off to school knowing Cydney should be with him to walk in together and wish him a good day, it is refreshing to see him be brave in his own way and have the courage to go alone.  I know Nathan, and not every day will go as smoothly as the last few have. He will have days he is not wanting to go alone or days he will be scared of something he has been doing for weeks.

Thursday night he had been clingy and not wanting to be far from me
We sat and built Legos, drew pictures for Cydney, and read books to Lily. He would mention that he was scared, but could not say what he was scared of. Keeping him occupied helped too keep his mind focused, and there was an endless supply of hugs and cuddles.

After his bedtime story, he began asking questions about Cyndey and when she would come home. We talked about the tumor and reminding him what she had gone through in the last several weeks.  We talked about the upcoming treatments and how they will make her feel tired and yucky, but they are done to help her get better.  He requested me to rub his back as he fell asleep and I of course was more than happy to do so.  Just as he was drifting off to sleep he looked uncomfortable and I adjusted his pillow saying something about laying that way could hurt his neck.  His response to this was heartbreaking. He asked me if he hurt his neck would it be like what happened to Cydney? After a long hug and some silence until I could talk again; I told him no, he did not need to worry, and that he would be fine.  I layed there until he fell asleep, rubbing his back, praying that I am able to calm his fears of all that is happening.

Lily is 18 months now and her favorite word is no. She has a scowl she will give if you redirect her from doing something she should not be doing.  It is funny to see and hard to not laugh. She knows things are not our normal and is also clingy. Keeping her in a routine is really important. Her favorite activities are reading books, chasing Nathan around and sitting with mom or dad.

This weekend was also spent having time with family from OK. Celebrating Cyndey's birthday as well as getting time at home with Nathan and Lily. We were sad to see them leave today and anxiously await their coming back.

Hoping for a good night's rest for Cydney as she has a busy day ahead tomorrow.  

Thursday, August 3, 2017

Happy Birthday!!! and First Day of School

Today Cyndey turns 8!

8 years ago we became parents! Bringing a baby into this world, while stationed in Misawa Japan.  It has been a fun, exciting and sometimes exhausting journey.

She had a good day being celebrated by the nursing staff, Child Life Specialists and other medical teams she has been seeing this past month.

Grammy and Aunt Jo also arrived today to shower Cyndey with affection. She is anxioulsy awaiting Pop Pop and Aunt Cait coming in tomorrow.

Today was also the First Day of School! It was a day the emotions took over. 

 Waking Nathan and seeing his nervous excitment, to seeing Cydneys desk in the classroom, it was all to much to take in.  I was happy for Nathan and excited for him to begin his school year as normal as possible.  

We woke up had breakfast, searched for just the right shirt because the one he chose the night before was no longer a good choice 😀, packed his lunch and hurried out the door to ensure we could get a parking spot in the ever crowded parking lot.  

On the way to school he adamantly reminded me he would ride the bus tomorrow, was only letting me take him so I could meet the teacher.  We shall see how that goes in the morning.  

Once there, more excitement set in and he lead me to his classroom, reciting the room number the whole way.  After getting him settled into the classroom and talking with the teacher I headed to Cydney' s classroom.  

I knew it would not be easy, but I wanted to introduce myself to her teacher. As I entered the room, no one else was there, other than her teacher Mrs. Mo. All the kids were still in the hallway with their parents saying goodbyes. I introduced myself and saw her desk, and then the waterworks turned on. 

Her teacher and I discussed ways to include Cyndey in classroom activities. She is having the class make birthday cards for Cydney and a counselor is ready to talk to the class as they have questions regarding her absence and situation.

It was heartwarming to see they are all still thinking about her and want her to be involved as much as possible.

Tuesday, August 1, 2017

Let's try this again

Cydney was released from ICU for the second time today. We are back to a general care floor in transition and while we wait for a bed to be available in the rehab unit

There have been no signs of seizure activity in the past two days. The EEG came back clear and she has not shown any of the behaviors or vital signs she was having prior to the two seizures.  Her medication is doing its job.

She participated in therapies today and even got back into her wheelchair for a walk around the unit. She is back to laughing and giving big smiles when she is happy, and cries when she is sad or uncomfortable with something.

Most of the day was spent waiting for her bed to be ready on the new floor.  Lots of waiting....

Her formula has been changed to a closer to pure food/blenderized food option, which she seems to be handeling well.  Wakes up with no apparent belly discomfort or crankiness.

We are looking forward to continuing making small improvements each day and gaining strength along the way.