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.






 

Monday, July 31, 2017

Getting back on track

Sunday night passed without any seizure events. No clear reason for the seizures, we just hope with medication for the time being they are controlled.

Cydney was extubated this morning and has been doing well all day.  She is once again responding with both smiles and cries, which is reassuring.

We are getting her back on a feeding schedule, back into therapies, and preparing to begin the radiation and chemo treatment phase.

Our girl is a strong fighter!


video
July 2017! This month has been in slow motion some days and others I can't believe it is past.

Sunday, July 30, 2017

Back to ICU

Saturday night around 11pm Jared called and said Cyndey had thrown up and was beginning to act different and unresponsive to him again. She was ordered a head CT and came back from that around 1am. She then had a massive seizure! Wish resulted in her being intubatedated and rushed back to the PICU. I had been getting update calls from him every 15 minutes, then when she was being taken back to PICU told me I should come back to Phoenix. 

I called a neighbor to come sit with the kids and to be with them for the time being until we knew more of what was going on.  

By 230 am I was on the road to Phoenix. The longest 2 hour drive, that seemed to pass in an instant.  

I arrived back to PCH and made it up to the ICU. Seeing her back in the bed, hooked up to all those machines again was gut wrenching. I walked in and held her hand, telling her I was here and to hang in there. Gave Jared a hug and exhaled finally. 

Today was spent waiting for doctors to decide on whether she needed another MRI or not. In the end after talking with them and reviewing MRI ad CT scans from days past we decided there was not a need for one today.  Ventricles were an appropriate size, no evidence of excess fluid around brain or of a shunt problem. 

It was debated and decided to keep her intubated for the night, hooked up to EEG, and on sedatives to give her a night to rest after the last two days of not much rest.  

It is scary to see your child in this position and to not be able to help them. 

There are no answers to why she is having the seizures or what causes them. She remains on Keppra for the time being. 

Hoping and praying all goes smooth tonight! Thank you again for the continued support!



 

Saturday, July 29, 2017

Moving forward

Friday morning Cydney was preparing for a transport to Mayo Clinic for her radiation planning session . She was to be fitted for a mask and a bed positioned for her to be in proper alignment with the radiation beams. Due to once again needing sedation, she was put on NPO status once more. We then waited for a time for an ambulance to arrive to provide the transportation. 

Once she was in the ambulance, I left to go back home to Tucson with Nathan and Lily. I wanted to get Nathan back home to prepare for starting school in a week. Jared is staying with Cydney and then we will decide how often we rotate who is in Phoenix.

Walking back into the house was hard, seeing Cydney's shoes by the front door and things around the house set in realization she will not be home for a while. Pictures she has drawn and books she was reading sitting out waiting for her to return to them. I had to busy myself with getting the others settled in and fed, bathed and into bed.

Later that night around 10:30pm Jared called to let me know that Cydney was not responding as usual, had a tense body and was shifting her eyes to her right side. The doctors and nurses were attending to her and working to determine the cause of her sudden change. Her Heart Rate and Blood Pressure were high. I got update phone calls every 20 minutes or so. The doctors determined she may be having seizures and put her on Keppra. They also felt dehydration was an issue and immediately began water and fluids.

It was a long night of observing her and not much rest for either Jared or Cydney.

Saturday she was able to get some rest and participate in her therapies.

Back in Tucson, I took the kids to Nathan's Kindergarten welcome party and met his new classmates as well as reuniting with friends from preschool. It was nice to see Nathan so happy and excited to be at school again. Had a small breakdown when one of the other moms there who also had a kid in Cydney's class began asking how our summer was going and which teacher Cydney had this year. She obviously did not know what has been going on and was shocked when I filled her in. I tried my hardest to keep it together but as the words  "Brain Tumor" left my mouth I got choked up. We got Nathan all signed in and I tried to get him to go play as we made our way thorough the room. We met up with his friends' moms and it was very hard to keep my composure. I had to gather myself for his sake and encourage him to get involved in the activities set up. Once we occupied ourselves with those it was easier to have some distraction.

The kids are happy to be back in their home, although Nathan asks when can Drew, Chloe, KK and Zeke come over because he needs to show them his Legos and things in his room.

These next couple of weeks will be adjusting to our new normal, at least for the next few months.

Thank you for to continued messages of thoughts, prayers and offers of support! They do not go unnoticed and as we find things we would like or need help with we are reaching out.


Thursday, July 27, 2017

Getting some answers...

Today was an extremely busy day! Starting at 7am with a constant stream of doctors, nurses, specialists, therapists, social workers and case managers. There seemed to be a line of people waiting outside her door, as one left another entered. This went on until close to 11am. Cydney was set to get her Port a Cath inserted today, as well as a baseline hearing test and MRI.

Yesterday and today we had talked with Oncology about their plan of attack for her Cancer Treatment. We learned her specific type of cancer is a Medulloblastoma, subtype Sonic Hedgehog (SHH). The standard of care is to have 7 weeks of Chemoradiotherapy, in which she will go to 13 days of radiation on full brain and spine and 17 days of radiation localized to the tumor bed along with administration of one Chemo drug Viscristine once a week.  This phase is followed by 4 week rest period.

The next phase is 9 Cycles of Maintenance Chemotherapy spanning over 44 weeks. Totaling 55 weeks from beginning to end of treatment.

There are two dosing cycles she will follow:
             A is 42 days of Cisplatin, Lomustine and Vincristine
             B is 28 days of Cyclophosphamide, Vincristine and Mesna
The cycle schedule is AABAABAAB

It is planned for her to start radiation in the next two weeks.

She will remain in Phoenix for at least the next 8 weeks while she undergoes the radiation and rehabilitation. Once it is time to start the Maintenance Chemo we hope to be able to be back in Tucson except for the days she needs to come to Phoenix for treatment. Some of the chemo treatments will require a one to two day hospital stay as further tests and observations will be needed.

Today was a hard day for Cydney, due to the Port a Cath scheduled she was placed on NPO as of midnight Wednesday night. I'm sure she was very hungry when she woke up. The procedure originally scheduled for 1230pm finally took place around 3pm and she was done and back in the room by 5pm. She was also scheduled for an MRI at 6pm, which took place closer to 730pm. Cydney was finally able to come off NPO at 6pm and got a feed in before the MRI. After the MRI she was brought back to the room and provided a new air bed. She had the most relaxed face and look of comfort she has had all day. With a huge sigh and smile she seemed to melt into the bed and relax.

Time seems to drag on and at the same time, it is hard to believe that July is almost over. To think about what has transpired in the last month is mind numbing. For Cydney to go from one day being a happy girl running around, jumping in the pool, telling me silly jokes that don't make sense to being in a hospital bed unable to move or talk is too much to comprehend.

It is uplifting to see her make these small improvements each day. Over the last two days she has started to hold her legs up in a bent position and move them side to side on command. Her grip strength in the right hand in returning and she can do a slight squeeze on command now. As long as she is calm and not upset we can get smiles from her to communicate Yes or No.

We are moving past the first hurdle and preparing to tackle this next one, putting up the biggest fight we can. It is daunting to think of all she still has to face, taking it a day at a time makes it more manageable.

It is time to make a long term plan on getting Nathan and Lily back home as Nathan prepares to start school.

Thank you for all the prayers and continued support! We could not have handled these last few weeks without everyone's help.
Getting some fresh hot Desert air after three weeks inside!
She took a deep breath as we walked out and she soaked up
the warmth of the sun.

I'll love you forever,
I'll like you for always,
As long as I'm living
my baby you'll be.









Monday, July 24, 2017

Battling Frustrations

After having  rough night of sleep, we woke up to a new parade of doctors coming in to introduce themselves and talk to us about their plan for us. There is some confusion on how long we will be on this current floor. Some say we are her for a week, some feel we could leave tomorrow. My understand was we were here until we talk to Oncology and get their plan. Since we have yet to hear from them, we will have to track them down.

Emotions ran high today. Cydney was battling some frustration. I can only imagine how hard it is for her to not be able to communicate with us. She has to be screaming on the inside what it is she wants or needs and has no way to express that to us. At one point today I sat in bed and just held her while she cried in my arms. She cried, I cried and we let the emotions out! I want to help her and fix all of this, I can't and that breaks my heart. After our moment we got it together and prepared for Physical Therapy.

She is working so hard and showing a lot of courage. She got a little worked up and overtired during Occupational Therapy today and had to stop early. Once we got her calmed back down, she enjoyed some time  in the playroom with Nathan and Lily and our friend Drew.



Today was a hard day emotionally. We know we will have these days and we have to allow ourselves the breakdown. As long as we come back from those breakdowns and conquer the goals for the day we are doing alright.  Supporting her through these days are just as important if not more so than the really good days. It is a long road ahead and to expect a 7, almost 8, year old to just accept what is happening is not realistic.

Tomorrow we hope for a better day.

Thank You Aunt Judy! We needed this today! 

Sunday, July 23, 2017

Moving Day!!!

We moved out of PICU today!

This morning around 6 the doctors all started coming in to do their assessments on Cydney and to clear her for the move to a general floor. There we no less than 6 doctors that came in and checked vitals, responses and talked to me about their being confident she was ready to leave the ICU. I was thrilled, feels good to feel like we are moving forward. By 10 am during rounds everyone was on the same page and the order was put in for her to be transferred. Waiting on paperwork and a bed to be ready upstairs took a few hours and by 3pm there were ready for her.

We loaded up her bed, a wagon and her wheelchair with everything we have accumulated in the last 24 days. It looked like a parade float going down the hall.

I was pleased to see we still have a view of the Fire Department and their message of Hope.



When asked how long we anticipate staying on this floor, I was told it is up to oncology now and what treatment plan they put in place. We are told they were waiting on the results of the genetic testing as well as the CSF labs they took yesterday during the Lumbar Puncture. We have preliminary been told by the Neurosurgeon that the test came back showing NO signs of malignant cells. I will wait for official word from Oncology, before shouting from the roof tops.

Today was very relaxed and with minimal interruptions, only 20 or so. No therapies today. Tomorrow starts the hard work again. I am anxious to see the improvements she makes now that we can concentrate on getting better instead of stabilizing and preventing problems.

Teams of Doctors we work with:
Neurology, Oncology, Nephrology, Hematology, Rehabilitation, Physical Therapy, Occupational Therapy and Speech Therapy.  So many doctors! Everyone has been excellent  and very open to explaining anything we do not understand over and over again until we do.

Cydney remains in good spirits most of the day. She is a little cranky in the mornings before she gets her breakfast feeding and if she is bothered by the doctors and nurses too much. She growls at the Neurosurgeon any time she walks in. It is kind of humorous and teases the doctors when they try to do their assessments by closing her eyes to avoid the bright light. So happy to see she still has a sense of humor and stubbornness.

Tomorrow she will have her 13th MRI done to confirm placement of shunt and catheters. It is what they call a "one bang" so no sedation required.

Biggest Teddy Bear in the World! She loves it though.

      Waiting to be moved upstairs.




Saturday, July 22, 2017

Reflection...

Sitting here tonight in quiet hospital room. Well as quiet and an ICU can be anyway. I listen to the intermittent buzz of Cydney's leg compression pump inflating and deflating. The beeps of machines as her feed is complete, the meds have been administered, and Heart Rate and Blood pressures are measured are all sounds that have become familiar background noise over the last three weeks.

Sounds of nurses and doctors in the hall as they do rounds, waiting for our turn. Each morning and night we stand and listen to the team of doctors discuss Cydney's case. Her diagnosis, her stats and vitals for the last 12 hours and any plans they have for her that day or night. Thankfully the time spent on us has lessened quite a bit! A good thing because she is doing well and there are not many changes that are needing to be made with medication, or treatments. We have come a long way from the first day we sat through rounds. It was as if we were listening to a foreign language, brand new residents who got the deer in headlights look as the parents emerge from the room for rounds to hear the latest, hearing the new residents discuss a plan for a another patient that we knew did not fit Cydney's plan and having to politely correct them. We have built a nice rapport with the entire medical team here in the ICU and are able to joke with them and put in our opinion in regards to Cydney's care and have it received with an open mind.

A few days ago we brought up to the medical team the use of Zolpidem (ambien) as a possible treatment to help with the Posterior Fossa Syndrome. After reading several medical journal articles and case studies that have shown the drug to have a positive effect of other pediatric patients with this same condition we then brought it up to the doctors who after their own research agreed to give it a shot. If anything it would give her some good rest overnight, and rest is something she needs.

Sitting in quite gives you time to reflect. To think about all that has transpired over the last 23 days since admittance into the ICU.   From the moment I heard the words "Brain Tumor" I had to find my inner strength for Cydney. She needed me now more than ever and I needed to show her strength and courage. I had to give her the confidence that she will be ok and she will win this fight. Seeing her in the bed; unable to speak to me, reach out to me, or show me through anything other than tears or smiles how she is feeling; has pulled at my heart in ways words can't describe. All I can do for her now is to reassure her she is doing a great job fighting. She is fighting the hardest battle of anyone!

I haven't asked Why? Why does she have to do this, why did this happen to our family. Only asking How? How do we fight this and how do we support her through it all. I have poured over blogs and Facebook posts from parents who have been through this. It brings a sense of Hope to see pictures of their kids; now years past diagnosis and treatments, back in school full time and doing normal kid things. Knowing they still face some daily struggles and the constant stream of follow up and testing they endure give me a glimpse of how life may be for the foreseeable future. Cydney has a long road ahead and a big fight on her hands, and we will be by her side the whole way!

I am thankful for the symptoms she showed and for the persistence of the pediatrician to not overlook a "simple" neck pain. Even though symptoms worsened rather quickly and it became evident there was more to the pain than a stiff neck, from the beginning I never felt our doctor was not concerned with Cydney and there being an underlying issue.

I pray for her continued healing and recovery as she passes this hurdle and moves on to the next. I pray for the other kids in this unit; those who have only needed a few days stay and then are moved to another floor and those whose stay here was too short and they have passed on.

It is a quiet place up here, as families stick to their own. Caring for their child. You can see the stress on faces of parents whose kid is having a hard day, the relief of those who get the news that they can move to a different floor and one step closer to home. Families with the "orange band" on their arms. Giving them a polite smile or hello in the hall or elevator as we ride up together, hoping it shows a sense of understanding and compassion as we all know the fear and uncertainty we are facing.

Today Cydney's smiles to our silly jokes returned. Seeing funny videos of her siblings and funny things I find on the internet make her laugh. I could do that all day, search for things to make her laugh, because I love that sound! She is trying so hard to find a way to communicate with us. It is a work in progress and one we will work out in time, for now we do our best and use our parent instincts to determine het needs.

A friend shared a quote with me that resonates with me as we journey though this trial.


Friday, July 21, 2017

Shunt Procedure

This morning began with a meeting with the neurosurgeon to discuss our questions for the need of the shunt. Going into a consult room to look over the scans from Thursday afternoon, once again, we sat down and were once again given the opportunity to ask any questions we had and to get further clarification on the process, and any concerns we had of the long term placement of the shunt.

After talking for almost an hour, we had further clarification of Cydney's need for a shunt. Her brain was not absorbing the fluid she was producing as it should. Scans showed the fluid on the outside of the brain. A programmable shunt would be inserted into the back right side of Cyndey's head with a catheter entered into a ventricle in the brain as well as a catheter that will run down the neck, down chest and into stomach for drainage. Cydney will face a lifetime of follow on MRI's to ensure the shunt is effective and placement remains correct. At first it will be every 3 months for a year, then every 6 months for 2-3 years, and then yearly after that; as long as no issues arise.

The procedure was said to last 2 hours. Cydney had already been taken downstairs to pre-op while we talked to the doctor. After we were finished our discussion, she escorted us to where Cydney was waiting. At this time we met with the anesthesiologist and  discussed any drugs that would be used and she reviewed Cydney's history with the past surgeries and the complications that she had. We were assured there was minimal risk to having those issues again, and that they are aware of them to keep an eye on her. Following the Shunt placement the Lumbar puncture would be done. We would once again be getting hourly updates. Time to pace and wait, again. This time it was not as nerve wracking or anxiety ridden. Time seemed to pass quickly and before we knew it we got a call saying the procedure was complete and we could be with doctor for a debrief.

Making our way to the surgery waiting room a sense of relief set in.  Meeting with the doctor further eased the anxiety as she was explaining the procedure and how there was evident pressure in the brain. The shunt was the right path to take.

Next we were sent back up to PICU to wait Cydney's return. She was already getting set up in her room, we waited in the waiting area for the doctors to come get us.  Cydney was in visible pain when we got to the room, crying out loud. We held her the best we could, gave kisses and talked to her in attempt to calm her down. Cydney was eventually given Morphine to ease the pain. Once this set in she was able to rest and continued to rest all day.

Cydney  will remain in the PICU until at least Monday. We are hoping to be able to talk with Oncology Monday for a treatment plan. To think we are three weeks in and we have not even begun to approach the cancer treatment is mentally draining.

I am excited to see Cydney's mood tomorrow morning. To see if the shunt's relieving pressure improves her moods in the mornings. The small amount of time I did see her eyes open today, they looked brighter than in the last few days. Ready for the smiles and bright eyes to be an everyday thing.

Cydney amazes me with her strength and determination everyday.

Thursday, July 20, 2017

Shunt or no shunt???

Today's big question is whether Cydney will need a shunt or not.

We began the morning learning the kidney function and levels were normalizing. That is good news, we just don't know what the cause was or what fixed it.  It was either a lack of free water, a medication she was on, salt being too high or a combination of all. May never know fully, but now kidney specialist are part of the ever growing   team!

MRI was scheduled for afternoon, then at 1000, got a call that there was a spot to fit Cyndey in right then. We had just gotten her settled back in bed from Occupational therapy, and it was time to prepare for transport.

A couple hours later the neurosurgeon called to inform us that her CSF volume is higher than it had been previously although pressures were not too high. We were out with the littles and headed back to hospital to talk with the neurosurgeon.

Nathan and Lily came for a visit, they are so sweet and you can see the concern on their faces for big sis! Nathan put a sticker on Cyndey's hand and says he misses her. Seeing her so sick makes him nervous though. During PT we worked on giving them high fives as well as sitting up.  Left leg remains the strongest, although today we saw some twitching in the right leg.  That is an improvement, and one we are happy to see. We get so excited for those small improvements, and make a big deal.

Today was also working on relieving a bloated and gassy tummy.  Between all the meds, steroids, and what her body has been through it is not surprising. It is hard to see her in pain and to not be able to fix it.

We finally met with the neurosurgeon fellow and tried to get a clearer understanding of the need for shunt, but still have questions to ask the doctor tomorrow morning.

The lumbar puncture is also scheduled for tomorrow. Waiting on these results for oncology to determine a treatment plan.

Everyday we tell her to keep fighting and we are here for her 1000%.


Wednesday, July 19, 2017

Updates....

7/2:

They do suspect the tumor to be cancerous, will know more after pathology looks at the sections. She had lots of blood loss and multiple transfusions and other blood products given to her. She is on ventilator and in drug induced coma for now. 

We had some encouraging news in today's events. Brain swelling continues to go down, she is responding to our voices and touch. Scans today showed her brain responding well and recovering from the trauma of yesterday. Doctors have decided it will be best to give her a few days of rest and recouping time before proceeding with more surgery. We are taking it a day at a time and small steps. 

We can't wait to see her beautiful smile again!

Thank you all again for all prayers and good thoughts. We feel the love and support from everyone!

7/3:
We have had another good day today. Cyndey got her feeding tube put in and started getting some nutrition into her. She continues to have strong responses to us and is becoming more relaxed. Her EEG electrodes have been removed, brain activity is where they want it and no signs of seizure activity. We are going to keep monitoring her until Wednesday before doing anymore scans or major procedures as long as she continues this trend.

Thank you for the prayers and continued support. I know it must be hard for family and friends back home and far away, who are not here to see her. Know we are very optimistic, and Cydney is a fighter! Didgee (her monkey 🐵), remains in her arms! She has a hold of him at all times 😊
Each day she is getting stronger and ready to overcome her next hurdle. She is brave and she is strong!

7/5:

Another good night. This morning she opened her eyes to look at us and grasped for my hand. She is trying to roll over and sit up in bed. Very fiesty! She will be having a contrast MRI today to see how much of the tumor remains. Hoping all goes well and she will be strong enough for surgery on Friday to remove any remaining tumor.


Prayers are working!

MRI results today showed the tumor is gone!! There is slight damage to the cerebellum that will need to be cleaned up, but doctor does not believe there to be lasting effects. Will know more after she goes in on Friday to clean it up and to close up back of Cydneys head.

Very relieved to hear good news today! Now we can concentrate on getting thru Friday's procedure and talking with the oncology team about further treatment needed.

7/6:
We were told that during Cyndey's surgery and her complications she received 15 units of blood/blood products. We were told this is her entire body capacity of blood!! Today Jared and I went to the local blood drive and donated. The bag in this picture is considered one unit.
For those who wish to find a way to help, donating blood is a great way to help others. While it won't go to Cydney directly, there is a need for someone somewhere.


Look up your local blood drive or nearest Red Cross and donate today!


7/7:
Cydney headed into surgery at 8:30 am AZ time (10:30 CT)
Today we pray for a uneventful procedure, for the doctors to have a steady hand and Cydney to remain strong. For our patience and strength as parents while waiting for her to come out of the OR, and for the recovery beyond. Once again , thank you all who are keeping her in your thoughts and Prayers!

Cydney is out of surgery and doing well! 😃🙌
Hoping to take her off the ventilator tonight. She does wake up and is alert when we talk to her. She amazes me with her strength and her will to fight.

Thank you, thank you for all the prayers and support. Can't say it enough!

7/8:
Cydney is now off the ventilator and breathing on her own. Very groggy, she will open eyes and respond to commands. Weaning her off the meds, and starting feeds again through the feeding tube. Met with her speech therapy, physical therapy and occupational therapy teams as well. Long road ahead, taking it one day at a time, one step at a time.

7/10:
Reading some stories today! After a busy morning of therapies, getting cleaned up and all the different doctors coming in for their daily assessments we are taking time to get some rest.
Her drain has been clamped and her intracranial pressures have been stable and within the range the neurologist would like to see them! 🙌🙌 All her therapist feel she is progressing normally for someone who has been through all she has been through. We are still waiting to talk with oncology about their treatment plan and to confirm the type if tumor she had.
She has not tried to talk yet, that will come in time. We are working on communicating through thumbs up or thumbs down for now. She reached out to Nathan yesterday during his visit, 😢💓, so sweet and heart wrenching.
Keeping positive and celebrating the small improvements each day. Keep on fighting Cydney! You have so many people cheering you on!! 😚😚

7/11:

Busy day today! Lots of therapies for Cydney, got her fitted for a wheelchair and took a walk in the halls. New boots to help hold feet in correct position and help prevent foot drop. We even got her smiling and laughing, that was music to our ears! She has regressed a little on her hand strength. No known reason hoping it will come back soon.

Oncology came by today with preliminary information. Pretty sure it is a medulloblastoma, not 100% on which strain. Taking case to... board tomorrow for more eyes to see and the team to discuss. Before coming back with treatment plan. Gave us the 4 types. Sonic hedgehog (SHH), WYNT, Group 3, and Group 4. Will also need to do spinal tap within next week to see if any cells have traveled to spine. Like to do one 10-14 days post surgery. We are counting from her last surgery. Treatment usually begins within 28 days post surgery, so we are still in that window.

We have also gotten into the Ronald McDonald House. Jared and I are now rotating nights with Cydney. It is nice to have a place to spread out a little and know we are only minutes from the room if needed.

We are thankful for all the support and prayers! Lots of love for our baby girl! Enjoy reading her your cards and words of encouragement




Updates Part 2....






7/12:
Not a whole lot to update with Cyndey today. We are still looking for answers to her regression in grip strength and response to us. We have seen some frustration and emotion from her. We are trying to keep her spirits up with silly jokes and talking to her about daily things.
We brought up Nathan and Lily for a visit and that seemed to lift everyone's spirits. Cyndey was sad to see them go. After taking them for a hike and ice cream, I then spent the evening with them doing normal mom things. Things that are taken for granted sometimes. Things I may not always appreciate doing. It was nice to be out of the hospital, but a piece of my heart was missing.
Continued prayers the doctors can determine what is going on and that this be temporary and she overcome the set backs.

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7/13:
Thank you all our friends and family from around the world. Your generosity that has been pouring in is greatly appreciated! The cards, donations of gift cards, meals, emotional support and helping with logistics of things does not go unnoticed. We have been able to focus our care on Cydneys needs and be here in the hospital to support her.
She is dealing with Posterior Fossa Syndrome. There is no determined amount of time it will last. She is non verbal, can not sit, or ...hold up her body on her own. She is weak, and dealing with pain. Since she can't communicate to us what is hurting it is a guessing game.
We are here for her and doing our best to remain positive and work through this hurdle. Encouraging her and explaining to her what is happening. She can understand what we say and has her sense of humor, laughing at our jokes and rolling her eyes at the bad ones. 😊 One day we will look back on this time and see how far she has come and how hard of a fighter she is.

7/14:
Hope: an inspirational message from the Fire Department located next to the Children's Hospital. This is the view we have from Cydneys room window. An everyday reminder to have Hope in a time of despair.
"It won't be easy, but it will get better" - Stacy Hogg
Each day, each small improvement extends that hope that she will one day be back to the Cyndey we know!
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7/17:
Taking each day in stride and celebrating the small improvements.
Cyndey's External Venticular Drain (EVD) was removed today! This had been in place since July 1, when she went into her initial surgery. It is used to help relieve elevated intracranial pressure when the normal flow of cerebrospinal fluid inside brain is obstructed. Her pressures have been in the goal range now for several days and after numerous MRI scans the doctors feel she is able to drain these fluids on... her own appropriately. The other positive here is it does not appear she will need a shunt.
Now that it is removed, we are one step closer to being transferred from PICU to either a general floor or the rehabilitation unit. Another 24 -48 hours more as she is weaned off the steroids, and we can move forward to continue her treatment.

She is also set to have a Spinal tap this week to determine if the cancer has spread at all. Praying for clear results there! 🙏

7/18:
Our Brave little fighter! Had a rough night Monday night, not much sleep and possible pain or frustration. It is hard to tell which, since she is non verbal right now.
We took her for a walk and that seemed to up her spirits and lead to a pretty good afternoon. Go to "stand" during PT, daddy played Stuffed Animal Jenga, and we got a hair wash.
This evening we are watching some low heart rate and higher blood pressure issues. Dr's are not too concerned at this point, but w...e are keeping a close eye on their trends tonight.
We celebrate each small improvement and encourage her through the struggles. Keep fighting as we move forward in this journey.

7/19:
Lab tests this morning showed elevated level of her Creatinine and BUN level, both affected by kidney function. As kidney function slows down the levels of these rise. The morning was spent getting labs drawn, urine analysis done, ultra sound of the kidney and bladder. The doctors also are concerned about dehydration due to taking off some water due to them changing the concentration of her formula. So they will be increasing her water intake as well as watching her labs throughout the day. One doctor also found a study for one drug they had her on, that lead to kidney injury. Cydney completed all her therapies and was once again exhausted by the end of the day. Hoping for a restful night.