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!

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

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!

 

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.

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.

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! 

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.

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.

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.

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%.

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.

 

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! ❤❤

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.

Surgery Day

Not much sleep was had last night. Reliving the past 24 hours and hoping that I was in a nightmare.
This morning we prepared Cydney for a Pre-Op MRI. We walked down with her to give hugs and kisses before the anesthesiologist gave her a sedative and wheeled her back. I could tell Cydney was nervous. We had decided not to tell Cydney about surgery, as to not stress her out. Reminding her to brave and strong!

This was the longest day, the MRI began at 7:30am and surgery was said to begin at 9am. We were told we would be updated each hour with progress. We began pacing the hospital from one end to the other. Come 10:00:05 there was no phone call, and the anxiety set in. I kept telling myself "no news is good news"! The same thing I tell myself with Jared is deployed and I haven't talked to him in a few days or haven't heard from him when I think I should have. Soon the phone rang and the update went something like this. "She is doing well, the doctors have now gotten into the brain area. Will call back in an hour with another update." So back to pacing we went. During this time we had some friends show up that we had been stationed in Misawa Japan with. This was a welcome distraction to help pass the time. Updates came each hour, sounding much the same. "She is doing well, tumor is tougher than previously thought. Will call back in an hour with another update". Lots of walking the hospital end to end.

Jared took time to go get his parents at the airport as they got on a flight as soon as they could. Once the arrived at the hospital we walked them up to Cydney's room and waited for more updates. Hour after hour the updates came. Around 5pm the update was, "Doctors are almost done, should be ready to close up soon." Maybe 10 minutes later a call came "there had been a lot of bleeding from the brain, the doctor would like to talk with you, can you meet us on the 4th floor?" Once again, the knot in the stomach came back, and we jumped on the elevator to the 4th floor. Were going to have to discuss end of life decisions? I was scared! We sat in a waiting area for a minute or so, before being escorted to a consultation room. There we waited for what seemed like forever! Waiting for the doctor to come in felt as if time stood still. Once she came in she began to tell us that you brain was doing fine and then became "angry" there was a lot of bleeding from the left side and they needed to stop with the tumor resection and find the source of the bleeding. We signed a consent to go forward with the procedure and were sent on our way to wait some more.

Updates did not come as often now and time went slower than ever. Around 8pm we were told she was out of surgery, they had cut a bone flap on her left side to access the bleeding and replaced it with titanium plates and screws. She would be on a ventilator and swollen. The image I had in my mind of her was not pretty. I felt bad or her, for her to have to go through all of this and to be in pain. We returned to the PICU and learned they had moved her to a room across the hall, due to the number of machines she would now need. They began rolling in the respiratory machines, an IV tower, heart monitor, EEG machine. It took the medical team over an hour to get Cydney settled and all hooked up to her machines. During this time we talked with the neurologist about what had happened. She believed that a device they use to keep the head stable in surgery had caused a fracture in the skull at the sight the pin is placed. That in turn caused the bleeding on her left side of the brain. The left side of her skull was removed in order to get to the bleeding sight. Once the bleeding was controlled they decided to stop and give Cydney time to recover.

After several minutes the anesthesiologist came to talk to us and in more detail of what happened told us that Cydney had required 14 units of blood in the OR. That is her entire blood capacity! She would require one more over night as well. We were told she remained stable during the entire time and everyone worked very hard to keep her here. It took a moment for all that to sink in.

We walked back to the room and saw our baby girl all swollen and hooked up to the multiple machines. I held on to her hand, gave it a kiss and stood there staring at her. She did not look like herself, eyes swollen shut as if she had been in a boxing match. Arms and legs swollen, a large bruise on her right ankle from an IV, and looked so small in that moment. My heart broke for her and I would have traded her places in a heartbeat.

That night very little sleep was had, with all the beeping of machines and concern of how she was doing it was hard to settle and fall asleep. The nurse that night stood watch all night, keeping fluids, meds and steroids going. She was very attentive and caring towards Cydney.

There is no easy way to say this.....

6/30: Cydney woke up hungry. Due to her needing sedation for the MRI, she had not been allowed food past midnight. The MRI was scheduled for 8am. Thankfully Jared was taken off the flying schedule the night before and he was able to come sit with me while we waited for Cydney to be done with the MRI. We were told it would take about 3 hours.

After the MRI Cydney was sent to a recovery area as she came off the anesthesia. She was not happy and was confused to what was happening. She was offered and popsicle and took a few bites before saying she was done. We were taken back to her room to await results. While waiting she began having headaches. It was partly coming off the anesthesia, part hunger and now we know part due to the Tumor. After about an hour the nurse approved her to have Jell-o. She also gave her some medicine to help ease the pain. This made her happy and she had some red Jell-o.

About 30 minutes later I was sitting on the other side of the room when she sat up and got sick. I freaked for half a second as I saw a bunch of red stuff coming up. Momentarily forgetting about the red Jell-o.  While getting her cleaned up a Case Manager came in the room to introduce herself. There was a feeling of dread, why did we need a Case Manager? After she left and we continued to clean Cydney up another doctor walked in followed by our Pediatrician! Now things seemed very serious. The first doctor told us he would like to discuss the MRI results across the hall and he would bring in a nurse to watch the kids.

Once Cydney was cleaned up, Jared and I walked across the hall in silence and holding hands. Entering the room with a table full of doctors and Case Managers with red eyes was gut wrenching. As we sat down and I made eye contact with the doctor he began. "There is no easy way to say this...." he continued "there is a fairly large tumor on her brain". My heart dropped and stomach tightened as the tears started to pour out of my eyes. I turned to Jared and held him as hard as I could. Taking slow deep breaths and a few moments to cry and process what was just said I looked back up to the doctor through the tears. He asked if we would like to see the image. We both agreed. As he turned the computer around the image shown was unbelievable. A 5cm tumor sitting in the back of Cydney's brain. Wow! How is it possible that is in my child's cranium?

Discussion turned to our options for the next step. We where informed that Phoenix Children's has several neurosurgeons while Tucson has one. The likely hood of getting seen sooner was to go to Phoenix. Immediately we said we would like to be sent to Phoenix. The Case Manager began asking us if we needed help finding care for the younger children, that leaving them with someone in Tucson could be arranged she could help arrange talking to Jared's work to explain the situation. We thanked them and said we would get it all straightened out and to just get the necessary paperwork done to transfer Cydney to Phoenix.  I signed the release form and they all left the room to give us a minute.

We began furiously calling our parents and other family members. Taking a moment between each to gather our emotions and dial the phone again. Jared made calls to friends in Phoenix to arrange care for Nathan and Lily. After some time the doctors came back in and told us Cydney would be transported by helicopter, it was not clear if I could go with her yet.

Now we had to return to the room and tell Cydney what was going on. How! How do you tell a 7 year old they have a tumor in their brain? We had the nurse take Nathan out in the hall for a walk down to the play area. Lily was sleeping in the room.  Sitting on the bed we talked with Cydney about the MRI results and what they showed. We told her she would be flying on a helicopter to another hospital. Within an hour the Life Flight team arrived and transferred Cydney to the gurney for the helicopter. She gave Daddy a big kiss and we were off to the roof.

Once in the helicopter Cydney was tended to by the nurses while I stared out the window at the vast desert all around us. Within 45 minutes we were landing at Phoenix Children's and being escorted to her room. I entered a room with probably 20 doctors, nurses, social workers, Child Life Specialists and other medical staff all in line to talk with me about who they were and what was going to happen next. It was a whirlwind of information! As Cydney was getting prepped she was talking with the nurses and charming them as she does so easily. I was walked to a consult room by a doctor who showed me the tumor again and said Surgery was scheduled for early the next morning. She explained to me the two types of possible tumors it could be. She stated that the tumor was 5cm and could have possibly been there for years. She stated that the sections would be sent off to Pathology and results typically took two weeks to be returned.

I returned to the room with Cydney and had missed a call from Jared. I called him back to fill him in on the plan and what information I remembered at this time. He was driving up with the little ones. It would be a few hours until he was up to the hospital. He went to drop off Nathan and Lily with the Sullivans. I sat with Cydney and watched a movie with her until her dinner arrived. I then began texting some people to inform them of what has transpired over the last 24 hours.

This was a day that would not seem to end and one I wish we could send back and have a redo.

It was time to rally the troops and find courage in myself to help my baby girl fight this! Time to lean on Faith that she would be taken care of and watched over.

MRI of the 5cm tumor pushing against the brain stem and pushing cerebellum up.

Back to Blogging.... Cydney's Fighting Spirit.

I am coming back to this blog as a way to keep the updates on Cydney's Fight in one place for all friends and family to read.

A rundown to how we got to where we are today.

6/19: Cydney had been complaining on neck pain and occasional headaches for a few days. I had also noticed her walk seemed off. We attributed the pain to her sleeping awkward and treated with over the counter medication, ice and heat. The walk we passed off and some growth spurt issues and that she would soon be back to normal. On this morning we were at the doctors office for Nathan and Lily's well checks. At the end of their appointment I brought up to the pediatrician, Dr. Martin, the pain Cydney had been having and the change I had seen in her gait. The doctor felt around on her neck and observed Cydney walk down the hall. Dr. Martin advised us to watch her for a couple more days and if no improvement to come back in.

6/21: Cydney was still saying it hurt and walking with her arms drawn up at the elbows, could not walk a straight line and seemed off balance. We ran some errands this morning and she could not walk through the store without being in pain, so we decided to go ahead and go home. I called the doctor at 1pm and got her an appointment for 2pm.

We all went along and the doctor once again felt on her neck, talked to her about the pain level and observed her walking. She noted the gait was widebased and could see her balance was off. She put in an order for blood work, to check for inflammation markers and sent us to a local lab to have the blood work drawn. On our way to the lab Cydney asked me why they needed to test her blood. I told her, "blood is tested because sometimes it can tell us what is going on inside your body that we can see from the outside" She then responded "so they can check for Cancer?" I was taken back by this comment, never did we bring this up as a concern or anything we thought it could be. Once I got my composure back I told her that yes they can check blood for Cancers, but I don't think that is what they are looking for.

Dr. Martin said she would call me as soon as the results were sent back to her.

6/22: Dr. Martin called around 10:30 am and said the blood tests did not show any inflammation markers or anything that would be concerning. She suggested the next step to be getting an x-ray of the neck and upper back. Possible scoliosis or other alignment issue. She was able to get us scheduled for one the following Monday.

6/26: Went in to hospital for X-rays. Took about two hours for the xrays to be completed. We would wait for a call from Dr. Martin with results. That evening around 6pm she called and said there was a slightly exaggerated curve in the C-spine. It could mean several things, most likely her neck was just extended too much. She wanted to refer us to a Pediatric Orthopedic Doctor for his assessment. That appointment was scheduled for 6/30. The next few days were spent managing her pain the best we could as ibuprofen was not bringing relief for any real length of time. We also kept tabs on any changes we noticed. Some of which being, Cydney could not balance on one leg, or when eyes were closed and hands to her side. This set in worry that is was more than a simple muscle strain or alignment issue. We began thinking neurological.

6/29: Went in to Orthopedic's office and I could see on their faces as soon as they saw Cydney walking they knew something was not right. After some tests on balance, strength and him reviewing the xrays taken he left the room, stating he would be right back. Once he returned he told me he had been consulting with Dr. Martin and they were both in agreement that more images were needed and an MRI would be the best way to do this. He said that Dr. Martin would be putting in that order and would contact me with a schedule date.

Around 5:30pm that evening Dr. Martin called, told me we have two options to get and MRI done. 1. Go to ER tonight/early tomorrow morning and she would call them to let them know we would be coming in. 2. Put in the referral and wait 3-5 days for insurance approval. Her advice was to take Cydney into the ER. I called Jared to tell him what she said and he was on his way home. Once he got there, Cydney and I headed to the ER.

Once at the ER, we went over the past few days with that doctor and more blood was drawn to compare to the results from earlier. This doctor also observed Cydney walk and do balance tests. After about an hour, we were told that Cydney would need to be sedated for the MRI. She would be admitted overnight and the MRI would be the next morning. I called Jared to let him know we would be staying and to have him bring up a bag of clothes and Didgee so Cydney would be able to sleep. We got situated in a room and attempted to get some sleep.