Tuesday, November 21, 2017

Being Thankful

As Thanksgiving approaches I look to my family and find many reasons to be Thankful. Even as these last several months have sent us on an emotional rollercoaster with so many twists, turns, peaks and descents, there is still plenty to be Thankful for.

*For family. Not only those living in this house, but those who have reached out in support as we have traveled the road of the scariest and most stressful time of our lives.

*For the support that has poured in through providing meals, cards, letters, and gift; being available to help at the house with our daily life and juggling of all the kids needs. In an effort to keep life normal and as uninterrupted as possible.

*For the health of Nathan and Lily and the continual improvement of Cyndey.  While it seems some days we have not made progress or that progress is slow, to look back to pictures and videos of just four short months ago to see how far she has come is a blessing.

* For being home as a family. Happy to be able to celebrate the holidays in the comfort of our home all together. 

*For each other as we learn to live our new normal and to have each others backs on the hardest of days.

Seeing my children play together, fight and pester one another brings Joy. I am Thankful they have this time together. 

Wish everyone a Happy Thanksgiving!

Thursday, November 16, 2017

First round done

Cydney has completed her first round of Chemo.  She handled it beautifully and didn't let it get her down.  She now gets three weeks off to focus on rehabilitation therapies and get even stronger. 

She has improved so much in her ability to walk with us giving her only the slightest amount of support for balance under her arms.  She is holding all her weight on her own and controls the pace. Her strides have become more even and there is less crossing over with her feet.  She is still very cautious and scared to use the walker, she likes the feel of us behind her. One of our main goals in therapy is to gain the confidence to use the walker on her own.  Giving her the indepence and freedom to go where she would like on her own.

Another milestone she is getting closer to is using the toilet consistently. She is able to let us know when she needs to use the restroom, and then we are able help her get there. 

Her speech improves more and more each day. Her tone is still quiet, and some letter sounds sound the same. It may take me a few rounds for me to catch her whole thought, but I eventually catch on to what she is saying.

A favorite activity in therapy is swinging.

She is also in the process of getting a homebound teacher to do schooling with her at home. She is excited to start school again.  Hopefully a teacher will be lined up in the next few weeks. 

We are constantly amazed at how well she handles all of this. Her overall attitude remains positive, until visitors have to leave. She does not like saying goodbye. 

Thank you for all the continued prayers and well wishes. I let her know often she has many supporters out there and all are wishing her the best. 

Tuesday, November 7, 2017

Chemotherapy has begun

Cydney has had her first two doses of Chemo. Last week she went in for the first dose. We showed up to the Oncology Clinic around 9am. Cydney was taken into a large room with several chairs lining the walls filled with other children waiting to begin their Chemo treatments. In this room, her port is accessed and blood work is taken for the necessary labs. Cydney does not like the port access process. Although she is numbed by a cream, the idea of a poke is still traumatic for her. We were also introduced to the Social Worker, Child Life Specialist, Education Specialist and several nurses on the Oncology team. Everyone was welcoming and ready to make our stay as comfortable as possible. After about an hour of getting settled in and having blood drawn we waited for her labs to come back and clear her Chemo treatments that day. This will be the routine each time. 

November 1, 2017-First day of Chemo. Waiting on nurse to come access port

Once her labs came back we were taken upstairs to her hospital room and started on fluids, nausea meds and also gave her some formula. The Chemo infusion was to last 6 hours this time and she is admitted overnight for the first dose of Cycle A. After the Chemo is given she receives more fluids overnight and is able to go home 12 hours after those begin. The quick overnight stay is not too bad and gives her a chance to get some nice peaceful rest. Something that is not to come by at home with two younger siblings.

Cydney was surprised to have Grammy come in for a visit. She enjoyed her time with Grammy through the weekend and was very sad to see her go. Cydney loves to have visitors and has had a steady stream of them since coming home from the hospital. It is hard to say good-bye each time, but know they will be back soon. 

Having the extra help at home has been very helpful. Cydney's needs require someone to be close by at all times. To ensure she does not get sick and aspirate, keeping up with her feeds and medications throughout the day as well as getting her to and from the bathroom as she needs. She has been able to alert us when she needs to go and will walk, with assistance, to and from. She has also started to dress and undress herself again. Regaining that independence is a huge step for her. Her verbal communication is getting better each day as well. There are times she is telling us something she wants or needs and it is hard to understand, which causes a lot of frustration for her. Her emotions also go extreme from one minute to the next. From laughing to crying in a matter of minutes. At the clinic one day she was talking with one nurse about Didgee and started to make him dance, when the nurse mentioned she liked monkeys to Cydney became very protective of him and held him close. Repeating that Didgee was "all mine", and she is never letting him go, no one else can have him. This ended in her crying for several minutes, repeating that no one can take him.

Beads of Courage strands
The day after she was discharged we went back into the clinic for a Neulasta injection. This is to help her fight infection as her immune system is now compromised. We have to be cautious who she is around and to keep her away from crowds as much as possible. While we don't want to seclude her and keep her in the house all the time, we must be careful to not expose her to much.

Getting back to therapy after 4 days off was hard for her to get back the desire to put in some hard work. After easing into the session with a game of Don't Break the Ice, she warmed up and was motivated to do some walking and eventually the swing. The swing has become an incentive for her to work hard and do what is asked of her in therapy.

The second dose of Chemo was today, November 7. Again we go into the clinic for labs and await the results before receiving chemo. Today's Chemo infusion was only about 15 minutes long, but with the wait for labs and pharmacy to send up the drug we were there a total of 3 1/2 hours. Cydney slept most of the time we were there. She was not happy to have to be accessed, part because she is scared and part because they woke her up to access the port.

Kisses for brother! 
We return next week for one more dose of Chemo for this round and will then have a three week break before doing another Cycle.

Thank you all for the continued prayers, messages, cards and letters. Knowing she has so many thinking of her and encouraging her is heartwarming.

Saturday, October 28, 2017

4 Months gone by!

It has been 4 months since we first noticed signs something was off with Cydney. What started with neck pain quickly developed into more concerning symptoms as she began to walk with an unbalanced and staggered motion to being unable to balance herself.

June 19- At doctors office for Nathan and Lily's well checks. Also asked about Cydney's complaint of neck pain for several days and her changed in gait.

June 21- Went in for blood work to rule out infections or other unseen issues.

June 26- Going in for X-Rays to check alignment and possible scoliosis. 

June 27- Taking a video of Cydney to show her difficulty with walking as well as not being able to move head or neck around.

June 29 8am- Went into see pediatric orthopedist, to get his opinion on her X-rays.

June 29 6pm- Being admitted to Tucson Medical Center to receive an MRI in the morning.

June 30- Went in for an MRI at 8am. We waited until close to 11am for her to be done and to see her again in the recovery area.

 Close to 1pm, back in her hospital room awaiting the results of the MRI.

June 30 1:15pm- ER doctor, our pediatrician and a hospital case manager were waiting for us in a conference room across the hall. We were then told about the 5 cm tumor at the base of Cydney's brain. Decisions had to be made on her immediate care, we opted to be transferred to Phoenix Children's Hospital as soon as possible. Soon after phone calls to family and friends began as we quickly began planning for the next steps in Cydney's care. By 4:30pm Cyndey and I were being loaded into a helicopter and on our way to Phoenix.

July 1 8am- Cydney is taken back for a pre op MRI and surgery would immediately follow. After the longest and very stressful 13 hours, Cydney was brought back to PICU from surgery and we were able to see her again.

Morning of Surgery- July 1, 2017

Night after surgery- July 1, 2107 9:30pm
These past 4 months have been stressful and emotional. We have seen an incredible amount of fight in Cydney and her determination is unwavering. We did not know how she would wake up from the surgery. We were told by our neurosurgeon about the possibility of Cydney not being able to talk right away and could be mute for a few weeks or months. We were told motor function could be slow at first but should come back with Physical Therapy. The extent of her loss of function was a surprise to many. For weeks doctors were unsure how to proceed or what to expect in her recovery. Posterior Fossa Syndrome effects each child differently and the rate at which they come back is on a large spectrum. Some recover quickly within a few weeks others it can take years. The range of improvement also varies significantly.

Going thorough the therapies has been a lot of work for her. There have been many days she was in pain or tired and did not want to do the work. She always found strength to do some work each session, getting stronger and stronger by the day.

Day one of Therapy:
July 11, 2017

First time in wheelchair and out of PICU room- July 11, 2017

First time on Tilt Table- July 18, 2017

First attempt at coloring during Physical Therapy- July 25, 2017

Getting fitted for hand braces- July 27, 2017

Getting an EEG after Seizure-July 30, 2017

Working through Occupational Therapy and Physical Therapy- August 2, 2017

Fitted for braces to help support legs as she stands.

Third EEG-August 20, 2017

August 28, 2017 Therapy Session

Speech Therapy- September 1, 2017

There have been set backs and days where after radiation she was too tired to really participate in much therapy. The last month she has show tremendous progress not only in her physical endurance, but her speech is coming back and movements are becoming more coordinated. 

Saying 'Mommy'- October 10, 2017

Sibling Therapy is the best kind of therapy!!

First walk in gait trainer- September 14, 2017

Final Radiation Treatment- September 18, 2017

First day on bike- September 29, 2017

Physical Therapy- October 25, 2017

Painting during Therapy Session-October 27, 2017

The joys of being home, include being able to all be together under one roof doing normal family activites and enjoying quality time. Sitting outside by the pool, having the ability to easily wheel Cydney down to the Ramada to join us as we cook out and watch football games or listen to music is a favorite of hers.

Taking a nap on the couch while the younger siblings play and make ruckus. 

Night out at the Halloween Howl!

We were able to have her Chemo treatments transferred down to Tucson. She will be seen at Banner University Medical Center. Having the chemotherapy done in Tucson will help in being able to care for her as well as Nathan and Lily. Her first treatment is November 1st.  The next phase in her battle will be a rough one. Being the fighter she is, I am sure she will face this phase just as she has everything else. With a positive attitude and sheer determination. 

Wednesday, October 18, 2017

It is good to be home!

The first week home from the hospital has been hectic and exhausting. 

Care for Cyndey is around the clock. With feeds every two hours, diaper changes, administering medications on time and being aware of when she is about to get sick and having the bucket and suction ready.  Keeping her entertained with books, movies, games, toys or going outside helps keep her from getting bored.  Nathan and Lily also do their best to entertain her with their silly antics. 

The days are filled with 2-3 hours of therapy sessions, daily errands or doctors appointments.  The days seem to go by so fast, by the end of the day everyone is worn out. 

Soaking up the warm sun! It feels good to be home.

Checking out her bedroom

Watcing football and enjoying being outside.

Friday we had dealt with more throwing up than we had on a while. Thinking she was having reaction to her flu shot we kept a close eye on her.  Saturday morning, Cyndey woke up with a 99.5 temperature and acting pretty lethargic. Per her discharge papers we were to take her on for a fever of 100.4.  Saturday around 3pm the fever reached 100.5. Off to the ER we went. 

We were at Tucson Medical Center from 4pm to 1am before being transported to Phoenix. Along with a urine culture and blood work done the doctor felt an MRI would be beneficial to ensure shunt was working properly.  She saw what she called a herniation on the right side and felt Cydney would be better if seen by more specialized doctors.  Her scans were sent to a neurosurgeon at Phoenix Children's who agreed Cydney would be best served with a pediatric neurosurgeon.  We then sat and waited for ambulance transport to be available.  

Once to Phoenix we sat in the ER for  another several hours while doctors came in to examine her. 

A neurosurgeon came in to reset the shunt, something that has to be done after any MRI is done. He set the setting to 1.0, previous setting was .5, to slow down the amount of fluid being drained.  He felt there was too much drainage. 

All day Sunday she was very alert, her eyes were open wide and symmetric. She was responsive to our questions and commands. She was kept on an antibiotic and fluids as she was having trouble keeping her feeds down and she remained to have a low grade fever.   

Monday morning the doctors confirmed A UTI. Her Neurosurgeon came by to discuss the scans and did not see anything of concern. We told them We wanted to go home, seeing as the scans looked good and we had antibiotics for her.  Knowing we would be back Thursday for post radiation scans and pre chemo testing, having her back home for a couple days would be nice.  All doctors agreed and discharge paperwork was started.  After a kidney ultrasound as a follow up to one she had a month ago, and one more IV dose of her antibiotic we were discharged and on the road home by 430pm.  

Being home all together is great! Back to a busy schedule of daily therapies, doctors appointments, and tending to her daily needs.  

When Cydney clealry asks for a Hatchimal, she gets at Hatchimal 😃. 

Working during Occupational Therapy

Happy Girl! 
Thank you all for the messages and texts of concern as we figured out what was going on with Cyndey.