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




1 comment: