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Sunday, November 26, 2017

Back to school for some half days!

                                  North Park Elementary

Colton was able to return to school for a few half days! He was a little nervous at first. He didn't know what his classmates would think about his hair or his looks that have changed because of the meds he is on. But as soon as he walked into his classroom the kids cheered and were so excited to see him back! Colton got right back into the swing of things.  He looked forward to going to school from then on. 
This is Mrs. Collins. She was Coltons 2nd grade teacher and has been an amazing support along with many others at the school. His current teacher, Mrs. Banister, somehow got away without having her picture taken. We will have to get one and share it with you all because she has also been amazing!
This is Mrs. Williams, the new principal at NPE. Colton was instantly drawn to her when he met her at the schools 50th anniversary party last year. Mrs. Williams has such a bright personality and always brings a smile to Coltons face!
Colton cannot yet participate in PE or recess so he spends that time in the office building with LEGOS. He has a crazy love of LEGOS. 

 

Thursday, November 16, 2017

ROAD TRIP - Boston here we come





BOSTON
 


Monday, November 13th, we went to Boston for Colton's consultation with his team. We met with Dr. Shannon McDonald (oncologist). She is a great lady. We also met his nurse, a child life specialist, a clinical social worker and the radiologist. They were all amazing and kind and made us feel right at home. 
                    

Colton required another scan with contrast - hence another IV (poor kid). He does not like getting them, but he always watches the entire process. He is crazy. So, while Colton was having a tour of the facility, his dad and I talked with the doctor and went over all of the possible side effects of the treatment. and also possible complications. These are not fun meetings. We feel very positive, however, that all will be fine and it should go smoothly. 

Colton had his mask made for treatment. I thought this would be an easy process, but it was not. A hard piece of mesh plastic is placed in warm water to soften it and then it was placed over Colton's face. The techs mold it to the face and neck also snapping it to a headboard to hold it securely. It then needs to sit in place for about 5 minutes to harden. A scan is then taken of his head. It is very important that Colton's head be in the exact same position for each treatment.

Then, it was done. 
On the way home we stopped for pizza and Waze took us on a scenic tour through Boston before finally getting us to the freeway. That was good for some laughs. What an adventure and a long day. But, as always, Colton was a trooper. 

 He gets to go to school for a couple 1/2 days this week. More on that later. 





Tuesday, November 14, 2017

Colton's Mom

This post is about Colton's mom.

Colton's mom is my big sister. I have always looked up to her in so many ways. I cannot begin to imagine how it felt the day she heard the news that Colton had a brain tumor. Her husband was in Japan and she was alone with Colton. She sat in a waiting room waiting for him to complete his MRI. She said it was like out of an episode of ER. Three white coats come around the corner, she looks up and sees them coming and knows the news is grim. They point to her and say "we need to talk." I am sure her heart was in her throat at this point. It is a vision she will never get out of her head, I can assure you of that.

My sister has always been a kind, loving and caring person. I remember for her 10th birthday she decided against a birthday party and gifts and wanted to feed the homeless people in Seattle. She was my hero. I loved standing by her side and meeting all the people that were so proud of her, especially the mayor of the city.

When my mom was diagnosed with brain cancer 3 1/2 years ago, Heidi did not even hesitate. She spoke with her daughter and husband and they picked up and moved to Seattle to help my dad. She was by my mother's side for the entire 6 months she battled cancer until the moment my mother took her last breath. She was truly amazing. It was not easy, she worked her tail off making sure my mom was comfortable and helping my dad with everything. Then, she moved back to New York and got back into caring for her family.

Colton was born 10 years after Madison. I can remember when my sister told me she was pregnant. I could not believe it. She had a 10 year old and 15 year old. She was done with the baby stuff, but God had other plans. Colton has always been such a joy in Heidi's life. Don't get me wrong, he was difficult, but as always, Heidi dealt with it in a loving, caring way. She figured out how to work with some of his quirks and he has grown into such a strong, polite and courageous boy. He has an old soul, as they say.

Heidi has been so strong for Colton during all of this. She is understanding and loving and supportive and forgiving, and so many other adjectives. She is treading through the depths of medical lingo and doctor's appointments and trying so hard to do what is in Colton's best interest. She explains things to him and tries hard to bring things to his level of understanding. I think there were times that she did not process what was going on, all she was focused on was Colton and making sure he was comfortable. When she was able to get away, it would hit her so hard. As her sister, my heart broke for her.

She has been so humbled by everyone's kindness and generosity. She is brought to tears easily these days. Kind words, prayers, donations, facebook prayers, all of them are so helpful to her. She is the type of person that would give you the coat off her back but never expects anyone to do the same.

Saturday, November 11, 2017

MY BRAIN - Before surgery

My Brain Pictures Before Surgery




Some normalcy






Colton has had a great week at home. He was able to return to some normalcy this week. His Karate Master provided Colton with a few private lessons. He was able to go through some of his forms as well as do some stretching. He is not allowed to spar, obviously, but just getting back to Karate was a breath of fresh air for him. 

Colton is going from doctor to doctor these days in preparation for his Proton Beam Radiation therapy. He has been to the eye doctor and the endocrinologist as well as to his neurosurgeon. He is going to the oncologist next week. That is a long road trip to Boston, MA. Colton is not a fan of road trips. He is also trying to understand why he has to do all of this. He figures since his head does not hurt anymore, he is good to go. All this fuss is driving him nuts. His parents are doing a great job explaining everything to him, but the eyes of an 8 year old have a hard time understanding all that is being presented to him. 

Saturday, November 4, 2017

Visit with Dr. Tobias!



On Thursday Colton got his stitches out! This was a very long day. His appointment was at 3:45 but we knew going in that it would probably run late. Dr. Tobias had surgery and those always run long. So at about 5:30 we saw the Dr! While we waited Colton took a walk with his dad and gazed out the window.





I can only imagine what is going on in his mind.


We made jokes and laughed while we waited.
During the appointment we discussed how Colton has been doing and his treatment in Boston. Those plans are moving forward!
On Friday we spoke with our Boston point of contact person, Brittany. She scheduled an appointment for Colton to see the oncologist, Dr. McDonald.
We will keep you posted about that.
Thank you for your continued support and prayers! We love you all💕
Pics to come as I try to figure out this blog stuff.....



Friday, November 3, 2017

Update 12 - Back at Home!

Colton was released from the hospital!


School pictures came back for sweet Colton and we wanted to share with a quick update! Purple is his favorite color. So he chose these shirts for his pic. 



Today Colton had a tutoring session and it went very well. He misses school so I think even though he was nervous to have a tutor he enjoyed it. 


We will be going to see Dr. Tobias, Colton’s surgeon. Colton will be having his post op exam and stitches removed. Everyday brings us one day closer to our trip to Boston for proton radiation. We are just waiting on our Boston team to give us the go ahead.


Update 11

October 25, 2017

Yesterday Colton had some visitors from school! His teacher came and delivered boxes of get well letters and gifts that the students have been dropping off at her classroom for Colton. It was so touching to see how much his fellow students and classmates care. The notes were so sweet and the children so thoughtful. 
This morning, Colton is all cleaned up and in his comfy robe. He took about 4 laps around his unit, getting that exercise in! 

The plans for Boston are in the works. Colton really misses school and is not so keen on going but we are trying to make it a smooth transition for him. He will receive educational services while there so that is a bonus! Colton really likes school so having daily instruction will be good for him.




Colton is opening up all these letters and gifts from kids and teachers at school! He loves hearing from all his friends and it really lifts his spirits! 

Update 10

October 24, 2017


Colton had a lunchable for breakfast today. We need to keep the sodium coming! His “lego” hat will be removed today along with his brain drain. He will have an MRI to make sure everything looks good and hopefully he will be moved out of the picu tomorrow or Thurs!


Update 9

October 23, 2017

Colton's karate masters stopped by today!

Update 8

October 22, 2017


Colton had a pancake breakfast this morning. They removed his Foley catheter last night, that was an experience he won’t soon forget. His sodium levels are being monitored closely for signs of DI or SIADH (you can look those up if interested). He has only needed one bonus of saline so far. They have not clamped his EVD (brain drain) but he is not draining very much from it, which is another good sign. They have kept his arterial line in for the blood draws so he does not have to get poked all the time. He will remain in the ICU until these items are removed. Hopefully they will work towards getting him out of bed today as he is stiff and sore. I think that is it. It is a good day


Back to school for some half days!

                                  North Park Elementary Colton was able to return to school for a few half days! He was a little nervou...