Posts tagged ‘#Sebby’

December 22, 2013

Day +214

Recently my brother-in-law returned a piece of art he had purchased at a fund raiser for Sebby. I made the piece and he wants it back. He is living in a fifth wheel and has no room. Soon he will buy another house and have room for the piece. In the meantime, I have it in my kitchen. Does that qualify as regifting? I don’t know. I am enjoying my piece for the duration.

A new friend named Paul Deraval recently contacted me through the blog. He wanted to gift his signed Tony Hawk skateboard to someone and decided upon gifting it to Sebby. When it arrived, I realized it was not only beautiful, but in like new condition. Sebby loved it. He also loved the encouraging, hand-written letter Paul attached to the board. Regifting is getting pretty cool around here.

Yesterday I witnessed a beautiful form of regifting. My daughter Chantel and I attended a 5K run to support a young man named Nick Floyd who is fighting Osteosarcoma. Nick’s mother invited us along with several other families with young men battling various forms of cancer. A huge community of support turned out for the event. There were around 450 runners. Brothers ran on behalf of their brother in the hospital. Nick’s brother came in first. They ran with their hearts wide open. A 1K followed for anyone who wanted to walk or take children for a little run. Towards the end of it, the DJ invited everyone to show support to a young man finishing the run. His name is Owen and is an inspirational preteen. He has had his hip, femur and (I believe) shin replaced due to Osteosarcoma. As he returned from his first time to participate since recovery, we lined the walkway, applauding. It was one of the most incredible moments I have ever witnessed. I was not the only one crying from the beauty of this young warrior’s determination. I will never forget the look of resolve on his face. I feel honored to have been there. I was definitely gifted by Owen.

After the run and raffle, Nick’s mother, Tracy asked us to stay close. She surprised us by having us join her in the staging area. Nick was not able to be there, nor was Sebby or another young man, Mario. So we were joined on stage by Mario’s parents and a young man named Jeremy who is also a warrior battling Osteosarcoma. His grace and dignity was impressive the entire day. Tracy introduced us to “Nick’s Army,” the many friends, neighbors and colleagues that were gathered in support of Nick. It was impressive. Nick was with us via Skype and an ipad. Tracy shared a story about Jeremy gifting his own fund raising event money to Nick. She followed by gifting each family on stage with the proceeds from Nick’s fund raiser. So Jeremy was regifted. The most socially acceptable form of regifting ever! The Floyd family still needs to continue fund raising to keep up with Nick’s medical needs. But for this fund raiser, they decided to share with other families who are on similar journeys. I am humbled by their generosity and kindness of spirit.

After the event, we wanted to share their love with Sebby, who was at home due to a broken hip. He had recently fallen due to severe leg cramping and had to have a few pins put in. So his movement is restricted for six weeks minimum. His mother was moved to tears at the kindness of Nick’s Army and parents. Sebby’s comment? “That’s tight.” And it is.

I am attaching two links. One is Tracy’s gifting. The other is a nice recap of the entire event.

http://www.youtube.com/watch?v=D8o1PfkwDDI

https://www.facebook.com/photo.php?v=564522293622124&set=vb.393000550774300&type=2&theater

Happy Holidays from our family to each and every one of you!

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November 2, 2013

Day +156

It is hard to believe, but it has been over five months since Sebby’s BMT. He has enjoyed quite a bit of home life with a few short hospital stays. Mostly, he is battling the CMV virus. His doctors have been switching meds around in an effort to curtail it. Today he underwent another lung biopsy as well as once again enduring a bone marrow biopsy. He hates the lung biopsy more, I think. It will be days of dealing with a drain tube, which is very uncomfortable. But the doctors need to know what type of nodule is in his lung in order to treat it effectively. He initially went in the hospital this week to get infusions to fight the CMV. Preliminary tests show the levels to be reducing. We should have more definite results on Monday. While there, a CT scan showed Sebby to have a lung nodule and pneumonia in one lung. So here we are. These are pretty typical side effects of a bone marrow transplant. They have to be taken seriously and addressed immediately in order to prevent the situation from deteriorating. PCH doctors are good about getting the right diagnosis and the right medicine for the situation. Hopefully, he will be on the appropriate meds before I finish this blog page. Our warrior is still fighting!

Recently, Sebby was able to stand on his skateboard and coast a bit. His friend, Danny Green was hanging out with him and they both thought it would be a good place to start. I think so too!

 

August 6, 2013

Day 75: Home!

Today was full of joy. Sebby was able to come home! After glancing in each room to see the bed changes, he allowed himself to free fall face-first onto his new Sleep America bed. Flipping over to lay flat and test how the new mattress will work with his lumbar situation, he continued in that position while announcing that he wanted to go eat somewhere (translation: the new bed is going to be great for him!) His auntie Chantel reserved a private room at a nearby restaurant and made him wear a mask. It was the finale to an exit ceremony that took most of the day. See the link on my facebook for the touching goodbye from the hospital staff. WordPress is not working with my .mov file today. . .

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Home health care is coming at 6:00 tonight and his mother is busy lining up around the clock medications and IVs. The rest of us are doing whatever needs to be done. He goes back to the transplant clinic tomorrow and continues with three visits per week. Many of us, and especially Sebby, have been working very hard to get to this point. Saturday the house was cleaned above and beyond hospital standards. I would like to give a very special thank you to Mary and Dara Petruske for their extreme amount of help sterilizing every single item Sebastian owns. You ladies are the best! I now see the value of minimalism décor.

There is much work and caution ahead. Small incidents such as a slight fever can put him back in the hospital. He has to stay away from people, plants, pets and etc. for a year at least. But we can do that because he can do that. It is as I said to him today, “You did it. You did it, Sebby!” It was hard not to cry, but I made it. I am so very, very proud. He has been super brave through many harsh obstacles. His odds of survival were 50%. And he did it!

July 10, 2013

Progress

Sebby is getting there! His lung CT scan showed a few nodules more than previously, but they could also mean he has been laying in bed too much. His cautious doctor decided to do a procedure to make sure no virus, bacteria or fungi were present in his lungs; Sebastian’s lungs took a bath. The water was syringed back out and sent to the lab for testing. To date, all tests have come back negative. But not all are back; some take longer to grow. We are hoping they will all be clear. His Host vs. Graft Disease (HvGD) is responding to treatment and his bilirubin level went from 20 to 4.6. That is in the high, normal range (1-5 is normal). Yay! But he still has some hurdles. His platelets are stable now, but his hemoglobin is still battling it out on the inside. As a result, he is still receiving transfusions regularly. But no more platelets! That’s progress. And eating is going to help his liver a lot. Now that his Mucousitis is gone, he has started to eat again. Today his dr. started a medicine to stimulate his appetite. Hopefully, it will not conflict with his liver.  We can’t wait to spoil him with his favorite foods. His taste buds have to be reawakened; food isn’t that appealing as a result. Here’s to enjoying his mother’s amazing spinach salad with tortellini soon!

On another note, along with many wonderful folks, Cowtown Skateboards has been an incredible support to Sebastian and our family. For the month of July, they are having weekly drawings for awesome goodie bags. The first week’s winner has been randomly chosen and the next week is already in full swing. A variety of items will be gifted, including terrific skate prize packs and even some fine art coming soon. Donating any amount to Sebastian’s crowd-sourced fundraiser automatically enters one in the weekly drawing. The next name will be chosen out of this current week’s donors. Here is the link if you would like to help and be entered in the drawing: http://www.cowtownskateboards.com/news_detail.cfm?ID=449  Our family would like to thank everyone who has helped with the extreme expenses; we really appreciate your support! It is wonderful to not only have the help of our community, but to be able to see Sebastian receive so much love. It helps! Thank you! Cowtown Skateboards, you are awesomeness in action!

July 4, 2013

Longing for Home

At night Phoenix Children’s Hospital feels like being in  a Hopper painting. The lobby closes at 8 pm and immediately everything becomes lonely and quiet except for the man riding the floor waxer. Getting inside after hours is a bit like running an obstacle course. There are days I race from the parking lot carrying my bags and arrive panting at the front desk. It’s easier than parking in the back street lot, creeping through a darkish, deserted area to finally enter an emergency room full of screaming sick children, only to wait until the security guards obtain permission from Sebby’s nurses for me to proceed. I would rather slide into home base through the front door.

I hurried down today because Sebastian was having an erratic heart rate. His doctor finally ordered an EKG. It came back normal. That was a great relief for all of us. He has been navigating through some liver complications as a result of his Host vs. Graft Disease (HvGD) and two viruses. One is gone already and the HvGD is responding to treatment as well. The other virus is the common cold. Simple for us; not so simple for him since his immune is suppressed. A CT scan is scheduled for today. He is starting to eat and that is helping to absorb extra bilirubin. Some of his meds have been moved to oral. His blood still has a few issues to be resolved. He has a final hill to climb before coming home. He has already conquered the mountain. Hopefully he will be chilling in his new bed soon!

In the meantime, Sebastian was moved to a new room at the hospital. It has a glassed entry area that can be closed off for extra protection. Thus far, it has been left open. The couch is even more uncomfortable than in the other rooms (You didn’t think I was going to leave everything alone did you?).  But once again, he has a lovely northeastern view  that includes Camelback Mountain. We are hoping for some good firework action today.

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