June 7, 2013

Where to Donate

Many are asking how they can help with medical expenses. Below is a link to fundly, a crowd-sourced fundraising site. No amount is too small.

http://fundly.com/sebastian-is-a-miracle

Thank you so much for your love and help!

March 6, 2014

Sebby Sharing

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We would like to share the following link so that friends and family know where to post comments. In addition to leaving comments on this blog, some have found it comforting to share on the azcentral site. Click on the guest book link below the obituary. You can also light a symbolic candle in his honor. It is also comforting to the family to hear stories of things he has said and done. So please feel free to post to this blog. I have to approve posts, so it won’t be immediately visible, but I check often.

http://www.legacy.com/obituaries/azcentral/obituary.aspx?pid=169782994

And don’t forget to shred it forward!

 

February 23, 2014

Shred it Forward

Sebastian James passed peacefully on February 14, 2014. He finished his earthly life as he lived all his days – a valiant, yet kind warrior.

In  honor of Sebby’s kindness, we would like to encourage his legacy of kindness. Please share your stories of compassion, kindness and love toward others on this blog. We have the privilege of living each day not only with awareness and presence but also the ability to be the change we want to see in the world. Random acts of compassion are a way to shred it forward to someone who may be experiencing challenges in their life. Sometimes, buying a cup of coffee for a stranger or sharing your place in line with someone who is ill can make a big difference in a day and indeed, a life.

We would like to thank the Skateboarding community for supporting Sebastian through his journey. Your acts of kindness toward Sebastian have inspired us to encourage others on their journey. Your heartfelt acts of leaving Sebastian positive thoughts inspired us to help keep his spirit alive.

Here is what you can do: Start thinking about acts of compassion and kindness, especially those compassionate acts that are anonymous. Many of you already do this on a daily basis. Please share your stories on the blog. We will be checking daily to do the administrative approvals!

Please visit  this blog in the very near future to download your template of The Sebastian James Project cards.

Thank you skateboarding community and THANK YOU SEBASTIAN!

The family of Sebastian (Sebby) Elijah James

February 16, 2014

Our Warrior Valentine Forever

Sebastian fought very hard for a very long time. He was admitted into the hospital a few weeks ago for increased levels of CMV (cytomegalovirus) in his body. He seemed to be responding well to treatment and was slated to go home in a few days. Overnight, he began losing the ability to oxygenate on his own and rapidly progressed from oxygen-assisted breathing in the evening to the need for intervention by morning. His father had spent the night with him. My husband and I, along with his mother joined him in the morning. We hoped it was for a few days until the doctors could figure out and treat whatever the problem was. Unfortunately, the test results showed extensive scar tissue in the alveoli of the lung, which was inhibiting his oxygen exchange. The damage is a result of chemotherapy, CMV and graft vs. host disease. The combination was just too much for his body to continue. He began to fail rapidly and his parents were faced with some very hard decisions in a very short period of time. His close friends and family were able to say goodbye. He was able to hear them although he was a bit groggy from pain medication and could not speak due to the ventilator. His little sister was able to come visit and make handprints together with him (with the assistance of a child life specialist). His great grandparents travelled from the Navajo reservation in northern Arizona arrived later in the evening to also say goodbye. After everyone had shared their love with him, the breathing tube – which he hated and wanted out – was removed. Sebastian was able to pass peacefully and surrounded by those who loved him dearly. Some of his favorite music was playing softly in the background as we wished him safe passage, told him we loved him and held him in our hands and arms. The look of peace on his body after he passed was remarkable and one I will never forget. He is absolutely at peace now. Our warrior was as brave as any gladiator ever known. We have been honored to have him in our lives for 18 years. His life had some hard times, but it was also filled with great moments as well. We will be sharing some of our favorites at a celebration of his life on Feb. 21st from 6:00 – 9:30 p.m. at The Boojum Tree in North Phoenix.

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!

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 25, 2013

East Valley Tribune Article about Sebby

It is funny what things start to infiltrate memory. I have this script running in my head today:

 

There are ten round windows in the pharmacy department.

 

It takes three paper towels to dry your hands in the public restrooms.

 

Much of the art at Phoenix Children’s Hospital is made from a child’s perspective.

 

The view from the seventh floor waiting area is amazing on a clear day. Camelback Mountain is always patiently.

 

Sebastian’s nurse today is so kind and thoughtful. PCH is lucky to have her.

 

America’s Funniest Home Videos has great animal clips. A bear just stole a fisherman’s catch from under his nose.

 

The surgical mask is incredibly hot and uncomfortable.

 

Sebastian’s new shoes from DC are looking pretty fly on him. DC, you rock! Thank you for the gifts!

Vegetarians that avoid french fries and onion rings should be given a meritous category all their own.

 

Sebastian would probably be fading away about now without the transplant. GAH! Harsh to think about.

 

On a better note, the article published today in the East Valley Tribune does well to give a call for more donors in addition to creating awareness for pregnant moms. The umbilical cord (rich in stem cells) can be donated at the time of birth. A simple form at the time of admission is all it takes. Many moms are never made aware of the option. As the article explains, stem cells are particularly helpful for reducing complications. It is a shame that so many umbilical cords are unknowingly and unnecessarily discarded.

 

Here is the link to the East Valley Tribune to learn a bit more:

http://www.eastvalleytribune.com/local/health/article_f18a2014-f336-11e2-ad80-001a4bcf887a.html

 

 

 

July 19, 2013

Day +61

This is day +61. Sebastian is making a leap over what is hopefully his last hurdle. Tuesday he underwent tongue, lung and bone marrow biopsies as well as another lumbar puncture (l.p.). He could have waited another week for the l.p., but elected to get it all over with at once. Some of the test results are in and others will be in next week. Already we have enough information to understand why his tongue is sore, his lung nodules have grown and a fever surfaces every morning. The CMV virus is guilty on all charges. CMV is also in his bone marrow. Additionally, his old acquaintance, Epstein-Barr (Mono) virus has decided to visit his same organs. I am pleased it was not Graft vs. Host Disease in his lungs! To date, we have no definitive answer on why his ed blood cells are lysing (dying) off.

 

Why all the viruses? These are viruses that Sebastian already carried in his body prior to transplant. Having his immune suppressed has allowed them to resurface. It is very common to have CMV post transplant; 6 out of 10 transplant patients deal with it at some level. In Sebby’s case, the lungs need to be addressed in order to prevent pneumonia. As I write, the doctors have already increased the amount of Foscarnet, a medicine that addresses CMV. He just finished another med that targets the Epstein-Barr virus. Every drug has side effects. Foscarnet has kidney concerns, but his kidney dr. has already been in to see him and will be monitoring closely. His other medicine options have harsher kidney or bone marrow suppression side effects. So Foscarnet is the choice for his situation at this time.

 

Mostly, he wants the drain tubes out of his lung! His lung doctor has to do the procedure, so we are waiting for him to stop in this evening or tomorrow, depending on fluid levels, etc. It is uncomfortable to say the least. The viruses are not causing him pain and we are grateful for that.

 

In summary, he is a fighter that has not given up his skating credo. He is staying strong and doing his part. He is eating even though food hurts his tongue. He even did an interview last week for the East Valley Tribune. Hopefully, it will inspire others to become bone marrow donors. Sebastian would not be dealing with such big CMV issues if he had obtained a ten out of ten match. But no donor was available. His match was nine out of ten. There are other issues surrounding the subject of research as well.  If you are interested in reading the article, it will appear in this Sunday’s edition. We will be reading it for the first time too.

 
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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