Archive for May, 2013

May 29, 2013

Living In the Eye of the Storm

Sebastian is fighting like a champ! Today is day +7. Yesterday he had a small round of chemo to keep rejection to a minimum. He has one more tiny round on day 11 and that’s the end of chemo for him. Yay! Between now and engraftment, Sebastian is contending with mucousitis, which is ulceration of all mucousal tissues lining his digestive tract. It hurts and bleeds a bit. He is not able to say much or eat, but he is ploughing through some long days like a true hero. I am so proud of him.

It is hard to watch someone in pain. We am grateful there are meds to help deal with the discomfort. Sometimes it is easier to see a person than to hear about it.  Now that I am at the hospital, I am more comfortable with his challenge. He is dealing with it, which makes all the difference.

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May 24, 2013

Day +1

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The day of the transplant is called day zero. Yesterday was day +1. Sebastian is working very hard to get his body in the best place possible in order to help the stem cells find their way into his bone marrow. He has cellurlar damage that needs to heal. His body has recieved something foreign that it must now learn to accept. He had a small round of chemo today in order to keep his body from rejecting the transplant. It should take from two to three weeks before we know whether the new stem cells have found their way to his bone marrow; some of us are guessing what day engraftment will be finalized. Please join us in encouraging him by adding your guess to the great sites hosting his information, such as DLX Distribution and Cowtown, #goodlucksebastian. We are so thrilled by the support that continues to pour in. Each challenging day is matched with  encouraging support for him. It means so much. Here is an example from today:

http://skateboard.tv/video/23998/anthony-shetler-dedicated-to-sebastian-james

Thanks you Anthony Shetler and Skateboard.tv!

And Sebastian was the pic of the day for love, hope, strength today:Photo: Pic of day - Sebastian's receiving his stem cells as we speak. Send him some Love Hope Strength and repost! #goodlucksebastian #getonthelist #lhsf

He also received another great visit from Laura and Trent Martin at Cowtown as well as Bobby Green from Pyramid Country. They brought along skateboarders Andrew Cannon and another friend. And of course, his family just happens to be there and also  get to meet these awesome folks who have opened their arms and hearts to him. Perks!

We were very touched by the outpouring of help for his family at http://fundly.com/sebastian-is-a-miracle. We thank you from the bottom of our hearts!

All of this support has created a lot of buzz on behalf of becoming a bone marrow donor. It is so encouraging to see people contacting Be The Match in order to save lives. Being at Phoenix Children’s Hospital regularly for two years has provided me an opportunity to meet other families and learn their stories. Some children have been waiting for a donor match. A young man I met last week has been waiting for four years. Another two and a half year old has been waiting since she was ten months old. She has a disease called MDS, which is basically failure of the marrow to produce blood. The registry at http://marrow.org/Home.aspx sends a caller a kit with a cotton swab  and a form to fill out. All one has to do is swab their inner cheek and mail it in. If a match is made, the registry gets in touch for background information and  further screening to make sure a donor is healthy and no hidden diseases lurk anywhere. If all goes well, it is a visit to have some marrow removed, usually from the hip. It is a quick thing and totally worth it in my opinion. Just consider where Sebastian would be without his donor. Sebastian’s donor is a 9/10 match. The ideal match is 10/10, meaning the protiens on the stem cell’s surface match all ten criteria. But there was no 10/10 match available. He will have some side effects as a result and will need long-term medical care. Some nationalities have huge gaps in the donor registry. If you have a Native American or African American background, you are so needed! But other nationalities are needed too. The little girl I mentioned above is white with no match. So please consider joining.

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Another thing to considering is weighing in with your opinion regarding stem cell research in America. Obviously, I am an advocate. More to come in future posts . . .

May 22, 2013

Birthday #3; The Transplant!

Sebastian’s transplant went great today! He was bouyed up from all the love that came pouring in from around the world. He’s recovering right now and so happy that his days of harsh chemo are over. He’s being monitored very carefully by an amazing staff at Phoenix Children’s Hospital. A video will be posted soon, pending his approval.

His battle continues. It will take three weeks to know weather the transplant is successful. He will have many physical challenges during this time, but the doctors have meds standing by. His spirits are good and he’s able to check the many postings on sites that are supporting him. He will have a lengthy hospital stay and side effects. When he comes home, he will have an intense, extended recovery time with many outpatient visits. His immune is at zero right now, but will build as his body accepts the transplant in the coming weeks.

Our family is so grateful to the skating community as well as friends and family who continue to love and amaze us. We feel so blessed to have you in our lives. We are also keeping the donor close to our heart. Without his stem cells, Sebastian would not have been able to have his transplant. Below is a link to be the match where anyone can join and save a life. We are using the promo code: Sebastian 2013 to invite anyone who would to join the registry in Sebastian’s honor.

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

http://marrow.org/Home.aspx

May 22, 2013

Countdown with dlxsf

I am so stoked for Sebastian right now! The owner of Real Skateboards, Delux, Spitfire, Thunder and Anti hero just did something really special on his website. Check it out and leave a message for Sebastian. Thank you Cowtown Skateboards and Laura Martin for being amazing! He’s getting positive vibes and message from all over Brazil, France, Uruguay, Chile and Singapore so far 🙂

Feel free to comment here too! Let’s keep the love coming in. Tomorrow is the big day!

Check it out:

http://www.dlxsf.com/sebastian/

 

 

To Donate:

https://www.paypal.com/    Click the transfer tab, go to send someone money and enter the email as terrecita@cox.net

Thank you so much!

May 20, 2013

Thank You Cowtown and Pyramid Country!

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CowtownWith the transplant looming , the last couple of days have been filled with challenges; Sebastian has been walking with anxiety, fear, vomiting, showers every six hours, lots of wake ups for vitals and medical sensors making annoying noises 24/7. Sunday and Monday have been full of a heavy duty chemo as well as the beginning of immunosuppressant drugs. Sebastian turned eighteen and had to face decisions that his parents had previously made for him. Even the sagest of adults would have had to mentally wrangle some of the questions he has had to answer in a short amount of time. In my opinion, he made good, logical choices. But it was still a harsh round. That’s why I was so thrilled when the owners of Cowtown decided to stop in this afternoon. Hearing about his situation, owners Laura and Trent Martin arranged their schedule to come visit immediately. They also arranged to bring along Bobby Green, owner of Go Green Valet and  Pyramid Country, as well as skaters Aric Blattner and Issesadi . Sebastian had just quit vomiting when they arrived this afternoon bringing gifts and awesome words of encouragement. Sebastian was very visibly touched with gratitude by their kindness. They presented him with a skateboard displaying, “You Got This” sprawled among many skater’s signatures. How nice is that? Sebastian ran to the bathroom as soon as they left; he had obviously been fighting down nausea during the visit. But as soon as he came back to bed, he looked directly at the skateboard – a visible representation of the selfless acts of strangers who cared enough to put themselves out there on his behalf. Cowtown and Pyramid Country, you could not have chosen a better time to visit. We are very honored to now call you our friends.

Friends have asked how they can help. Below is  link to Paypal. Sebastian’s grandmother Cherie (me) is accepting donations on behalf of Sebastian and his family. Paypal is free and easy to set up and use. The link below goes to a page where anyone can send a gift to terrecita@cox.net as well as leave a personal note to Sebastian. Sebastian Mom has used all her time off in order to be with him as much as possible. However, the insurance is through her place of employment, so she must keep working part time even though her heart is at the hospital full time. Bone Marrow Transplants range from $500,00 to $1M! That does not include the last two years of chemotherapy, bone marrow biopsies and over twenty lumbar punctures Sebastian has already endured. Dad is consequently being Mr. Mom and working less too. We asking for help with transplant-related expenses so that Sebastian’s parents can be with him as much as possible during his lengthy stay. Sebastian will be in the hospital for months to come. The doctors want at least one of his parents has to be with him at all time. Thank you so much for your help!

https://www.paypal.com/    Click the transfer tab, go to send someone money and enter the email as terrecita@cox.net

Thank you so much!

May 18, 2013

Birthday #2

IMG2112Sebastian’s birthday landed on day three of radiation. After round two at Good Samaritan Hospital, a nurse waited with a wrapped gift for him as he was leaving. Another handed him a few lollipops. I decided to make the count eighteen in honor of his birthday. While the nurse and paramedics looked on with shock, I emptied the basket and began counting how many were resting on him as he rested on the gurney. When I said twelve, another nurse quickly went into the office, returning with six more and a baggie.

Back at Phoenix Children’s Hospital, Sebastian rested in a window seat momentarily before getting on the exercise bike in his room. He has consistently shown determination in the face of hardship. We had not been looking forward to this day; it was a pleasant surprise to see it go more smoothly than it might have. It was also a pleasant surprise when Jennifer, the Child Life Specialist came in to decorate his room. Soon the entire staff were singing Happy Birthday to him. An hour later, his friends and family trickled in. His Auntie Chantel brought eighteen balloons and eighteen goofy gifts from the dollar store. His cousin Dara brought his great grandmother to visit. The chef sent up two chocolate mousse cakes. I bet I could come up with a minimum of eighteen awesome surprises if I had counted them.

May 14, 2013

Ms. Curie Would be Surprised

482496_578962855461256_1895223575_nMarie Curie comes to mind today; this is day one of three intensive, full-body radiation treatments. Because Sebastian has ALL Leukemia, the boundary to his cerebral-spinal fluid was crossed, the radiation is necessary. It is harsh. Sebastian goes by ambulance twice a day. Today started at 6:30. It’s a good day for sending him (and his parents) positive thoughts, vibes and messages. He is being incredibly brave. This beautiful young man just walked through red coals lurking in the lower most level of an abyss. He is not an angel, but it smells like singed wings to me.

May 9, 2013

s1037405464_30313988_7632Next week will be a point of no return in preparation for the transplant. This week, Sebastian is having three cranial radiation treatments. It doesn’t hurt, but he said he could smell it. Already sore from Friday’s lumbar puncture, a headache and other symptoms will now add to the mix. It is stressful for us to watch; we know it is going to become much harsher next week. A wise friend of my mother’s once told me to force myself to bring the good times to my memory. She had lost a six year old child. She knew how to get through hard times. So today I am remembering how much Sebastian loves skate boarding. He misses it. We can’t wait for him to be able to return to his favorite sport.

May 7, 2013

Sunday, May 5

gfSebastian will be undergoing intensive transplant-related procedures on his birthday. Once a transplant happens, that day becomes a recipient’s new birthday. So we decided to use this weekend to celebrate a Cinco de Sebby birthday. The weather was great and we were able to gather and show support. During dinner, we each toasted him. Words like noble and inspirational were mentioned. The best toast came from his eight year old cousin, who finished his toast by encouraging Sebastian to have “Ninja Focus!” during his upcoming challenge.

May 3, 2013

Friday, May 3

Getting the ipod ready

Getting the ipod ready

Bone marrow biopsy and lumbar puncture completed today. Sebby hates the waiting before surgery. Glad he is home aleady and resting. We are hoping for good weather so we can enjoy the outdoors this weekend.