June 24, 2013

Rose Pruning

Today I have been thinking about a story I heard years ago. It was about a farmer’s rose arbor that needed pruning in summer. Roses are usually pruned in early spring (January in my Arizona yard). Many of the limbs were old and not producing as well as in their younger days. A novice lopped off all the limbs of an enormous, gnarly bush that grasped in many directions. The farmer, upon learning of the error, sat against the gate and cried; he knew the bush would likely die. The novice, seeing the farmer weep, asked why. The farmer realized he had not explained the reasoning or the procedure well. He sat the young man down and began to explained that chlorophyll to a plant is the life blood. It must receive it through photosynthesis in the leaves. If the tree is without leaves, it can not synthesize its nutrients, especially during the growth periods. Following up, the farmer added, “That is why we only cut one or two old branches each year. We leave the others to catch the sunlight. After ten years, we have an entirely new bush.”

In some ways, a bone marrow transplant is similar to an extreme pruning. The marrow is emptied of blood until the stem cells navigate to the marrow and begin producing. In the meantime, a person is given temporary help, much like the rose branches that are destined to be lopped the following year. There is a reason they use the term engraftment. Blood transfusions and immunosuppressant drugs fill the gap until they are no longer needed to sustain the body.

Sebastian has been receiving an immune suppressant that may be causing a few too many complications, so the doctors are changing his med to see if it will bring better results. Additionally, he has a liver virus, an unknown factor (hopefully just the med) is zapping his red blood cells, nausea and a rash. The rash and severe nausea are indicative of Host vs. Graft (HvG) disease, but more tests are needed. The situation might be exacerbated as a result of the virus. They want him to try solid food and see how he does with it. So he is dealing with several situations simultaneously; all of them can affect the liver. Today he is too sick to eat.

This is our speed bump. Logic told us he would probably have a little Host vs. Graft disease. But we hoped to somehow avoid it. That’s part of every family’s challenge in situations like ours. We want to lop off all the limbs and have the rose bush leap back into action. The reality is that he has done fantastic thus far; he truly walked through fire for weeks. He has GREAT doctors with critical experience and knowledge. We all have to be a little more patient while the chloryphyll (blood, med changes, etc.) get him over this bump in the road. Soon we will have an entirely well Sebastian . . . AND . . .

He will come home to a super comfortable new mattress and box springs compliments of our Phoenix-based Sleep America! When Sleep America’s Charity Board heard about Sebastian’s chronic back pain due to over two dozen lumbar punctures, they decided to gift him with a comfy bed. Not only is it of great quality, but their specialist, Santos Lucera, took extra pains to make sure the box spring placed the bed at a good height because one of Sebastian’s knees pops and hurts when he bends it. Santos also worked with Sebastian’s family to make sure the mattress was going to be a good fit for Sebastian’s comfort. We are so grateful to Santos, the Sleep America Charity Board and the lady that lives up to her promises, Deby Gaby! Thank you sooooo much! Sebastian can’t wait to come home and try it out!

Here is a link to see what a great company Sleep America is:

http://www.sleepamerica.com/en-us/aboutus/charities.aspx

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June 19, 2013

Day +27

Sebastian has been leaping each hurdle as it comes at him. His white blood cell counts are remaining stable. His body is healing now that the white blood cells are available. The doctors seem pleased, but say he has a long way to go. Lately, he has felt up to moving around more.

The skate community has really shone in supporting him! Sebastain asked me to thank so many for the support and gifts. A great organization, Above Coping at www.abovecoping.org sent Sebastian a beautiful skateboard complete with grip tape, lugs, wheels, trucks and etc.! And it was his size! They are a great nonprofit organization doing a great service for kids with serious illnesses.

Andrew Cannon, Billy Davenport, Mike Franklin, , Derek Fukuhara stopped in before heading out for the World Industries’ Long Hard Summer Tour. The nurse made them wear blue gloves and  coats, lol. It was a fun visit and Sebby felt good enough to stand up for a pic (see below). You may notice the cool shirt Sebby has on. It was a gift along with a few others from the awesome folks at DLXSF. Thank you; Sebastian really likes them! These gifts have really broken up a long, hard month of tough days. Some days, it is such a refreshing highlight from many medical processes.

One day, three gifts came in at the same time. Above Coping’s gift came at the same time as our friend Michael Matthew Woodlee sent over a cool skate shirt and skateboard with custom art made by another friend. I’m not sure who enjoyed the gifts more: Sebastian recieving the gifts, or us watching Sebastian.

AND…..  our friends at Cowtown have launched a support campaign in  tandem with their ten year anniversary. Here is their word on it: ” Our friend Sebastian James is battling Leukemia in the hospital and can’t make it to any Go Skateboarding Day events.  Sebastian is an 18 year old skateboarder who has recently had a Bone Marrow Transplant and is on his way to recovery.  To help him and his family with his insane medical bills, for the month of July Cowtown is going to pick a weekly winner from the donors to receive a package of skate goods. You can Donate Here

Here is more on his inspiring story https://sebastiansbattle.wordpress.com/
Please spread the word.”
Cowtown has been incredibly supportive of Sebastian and his family. They are kind and generous people. If you would like to help them with promo products for their weekly drawing, please contact trent@cowtownskateboards.com or mail skate goods to:
Cowtown Skateboards
Attn: GSD
215 W. University Dr.
Tempe AZ 85281
The donate page on this blog also goes to the same fundly account.
We are so grateful for all of your support, each and every one! It really helps!
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June 14, 2013

Day +22

Sebastian has been very busy between day +18 and now. The night of day +18 was very uncomfortable and worrisome. When the doctors came in the following morning, his white blood cell count had flourished! It was a great moment to witness the ecstasy on everyone’s faces. There is a formula used to count new and mature white blood cells; it is called an ANC count. Overnight, Sebastian’s ANC count had grown from forty to over four thousand! No wonder his legs and back were hurting. The empty marrow was being filled with new white blood cells, and lots of them. This means the stem cells are doing their job. We are so thrilled. Today his count is about the same, which is good considering he no longer is getting shots to stimulate growth. The pain has also subsided significantly.

Sebastian still has many hurdles to cross before he can come home. He needs to produce red blood cells and platelets. They take a little longer to develop. He is still battling intestinal concerns. We should know more after a G. I. specialist visits. It is comforting to witness firsthand how intelligent and experienced his doctors and nurses are when something is an unknown. Hopefully, Sebastian will be on top of this soon.

I am getting anxious to see him whiz by me on a skateboard!

June 9, 2013

Day +18

Today I have been thinking about the luxury of memory. Already, I have accumulated many snapshot images of my time at Phoenix Children’s Hospital (PCH). Sebastian has been surrounded with excellent health care by amazing doctors and nurses. If how we treat our children is a comment on our culture at large, PCH is doing its part. So are the parents of ill children I walk among. Some are too preoccupied and worried to smile. Others are too busy bending in prayer from a seventh story window at sunset (kind of facing east), or tending a two year old who doesn’t feel well enough to do anything but be cranky and cry.

There are others who push buttons, open doors, sterilize elevators. One particularly thoughtful person offers tea when late night fatigue sets in.  Some nurses wear headlamps or carry small flashlights so their sleeping patients can rest between machine beeps. If a crisis is not happening, some even time the many medicine signals in order to arrive silently before the alarms go off! That includes making sure everything has arrived in a timely fashion from the lab.

I am happy to keep in my memory friends who have sent gifts and financial help, brought food and cheer to the waiting rooms and helped with so any number of endless things. A new friend, Sharon, sent a beautiful bracelet with pearls graduating in size until the final, large, luminous and perfect end piece. A note explaining her inspiration for how the design reveals life’s interruptions and rebuilding says it all. Although Sebastian may never wear it, he loved the concept. Each time we look at this lovely piece, it serves as a pleasant reminder to continue building the body back to health.

Building is what this has been about. Staying healthy with zero immunity is a constant vigil for Sebastian and family. He has been through an extremely tough time. I honestly do not know if other transplants are this difficult. I hope not for the sake of those needing them. What I do know is that a day comes when the body chooses whether or not to accept the transplant. We will not know that for a little bit longer, but I am happy to share the new progress. Yesterday, on day +17, Sebastian’s white blood cell count rose from 0.1 to 1. Today it is 1.6! We are so excited to finally see things start to move in a positive direction for him!

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Above: The IV pole at night.

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!

June 3, 2013

Meet Frank

This is Frank, a beta fish. He has his challenges: he did not ask to be born into captivity; he did not choose his home (although it is  a stylish modern one); he did not have a vote in the terrain his home sits upon. But Frank is a warrior; betas are fighting fish. At one point, Frank lived in a neglected tank. His oxygen levels were threatened. Frank decided to skooch to the bottom of the tank, far from the noxious bubbling surface. Curling his tail and fins around him, Frank waited  for relief. He came up as necessary, returning quickly to his survival mode.

When a tank is as fermented as Frank’s, it takes a while to get the water pristine. A little of the rank water stays and mingles with the fresh, making the mix cleaner, but not the cleanest. Frank had a plan though. He came up for food, expending energy when necessary. If someone rounded a corner suddenly, he jumped and swam a rapid circuit until he felt safe. The rest of the time, Frank free floated in a head up, tail down energy conserving position. At the end of several water changes, Frank was freely swimming circles in clean water in the uppermost level. He looked magnificent, tail unfurled, undulating fins. He owns that fishbowl!

Sebastian reminds me of Frank. Like Frank, he is a warrior engaged in conflict. And like Frank, he rests between battles to conserve his strength. Today is day +11. He has won eleven battles in this war. He is very close to winning!

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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.

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!