Posts tagged ‘#goodlucksebastian’

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!

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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

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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