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.
Thank you so much for your love and help!
Smile! You’re at the best WordPress.com site ever
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.
Thank you so much for your love and help!
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!
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. . .
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!
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:
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.
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!
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.
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:
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
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!
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!