Archive for July, 2013

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

 

 

 

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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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