Benefit Night

Clayton's benefit was a huge success in so many ways.  Thank you to everyone who helped with the preparations.  Specifically: Sheila, Kerry, Josie, Cindy, Louie, Debbie, Aunt Franny, Aunt Connie, Andrea, Greg, Dwayne, Lucy, Sherry, Azlynn, Mike, Gram, Grandma, Aunt Kathy, Aunt Kathy (there's 2!), Aunt Dolores, Linda, Cindy, Uncle Ed and Louise.  

Thank you to those who donated services/products or provided them at a reduced cost: Telford Printing Press, Horizon Signs, Tylersport Fire House and Ladies Auxilary, Mike Trotter/Wham Jam Ent., Costco, TGI Fridays, Azlyn Beck-Gardner, Realtor w/ Keller Williams (donated use of wireless computer), Mercedes with Premier Jewelry and Cabelas.

We hope to be able to pay down some of the costs of his care, purchase a computer for him to communicate with all of us and pay for some fun things like camp for Max.  

Thank you to everyone who attended were so generous with what they gave.  Also, thank you to all of you who could not attend but sent a donation.

All of you are in our prayers of gratitude!

maybe not...

The results of the CAT scan came back.  They don't think that he has an adrenal gland tumor.  It's a relief not to have cancer but frustrating that now there's no answers for his blood pressure & feeling ill.  Hopefully, they can figure something out soon.

Prayers

I was wondering if everyone could list the places and people that they know that are praying for Clayton.  I would imagine that it would be quite a few.

I'll start:

St. Agnes Church, Sellersville, PA

Mandy Sitko and little Vi Vi in her own 1 yo way

treatment

this is from the mayo clinic website

Treatments and drugs

By Mayo Clinic staff

Your doctor may prescribe medications that lower blood pressure. However, the best treatment for most pheochromocytomas is surgery to remove the tumor.

Medications 
Medications used to treat high blood pressure associated with pheochromocytomas include:

• Alpha blockers. Alpha blockers, also called alpha-adrenergic blocking agents or alpha-adrenergic antagonists, relax certain muscles that help small blood vessels remain open. They work by keeping the hormone noradrenaline (norepinephrine) from stimulating the muscles in the walls of smaller arteries and veins. This stimulation makes the vessel walls constrict. Blocking that effect causes the vessels to remain open and relaxed. This improves blood flow and lowers blood pressure. Examples of alpha blockers include phenoxybenzamine (Dibenzyline), doxazosin (Cardura), prazosin (Minipress) and terazosin (Hytrin).
• Beta blockers. Beta blockers, also known as beta-adrenergic blocking agents, make your heart beat more slowly and with less force. They work by blocking the effects of the hormone norepinephrine. This action slows down the nerve impulses that travel through your heart. That means your heart doesn't pump as hard because it needs less oxygen and blood. Beta blockers also slow down the release of the enzyme renin from your kidneys, helping keep blood vessels dilated. Examples of beta blockers include atenolol (Tenormin), metoprolol (Lopressor, Toprol XL) and propranolol (Inderal LA).

For a pheochromocytoma, alpha blockers are used first to return your blood pressure back to within normal limits. Once your blood pressure is lowered, beta blockers can help control a rapid or irregular heartbeat. Both alpha and beta blockers are used in preparation for surgery.

Surgery to remove an adrenal gland 
The most common treatment for a pheochromocytoma is surgical removal of the entire affected adrenal gland. In most cases, signs and symptoms then disappear. Blood pressure usually returns to normal soon after surgery. Before surgery, your doctor will prescribe medications to block the effects of the adrenal hormones and control blood pressure. If both adrenal glands are affected by pheochromocytoma and are surgically removed, you'll need to take medication to replace the other hormones once produced by these glands.

Laparoscopic surgery an option 
Depending on the size and location of the tumor, laparoscopic surgery may be performed. Laparoscopic surgery involves inserting instruments through several small incisions. This procedure may result in quicker recovery when compared with conventional surgery, which requires a larger incision. Laparoscopic surgery isn't for everyone, however. Talk to your doctor about this less invasive technique to see if it's an option for you.

Surgery may not be possible 
Sometimes surgery isn't an option because of the way the tumor is growing or because the tumor has spread (metastasized) to other parts of your body. If a pheochromocytoma is cancerous (malignant), treatment may go beyond medication and surgery to include radiation, chemotherapy or destroying the function (ablation) of arteries that supply blood to the tumor.

pheochromocytoma-the name of his tumor

I wish he would have picked an easier name to say. ;)

Anesthetic Management for Pheochromocytoma. 

Park CJ, Shim JY.

Department of Anesthesiology, Catholic Medical School, Seoul, Korea.

Pheochromocytoma are functioning tumors which arise in chromaffin tissue of adrenal gland. The signs and symptoms of pheothromocytoma results from the release of the highly potent amines, epinephrine and norepinephrine by the tumors. This tumor release both epinephrine and norepinephrine into the blood stream for distribution to distant sites of action. Circulating norepinephrine produces widespread vasoconstriction, causing increased peripheral resistance and resulting in increased systolic, diastolic and mean arterial pressures. The direct effect on the heart is to increase the rate and force of contraction. As important effect is the reduction of plasma volume caused by prolonged increases in circulating norepinephrine and epinephrine. These adrenergic aminess have prominet metabolic as well as hemodynamic effects. The increase oxygen consumption and elevation of blood glucose and lactic acid level caused by epinephrine are much more marked than the increase produced by comparable amounts of norepinephrine. Anesthetic management of pheochromocytoma should considered prevent serious alterations in blood pressure. So, We present the case of anesthetic management for pheochromocytoma which control of hypertensive crises by the use of a intravenous infusion of sodium nitroprusside.

this explains a lot.  It explains why he's had such high blood pressure (both numbers) and needed frequent blood transfusions.  Maybe this is really good bad news.

Good Bad News...if there is such a thing.

Please keep Clayton in your prayers.  Over the past few weeks, maybe it's even been a month, Clayton has been at a stand still with progress in his recovery.  He takes a step or two forward and then a few back.

They've especially had a very difficult time regulating his blood pressure.  The doctors now believe that he may have a tumor in his adrenal gland.  (For the members of the Sitko family and those attending the benefit on Saturday: I told Grandmom Sitko that it's a "cyst"  Please don't mention the "c" word to her.  We don't need to have her become so worried that she falls again or can't sleep at night).  This gland sits on top of the kidneys and most likely received radiation from his cancer treatments as an infant.   We're hoping it's not cancerous. They have not been able to confirm this with testing because his myoclonis has been intense, this is the seizure like jerking movements that he experiences when he's ill.  Fortunately, they were able to get them undercontrol at the expense of his alertness.  The medications that control it well, have a sedative effect.  He is having a CAT scan now, as I write.

He has had a really tough day in hearing this news with tears and feelings of hopelessness.  We hope that the doctors will be able to find a way to control his myoclonis, get hopeful test results while they find the cause of his stagnation in recovery and high blood pressure.

We are still hopeful that he will make a full recovery and be home with us by the end of the summer.  If you are comfortable doing so, please spread the word and ask others that you know to pray, too.

Love,

Mandy

pics to share

Which way to the beach?

What Grandma and Vi Vi do in the waiting room while we visit: the inky dinky spider.

Hey, did you just pass gas?

Gotta love kicking back and resting the old, tired feet.

This is Clayton with two of his wonderful nurses.  Fil has enabled Clayton to have moments of just being a guy, hanging out and talking about motorcycles.