"Double Whammy"

(Friday, September 3, 2010) “Double Whammy”
Judith Viorst wrote a children’s book titled “Alexander and the Terrible, Horrible, No Good, Very Bad Day.” Unfortunately, we’ve had that kind of week.

Yesterday morning (Thursday) we drove to Moffitt to have a port inserted in my chest to replace the PICC line I received last week. That was followed by my chemo-therapy treatment in the afternoon. Neither Patra nor I were thinking much about my “procedure” or "treatment" because while we were traveling to Moffitt in north Hillsborough County, Jenny and David were taking our grandson Andrew (5 years old) to All Children’s Hospital in south Pinellas County for Andrew’s MRI of the brain and spinal cord and a follow up with the neurosurgeon. Our prayers and thoughts were focused on that little guy.

Andrew’s Bad News Day. Andrew’s MRI results were not what we hoped for. When the neurosurgeon spoke to Jenny and David, he used words like “worrisome,” “severe,” and “concerned.” I asked Jenny to give me a report that I could share with you.

Jenny - A couple of months ago Andrew was diagnosed with a “Chiari Malformation” in his brain. His brain extends past the base of his skull and creates a sort of “cork”, plugging up the entrance to his spinal column. Thursday’s tests showed that this malformation is virtually blocking all spinal fluid from entering and exiting his brain. In addition to the fluid blockage, this “tonsil” of brain that’s extending downward is throbbing against his spinal column with every single heartbeat. The MRI images also showed that some spinal fluid (but only a very small amount so far) has accumulated in his spinal cord.
The surgeon was most concerned about the throbbing of his brain into the spinal cord. It’s very rare (he mentioned that this was the 2nd time he’d seen this effect wit
h a Chiari patient) and exposes his brain to undue jostling and potential for
injury.
The good news is that this can all be corrected with surgery. The procedure was clearly explained and the doctor reassured us that it’s a much less invasive procedure when done on children (adults require a much more aggressive surgery with a longer healing time). And from all accounts we’ve heard, it’s a remarkably effective “fix”, virtually eliminating most patients’ symptoms.
Although we have not yet scheduled his brain surgery, we have been advised to get it taken care of within the next several weeks – early November at the latest. This will include a 3 day hospital stay and a recovery period of about 5-6 weeks.
We’re sad for our little guy that he has to go through this at all, but we’re grateful for the peace that comes from knowing God is in control and loves Andrew even more than we do. We are ready to get this taken care of soon – and get him back to his busy schedule of Kindergarten and t-ball!

Like every parent and grandparent, Patra and I would gladly volunteer to go through the procedure for him if we could. He is too young to understand and was very frightened by the MRI. Please pray for Andrew, Jenny and David. Please also pray for Andrew’s other grandparents, Tom and Margie, David’s parents. Andrew loves them so much and they have walked through “tall weeds” for many years. Tom has a serious health issue. Their faith has been an example and encouragement to Patra and me this year. (This gives me an opportunity to say that we are blessed by each of our grandchildren having terrific grandparents “on the other side.” I plan to write more about that in the future but suffice it to say that I know that all of my grandchildren have other grandparents who love them unconditionally and will always be there for them. Tom, Margie, Ken, Joyce, Jon, Marilyn – may God bless you and protect you. Thank you for being the grandparents you are! Knowing you
are there for “our” grandchildren gives me a wonderful peace.)

Bob’s Bad News Day. I am no longer “playing the game.” Before we go to the doctor for a status report, Patra and I posit a “best” and “worst” case scenario. Since my diagnosis of amyloidosis, I do not recall a visit where the news didn’t come back “worse” than my “worst case” scenario. That was true again this week. My
“worst case” scenario was that the test results would not be good but the doctor would tell us it was too early in the treatment (we just began cycle 3) to make any assessment.

I was partially correct. My most recent test results were not good. This is one “nasty little disease.” While there is still a “possibility” the chemo-therapy will work, the bottom line is that my doctor does not believe the treatment is going to work.

Since we have exhausted the recognized treatments for amyloidosis (bone marrow transplant and chemo-therapy using Velcade) she recommended we consult at either the Mayo Clinic (Rochester, Minn) or Dana-Farber Cancer Institute (Boston, Mass.) In her view, those two hospitals have some of the best doctors and programs dealing specifically with amyloidosis and may be able to offer clinical trials or experimental type treatments not available anywhere else.

My doctor is attempting to get me an appointment which may be difficult (their expertise causes these doctors to be in great demand) so we are praying that all the necessary details and logistics can be worked out. She does not want me to wait many months for an appointment.

We really do solicit your prayers. Please know that Patra and I are fine. I am so proud of Jenny and David – they are being squeezed and their faith is flowing out. It is amazing how God has shown us His love and care during the past couple of days.

A part of me wants to pray, “God, enough is enough, I am tired of this, please heal me, heal me completely and heal me now. But God, more than anything I have ever prayed for, I am begging you to take care of Andrew.”

God is good… all the time, He loves me and He loves Andrew and He cares for us. He is sovereign and omnipotent. His thoughts and ways are so far beyond my own thoughts and ways. God has never let me down. Therefore my prayer will be:
“Father, we are in Your hands and there is no other place we would rather be. May Your will be done and not my will. Help my unbelief. I want to trust You in all things at all times. … and by the way, Andrew is a really special kid.”

I just read this post for the final time hoping I would catch any typos, etc. What jumped out to me was not the grammar but the fact that we will have to work to get an appointment to have human doctors meet with us. Yet, the God of the universe, the Creator and Sustainer of all life is always right there for me to talk to. He is never too busy and always interested in my case. I always feel better after consulting with the Great Physician. By the way, He knows more about Chiari malformations and amyloidosis than anyone!

Until next Friday. God willing.
Bob

Comments

We were at the hospital all day yesterday in hopes of finding a diagnosis for symptoms that have plagued the baby for over a year. While we were getting in the elevator we saw David while Andrew was in MRI! Missed Jenny and Megan as they were in the gift shop (probably shopping for something sparkly?!) I kept thinking while I was praying thank you God that Andrew has a diagnosis now BEFORE it became an extreme emergency and hours, maybe even days were wasted while attempting to pinpoint the source of the emergent symptoms. There are no accidents with our heavenly Father. He is in complete control. We continue to pray for you and yours.
Anonymous said…
Bob,
Needless to say, we feel speechless as to what to say to make anything better for you or Andrew. We too trust that same GOD, and we too know that HE does always have time for us.
Bob, Patra, we WILL continue to pray that our LORD who loves us so much will see fit to work two important miracles for two people who are so very special to us.
We love you and continue to pray and praise on your behalf.
We will be there soon, God willing, and want to help in any way you might need us.
Lex and Linda
Anonymous said…
Bob, Patra and Family: Once again, you are an awesome family and we learn more and more from you and your testimony each time we read posts.

Of course, we will continue to be prayer warriors for Andrew, the knowledge for the doctors to make the "fix" to his malformation and he sounds like the type of kid that lets nothing get him down.(probably a lot like his grandpa)

You, my friend, are very special as well and we continue to lift you up in prayer and for guidance for the doctors to find the right trial to put you in. We know you are in God's precious hands and there is no better place to be; in the comfort of His loving arms!

Did you actually get your port in, or did I miss that?

Take care my friends.

Ted & Carol W
Anonymous said…
Read the comments yesterday that Adam and his sisters put on FB and had to laugh...you all have such a wonderful sense of humor no matter what..I am always inspired by reading your blog and your unwavering faith in God...We are so blessed to know you..so happy God led Sharon to find Adam and thus have an extended family too..All our prayers for you all...love and hugs
Jon/Marilyn
carolinagirl said…
Mr. Bugg,

My name is Amy Timpe and my husband and I attend SRBC. We are in Pastor Busby's class and our class has been praying for you faithfully. IT was mentioned this morning that you had a blog. I will now add you to my blogs that I follow. This will help me to remember to pray for you and now Andrew daily.

I also wanted you to know that in Dec. 2008 I was referred to a specialist at the Dana Farber Cancer Institiute. I was very impressed with them. The facility is impressive and so are the people that I was in contact with. I don't know if you have checked out their website, but it is very informative and helpful. If you do have to go to Boston, Mike and I could help you with where to stay, etc. We had the best experience in Boston and at Dana Farber.

Praying with you!
Mike and Amy Timpe
Anonymous said…
Dear Bob, Patra & Family,
I just read the comment from Mike & Amy Timpe. Thankfully, their encouragement inspired me to add a thought>>>
Praise God for the privilege of prayer and those who He sends in our lives to help us along the way!!

It has become difficult for me to continue to comment after reading these blogs lately. The details of the situations leave me bewildered as to what to say. Dave and I continue to pray together for these situations. May we continue to shine for Him in the darkness as we prayerfully "cast our cares on Him for He cares for us." I Peter 5:7
Take care as we continue to pray that His will be done according to His plans.
As we trust that He continues to lead...
In Christ's love & prayers,
Ruthie & Dave Quarles
Tyler said…
Momma and Papa Bugg

You two are awesome and amazing people. Kari and I are very sad about all of the medical issues that your family is dealing with. Your perspective and attitude are a real encouragement to anyone who reads your blog. Know that you and your entire family are in our prayers.

With Love - The Mattingly Clan
Tyler, Kari, Ella, Emily, Evie & Ty
Anonymous said…
Hi there -- So sorry to hear about the horrible, very bad week that you all had last week. We will being adding extra prayers for Andrew, Jenny and David. I know that will be a tough thing as a parent to go through, but am thankful that they found this early enough and that he will completely recover. I have talked to Aidan about him and he will be asking his first grade class at Immanuel Lutheran School to pray for Andrew too. My heart goes out to you Bobby and Patra for all that you have been though so far fighting this "nasty little disease".I pray that you can get an appointment very soon and talk to some of the experts in this field.But as you say, we know who the expert is and we have to place our trust and our lives into his
healing hands. I will be out of town for several weeks (no computer) but Donnie will be keeping up with you and keeping me posted.I love you all very much and wish you strength to continue this rough journey. ~Mary Lib