"Happy Birthday, America"

The family (minus a working James) celebrating on July 5th!

(Friday, July 9, 2010) “Happy Birthday, America”
We had a great July 4th weekend. We spent time with all of our children and grandchildren. I really enjoyed the Washington D.C. Capital Fourth of July and Boston Pops television specials. This is a great country in which we live! May God continue to bless this land!

Yesterday I went to breakfast with a good friend and fellow mediator. (It was the first time I had been out to eat without Patra.) I am older than Charles but not that much older. At one point our server asked Charles, “Is this your father?” I had mixed emotions. I felt like I was wasting my disease. Now that my hair is growing back, apparently I just look old, real old.

I officially weighed in this week at 179.2 lbs. (For the record, my normal weight before my diagnosis was 205 lbs.) I’ve lost more than 20 lbs in a month. For years, try as I might, I was unable to lose 5 lbs in a year. Despite its effectiveness, I do not recommend the “bone marrow transplant diet.”

My current weight loss is a good thing because it comes from the loss of fluid. My legs and belly no longer look like the Pillsbury Doughboy. In losing this weight (fluid), I have had no problems with dehydration and there has been no need for replacement fluids recently. (I have specifically asked for prayers in regard to this balance between fluid retention and dehydration several times in the past. We are thankful for this “answered prayer.”)

The doctor is reducing the diuretic because she doesn’t want me to “dry up.” If I kept going, the next time we went to breakfast, somebody would think I was Charles’ grandfather.

179.2. I have learned over the last many months of treatment that it is important to be precise when recording my weight. At the beginning of this journey, I would round off my weight and the nurses would always correct me. “210.4” “197.6” I have decided this is due in part to the fact that they are proud of the industrial strength scale which they use and which is very accurate.

Our home scale is not very accurate. A home scale works for about one week and then it becomes a door stop until it is discarded and replaced by another scale that works for about one week. If you use the scale on tile (bathroom) you automatically gain 5 lbs. By moving the scale onto carpet (living room) you lose 5 lbs. If you lean on your right foot while standing on the scale, you gain 2 lbs. Every member of the family “adjusts” the scale trying to gain an advantage and then justifies this manipulation by arguing that the scale needs to be re-calibrated. It is a little disconcerting to get on a scale that starts at +5 lbs.

Andrew may have figured the home scales out. When he was about 2 he stepped on the scale and I asked him, “how much do you weigh?” He answered, “about 27 inches.”

I think back to the times I would shower in the morning and immediately get on the scale (before getting dressed) hoping I would get a little extra benefit. 179.2 – that is official with all my clothes on, including shoes and pockets holding my wallet and cell phone!

We are doing some tests and blood work this week at Moffitt. We would appreciate your prayers since these tests could be important in determining the next several months of treatment.

We also would ask for your prayers for our grandson, Andrew (5 years old). In the past, we might have waited to voice this prayer request until we had more information, but as I told his mother, we have some powerful prayer partners and we need to get them started. Your prayers are more meaningful than you could possibly know!

Recently, Andrew has been having severe and frequent headaches. His pediatrician ordered an MRI and his doctors feel that the radiologist’s findings should be further investigated. Andrew has an appointment next week with a pediatric neurosurgeon at All Children’s Hospital. (We are blessed by having All Children’s in St. Petersburg.) The doctors have relayed to Jenny and David that, even though a neurosurgeon has been brought into the picture, it doesn't necessarily mean he'll need surgery.

So we solicit your prayers for Andrew, Jenny and David (and for good measure, Grandma and Grandpa.) It is hard for Patra and I not to think of Andrew. When we were at Moffitt this week, we both wanted to ask every nurse and practitioner we saw not about amyloidosis but about pediatric neurology.

As the regular readers of this blog know, my special time of prayer is usually between 2:00 a.m and 4:00 a.m. I have never heard a direct voice from God but there are times when He is so real it feels like we are having a conversation. This week, as I prayed for Andrew, that brought me incredible peace.

“Bob, I know how much you love him. Have you thought about how much I love him? I love him so much that I sent My only begotten Son to give His life for him. I will hold Andrew and Jenny and David in My arms and never let go … and Grandma and Grandpa, too. Now, get some sleep.”

Until next Friday. God willing.
Bob

The Girls and the Grandkids on July 4th Weekend


Jenny, Andrew, and Megan


Emily and Austin


Sharon and Avery