Saturday, April 29, 2006

holding flowers

holding flowers, originally uploaded by jandjgilbert.

Friday, April 28, 2006

Rainy Day

I woke up this morning to loud crashes of thunder. As I looked over at the crib David was standing there looking out the window.

"Thunder mommy!"
"Thunder is cool."
"If you say so."

Thursday, April 27, 2006

it's a boy!

We had The Sonogram this morning and got to see some very clear and cute pictures of the little one. He is healthy and active, weighs one pound, and his heart rate is 147 beats per minute. The due date is revised to August 31, so Skylar and Cory (and Kenny and whoever else) may be getting a nephew for their birthday! He looks just like his big brother (did at 22 weeks).

Tuesday, April 25, 2006

Glomerular amyloid deposition, AL type, positive for monoclonal lambda immunoglobin light chain

My dad is sick. He is going to be ok, but before he is well, he has to be made more sick. This is how healing works. I haven't mentioned it before, because I wanted his permission to talk about it in this forum, and it is rather complicated. Because it is complicated, I want to take a bit of space here to explain it to as great a degree as I am able. This is the result of a hodgepodge of research and talking with him and his doctors. I don't pretend to understand it all, I am confident that my explanation will contain errors, and I'll update this post as I gain clarification. Also, I won't be hyperlinking in the post. Instead, I'll footnote the links at the end.
Abstract: The plasma cells in dad's bone marrow are producing too much AL Amyloid proteins. Normally, these are used to create immunoglobulins. The excessive numbers are clogging up his kidneys. To fix this, doctors will harvest stem cells, administer chemotherapy to kill the defective plasma, and transplant the harvested stem cells to rebuild his blood. His kidneys will be ok. He will have a normal life after treatment.
What dad is officially diagnosed with is Glomerular amyloid deposition, AL type, positive for monoclonal lambda immunoglobin light chain. Lets break that down, shall we?

Glomerular: pertaining to the Glomerulus, a tiny ball-shaped structure in the kidney that is composed of capillary blood vessels actively involved in the filtration of the blood to form urine. The glomerulus is one of the key structures that make up the functional unit of the kidney.

Amyloid: Any of a number of complex proteins that are deposited in tissues.

Deposition: for molecules to settle out of a solution and be deposited. The amyloid proteins are not able to be dissolved in liquid and flushed out by the kidney--they are simply collecting. Amyloid may be deposited widely in the body, or the deposition may be organ-specific and limited, for instance, to the pancreas, as in type 2 diabetes, or the central nervous system, as in Alzheimer's disease, Parkinson's disease, Huntington disease, Creutzfeldt-Jakob disease and bovine spongiform encephalopathy (mad cow disease). In this case, it is specific only to the kidneys. I think this is because it is normal for there to be some extra amyloids of this type in the body and the kidney normally filters them without a problem.

AL type, positive for monoclonal lambda immunoglobin light chain: all of this simply refers to the specific type of amyloid proteins that we are dealing with. These are "light chain" molecules that are combined with "heavy chain" molecules to build immunoglobulins--components of our immune system.

So that describes what dad has--a whole gob of proteins are building up in his kidney. If something is not done about it, then they can destroy the kidneys, the liver, the pancreas (leading to diabetes), even the heart and the brain.

However, not to fear, we can stop this from happening. He showed symptoms early, and he has a particularly treatable form of the condition. Chances are very slim that there will be severe or chronic problems. Even his kidney will be ok.

So, where the heck are all the proteins coming from and why are they clogging up his kidney? It is really complicated. There are tissues in our bone marrow called Myeloid Tissues, which produce the stem cells that eventually become all of the different kinds of blood cells. One of these cells is the plasma cell (also called plasma B cells or plasmocytes). Plasma cells secrete antibodies, which are proteins that the immune system uses to identify and neutralize foreign objects like bacteria and viruses. Specifically, they produce AL-type Amyloid, which combine with other proteins to create immunoglobulins. There is a common form of cancer of these plasma cells call Multiple Myeloma. Dad does not have that. What he has is called AL Amyloidosis, which is similar. Instead of the cells reproducing out of control and forming cancerous tumors, they are out-of-control producing AL Amyloids. These are clogging up his kidneys.

AL Amyloidosis is a rare disease; only 1200 to 3200 new cases are reported each year in the United States. There are a variety of symptoms. I believe that dad's initial symptom was edema--swelling of the his ankles and legs with retained fluid that his impaired kidney could not properly process.

So, what to do? It is very simple, actually--destroy the cells that are creating these defective plasma cells. But then, where is he going to get new Plasma cells--plasmocytes-R-us? No. All cells begin with stem cells. The tissues in our bone marrow produce the type of stem cell which eventually differentiates into all of the different kinds of blood cells--including the defective Plasma cells. So dad is going to Wichita, where doctors will harvest some stem cells. Dad is given a drug which will stimulate the production of an excess number of stem cells, which will move out into the blood stream. His blood will be pumped through a machine that can separate out these stem cells, which will then be frozen.

Then dad will be given a high dose of chemotherapy, which will destroy his myeloid tissue, killing the cells that create the excess Amyloids. After a few days, the harvested stem cell will be put back in his body, where they will immediately get back to work producing new blood cells. The process of being frozen for storage is stressful to the stem cells, which are fragile. Only the strongest and healthiest cells will actually survive. This means that the defective cells which caused the problem in the first place will be destroyed.

The schedule is like this: On the first of May, they will harvest the stem cells and insert a catheter in his shoulder. This will act like a spigot for the insertion and removal of all of the fluids that they'll be putting in and taking out. On May 8th, they will administer the chemotherapy drugs through the spigot. His immune system will be destroyed. Three days later, the stems cells will be put back in. Then he just waits around. He will get daily infusions of drugs and hydrating fluids while his stem cells rebuild his immune system. For up to three weeks after the Chemo on May 8th, he will be under constant supervision because of potential side-effects of the compromised immune system. He has to have someone around to get him to the emergency room. The nurse promised that he would probably have to be in the hospital with a fever at some point during those three weeks. However, the chances of serious damage or death are less than three percent. It is considered very safe.

Then, three months later, he will do it again. After these treatments, about half of the patients are completely cured, and the rest are able to manage the disease with medication. There is a strong possibility of relapse within ten years, which would mean a repeat of the treatment--again, with very good success rates.

We, the family, went to his treatment facility last week for "Family Day," which was simply a discussion of the treatment process with his doctor. Part-way through the discussion, I observed a radically different perspective between him and us. Have you ever seen those "maps" of the world as a New Yorker sees it? New York is great big in the center and everything else is just negligible slivers around the fringes. Well in the doctor's vision of the process, the giant, huge thing in the middle was the stem cell harvesting and transplant. That is breakthrough technology he is actively researching, is primarily focussed on, and discussed the most. For the rest of us the stem cell stuff was, like "yeah yeah yeah, you are taking some cells out and putting them back in, don't tell the president." For us, the elephant in the room was CHEMOTHERAPY. Oh my, isn't that what they give to cancer patients? Isn't that horrible--almost as horrible as the cancer itself? But his doctor didn't seem too concerned about the chemo. Not a big deal. They have been doing it for decades, they know how to manage it, he'll be fine, let's get back to the stem cells, aren't they cool. The conversation was a bit like watching engineers talk when they don't realize that one is using inches and the other is using centimeters--a little frustrating and bewildering.

In the end, all indications are that everything will be fine. But, before dad gets to fine, he has to go through some suffering. It is going to be hard, and we all wish he didn't have to do it but we all thank God that it is not something worse. Months ago, when he told us that he was getting a bone marrow biopsy, I think all of our hearts skipped a beat. So, in the end, we are relieved and thankful.

I'll update as I am able.


Amyloidosis Support Network. Take this with a grain of salt. While it is my primary source of information, I think that it was developed before new and more successfull treatments of this disease. It is one the most uninspiring "Support Networks" I have encountered.

Definition of Amyloid

Wikipedia on: Bone Marrow, Plasma Cells, pluripotential hemopoietic stem cells

Definition of the Glomerulus

Light Chain-Associated Renal Disorders: Article by Malvinder S Parmar


Last week David got to play with Allison, a little girl from our church. When I arrived to pick him up they were just finishing up lunch and both of them had big bowls of applesauce. David finished his, asked for more, and returned to the table with a freshly filled bowl. Upon seeing his new helping Allison decided she wanted more too. Her mother was hesitant because she knew Allison would not finish another bowl.

Without hesitation David got out of his chair, went over to Allison, asked her if she wanted more and took her bowl into the kitchen. He then tried to open the fridge door and serve the applesauce himself.

I will update you after prom night to see if his consideration for the opposite sex remains the same after fifteen years. Of course, I'm sure his future wife will want to weigh in on the subject as well.

Needless to say it was one of the sweetest things I have watched him do. I hope life does not taint him too much.


Currently the temperature is 45 degrees.

"Autumn changed into Winter......Winter changed into Spring.....Spring changed back into Autumn and Autumn gave Winter and Spring a miss and went straight on into Summer...."

Monday, April 24, 2006

Baby growth charts to be revised

BBC NEWS | Health | Baby growth charts to be revised: "Current charts are based on calculations using the growth patterns of babies fed largely on formula milk from 20 years ago.

But bottle-fed babies put on weight more quickly than those that are breast-fed, meaning breast-fed children could be shown as underweight."

Sunday, April 23, 2006

no hats allowed, aparrently

Resurrection, originally uploaded by jandjgilbert.

To celebrate Pascha, David rises from the dead.

Kangaroo court

Kangaroo, originally uploaded by jandjgilbert.

Hey Aslan! Here is another one over here!
What? . . . Her brother owes you money? . . . oh, well . . . I guess with some landscaping, she could just stay like this for awhile.


Superman, originally uploaded by jandjgilbert.

Sunday, April 16, 2006

evening of firsts

10:05 pm. First time falling out of bed in his sleep.

No more monkeys jumping on the bed

I just got home from Kansas City and as Jason and I were talking in the kitchen he heard a thump on the floor above us and ran upstairs to check out the noise. Suddenly he yelled to have me come up.

As I reached the top of the stairs Daivd came into view. Something told me Jason had not taken him out of the crib and as I rounded the corner into the bedroom I could see the mess. David had crawled out of the crib, turned over the trash can and started to rummage through it. Triumphantly he displayed a used band-aide.

Jason began work on dismantling the gate to the crib. When he was done David jumped into bed and started to jump up and down and then proceeded to do a swan dive into the side-rail.

All we could do was turn away and try really hard not to laugh out loud.

Please keep us in your prayers as we transition to the new 2.1 version of David - Freebird.

Saturday, April 15, 2006


The other day, as I locked my self in the tower to work on homework, I could hear David and Colin laughing and screaming outside. Alex stated they were playing in the sprinkler on the sidewalk. I decided it was time for a quick break so I stepped across the street for a soggy hug.

As I walked up to David I could see his shorts were off and his shirt was hanging across his buns. Then he bent over and I saw something else hanging there. I looked at Nikki and she said the diaper was soaked, the shorts wouldn't stay on, and what the heck, he's just a tot.

For a child that throws an absolute fit if you get water on his face during a bath he sure was having fun putting his face into a mud puddle. The kids stayed out there for quite a while having a ball.

Later that day when Jason went over to get David he was told by Nikki that David pooped today. Then Nikki made David tell Jason where this act had occurred.

"On the sidewalk."

Pillow Talk

On the mornings I lay in bed wishing for a few more hours of sleep Jason gets up and deals with David. This usually involves a lengthy conversation about how David wants something to eat and to crawl into bed with me and Jason wants to change is diaper first. David usually concedes within five minutes and is then tossed on the bed to "see mommy".

He always crawls up to Jason's pillow, lays his head down and starts asking me how I am doing.

"What's wrong mommy?"
"Mommy is starving and sleepy."
"What's wrong mommy?"
"Mommy is starving and sleepy"
"Want binkey?"
"What?, No. David, is a binkey the answer to all problems?"

He is very mature for his age.

Thursday, April 06, 2006

Naked Napkin

Naked Napkin, Jaime's brother's new blog is worth looking at if you are into the art "scene" or whatever the kids are calling it these days.

Monday, April 03, 2006

Slumber Party

I'll start this off with, I Hate the Time Change. As a mother I think the concept is evil.

Last night David was having trouble getting to sleep. As fate would have it about the time he fell asleep I noticed he was in great need of a diaper change. That of course woke him up so I decided to bring him to bed with me.

As we crawled in I told him no talking, it was time to sleep. Not even a minute passed before he started chatting about binkies and how he was kicking my leg. When I told him to be quite he rolled over to face me and told me he loved me over and over again while he rubbed my head, arms, and face.

It's like he knows when I'm about to eat him and he pulls out every bit of love and cuteness from the universe and throws it at me. When that still doesn't work he gives me the puppy dog eyes.