Home

It has been wonderful to be home, however I am concerned at how this last hospital stay was so difficult on me emotionally. I have a follow up appointment with the oncologist on Thursday, and I am going to ask her if it is possible that I'm depressed. A social worker informed me last week that high doses of Vitamin A can often bring on a swift bought of depression. Judging from all the emotions I had in the hospital, I think its best to check it out fully and talk to my doctor. It isn't safe to fool around with such things.

And even though I'm home, I'm still isolating myself from the general public since we don't know if my immune system numbers have finally reached safe levels. I had blood drawn last night, and should get those numbers on Thursday. I imagine all is well as I haven't spiked a fever, but better safe than a trip back to the hospital if I get really sick.

Since being home, I haven't been sleeping well. I guess I'm still on hospital time; IV change at midnight, blood draw at 3:00 a.m., vitals at 4:00 a.m., etc. I think a sleeping pill is in order for this evening.

And since this is Jenelle's website, I thought I'd give an update on her as well. Unfortunately, Jenelle is showing an increase in seizures lately. We haven't heard her in the middle of the night, but she has had a lot at daycare. We have an appointment for Dr. Shields in early March, so I'll continue to monitor it and discuss it with him then. Perhaps another adjustment in medication is in order.

Thanks again for the thoughts and prayers. I'll update again after our follow up this Thursday.

Going home!

Well, I finally reached 300 neutrophils, and even though they would prefer 500, they are letting me go home today! Right now, Brett is trying to figure out a way to come up and get me. He is very busy with the kids' baseball today with photo day, ball toss fundraiser and a scrimmage for Jack. If he can't find me a ride, he'll be up here around 3:00.

Thank you for the consistent thoughts and prayers. Keep them up because I'm not out of the "neutropenic" woods yet until I reach 500 and a white blood cell count of 4.0, so I still need to be isolated, but at least it will be easier at home.

Thanks again!

Still too low

My neutrophils are at 200 today, and still too low for them to let me go home. Praying they rise more tomorrow... or the next day...

Depressed

Well, my Neutrophils have been holding at 100 since yesterday. All my other counts have increased dramatically, which is good and shows a trend. If my neutrophils get to 300 tomorrow, I can go home. I'm hoping, and praying and dancing and doing everything I can to get them to go up. And I really, really miss being home. It's tough to be in the hospital when you feel good and the only thing keeping you here is a stupid number on a stupid paper. I'm beginning to hate to young resident who gives me the numbers each morning. As if it's his fault.

Brett is here with me and is trying to cheer me up. If I can't go home with him tomorrow, he'll be driving back to Orange County for baseball practice, then back up to stay Thursday night. I'm not sure I'll be able to stand another day and night here. I'm really tempted to discharge against medical orders.

So, that's how I'm doing. Not so good and not as positive as usual. Please keep the prayers, positive thoughts and dances coming. I really need it!

Thanks!

Definitions

WHAT IS A NEUTROPHIL?

A neutrophil is a type of mature (developed) white blood that is present in the blood. A cell is the smallest, most basic of life, that is capable of existing by itself. White blood cells help protect the body against diseases and fight infections. Neutrophils are essential in protecting the body against disease and infections by removing and destroying some types of bacteria, wastes, foreign substances, and other cells. Neutrophils accomplish this by eating these substances. They are the main type of white blood cell that protect the body in this way.

WHERE ARE NEUTROPHILS MADE?

Neutrophils are made by the marrow (a tissue that fills the openings inside of bones). Neutrophils are sometimes made outside of the marrow as well. After the neutrophils are formed, they are released into the circulating blood.

WHAT PERCENT OF WHITE BLOOD CELLS ARE NEUTROPHILS?

Approximately 50% to 70% of white blood cells are neutrophils. Neutrophils are the most common type of white blood cell. The amount of neutrophils on blood work tests is known as the ANC (absolute neutrophil count). On most blood work tests, the ANC will be presented in terms of the amount of neutrophils per mm3 (cubic millimeters) of blood. The normal range for the neutrophil count is 1500 to 8000. It is important to keep in mind that the ranges mentioned above will be different depending on the machine used to do the blood test. Always use the normal range printed on the lab report to decide what range is normal.

Neutrophils are also essential for a process known as proteolysis, in which water is added to bonds that make up proteins so that they can be broken down into smaller substances. Proteins are extremely complex, naturally occurring substances made of amino acids that are essential to the body's structure and function.


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Still at zero Neutrophils! Please do a dance or whatever to help get them growing for me! Thanks!

Tease

My neutrophils are just tormenting me. Yesterday, on Valentines Day, I got the news that they had finally increased a bit to .1 (which equals 100 neutrophils - remember I need 500 to bust out of here.) but this morning was back down to zero. I can't tell you how devastated I was to get that news.

The good news is that I'm still healthy; no fevers or rash. And my white blood cell count did increase a bit, so at least that is going in the right direction. Remember, neutrophils are a special type of white blood cell that help fight infection.

Please keep those positive thoughts and prayers coming that those neutrophils start to rise so I can go home. Thanks so much!

Feeling Down

Down on neutrophils that is. Today my neutrophil count was still zero, and even my doctors are a bit surprised. They had hoped for some increase by now. There are medications that can be given to help boost neutrophils, but I'm told that with my type of leukemia, they are not recommended because they could also "boost" any hidden cancer cells as well. So, for now I wait and pray for an increase my neutrophils. Anything but another zero again.

On the up side, I had a slight fever a few days ago of 100.2, and had to go through a fever work up where they run lots of tests to find out if there is any infection brewing. They also started an antibiotic and I've been on it for 3 days and the low grade fever is finally gone. I got some platelets on Tuesday and because it was not type specific, I had what looked like the start of a rash with a bunch of red spots on my arms and legs. Thankfully today that is looking better. And yesterday I got two units of blood so hopefully that will help give me a boost. So no infection, no rash, all we're waiting on is my neutrophil count and then I can go home! That can't come soon enough!

Thanks for the thoughts and prayers. I'll update when I can - KCA!

For Brett

My very own "falling star"

In case you've forgotten the joke behind this, click here.

New Hospital

Brett and I arrived this afternoon at UCLA Santa Monica. While is isn't as new as the Ronald Reagan Hospital in Westwood, I do have my own room, TV and Internet access. I'm really getting tired of hospitals. Or more specifically, being a patient in a hospital. I pray this stay is short.

My Mom is arriving tomorrow to stay with me, so it's safe to tell you what happened earlier this week. I didn't want to alarm my Mom, but Brett insists I share the news that I now get to have a "falling star" outside my hospital room because I fainted on Tuesday when my home health nurse was taking blood.

It was the strangest thing, and I've never fainted in my life. The nurse arrived early in the morning and I hadn't eaten. As I sat at our table watching her draw blood from my PICC line, I got a little light headed and sweaty. She asked if I felt faint and I told her I wasn't sure. We decided to try to move me to the couch and according to Brett I made it within a step of the couch and then fell back (where the nurse caught me.) I honestly don't remember even standing up from the chair. The nurse called my oncologist right away and she wasn't concerned. She ran an extra test to make sure I wasn't anemic. I stayed in bed most of the day and felt fine that evening. We believe it was the low blood sugar from not eating before the blood draw. We're being cautious now so I lie on the couch for all blood draws at home.

It was a wake up call and made me realize now why I'm restricted from driving. I have been feeling great, but it seems with blood cancers things can change quickly. I look forward to talking to my oncologist to get a better idea of how long I have to stay. We really want to keep visitors at a minimum to help me avoid infections so I can get home sooner. I'll update when I get more information from my oncologist.

Thanks again for the thoughts and prayers! KCA!

Back tomorrow

My doctor called this afternoon and I am close to Neutropenic so she would like me back in the hospital tomorrow. It also looks like I'll be at Santa Monica.

The good news is that I'm feeling good, and most importantly no rash. Hopefully I'll keep feeling good and can get home as soon once my counts return to normal.

We'll keep you posted. Thank you for the continued thoughts and prayers.

Update - waiting to be neutropenic

Sorry not to update here lately; I honestly haven't really touched a computer in days. Yes, the home computer crashed again... for a 4th and 5th time. Whatever Brett is doing to try to fix it, it isn't working. But hey, it's not like he doesn't have other stuff to worry about. ;) He is truly amazing.

Things went so well with my 3rd and 4th doses of chemo the doctor discharged me early on Saturday night instead of Sunday morning. It has been wonderful to have that extra night at home. When I was first admitted back in November, the hospital gave me this huge blue folder with a ton of information about cancer, cancer support groups and information on my specific type of cancer. The morning before we returned for Round 2, I read a booklet on "Neutrophils" and how chemo affects them. I now understand why it is possible to do the chemo doses outpatient, and then how you sick get a week later. It takes time for the chemo poison to kill the cells when you are somewhat healthy as I was going into this last round.

Right now is a very critical time. I really need to watch exposure to bacteria and viruses, and I have a home health nurse that stops by every day to draw blood from my PICC line. Jack thinks its cool that Mommy has these tubes hanging from her arm - not sure I like it so much. We are literally waiting for my white blood cells to drop to nothing, and during that time I could be at greater risk if I'm exposed to any germs so I'm stuck inside. Ironically, home is healthier and cleaner than the hospital, so I'm told.

Being home has been a little hard right now as I was getting used to my energy and routine from just more than a week ago. I miss not being able to go out to lunch, or Starbucks, but realized its for my best health. Brett even suggest I go with him to Blockbuster today, but I really didn't want to risk it. It's not a matter of "if" I will get sick or neutropenic, but when. Once my white blood cells and neutrophils are depleated by the chemo, I will return to the hospital for observation and care. That is when I may need things like transfusions, platelets and the like. My oncologist thinks I'll be back by this Friday. Once back in the hospital, I will just be there until my white blood cells return, so if I can stay healthy and not add illness to it, I'll be back home sooner.

So far I've been doing well with the chemo. Some nausea, but no vomiting and absolutely no rash this time! I think that has seriously made this much more bearable. So for now, I am just waiting at home to get "sick." What a weird concept.

I will update when we head back up to UCLA, or if things change significantly. Thank you again for everything. KCA!