Jenelle lost her 1st Tooth!

Jenelle lost her first tooth today! A couple of days ago, I noticed it was loose, and Grandma got to pull it this morning while we were at my follow up appointment. I guess we'll be getting a visit from the Tooth Fairy tonight! Here is a photo of the missing tooth - looks like the new one is coming in.



We had a wonderful, low key Christmas. I sat up and watched gifts in the morning, and rested for most of the afternoon. Our neighbor made us dinner last night as Grandma and Grandpa took Jack to Christmas dinner with the family. Here we are, the bald family, on Christmas Eve.

I had my first follow up appointment today, and my blood work was so good I didn't need blood or platelets! It looks like I might be staying home for two more weeks before starting the second round of Chemo. We met with the nurse practitioner instead of the doctor today, and that information was a little contradictory, so we aren't holding our breath, but I might have more time at home that originally thought.

The nurse told me to get out more and to get more exercise. I have been having some sciatic pain so I need to work that out a bit. This afternoon I went out to lunch for the first time and it was nice to be out. Slow and steady on the road to recovery. Thanks for the continued prayers.

Mommy is HOME!

I was released on Monday, and am home resting. It is nice to be in my own bed. I can't believe how wiped out I am by this experience. It really takes a toll on the body. Please keep me in your prayers. I go back for round 2 in early January.

Jack was happy to have me home. When I suggested pizza for dinner, he thought it was too unhealthy for me! Sweet child.

Merry Christmas to you and your loved ones.

Please use this e-mail

jenellesmommy@gmail.com

Our home computer has crashed twice, so I haven't had access to that e-mail for two months. Sorry for the inconvenience, I will change it on the side bar.

Paging Dr. House...

After 5 days of fever and rash the doctors still aren't sure why Kelly has a rash and fever. They think it was an allergic reaction to the antibiotics. They stopped almost all of the drugs, but she still has a fever. In a four hour period Kelly can have a normal temp, start shaking because she is freezing, to a fever over 102, back down to normal. Kelly and I have been pretty frustrated by the answer from the doctor of "we will stay the course and ride this out". I have never heard Dr. House say that. Not much we can do. The rash is getting much better with the fever still hanging around. Kelly could have been home by now if it weren't for the darn fever. She got blood and platelets today to get her numbers back up. They now think she might go home Monday or Tuesday at the earliest. We really want to go home. Thanks for all the prayers.

Family united in baldness...

Jenelle's daddy #2. We are on day 22 of KCA(kicking cancers ass). After I told Jack mommy cut off all her hair he said we should do the same. He said we can be "the bald family". We have some good news. Kelly is doing really well. Her blood levels have increased to the point she can go home. The problem is she has a fever and rash that won't go away. Kind of like that relative during the Holidays. The rash covers her entire body and itches constantly. She is having a bone marrow test tomorrow. The Dr. expects the leukemia to be either in remission or close to it. We still have to do a second round of chemo either way. Jenelle cried the entire weekend. You think it was because she didn't poop for three days? We need everyone to start praying for Kelly's fever and rash to go away so she can get home. I am very proud of Kelly and how great her attitude has been. She is amazing. Kelly has approved this message.

Asking for prayers when Benadryl won't work!

It's been tough. I finished the first round of Chemo a week ago, and day 6 and 7 were beyond tough. Let's just say I didn't eat, but was running to the bathroom with the runs and to vomit... At the same time. I've had days where I slept all day.

Right now is my toughest challenge, I am currently experiencing a full body rash from the chemo and a reaction to Vancomycin. The old Lamaze breathing techniques have been helpful. Today was the absolute worst, and I would but the itching and burning at a 10 on the pain scale. If you want to pray specifically, please pray this rash resolves soon as Benadryl and Hydrocortosone barely touch it. I can't take much more of this torture.

I started slowly losing hair yesterday in big clumps. After washing my hair today, and then brushing it out, I had a hair ball about 15 inches wide! My Mom is staying with me right now, and we decided to cut it all off tomorrow. Mom is going to the wig shop first to buy me some scarves and a night cap cause I hear it can get cold at night when you are bald.

Once everything resolves, I can go home until my second round of Chemo in January. I'm still positive I'll beat this, and I like to think that next round, I'll know more what to expect, so we can combat things sooner!

Thanks for the prayers, and please keep them coming.

Why I feel so safe here at UCLA

Bullet points, because my typing on the lap top sucks. Chemo brain already?

• Brett and I met at UCLA at a sushi bar in Westwood called Cowboy Sushi back in 1991. And those of you who know Brett, knows he doesn't like sushi - must have been the sake.
• My room is 6111 and "11" is my lucky number
• On the other side of my "peeps" here at Oncology, is the Neuroscience ward. We all know how I love my Neuros at UCLA! I just feel like this is one big home for me.
• I get to walk past the Video EEG monitoring room every day on my daily walks. I love looking in, and thinking to myself, "I know what that is!" and thinking seizures suck.
• The Neuroscience ward looks over Fraternity Row; specifically the Theta Chi house and the Sigma Alpha Epsilon house. I was a "Little Sister of Minerva" at the SAE house at UCSB. In fact, I partied at that particular SAE house back in 1991 - possibly the same weekend I met Brett.
• The SAE house has beautiful white Christmas lights everywhere and looks gorgeous. They had a beautiful tree as well, but it was gone tonight. Hmmm... maybe a huge party?
• Part of my unit looks out of Dr. Shields' clinic.
• I can see Westwood from the hall, and last night they had the premiere for "Marley and Me" with Jennifer Aniston and Owen Wilson. Guess they were too busy to stop by.

Sleep, it haunts me.

I can attest, that you can have some super trippy dreams on Chemo. Some are very detailed, and all have to do with food. Like me eating something I can't have right now (steak, etc.) I can even have a most vivid dream, in like 10 minutes. Last night was not a good night for sleep. I saw every hour on the clock last night, and finally got two hours between 4 and 6 a.m. Part of it was my being so sleepy the day before, which I later figured out to be 3 doses of Benadryl for a rash I had. I took 3 doses of Benadryl, an Ambien.... yeah, I slept a lot yesterday and was hung over too. So I did not take the Ambien last night and look what happened.

I'm too tired to tell you about the dreams. Sorry. Trippy. But know, that sleep haunts me!

Daddy's first blog

Jenelle's daddy here. Kelly is feeling better today and I am taking full credit for it. She told the Dr. I was the best medicine. Who am I to argue with her. Kelly's energy is up, her appetite is better. She took a walk today for the first in three days. She was even frisky enough to shake her naked booty at me. Followed by "you can look, but can't touch." Such a tease. I brought all the Christmas cards up for her to open, which she really enjoyed. She is starting to understand how much she is really loved. Your prayers, comments, and cards are really helping her keep her spirits up. Monday night I called Kelly to let her know I heard Jenelle say "mom, mom, mom". Instead of the usual mum, mum. I called Kelly to let her know and Jenelle did it again and Kelly got to hear it. It was beautiful to hear. I personally want to thank everyone that has been so wonderful to us. You have been amazing. We will continue to fight this cancer and kick it's ass to the curb. Kelly has approved this message.

Please no calls and visitors

I finished Chemo on Sunday and am really hitting the low part of this. I'm getting lots of phone calls with people wanting to visit. Please, no calls or visitors this week. I'll let you know when I turn the corner. Thanks!

Moving a hospital

This link is to a video on You Tube of how UCLA Moved hospitals from the old one to the new one where I'm staying. It's fun to watch - enjoy!

http://www.youtube.com/watch?v=vKA_nQk15AY

Photos

My Mother in Law e-mailed this photo of Jack last night shortly before their Christmas program. I am the "Prayer Friend" for his class - Jack looks proud.



Our daycare provider sent this to me of Jenelle being happy the other day. I think she looks like my cousin Meghan in this photo.

Falling Stars

The doctors here want me to take walks around the hospital as much as possible. All of the rooms here are their own isolation, so everyone always has a door closed. All occupied rooms have the patients first name, and some have little signs, etc. Mom and I noticed that a few rooms had "shooting stars" on the out side of the door. We weren't sure what it meant, so we asked.

A nurse told me that it was a "Falling Star" and it meant the patient was a fall risk or has already fallen (i.e. out of bed, on the floor.) Mom didn't quite understand that at first, and thought it meant the patient had "died." Needless to say, on our walks she would get emotional and she wasn't too impressed with all the "Fallen Stars" on my unit. Once I realized her mistake, we had a good laugh.

I slept a lot today and some emotions are setting in. Some nausea as well. Brett is doing well and the help has been amazing - thank you all. Thought you'd get a kick out of my funny "falling star" story. Gotta keep the sense of humor!

Blood & Platelet Donations Needed

I am some what embarrassed to say, that in my 38 years of life I have never donated blood. When I was young I had the excuse that I was too thin, but even as I put on weight with age, I never got around to doing something so simple, and so life saving. And now here I am with a specific type of cancer that requires lots of transfusions, platelets and other blood products. So far I've had 4 units of blood, 3 units of platelets and 3 units of other blood products. I haven't even been here a week.

We've gotten a lot of requests on blood donor information, so here you go. My blood type is A Positive. I need both type specific blood and platelets. If you are in the area, and would like to specifically donate blood for my use, you can only do so at UCLA. If you want to donate blood at your local red cross, you can ask that it be credited to me (it does not have to be the same type.)

The UCLA Blood and Platelet Center is located at 1045 Gayley Avenue in Los Angeles. To make an appointment, call 310-206-6287 or 310-825-0888 x2. Their website is http://www.gotblood.ucla.edu/


Here is the criteria for giving blood:

• Be at least 17 years old (there is no upper age limit)
• Weigh at least 110 lbs.
• Be in general good health
• Have not taken any aspirin or anti-inflammatory medications withing 36 hours of donation
• If Diabetic: No Insulin (oral medications are acceptable)
• If asthmatic: No oral medications (Singulair is acceptable)
• Must be willing to allow approximately 2 hours for the entire donation process.

If you have any questions, call your local Red Cross or the UCLA number above. Thank you so much.

Visiting with the kids

My in-laws brought Jack and Jenelle to visit me last Saturday. The photo above is me and Jack in my new home. On Thanksgiving, we paged Jack's child psychologist and asked how to handle telling him the news. He suggested to be simple, and honest and not to dwell. When I saw Jack on Saturday, I told him "Mommy has Cancer, so I need to be in the hospital so they can make me well." I didn't want to overwhelm him with words like Leukemia. I figure with a word as simple as Cancer, he at least knows what to say to his friends. I also told Jack that I will likely lose my hair. When I suggested that he come help me shave my head when it starts to fall out, he really liked that idea. He has been doing well with the news, but has moments where he misses me.

Jenelle has been amazing, so I'm told. We had some issue with her feedings. I usually make Jenelle's pureed food once a week for the week. Obviously, I'm not there to make it and she ran out. There is only so much oatmeal a person can have before getting constipated, and that is what happened to Jenelle. Poor thing. My boss (who is on maternity leave with her one month old) took on the job of making some pureed foods for Jenelle and had them delivered to the house, so now she is back to a better diet. What wonderful support we have around us. One very sweet thing I'm told is that whenever people have been talking about me in front of Jenelle, she says "Mum" a lot. I realize she can't possibly understand why I'm gone, but to know that she is vocalizing my name "mum" really tells me she misses me.

Jenelle's Neurologist Dr. Shields stopped by for a visit yesterday. It was so wonderful to see his warm smiling face. I know I'm in good hands here. I've had a lot of visitors, and I am stocked well with reading material and such. I really haven't had much time to be bored. So far so good with the treatment. Just taking it one day at a time.

Thanks for the prayers - please keep them coming!

How it all went down...

At lot of people have beein asking how it came about that I ended up getting tested for leukemia. It happend very fast really, but looking back I had some symptoms for a few months. Mny of the symptoms include fatigue, joint pain, flu like symptoms, excessive bruising and of course a low white blood cell count, which you can't tell unless you have a blood test.

Mid summer, I started to notice a lot of joint pain, especially in my hips. I remember when I drove to Visalia in September with my Mom, we made the drive without stopping, and when we got home I had horrible hip pain. That had been around for a while. Of course, I've always had fatigue, but I never really thought it was "my norm" with the kids. All summer, I had a lot of bruising on my legs and arms, and it started to get worse and more out of control in the last few weeks.

The week before Thanksgiving, I found a lump in my arm and my breast, so I made an appointment with my general doctor. She saw me Friday before Thanksgiving, and at the time I showed her my bruises. She decided to do a CBC. The next day, she called me at 7:00 a.m. and sent me to Hoag because the results indicated that I had a super low white blood cell count. At Hoag, they re-checked the labs, and found the same results. The ER doctor sent me home because they were not able to do a bone marrow biopsy, but he told me I needed one as soon as possible.

The Monday before Thanksgiving, I called my hematologist to get an appointment, and the soonest they could get me in was Wednesday. As a funny, on Tuesday the hematologist office called me and told me they wanted to post pone my appointment until after Thanksgiving. Not wanting to wait that long, I hung up on the receptionist and told her I was coming the next day. Not once, not twice but 3 times (and I usually don't do things like that!) Brett didn't want us to wait around either.

When we met my Hematologist, Dr. Quan on Wednesday, she sprung into action once she saw my labs and did the bone marrow biopsy right there in the office. They gave me a local and some Ativan, so it wasn't so bad. Dr. Quan was so adamat about getting the results before the holiday, she had a nurse drive my biopsy to the lab. After some lunch, I went home to rest. Dr. Quan called Brett's cell around 5:00 with the results. He was driving home from picking up Jenelle from daycare, and she told him to pull over. While I hate that he heard the news by himself, I'm glad he was able to break the news to me.

On Wednesday night, we went from our home to admit me at Hoag. At that time, we didn't know the specific type of Leukemia, and wouldn't know until the next day. Either way, treatment was going to be the same, so Hoag did their best to prepare me for Chemo. Once we determined the sub-type, Hoag transferred me to UCLA ASAP, and you know the rest.

From the moment I was hospitalized, I started "pre-chemo" with a drug called Atra and once at UCLA a Vitamin A regime. The sub-type Leukemia I has responds well to both. I've learned that with Leukemia, there is no catching it early or late, it just seems to come on with a vengence. Of course, because this is a blood cancer, I have been given transfusions, platelets and something called cryopecipatate. All are blood products. I have been having problems with too few platelets, and clotting in the wrong places (DIC). This is just something they expect to see and wil manage carefully.

When I have more information, I will post about donating blood. I cannot have flowers or food because of the bacteria involved. They call it Neutropenic. Again, this hospital is absolutely wonderful, and I am at such peace being here.

Thanks again for the thoughts and prayers. Please keep them coming!