Carlene's weekend.

Howdy all,  Here is an update on Carlene. She had her second big bout of the heavy Chemo last week which thank goodness didn't bring the Nausea with it like the first time around. She had a good week but was extremely tired with a slow recovery in the days that followed her treatment. It was our weekend to have everyone home so the family was a whole starting last Thursday night. Having Carlene's sisters home really gets her up and laughing again. We had a youth rodeo on Sunday and Carlene had enough strength to ride in one event and she did awesome. It is always great to see her ride and keep on going throughout all her bod is going thru. She makes quite a lovely bald women too rivaling Lt. Ilia from the first Star Trek movie. Carlene just doesn't were the sassy outfits like Ilia though!!! Monday she had her mild dose and somewhere in the middle got a bad cold to add to the fatigue. She's a toughie though and is handling everything very well and with a smile. She has really become a cuttlebug lately and loves be close to mom. Today she is going to the DR. to get her cold checked out and also to check on her white cell count to make sure she is in the green.  More updates to come later and again thanks for all the prayers and messages of support. We love you all!!!

Anti-nauseu Meds Worked!

She is finished with day 1 & 2 of the second round of chemo. Her nausea meds were changed this time and they worked wonders. She has not felt nauseous and is doing much better than round 1. She is drained of all energy and is resting on the couch watching TV, but this will hopefully pass quicker than last time.

We received the results from her PET scan last week and it shows that the cancer is greatly reduced but is still present. This means that after she finishes round #3 of chemo she will need to undergo radiation therapy. Even if it is gone after round #3, studies show that the return of the cancer is probable if the PET after round #1 was not clean. I do not yet know what the radiation will entail, but will let you know when I have some answers.

She has started her daily shots of GCS-F to help with her white blood cell count. It is expected that she will drop low again, so we have cleaned and disinfected the house and are keeping her away from anyone that has been sick or been around someone who has. This is difficult when it is her sister. Alyna stayed home from school today with a sore throat and a stuffy nose, so I have her on one side of the house and Carlene on the other and they are both quarantined to their area and I am on the constant run back and forth to help my two patients. I am not convinced that Alyna is really sick, as she is my drama queen and is always wanting extra attention. She is quite convincing though even when she is not ill, so a little extra love and more of me often helps her "ailments" disappear when she forgets to "act". None the less, we are not taking chances and they are separated.

Olivia and Alicia are home this weekend and we have a rodeo on Sunday. Carlene is excited to have them around as she misses them very much. She can't wait until summer when they are here full time. She is not used to not being with them as they go to school together and she would see them everyday. Now that she is home schooled she does not have that opportunity. Their mother finally agreed to let them go with Carlene on July 4th to see the Jonas Brothers in Utah! At first she said was not going to let them go because it is her year to have them on the 4th, and Carlene was considering changing her wish because it would not be the same without her sister counterparts in attendance, but the girls called yesterday to say that she had changed her mind and was letting them go =) Carlene is excited that she can have her true Make-A-Wish and not have to alter it.

As for the rodeo on Sunday, she hopes to have enough strength to attend. Her best friend, Heather, has offered to tack up her horse and warm him up so all Carlene has to do is get on and run the pattern. That way she can sit back, relax, and watch the rodeo. Of course, this will all depend on her white blood cell counts. A nurse will be coming to the house on Thursday for a blood draw and then we will know where she stands on the possibility of attending.

Thank you all for your prayers and concern...we all appreciate your love and support.

2nd Round of Chemo

We were at the hospital from 8-6 today. This was the same chemo as round 1, but they changed her nausea medication. This time she has no nausea, just burby. We are at the Ronald McDonald House and she is resting after having pizza for dinner!

Day 2 chemo is scheduled for tomorrow at 8am and we should hopefully be on our way home around 4:00.

She had a fantastic time at camp is looking forward to attending next year as well. She can continue attending this camp until she is 19 years old. I am sure she will blog the details when she is back at the computer.

Camp!!!

WOW! It's been forever since I've blogged. I am feeling much better. The 2nd round should be better because I'll have better nausea medicine and I won't be sick. Today I had a PETScan to determine if I will need radiation or not. Hopefully it won't take that long to get the results. I'm super excited because tomorrow I am going to El Capitan for the weekend. This group called Teen Impact is putting on this camp for teens with cancer. I know I will have lots of fun. Make a Wish called and I get my Jonas Brother wish. They are going to fly me to Utah for a meet and greet and I think a concert, on July 4th. The people said that they didn't know how long I would get to "hang out" with them. The longer the better:) I hope that Oli and Alicia can come with me, it wouldn't be the same without them. All I know is that it would be the best 4th of July ever!!!! Hope everyone had a fantastic Easter. I went to a sunrise service and even though I wasn't fully awake, it was still amazing. God is Great.
Love,
Carlene
-I'll blog again soon:)

Home and Feeling Great!

We came home yesterday from the hospital and she is feeling back to almost normal. Today was the first day since chemo started that she ventured from home to have some rodeo fun. We went to roping lessons today and she roped for a short while then watched her sisters try out their skills roping from horseback for the first time (Olivia even caught one today!). She is hoping to get in the saddle tomorrow and enjoy some Levi time.

Happy Easter...remember His sacrifice that has saved us all!

Possibly Home Today

Her white blood count is now 8700...which is now within the normal range. We are waiting for her complete blood work to come back and for the doctor to come around on his rounds. This morning, the resident doctor thought it looked positive, but we have to wait for final approval for discharge from her doctor.

Improving

We are on the "possible" list for heading home tomorrow=) Her WBC is up to 1600 now and the doctor is hopeful that it will continue to improve. She continues to have body aches and a slight headache, which are both side effects of the medication that is supposed to be helping to increase her white blood cells. She is finding relief from these symptoms through Tylenol w/ codeine.

She met with representatives from the Make-A- Wish today and here are her wishes:

#1 meet the Jonas Brothers =)

in no particular order...go the Rachel Ray show in New York, a horse trailer with living quarters or a camper for the back of the truck (air conditioning for rodeoing), and she added a 4th wish to choose from and that was to get an all around rodeo horse.

Later this afternoon she received a call from Make-A-Wish asking her to elaborate on her Jonas Brothers wish. They asked why did she want to meet them, what she wanted them to know about her, and what she wanted to do with them. She said she wanted to "hang out" with them and go to their concert. Carlene had difficulty answering some of their questions and called the girls for their help...Alicia did not know the lady could hear her and was making her laugh with their silly conversation about marrying them. It was quite a hilarious few moments=) (especially when Alicia found out the rep was listening)

Update

I am so sorry for the limited information in the last post. I was using my new i phone and could not get it to work properly. I could only put in a heading and not anything else.

To get everyone up to speed...Carlene was feeling achy all over and had a headache throughout the day. Around 3:00 pm we called Children's for permission to take some Tylenol, they said as long as she did not have a fever. We checked her temp and it was 99.4, but she was bundled up on the couch in heavy blankets so we took them off and rechecked a short while later. This time it was normal at 98.6 so she took the Tylenol and we shrugged off the first reading as a fluke reading. At 10:00 pm she started aching again and her headache was worsening along with the chills. In the next 45 minutes her temp went from normal to 100.3. We called Childrens again and he said that if it went any higher to immediately take her to the closest ER. A few minutes later it was 100.5 and we left John and Alyna at home...much to John's dislike...and were on our way. The entire way to town (we live 25 minutes from civilization) she complained of having the chills and her headache was getting worse. I had been told by Childrens that she must not wait in a waiting room under these circumstances and should be rushed in immediately and isolated. I must say that AV Hospital did a phenomonal job of getting her back to triage and then into a private room, plus she was seen by the doctor immediately. They drew blood and did a chest xray. Her white blood count had dropped to 600 (5000 is the low side of normal) and her chest was clear. They started IV antibiotics and gave her pain medication. By 2 am she was set and ready for transport. That was the only wait of the evening. We finally arrived via ambulance at Children's at 5:30 am.

This morning at Childrens they ran more blood tests and her WBC is up a little to 900. We will be here for a minimum of 48 hours. Everything depends on her blood test results. They are running cultures on her blood which will show if she has any bacteria in her blood, if she does that would be a 7-10 day stay.

We do not have a private room this time, so there is not enough room for visitors. There is barely enough room for my chair that opens up into a lounger. Good news though is that she is not quarantined to her room this visit. We can go walk the halls and go to the teen lounge as long as she wears a mask. So far today, we have watched a movie and slept =)

I am very thankful that she did not just go to bed last night and sleep through her symptoms!

Hospitalized @chla for WBC of 600 & fever of 101.5

Blood Count

A nurse is scheduled to come to the house twice a week to take blood to keep an eye on Carlene's blood counts. Yesterday the draw showed that her white blood count had dropped drastically to 1000 (the normal level they want is above 5000). At our appt. on Friday it was 14,000, but we were told it would probably drop over the weekend. We have to keep a close eye on her and if she shows any sign of an illness she has to immediately be taken to the hospital and started on IV antibiotics. Needless to say, we have become a germ-o-phobic household. This also means that she has to continue getting her GCSF shots that help to increase her white blood cells. She was not too happy with that one! We will have another blood draw on Thursday and hopefully the counts will be better.

Overall she is feeling better. All nausea is gone and she is eating and drinking normal again. She remains very tired and is not able to be up much, but she is a fighter and is coping well with it all. She says each day is better and hopes to be up and at 'em by this weekend, as Olivia and Alicia come home on Thursday and of course horse riding is planned. They have not been home since before her chemo treatment and she misses her sisters dearly. It will be great to have our entire family together and possibly have a "normal" weekend.

Relaxing Birthday?

Well, I guess you can kind of call it that. Not exactly the kind of relaxing I was planning for when I wrote the last blog. You know the basking in the warm sun on the sandy beach with Carlene while John chased Alyna up and down the wet sand trying to avoid the crashing waves. No, but it was relaxing in it's own way.

I woke around 6 AM ready to take that morning walk on the beach with John before the girls woke up and to my shock, I could not move. When I tried to roll over a stabbing pain shot through my body with enough force to bring me to tears. I tried to sit up instead...impossible. My neck was out!!! Then it really hit me...I am now 40 and my body fails me on my birthday. We tried ice. We tried heat. John called our friend who is our chiropractor. He told me how much Motrin I could take and instructed John on how to massage my neck...NO WAY! I hurt so much I could not move much less touch it! John got a hold of our regular doctor who called in some Vicodin. While he was gone to the pharmacy, Alyna watched out our window and informed me of how many people were enjoying the beach. First there were 10 then there were a thousand. She also noticed that the wind from the evening before was gone and the weather was perfect. Together we cried, wishing we could be out there with them. I laid flat on my back in our gorgeous hotel room all morning. John and the girls went and got breakfast and brought it back to room to feed me (atleast I got breakfast in bed in on my birthday=). Then I insisted John take Alyna to the pool for some fun before we had to check out. Carlene had done back to bed as breakfast did not sit well with her chemo tummy. I found that if I cocked my head sideways to right and wrapped my arms around my head I could sit up. I insisted that I had to sit on our porch and watch the waves while John loaded the car. At least I got to enjoy the beach for a few minutes...from a far! That was the longest car ride home I have ever had. Every bump and jolt sent me through the roof in pain (and there were lots of railroad tracks to endure). Once we made it home, John set me up on the couch, as our waterbed was out of the picture. That is where I have been for the past 2 days. Flat on my back. I am finally up and moving slightly, but my head is still cocked to the side, but at least I do not have to hold it any more. This has been some birthday weekend! I can at least say I took the weekend off and did not do anything=)

Last Day of Chemo for this Cycle

Carlene was finally back to almost normal today. After a week (the longest she has ever gone) she finally had the energy to check her email and make a few phone calls=) I know it was difficult during this first week of chemo, but we really appreciate that you all relied on this blog for info and did not call. Having the quiet time was much needed, plus cell phones are not allowed in the hospital rooms so calls had to be made in the hallway. This was practically impossible because Carlene would not let me leave her side...even time to use the restroom was difficult to find when she was awake.

Today was a quick trip as this chemo drug was only an IV push and she did not have to have IV hydration with it. Her blood counts were still good today, however, they may drop over the weekend so she will need to take precautions and be a "germ-a-phobic". A nurse will come to the house on Monday to do another draw and re-check her counts. Her next chemo is set for April 20th.

Since my birthday is tomorrow, John decided we needed a get-away...and he was RIGHT! We booked one of the free rooms he has earned with all of his hotel stays with work these past few months. It is a gorgeous room on the Oxnard beach (where we got married 10 years ago=). Of course with the free room we can enjoy some luxury and not a Motel 6 or Travelodge hotel! We have not stayed here since our wedding as the prices sky rocketed and we could never afford it. We enjoyed a relaxing drive up PCH from the hospital and had one of the best lunches ever at the Malibu Pier. Upon check in we discovered that our room one that we have always dreamed of staying in...patio opens to the beach with the most fabulous view...our only regret is that it is only for 1 night, but I am thankful for the time to get away after this week and relax. Carlene and I plan on sunbathing tomorrow and watching John chase Alyna up and down the beach=) We are also hoping that he will have a few more free days by summer so we can come back with the whole family. I guess that is one of the perks of working so far from home and hoteling it during the week. (hotels.com offers a free night for every 10 nights booked)

Carlene will be attending a cancer camp at the beach the weekend of April 17th. What a wonderful opportunity to meet others facing her same struggles and to learn how others are coping. She has already met one girl who has ALL that will be attending too. There is also an opportunity to attend a week long camp with Olivia & Alicia this summer at the Ronald McDonald Camp. Unfortunately, Alyna is not yet old enough to attend=(

Thank you all again for your prayers and support. This was a difficult week and we are glad it is over...hopefully the next round will not be as hard. I think going into this one sick with the sinus infection and not knowing which anti-nausea medicine worked for her made this first round more difficult. We are hoping for a better round 2!

Eating Like a Horse

Carlene has her appetite back, but she grazes all day. About every 30-40 minutes she wants something else to eat.

I don't think I mentioned that she has to get shots at home during the 1st week of chemo. She hates them!!! She never understood how Alyna could be poked for her glucose levels all the time and now she must endure the shots! She still hates needles, but if you would have told me she would go through all of this a few months ago I would have never thought is possible. However, she is a trooper and is taking every needle poke like a cowgirl that wants to be healthy again. As I always tell Alyna, "You might not like it, but you gotta deal with it anyways". Carlene is definitely dealing with it well! She makes me proud!

Tomorrow we go back down to Childrens for blood work and the final day of chemo for this round. Then she is off chemo until April 20th when round 2 begins. She will have a total of 3 rounds. After this first round they will repeat the PET Scan...if it is clear then she will not have to have radiation. If the cancer is still present then she will have radiation therapy after the 3rd round of chemo. That is our prayer...a clear PET after round 1 completion.

Make-A-Wish History

The following is cut & pasted from an email from Carlene's grandma on John's side of the family (Jim is Carlene's grandpa)

About 28 years ago, Jim became acquainted with a wonderful little boy (6 or 7 years old at the time) who was terminally ill with leukemia. Jim and some of the guys from DPS, became his buddies; they made him the only honorary DPS patrolman in history, had his own official uniform made and presented to him. He came to the DPS compound where Jim took him for a ride in his patrol car, let him use the loud speakers & siren. He got to ride in a DPS helicoptor. He got to be on a DPS motorcycle with Officer Frank Shankowitz. The whole department fell in love with this little boy named Chris Grecius. Several days after his big event at DPS, his mom called Jim and said she was taking him to the hospital; Jim spent the next several days at the hospital with his mom & dad; and Jim and I were with this little boy when he passed away. His mom & dad had left the hospital to change clothes and weren't there when he passed away.

To make a long story short, that was the beginning of Make-A-Wish; the DPS friends of Chris Grecius started the whole program, with only about $17.00. After that, it became a world wide organization for terminally ill children; but about 10 years ago, it was changed to be for seriously ill children.

Who knew that 28 years later, we would be actually needing them for our own granddaughter?

1st Day at Home

Day at home was not really a day at home...Carlene had a difficult night's sleep because of her constant cough, so I took her in to see our doctor...thinking this would be a quick trip to town and then back home again...wrong. He sent her over for a CAT Scan to get a full view of what's going on in her sinuses, then back to his office for the results...sinus infection! He had wanted to give her antibiotics via her port, but was unable to access it with the needles he had in his office so we ended up with oral meds (hopefully the port is not clogged!). We are hoping to get it under control before she becomes immune deficient. Just before leaving the office, Carlene decided to add a bit more drama to the day and almost fainted after all of the exertion and had to be helped back to a room where she rested a bit before heading home. Once we got her home, she ATE a whole tomato on a small salad with mushrooms slices that was drenched just the way she likes it with italian dressing. She also ate almost an entire Del Taco nacho and has been drinking gatorade. Before her most recent nap, she requested Tutu's delicious porcipine meatballs with mashed potatoes for dinner, which I have currently brewing on the stove. Now that her appetite is returning we are hopeful that her energy will too.

We have been contacted by the Make-A- Wish foundation who will be sending out some volunteers to interview Carlene for her top 3 wishes. She (and her sisters) came up with the following as one wish...go on a cruise to Hawaii with the Jonas Brothers...sound like my girls??? To help figure out your wishes they suggest to finish the following prompts:

I wish to be...
I wish to go...
I wish to have...
I wish to meet...

Carlene has thought about visiting Rachel Ray's set in New York, meeting the Jonas Brothers, going on a Disney cruise, and asking for a new horse trailer. If you have any other suggestions, let her know =)