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 =)

Finally Going Home!

Carlene is drinking now and just told the doctor she wants to go home!!! They are scheduling a nurse to come to the house to check in on her and do her blood draws. Yea...less trips to town. We have even been told that she could receive her day 8 chemo in our regular doctors office (if they know how to access her port and are willing). Dr. Bakhaya, are you reading this???

Still Here =(

Got any red Dorothy slippers? Carlene was given the option to go home today, but was still feeling too icky to wanna go home. She is nausea free, but not eating and drinking enough. She is no longer tethered to her IV pole, so trips to the bathroom are much easier now! Doctor said that it is not the food that concerns him, but the lack of liquids. Her blood sugar levels are now within normal limits, but it will be something to keep an eye on. Since today marked the end to the weekend and a new week beginning, we were bombarded with services. Mark and I attended a new diagnosis parent training, met with her social worker and her care coordinator, and was visited by a family liaison with the Michael Hoefflin Foundation for children's cancer.

We just said good bye to Michelle, our nurse we have had for the past 3 days. Michelle had an ease about her that really helped Carlene endure her first chemo experience. She is one of those people that you you feel like you have known forever...in her "dramatic" way =) Thank you Michelle...you know just how frustrated we have been and you really helped us all more that you know!!!

Tutu and Grandpa brought Alyna down to the hospital today. It sure was wonderful to get one of her sugar hugs! I missed them these past few days. It was of course nice to also see T & G =)

Tonight Carlene is feeling a little better and is trying to eat and drink. Hopefully we will get to go home tomorrow.

Home?

If she was to eat and drink we could go home, but so far today she has had a handful of Fruit Loops, a few sips of Gatorade, and about 2 oz of OJ...we have discharge approval, but she has to meet her end of the bargain. They are going to remove the IV to see if that will force her to feel thirsty and want to drink.

Nausea Under Control

We have been able to get her nausea under control. The new med seemed to do the trick. She slept all night with only a few restroom trips. She has kept down orange juice as well through out the evening. Hopefully she will be able to tolerate food come breakfast time.

Wish I could say that I have slept...we had some extremely rude nurses on duty tonight. At 3 AM it sounded as if we were at a party in the park! They had popped popcorn, which could be smelled throughout the floor, and were laughing and carrying on. I could not imagine being in a room next to the station. We are down the hall a few rooms and it sounded like they were right next door. At 4:00 I finally went the to wing next to us and complained. After I heard the phone ring they were quiet and respectful, however, the damage had been done...my sleep had been disturbed and falling back to slumber just was not happening. Sure wish I could have had some of Carlene's Benadryl =)

Resting now

The second round of chemo hit harder than the first, so the anti-nausea meds have been changed and the benedryl doubled. She is finally resting and will hopefully sleep awhile. If she gets over the nausea and can eat/drink she will be discharged tomorrow. They are currently also watching her blood sugar because she has been running high the last few lab draws. She was taken off of the glucose drip and put on saline drip instead, but her sugar level stayed high. Tomorrow morning they will retest. Since we have diabetes in our family, this is a concern and something to keep an eye on. Hopefully tonight will include a little rest, as last night had little to none.

Day 2 Chemo

Carlene has 2 new best friends, and she calls them...Morphine and Phenergan (sorry Heather...you have dropped to #3, but still top of the list=). Phenergan has beat out Morphine today as the pain from surgery is gone now and she does not need the Morphine anymore. The Phenergan eases the nausea but does not take it away. She just got her 2nd round of chemo and we will see if she tolerates it any better. There is another anti-nausea medication they can try if needed, but the Phenergan seems to be doing it's job today.

Chemo Started

Chemo began at 4:00 pm yesterday (Sat). It has hit her quite hard. The nausea set in around 9:00 last night and they have tried 3 different nausea medicines, but they do not seem to be getting her over that first hump of day 1 treatment. She has stopped eating and drinking, so they are planning on keeping her over night again instead of getting to go home...but that is just fine since I really do not want to take her home until she is stable. She will have the day 2 chemo today at 4:00.

Heather, Kathy, and Chris Londergan came to visit this morning...unfortunately, Carlene was sleepy from the meds and did not get to really visit with her much. However, they brought her a posterboard card from everyone at the gymkhana yesterday, silk flowers, and photos from yesterday. To honor Carlene they asked everyone to wear green, purple, or orange yesterday (lime green=Hodgkins/ lavender=lymphoma /orange=Carlene's favorite color) At the gymkhana everyone entered the arena and released purple & green balloons.

Thank you to everyone for remembering Carlene during her absence from the gymkhana. She was very upset when she could not be there so everything you did to "have" her there was very touching!

No Bone Marrow Test Needed

It took a week to get the Pet Scan results...no bone marrow test is needed which means that the largest mass is smaller than 6 cm. We will be meeting with the doctor today to finalize the treatment plan.

Carlene is scheduled to have surgery today to put in the port-a-cath and then start chemo either today or tomorrow, however, last night she came down with a fever so we will have to wait and see what the doctors decide.

The last couple of days have been quite eventful, but our internet was down so we could not blog for you...sorry.

On Wednesday, Carlene decided to have her hair shaved off. The thought of having it fall out was not inviting, so she took the proactive approach and donated her hair to Locks of Love and then with a smile on her face, had her head shaved. She looks adorable (photos to come). Then she spent the day with her best friend & supporter, Heather, who then spent the night.

Thursday brought more adventure, what day doesn't in our home? The turkeys the girls are raising for the fair arrived via mail. We got them set up in their new home, packed our bags for our weekend stay at the hospital, then headed to the mall for a small shopping spree with Carlene's best friends, Heather and Ashley, where Carlene spent her report card allowance from her dad. After taking her friends home, we headed for the Ronald McDonald house where we will be staying during her hospitalization. This is when the chills set in and the fever began. We are not sure what her temperature was since we were away from home without a thermometer, but with her chills and warm cheeks I can safely assume a fever was present. During dinner, we received a phone call from our neighbors, who are so kindly taking care of our farm animals, to tell us that our doe had 2 babies. They looked wet and they thought that they might be new additions that we might not be aware of yet. Assumption correct. When we left home at noon, she was still prancing around with her huge, uncomfortable looking belly. We are anxious to get home and see them!

This morning, Carlene feels cool and says she feels fine. We will head over to the hospital at 10:30 and find out if she is OK for surgery and chemo. Carlene is kind of wishing to be sent home, because that would mean that she would be able to attend the gymkhana tomorrow=) She has said all along that nothing would keep her from her queen duties...hmmm...is she faking a fever???? Just kidding =D

Chemo Finally!!

Depending on the PET results, I might have to have a bone marrow test, next Friday, and when they do that they will just put my port in at the same time. Then they would admit me into the hospital and begin chemo over the weekend. Since its my first treatment I have to stay 2-3 days to see how I react. If they don't have to do the bone marrow test than I will have my port put in up here on Monday and try to begin chemo sooner in the week because I have my first gymkhana flag run on Saturday. I would be very sad to miss it:( I will let you all know when I know what's going on.
-Carlene

Radioactive...Again!!!

I'm sorry I thought that I had posted a blog about my PET a few days ago but our internet has been giving us lots of problems. So today was my PET Scan and it went really well. I had to stop eating at midnight so last night at 11:30 I ate waffles:) After my Pet Scan I ate a foot long subway sandwich, it was so yummy. I am not sure when we will have results from it though.
I would like to send a HUGE thank you to the Beery Family, especially Jacque because I have received so many wonderful handmade cards from all over the country and I love them all!!!!
Love,
Carlene

More photos

Rodeo Photos

Thanks to Mrs. L I enjoyed cake on my face...one of her many birthday victims! I thought I was safe being at a rodeo and all.

It was a great day!!!

for more information regarding youth rodeo check out the website at:

avyrarodeo.org

Day after my Birthday!!!

My birthday was sooo awesome. My mommy and I hung out all day. She took me out to breakfast and then to a massage. It was awesome. I also bought some wigs. They are so cool. When we find the camera cord, we'll download pictures:) Then Alyna and I saw bridewars. For dinner we ate STEAK, my favorite. After presents I had my oreo cake with extra oreos. It was sooooo delicious. So, I had a fantastic birthday!!!!
-Carlene

My Birthday!!!

I totally forgot to say that its less than 1 day till I'm 16. I am soo excited. The doctors were all asking what kind of car I wanted :) By the way I want a lime green beetle. Since tomorrow is the 5th I get to have my favorite.... Oreos. WooHoo I cant wait. I just finished watching American Idol and now I'm gonna go to sleep. I'll keep ya'll posted!!!
-Carlene

After my Surgery

It is now 6:30 at night and I am home and getting ready to eat some soup. The surgery went really well. The lymphode is usable so I don't have to do this again. I wasn't even "loopy" when I woke up, just a little sleepy. We also saw Dr.Gaynon, the oncologist, and he said I have to have another PETScan and other tests for my heart and lungs. Then I can finally start my chemo. I was asked before "what is a PETScan"... it is like a CATScan because I drink contrast and I have an I.V but I am also radioactive afterwards. The machine is a giant donut. The first time I have chemo I will have to stay in the hospital for 2-3 days so the doctors can help us learn about the side affects so when I am home it will be okay. I will also probably get a pickline (i think thats what its called) in my arm so I don't have to get poked with needles everytime. The doctor also said I will definetly loose my hair in 1-3 weeks after I start chemo, so I guess I'll wear hats:) I am very glad that we are finally getting somewhere. Thank you soo much for all your support. God has blessed me with all of you and I thank Him very much.
-Carlene

Surgery Tomorrow

Tonight I am staying in another hotel because I have to be at the hospital at 5:30 am. I am the first surgery of the day at 7:30am. I am just glad I actually have something to do instead of just waiting. I hope this biopsy works and they don't have to do it again. Last Sunday, was the first youth rodeo of the year and I was so excited to be able to compete. I had so much fun. Levi and I placed in every event. For dinner tonight I ate at the best restaurant ever, Roscoe's Chicken and Waffles. It was the best food in the world!!! I have only 1 day left until my birthday. I don't think I can wait that long :) I know I haven't blogged in a while but I haven't had anything else to write about. I have just been working on alot of my schoolwork. Thank you guys so much for keeping me in your thoughts and prayers.
-Carlene