O- blood donation needed for possible transfusion

Finally we are on-line and able to explain the blood donation request. Carlene's hemoglobin is 10.4 and normal is 12. As long as it stays above 10 she can continue with radiation...if it drops below 10 then she will need a transfusion before continuing with the radiation. The doctor seems to think that she will not need one, but said we could be proactive just in case the need was to arise. Since they will not blood type her until a need arises, we were told O- blood type donators would be the only option right now. Her levels will be tested at the beginning of each week before treatment for the week begins.

Thank you to everyone that has offered to donate for her! A HUGE thank you to Brana and everyone that responded to her request at Joshua Elementary (where I, Tara, used to work). Several teachers have offered to donate if the need becomes a reality. Thanks friends =) It just proves the point that Joshua is not just a school, but a family! Thanks for keeping me part of the family even though I teach elsewhere now.

Radiation Appts.

Last Wednesday I had my appontment at the radiologist office. They made a body cast of me and then drew all over my arms, neck, and chest with a purle marker so every time I go I'm in the exact same spot. Then I had a CATScan and I went home. The doctor called us yesterday and my first radiation is going to be on Tuesday. Today was the Cherry Parade and I got to carry the American Flag at the lead. I had soooo much fun. It was very cold and stormy which is not typical "cherry" weather. There was also a festival which was also fun. Tomorrow we're going to the Celebrate Life down at Paramount. And Heather gets to be my sister again. I'm not sure what exactly it is, but it should be awesome!!! We might start staying at Ronald Mcdonald House either Monday night or Tuesday night. I really want to stay down there Monday because they have a TEENImpact, which is like a fun support group, meeting at CHLA.
I'll attach pictures!!

-Carlene

PETScan, Doctor Appt., Radiology... Oh My!!

Yesterday was a crazy but typical day down at Children's. After the rodeo on Sunday, Heather spent the night so she could come with me on Monday. We got up early and left the house at 5:45. Alyna got dropped at a friends so she could go to school and we arrived at CHLA at 7:20. After checking in they took us back into the "blue room." I have to wait an hour after I get injected with the radioactive stuff to go into the PET. I finished with the scan around 10ish and then we went up to the doctors to check in for my 10:30 appt. When we checked in they said that I would have to get my blood drawn but they didn't draw any. At 11:20 a nurse came and found us in the waiting room and asked if I had gotten my blood drawn, which I hadn't. So I quickly put the numbing cream on and waited....again. We were scheduled to talk to the radiologist at noon so my mom ran down there since we were running late. At 12ish they finally took my blood and told us to wait 40 minutes for the results. They gave us a pager and we went to eat lunch down at the cafeteria. After we ate, we went to the radiologist office at 1 and talked to the radiologist. We went back up to the doctor's office and got a room at 2. Then we saw the doctor for about 10 minutes and we got to leave. After our super long day we went out to eat ice cream at Thrifty's. It was delicious!!!

-Carlene

Rodeo

This weekend I had a two day rodeo down in Corona. I was so excited because I was going to do all of the events. We brought Levi, Kiowa, Kid, and thanks to some friends our new horse Chubbs. On Saturday I did Poles on Levi and Goats on Chubbs. After goats I got really tired so I didn't do Barrels. After the rodeo we went back to the hotel and ordered pizza and went swimming for a little bit. It was alot of fun. Then we went back to the rodeo grounds for a goat tying jackpot fundraiser. We just ran on foot, no horses, it was fun. I tripped and fell the first time and then the 2nd time the goat came untied. On Sunday I did Poles and Goats on Levi and we did really good. I again didn't ride Barrels so I went home early and finished my typing homework for my college class. Overall the rodeo was sooooo much fun. I can't wait until July. This coming weekend is the cherry parade and I get to ride in it with the American flag. I'm excited cuz I love cherries, they're so yummy.

-Carlene

HAT PARTY!!!!!!

Wow its been forever since I've blogged!! On the 22nd of May I thought I was going to my best friend Heather's house for an end of the school year party. Instead we got there and my mom sent me out to the car for the last bag of soda (which I later found out was planned) and when I came back in everyone yelled SURPRISE! And that's exactly what I was, totally and completely surprised and a little confused! Everyone there had kept it a complete secret. It was so much fun. We all made paper hats and decorated them and throughout the night I opened presents which were mostly hats and some were earrings. I felt so happy and supported. Thanks to everyone who was there and a HUGE thanks to the Londergan's for hosting the party and being there for me. I love you guys. I have a lot to blog about but I'm going to do in a few short blogs not a giant long one. Pics will eventually make it on the blog.
-Carlene-

Memorial Weekend

After having our air card swiped during a sleep walking expedition, we are finally back on line again! I apologize for the limited blogging.

Memorial weekend marked Carlene's last episode of low blood counts. Of course, she could not just sail through it smoothly. Saturday evening she began to feel light headed and started running a fever. After calling the on call doctor at Children's Hospital we were sent to our local ER. So we packed up and headed in around 10:30 pm. I chose to go to Lancaster Community Hospital this time because I have started getting bills from AV Hospital from the last visit. It seems that Blue Cross is undergoing contract negotiations with them so they are not a covered hospital right now. I had no prior experience with Community and I wish it was that way still! Our experience was horrible and I will never go back willingly. If we had not already experienced this before I would not have really known the difference, but there was no sense of urgency at Community and it took 1 1/2 hours before they finally got around to drawing her blood. At AV her blood was drawn within a half hour of walking in the door of the hospital and she was wisked away into a private room that was sealed off with caution signs and nobody entered without being masked and gloved up. However, at Community she was placed in what I came to call the closet. It was curtained partition of their main room which housed the supplies for all of the ER. So every couple of minutes staff entered the room to get something from our "closet". When I questioned them I was told they did not have private rooms. Long story short...at 1:30 she got some Rocephin antibiotic and was sent home with the need to return the next day. Being the holiday weekend we had no choice but to go back again. We returned on Sunday and things were better, but the bad taste of our prior visit still remains in my memory. She received more Rocephin and they re-checked her blood counts. Her white blood count was up to 900 from the 600, but her red blood cells and her hemoglobin were both still critically low. The doctor at children's hospital said that because of the holiday, we would wait until Tuesday and see if her counts would improve themselves. Since they were not declining, but holding steady we were safe to wait. Had it been any other time she would have received a blood transfusion. So over the holiday, she took it easy and completed homework. On Tuesday, her counts were still not normal but were increasing enough to keep her from getting a transfusion. She is now feeling much better, her fever and lightheadedness is gone!

Our next step is a PET scan on June 1 and a consult with her doctor.

Chemo Completed!!!

Today was the final day of chemo! All 3 rounds are now a thing of the past in this journey. Carlene has done remarkable throughout this entire process and has kept that beautiful smile beaming every day (well maybe not the couple of puke days during round 1)!

Yesterday was a gymkhana and she was determined to be there even though she had little strength. With the generous help of many she was able to complete her queen wave...instead of riding her horse, Levi, she rode in the back of Jason & Tania Williams 4-wheeled mule. They had it decorated beautifully with a bale in the back that had an American flag horse blanket and and American flag stuck in it as well! Jason even said he had washed the mule the day before for his "girl". After that wave around the arena she mounted Levi, with the help of many, and walked the American flag around the arena. Not the flag run she would have liked to have done, but she was so excited to be able to be there! She looked absolutely beautiful in her red, white, and blue LV queen chaps and that never ending smile! She was quite concerned that her hat & crown was going to fall off-wig and all-but they all stayed put! In July, she will have to wear toupe tape to hold on everything, because I can bet she will be flying around that arena just like bombs bursting in air! We will post pictures soon=) In the meantime, check out lvgymkhana.org to view the gymkhana website.

This week will be a better week, still will be weak and tired from today's chemo, but next week she will be back to full energy and ready for a 2 day rodeo on the 30th & 31st! Her next PET scan is scheduled for June 1st then radiation should begin soon after.

Feeling Great...before the 3rd chemo cycle

This past week was a great week for feeling better. However, we were at our pediatrician's office daily for IV antibiotics because she got that dreaded sinus infection back. We opted for the IV over oral meds so that she would be "healed" by her next chemo treatment...this meant daily trips to town and no sleeping in =( We did make use of the daily trips by doing a little shopping and visiting with a few friends. (for those of you that do not know what a "trip to town" means...we live about a 1/2 hour from civilization so a trip to the doctors is not just around the corner)

She also had her first roping lesson on horseback and was extatic to "catch" on her third try and cannot wait to get back in the saddle again! We had a fantastic Mother's Day weekend...Mother's Day for me always includes horses in some way...usually a gymkhana or a rodeo...however, this year we opted to drive to Vegas (about 5 hours away) instead and bring home a roping horse. Carlene decided that she wanted to invest some of her cancer policy $ in purchasing an experienced roping horse. I did not think that we would find one so quickly, but God already had it in the works and Chubbs now has a new home. If all goes well, the girls will be actively competing in roping events by the end of the summer!

We are just finishing our 2nd day of the 3rd round of chemo. Our next PET scan is scheduled for June 1st and radiation will begin the 2nd week of June. If all goes as scheduled/planned she should be in remission by the end of June.

Thank you for your prayers and well wishes...we love you all and want you to know that we appreciate your interest in Carlene's Journey through this season of her life!

A Great Week Ahead!

Things have been much better this chemo round =) This next week will be a great week. Carlene has her strength back and plans to take a rodeo lesson this week. Her next round of chemo will begin on Monday the 11th.

I apologize for the limited blogging, but there is a strange reason behind it. You see we live with sleep walkers and one evening they (no names Olivia and Alicia) both found themselves out of their beds and in the living room and the kitchen. One of them must have been dreaming about our computer, because our air card (which is our only internet connection) mysteriously disappeared that evening. It has yet to be located and we are anxiously waiting to find it's hiding location.

Soooooo...the blogs are fewer...and I highly apologize for this! Hopefully, we will be up and running sooner than later =)

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=)