Tuesday, May 29, 2007

Mom was wrong

Turns out Nick's white blood cell count is .3 which is almost non-existent. Kelsey just went to spend the day with her dad, as she still has a fever, so Nick isn't compromised. He made it through radiation and is feeling ok, just wiped out. God bless the couch, pillows and the channel changer. More to follow later.


Rounding the corner

Mom here...

Nick appears to have weathered his bout of pneumonia and stabilized his blood pressure. He was released from the hospital yesterday around noon with promises to drink what he can. He'll begin home iv for hydration this afternoon just to make sure he is getting enough fluids. His mouth and nose are a mess, with both bleeding off and on. We are going to try some other antibiotics to help. His white cell blood count was .9 yesterday so we are being extra careful with germs. Poor Kelsey has a fever and has been quarantined and she is feeling a little abandoned. Grandma and Grandpa arrived yesterday so they help spend some time with her.

On the bright side, he actually drank a "Boost" drink yesterday, some Gatorade and water. His temp has remained normal and he has had NO PAIN due to the Neulasta shot so far, which is terrific. And as always, he is still smiling and watched both the Jazz and Ducks playoff games last night.

We're going to make this a great week! We're off to radiation this morning and new labs drawn; I fully expect his count to be on the way up. Thanks for the support and we'll update again soon.

With much love,


Saturday, May 26, 2007

Two steps forward, one step back...

Mom typing here:

Nick had a good week and was released yesterday (Friday) after completing round 2 of chemo! Here are some highlights:

He wasn't feeling very well by the end of the week and went up to Liberty with his dad yesterday. His ability to eat has diminished to almost nothing due to the severity of the sores in his mouth and throat. The chemo seemed to effect him a bit more this time.

This morning, Nick was still feeling out of sorts and actually passed out in the bathroom in the morning. He was running a bit of a fever, too. His dad brought him back to the hospital so Nick could get his Neulasta shot in the morning. Because he still had a cough with a fever, he needed to have a chest x-ray to see if he had pneumonia. While standing for the x-ray, he passed out again for about 20 seconds and his blood pressure was way low. He was re-admitted to get him hydrated and stabilized. His labs were all normal with the exception of concern with his coagulation (blood clots) levels - they were high. This prompted a shot in his stomach to alleviate any clotting and a CT scan (which also came back normal).

It seems the drop in steroid dosage from Friday to Saturday may have affected his blood pressure. We just got confirmation that he has a touch of pneumonia and will have to be on some iv antibiotics to knock it out before his blood levels drop. Good news is there are not any blood clots in his lungs. He may be in here for another day or two. I'm actually glad we are here so they can watch him carefully with his breathing and temperature. We are still trying to find something for him to eat as he can barely swallow water today.

Graduation is only 4 days away so we're focused on recovery! He's still smiling...

Wednesday, May 23, 2007

Dav 4 (2nd Cycle)

Today, marked the 4th day of my 2nd cycle of chemo, and the 13th day of radiation. So far I haven't been sick once from the chemo and don't plan on it either. I do have a pretty sore mouth however, which is common because the skin inside your mouth dies because they are fast growing cells and that is what chemo kills. With the combination of a dead mouth, chapped lips, and frequent nose bleeds (side effect due to radiation), I must say it is hard to stay positive all the time but I know I have had it easy compared to others.
I have not had the same appetite I once had when I was on steroids, and now that I am off of them I have my normal eating schedule. I have lost 10 pounds in a week, which was a big shocker to me since my eating has been so good. The past two days I probably have not eaten as much as I should, but it is hard to eat food when everything tastes like "mush". I miss sweets the most, and often think about how good food used to taste and why I didn't eat more delicious foods before I started chemo.
I have had lots of surprise visitors lately which has been nice. Yesterday Denise stopped by with a balloon and another word book to challenge my brain. Thanks Denise! Then today Sergeant Sanchez and Specialist Harmon came in to see how I am doing. They are in charge of my monthly National Guard drills that I had before I was diagnosed with cancer. They are really good guys and I look up to them highly. I knew they were going to stop by and say hi while I was in the hospital but didn't know what day, and when they came into my room with their cool uniforms, I was delighted. They gave me some sweet National Guard hospital clothing that is camo and says National Guard on it. Everyone in the hospital comments on them and is envious. HA Sergeant Sanchez also gave me a really cool coin from the Sergeant Major of my unit. I don't know how rare it is to receive one of these but I thought it was really cool and was really honored to even have it given to me. Sergeant Sanchez and Specialist Harmon sat down and just talked with me for a while and told me they would love to have me back at drills as soon as I want, its just up to me when I feel like I can do stuff. I plan on going to the next weekend drill as long as my blood count is up and I am feeling good, so thats good news for me. I enjoy going to the weekend drills and training on stuff that I will learn about more in Basic Training.
They "Army" left as soon as Chris and Matt showed up, which was a big surprise to me. Chris is a mom of a friend of mine and she has always liked me since she met me. Every time I see her she says, "Nicky!", which is her choice of name, not mine, but it is still funny. It was nice talking to them about how good I have done with this whole thing, and they were pleased to hear it. Chris brought pictures which she had taken at her house, where I had dinner for the dance last Saturday. It had everyone in there costumes and with there dates.......... it was cool. Oh, and she also brought me a banana, which she said she didn't know why she just did. WHICH, happened to be good since my potassium count was a little low. Weird huh.
So I guess the main point of this blog is that I am so thankful for all the support and love that has been shown to me. I never would have thought so many people would give up their time, just to let me know their thinking of me and that I am in their prayers. I get letters everyday it seems from people I have never met, and they only have good things to say. It really has been nice knowing I have all this support......... THANKS
Oh.... and the guys are coming to visit tonight. They were here on Monday too and we played dice like always, and we will probably do it again tonight. I really have the best friends.

Sunday, May 20, 2007

2nd Cycle of Chemo

So I started my 2nd cycle of chemotherapy today....... I will spend 6 days in the hospital and will most likely be feeling better by the time graduation comes around (may 31).
When I walked into my room today, my mom pointed to the white board in my room and started laughing. (The white board has the names of the nurses and the date) It said that Mary would be my nurse today, and she is the funniest lady. I really like when she takes care of me, and it seems like she usually is for some reason. We crack jokes left and right, and she also lets me do whatever I want. So I was really glad that my first day would be with a cool nurse, and it was. I gave her a card before she left for the night with a picture inside of me from my 1st cycle when she was taking care of me. She was so happy when I gave it to her and told me she was going to put it on her fridge when she got home. I laughed.
A lot of people ask questions about chemotherapy and don't know much about it so I thought I would tell you some cool stuff about the chemo that I am getting. Im actually taking 3 different types of chemo when I go through a cycle. One takes 15 minutes to take, another an hour, and the last one takes three hours. They are all given through my "port" which goes into my chest and is completely painless. The chemo is given with a couple other iv's which are for my kidneys and to keep liquids in me. The one cool thing my mom found out is that the one type of chemo that I am receiving, "vincrystine" (i think thats how you spell it), is a newer type of chemo and comes from a plant that only grows in Madagascar! Its crazy to think that people can study plants and use them to help fight cancer and probably a lot of other things too.
Last night I had a school dance, which was MORP. It was the last dance for the school year so I was really glad that I had been asked. The theme for the dance was "what you want to be when you grow up", so my date and I both dressed as pilots. Actually, we both wore clothing that was Grandpa Raitt's flight suits. They were really cool and authentic so I had to wear them. I felt like a real pilot and looked like one too. Especially with my aviators on and my shaved head! After the dance, everyone went over to this girls house and we had a big bonfire. It was really fun to just sit outside with everyone (like 15-20 people) and just talk all night. At one point everyone was pretty much circled around me and they just kept asking questions about how I was doing and what I do when I am in the hospital. I knew a lot of them wanted to ask me stuff but were too scared to, so it was fun to explain to everyone what was going on. I FELT LOVED. HA
So I just wanted to thank everyone again for their thoughts and prayers, they really do mean a lot. Also, I would like to thank my Aunt Chris for all her love and support (and the m&ms), and everything the Ulvin family has done. There are so many more families out there as well that have shown support and I want all to know how thankful I am! I will continue to "Cowboy Up"

Monday, May 14, 2007

May 14- Whats New

I started my 2nd week of radiation today, had some blood work done, and had a meeting with my head oncologist (Dr. Chen) today. It went well and we now know that I will start my 2nd cycle of chemotherapy this Sunday which will put me in the hospital for another 6 days. This should be good timing since I have a school dance on Saturday and will hopefully be feeling better by the 31st which is the day of my graduation. The doctors tell me I will most likely have to experience the side effect to the "Neulasta" shot which gave me the bone pains last time. I have been given some hardcore pain medication though and the doctors say if I take it as soon as pain starts to arrive then it shouldn't be as bad as it was the last time. LET US PRAY!
A couple of days ago I unfortunately realized that I was beginning to lose hair....... So today I had a couple friends over and allowed my best friend Rob the honors in shaving my head. I think I look kinda like Carlos Boozer instead of Vin Diesel but I cant complain. I am going to have to get used to it. It was fun pulling my hair out in front of my friends though. Rob flipped out and couldn't watch when he saw how much hair came out in one gentle little pull. HA HA
Lastly, I received my last package of my custom wrist bands so if anyone wants one you have to come visit me in the hospital or at home. I have tons in 2 different colors.

Your Boy Nick Raitt

Friday, May 11, 2007

Quick Update

On May 7th, Nick's white count was 9.4 and his platelet count was 127. On May 9th, his white count dropped to 1.39 and dropped more on May 10th to 1.16 and his platelet count down to 88. This is a condition called neutropenia and we went into major awareness of handwashing, avoiding crowds, no fresh fruits (except bananas, cantalope, etc) or raw veggies and especially watch his temp; if it goes over 100.5, we have to take him in to ER - he was at 99.5 last night. TODAY, his white count is up to 3.5 and his platelets are at 122 and his temp is normal! Nick's body is on the rebound!!!!

Superman has found his kryptonite...

Mom here - Nick was finally released from the hospital Thursday afternoon with a new prescription for pain. It was confirmed the severe pain is due to the Neulasta shot he had on Sunday - it is to help rebuild blood cells. A small percentage of patients have the side effect of pain in the bones - the actual cells are called to regroup once his blood count dropped, and boy, did it drop on Wednesday. He is still feeling pretty sore and tired today so I thought I would update this blog so we are reminded just how well he has done in the past 10 days. Here are the pictures of his progress:

Day 1 - April 30th -

Day 2 - special visit from his fairy godmothers - they sang "You Are My Sunshine" and brought him tons of goodies (Nurse Mary borrowed them and they were requested to perform for 5 other patients - day ended with them in the lobby having their pictures taken with many Asian nurses.)

The boa is a present from Nurse Mary.

Day 3 - the pirate!

Day 4

Day 5 - the gang's all here!

Nick with his dad

Day 6 - round one is done!

Today, May 11th - doesn't his eye look great!

Thursday, May 10, 2007

The Longest Night of My Life

May 9 (3rd day of radiation), Nick Typing.....

After my radiation at 11 I headed back home to take a quick shower and then I ran over to see Jammi and give her a copy of "The Secret". I love talking with her and felt bad for her since she was tending like 8 kids in her house. After that I headed home for good because the doctors had taken blood work today and told me my white blood count was real low so I needed to stay away from people and dissease. I believe my white blood count was at a 1 while it was at a 9 two days ago.
I told Rob, Trent, and Shawn that if they were healthy they should come up to my house and watch the Jazz game with me and we would order some pizza. Rob came over around 4 and we just messed around but Shawn, Trent and Haylee didnt show up till game time which was about 7.
At about 6 p.m. I started to feel some bone pains in my hips and back area, where I had recieved my bone marrow biopsy and spinal tap. It wasn't too much pain and I knew my counts were low so I didnt pay much mind to it. Later, as the night and game went by I started to have more pain and it started to move down my legs to the point where I could barely sit still without rolling in pain. We called the hospital and asked some questions about it...... they recomended just taking 2 lorotabs on top of the 3 tylenol I had already taken since the pain I felt I was having was a 7 out of a 10 to me. So I continued to watch the GREAT jazz game with my guys, but it wasn't too much fun for I could barely keep track of what was happening on tv.
When the game went into overtime I had finally had enough pain..... I now considered myself to be experiencing the worst pain that I have ever felt, (yes even worse than the bone marrow biopsy) so I called my mom and told her that we needed to go to the hospital because the pain was now in my lower back, hips, and all the bones in my legs just ached. I was a little embarrased because I had to have my buddies help me get up and walk to my moms car. I think it was the first time either of them had seen tears in my eyes and I knew they really cared. I couldn't ask for better friends.
My mom then flew to the Huntsman Cancer Institute, where I was checked in for the night at about 10. What sucked is I had to be given a doctors exam, some x-rays, and then a lot of waiting before they could even attempt to give me something to take away the pain. They tried giving me morphine at first but that didnt make any of the pain go away. I dont think they got any of the pain to leave until 2:30 in the morning. It honestly was the longest night I have ever gone through, and I would do a bone marrow biopsy any day over those 7 to 8 hours of pain I had. I told my nurse Mary (who is my coolest nurse) that she should talk the doctors into just knocking me out so I could at least get some sleep. That didnt work out.
The doctors are pretty sure that I am experiencing the pain because of a shot I received 4 days ago which was supposed to help with my recovery in my blood count and stuff becuase of the chemo I had. I guess like 35% of people who take this $6,000 shot have some bone pain after, but they dont know why it was so sudden and bad.
Its now the 10th and I am writing this blog, I still have the pains in my hips and legs but they finally got some pain fluids that take some of the pain away. Compared to what it was last night I am fine with feeling a little all the time. I have to go do some radiation here soon at 10 a.m. which is just two floors down from my room, but I dont know if I will have to stay another night in the hospital or not. Hopefully not but if my pain continues, I will have to stay again and just continue with more pain killers and try to find out whats going on.


Monday, May 7, 2007

First Day Of Radiation

Day before going to hospital. 4/30

Nick typing......

So today I had ran down to the Huntsman Cancer Institute again for my first day of radiation. We got there around 11 a.m. to do some blood work first. It was supposed to be a real quick thing since I already have a "hickman" port in my chest that they can use like an iv, but it ended up taking longer since only certain nurses are allowed to draw blood from them. Oh well....
Finally about 45 minutes later I finally checked into radiation where my dad was waiting at the front desk working on someone's unfinished jigsaw puzzle. He was amazed to see how much improvement has gone on with my eye. He says the last time he saw me was two days ago and the swelling still seems to go down. This only made me smile and reply...... "I told you, I'm tough!" Ha ha.
Minutes later I was pulled into the back and given my first treatment of radiation. It took maybe 20 minutes and was completely painless and easy to do. Its basically a huge x-ray type machine that shoots radiation rays into a designated area. Its pretty cool and slick how the entire thing is done. I have to wear a silly mask thing that straps my head to this table and the machine does all the work. I will have to go through 5 weeks of this everyday (except saturdays and sundays) at 6 p.m. at Huntsman. It may seem long but it really isn't too bad. At least compared to the chemotherapy, which is estimated to take a year. I tell everyone though that 6 months will be plenty long if I keep on fighting my cancer the way I want to. Ha. I dont mess around!
Thanks again to everyone who has shown their support and love! Keep in touch!

Sunday, May 6, 2007

Home at last!

Mom here...

We were finally released yesterday at 6:00 p.m. and stopped by Arby's for Nick's favorite milkshake on the way home. He slept great last night- actually, we all did! He feels pretty good, too.

He was missing the hospital so we went up again today for a shot - something to help rebuild his blood cells. Quickest visit there yet - there and back home in under an hour! We've loaded up on prescriptions and a home healthcare nurse came by to make sure we know how to keep his Hickman port nice and clean. Tomorrow we start the radiation routine - every weekday for the next 5 weeks and will have lab work done twice a week to check on his blood count. He is going to be vulnerable for the next 10 days or so - if you are wanting to come by and visit him, PLEASE make sure you are healthy - he can't afford to be exposed to any colds, flus or viruses right now.

Other than that, we are laughing a lot at YouTube videos of babies laughing or soccer flub-ups or clips from America's Funniest Videos. Thanks to everyone - he has been blessed with almost no reaction to the chemo - we couldn't have asked for a better response! Please keep the comments, instant messages, emails, cards, texts and personal visits up - it truly makes a difference!

With all of our deepest gratitude,
Love, Lori

Saturday, May 5, 2007

Day 6

Nick Typing......

Today is my last day in the hospital and that makes me feel so good because I am sick and tired of the same bed and all the IVs. The doctors are suprised how well I have held up with the Chemo treatments which is good to here because it shows that I am "too tuff" for my cancer. You can already tell a difference in my face for the better that the swelling is going down and the cancer tissue is softer and mayber even starting to die.

Savanna's Mom stopped in yesterday while I was sleeping but thankfully I woke up and caught her in time before she left. She is a wonderful person to talk to for she is so possotive and supportive. She brought a gift from both her and Savanna which was a Build-a-Bear which was one of the coolest gifts I have received. It was a hockey bear wearing the same number which I wore for my senior year in hockey. It meant a lot more to me than I think they realize. It is awesome!

The only pain I have had is some mouth sores but its not too bad. I am happy I still have my mohawk and probably wont lose it for a couple weeks. Mostly, I am glad that I have not had any stomach problems or bathroom problems. I get around fine on my own and enjoyed playing dice all night with 5 of the guys. You know you have true friends when they will come visit you on a friday night in a hospital and play dice with you cause they know its your favorite game. Also, I want to thank those guys for all the support they have shown through this and their abilities to keep me happy and focused.

I would also like to thank everyone who has given their prayers and thoughts twords my recovery. It means a lot to me to know that all of you are here for me.

Friday, May 4, 2007

Day 5

Mom here again...

Last night Nick had lots of company - a couple of cutie pies from high school dropped by (no, Rob was not one of them) and the whole family came in to watch the Jazz beat Houston. I brought in Indian food for us from our favorite restaurant and it was fabulous.

Although chemo didn't start until almost midnight and Nick endured countless interruptions throughout the night, he awoke with feeling pretty good. His labs are great - the only reaction he has to the chemo is a little sore throat. I pulled his hair today and it all stayed on his head - so the mohawk remains intact another day!

Nick will have his dad stay with him at the hospital tonight and plans on having several friends up to hang out in Huntsman's finest private entertainment game room. Once labs are drawn tomorrow morning and all is well, he is COMING HOME! Scooter has remained faithful, sleeping under Nick's bed waiting patiently for him to return.

His spirits are up as his eye and cheek are visibly getting better. More to follow tomorrow...

Thursday, May 3, 2007

Day 4

Mom typing here...

After 4 days and 3 nights, Nick's body is handling the chemo with pure class. He has very little nausea, healthy appetite and getting some sleep. He has put away his "Rock Star" sunglasses temporarily for a pirate's eye patch. His room is filled with pictures, cards, PlayStation games, guitars, computers, candy, dice games, a flying monkey, ipods and cowboy bandanas. He is comfy in his own clothes, pillow and a fabulous black feather boa, compliments of his nurse, Mary. We have both basketball and hockey playoffs going on right now - we are all highly entertained.

Both the bone marrow biopsy and spinal tap came back negative and that is FANTASTIC! If his labs continue to be as great as they are today, it looks like he can go home on Saturday.

Nick's dad and I are taking turns staying with him overnight at the hospital, mainly to help us feel better, not necessarily Nick. The foldout couches here are not too bad. Lee brings Carly and Kelsey down for dinner or a visit every night- food is pretty good here, too. Nick has had visitors every day which is awesome.

Bye for now. Thanks again for all the wonderful warm wishes and lovely words of inspiration!

Wednesday, May 2, 2007

My War With Cancer

My name is Nicholas Raitt, I am 18 year old student at Layton High School and play hockey for my two different high schools. I joined the Utah Army National Guard on Jan. 26 of this year and have been attending training drills one weekend a month. I have really enjoyed my senior year as a student and have no regrets.

On April 12, I was told that I have a cancerous tumor located in my right sinus area where it has grown around my cheek bone and into my gums and underneath my right eye. My father and I had gone into see the doctor thinking I had an infected eye or just some bad swelling from an elbow to the face which I had recieved a month earlier playing basketball. The doctor told us that the elbow to the face had just been coincidence and had nothing to do with the tumor. It was the most shocking news I had ever heard and both my Dad and I looked at each other in disbelief and began to cry.
About a week later I went into surgery where my doctor cut a piece of the tumor out to have it processed to see what type of cancer we were dealing with. Couple days after this it was determined that I have a very rare cancer which is called Alveolar Rhabdomyosarcoma. 1% of all tumors that cancer victims have today are a Rhabdomyosarcoma which is about 70 people in the entire world. This type of cancer is very rapid growing and agressive, which is in a way a good thing for it usually reacts better to chemotherapy and radiation compared to a slow growing tumor.
I know that my fight against my cancer will be long and hard but I also know it can only make me a better person in the end and have an even better look on life after it is all over. I believe a person can only show who they really are by the way they overcome their own struggles in life for everyone in life goes through them. Dont try and feel bad for me just because I have cancer...... There are plenty of people out there with problems just as big as mine if not bigger. I know I will beat my cancer and it doesn't worry me one bit.
I begin my treatments of chemotherapy and radiation tomorrow and will spend the first 6 days in the hospital. Yes I will be bald soon but I plan on pulling of a Vin Deisel look....... ha ha. I have been told by my doctors that I will have radiation done everyday for 5 to 6 weeks and then stop. But I will most likely go through a year of chemotherapy which will probably be done only 1 or 2 times a week and may change in the future to longer periods.
I wrote this blog cause I know a lot of people want me to keep them up to date what is going on and this is an easy way to share my story. Also, I will update this blog as much as possible with new info and stuff that you might want to know. The one thing I dont want you to think after reading this (if you made it all the way) is that you are sorry for me and feel like I am looking for attention.
Live life one day at a time and dont wait around for things to come to you. Go get what you want. Thats the only advice I have for anyone who wants it.