Dad Here,
Nick continues to slowly improve. He looks great but feels crappy. The irony is, the worse Nick feels the better he should become. Thats chemo for you! He will start his forth cycle on Monday, July 2nd and to lift his spirits I called the Salt Lake Chamber of Commerce and arranged for a large fireworks display for Wednesday evening. We would love to have everyone interested in visiting Nick at the hospital to stop by. The views from the Huntsman Cancer patio should be spectacular. Please visit Nick's Blog on Wednesday morning for additional details concerning the event.
Love,
Todd
Friday, June 29, 2007
Wednesday, June 27, 2007
Rough, but he made it...
Nick was released from the hospital Monday and we were home by 4:00 - it was one full week and it wasn't even for chemo. He was given some strong prescriptions for pain, but he hasn't needed them. Monday was rough, however, and the pure exhaustion of not getting enough sleep and the constant battle with the mucus in his mouth and throat was overwhelming for him.
Yesterday was much better. He did sleep a little better being back in his own bed, he showered and we finally got 6 cans of nutrition in his body - first time! He played the "stack it" game with Kelsey (she proceeded to whoop him soundly). He took a walk outside with Lee and I (two houses down and back). He is drinking warm Sprite and had about 3 bites of tomato soup. He is enjoying the company of friends and is thoroughly addicted to "Lost" (I started renting the first season).
The thought of going back to chemo as soon as Monday is difficult. We did get a phone call yesterday from Dr. Chen's office saying that she will reduced the amount of chemo by 20% because he had such a difficult time.
One highlight from last week is a "prayer shawl" Nick received from his dad's friends, Bernie & Annabelle Kowalski from Colorado. If you are reading this posting, please take a few minutes to look at the website - www.shawlministry.com. It is a FABULOUS collaboration of women utilizing their hands, spirituality and compassion for those in need. Annabelle was given a shawl to give to someone who specifically had cancer; she knew just who to give it to. I'm going to forward this website to our church, as well, to see if our own community will embrace this practice (if not already doing so). Bernie & Annabelle - thank you! Nick will also thank you himself once he is feeling better. I have the shawl close to him.
Also, Nick has received some spontaneous and heartfelt emails and cards from both those that know Nick and those that have never met Nick. Somehow, people seemed to have known he needed a little extra support these past two weeks and I will validate the positive impact it has had on him and we thank you!
It's so easy to succumb to the weight of this illness and sometimes it's ok to go ahead and feel it all. We try to remember to let it go so that the happiness and joy that still exists in our world can come back into our hearts. Thank you all for helping us to let it go.
With love,
Lori
Yesterday was much better. He did sleep a little better being back in his own bed, he showered and we finally got 6 cans of nutrition in his body - first time! He played the "stack it" game with Kelsey (she proceeded to whoop him soundly). He took a walk outside with Lee and I (two houses down and back). He is drinking warm Sprite and had about 3 bites of tomato soup. He is enjoying the company of friends and is thoroughly addicted to "Lost" (I started renting the first season).
The thought of going back to chemo as soon as Monday is difficult. We did get a phone call yesterday from Dr. Chen's office saying that she will reduced the amount of chemo by 20% because he had such a difficult time.
One highlight from last week is a "prayer shawl" Nick received from his dad's friends, Bernie & Annabelle Kowalski from Colorado. If you are reading this posting, please take a few minutes to look at the website - www.shawlministry.com. It is a FABULOUS collaboration of women utilizing their hands, spirituality and compassion for those in need. Annabelle was given a shawl to give to someone who specifically had cancer; she knew just who to give it to. I'm going to forward this website to our church, as well, to see if our own community will embrace this practice (if not already doing so). Bernie & Annabelle - thank you! Nick will also thank you himself once he is feeling better. I have the shawl close to him.
Also, Nick has received some spontaneous and heartfelt emails and cards from both those that know Nick and those that have never met Nick. Somehow, people seemed to have known he needed a little extra support these past two weeks and I will validate the positive impact it has had on him and we thank you!
It's so easy to succumb to the weight of this illness and sometimes it's ok to go ahead and feel it all. We try to remember to let it go so that the happiness and joy that still exists in our world can come back into our hearts. Thank you all for helping us to let it go.
With love,
Lori
Saturday, June 23, 2007
A little ray of sunshine
It's a beautiful Saturday morning! Nick's white counts are finally on the rise and his fever is declining proportionately. He is still on the feeding tube, pain meds, antibiotics and hydrating fluids. He is slowly recovering his strength, the swelling in his right eye and cheek are starting to reduce, his skin damaged by the radiation is starting to return to normal, he can speak a bit clearer, he isn't having to use the suction tube for the mucus nearly as much and he, unbelievably, still has a sense of humor. He is able to take a shower entirely free of his constantant companion, Ivy (the pole that carries all of his iv meds). To my proud amazement, he doesn't complain or whine. I do.
Yesterday, he spent considerable time out on the terrace with Savanna, just enjoying the mountains, fresh air and friendship. I think that did more for him than what the doctors have done all week.
Earlier in the week, he met a young man by the name of Mike, age 21. Mike has stage 4 rhabdomyosarcoma in his right sinus cavity and lymph nodes - just like Nick - the only difference is that Nick has alveolar and Mike has embryonic. They have the same oncologist but Nick wasn't interested in meeting Mike until this week. Mike was diagnosed in November, has completed 4 rounds of chemo and 28 radiation treatments. He had surgery last month and is in remission. He has to take another 4 rounds of chemo to make sure the cancer doesn't come back. He is just across the floor from Nick beginning round 5. He came in and reassured Nick that this would be his worst week and promised him it would get better. I mostly asked questions as Nick couldn't talk very well. They have alot in common and it was good they had a chance to visit.
I also found a very helpful online support group specifically comprised of parents of children with rhabdo (and a handful of young adults with rhabdo). You can ask questions, share your fears, vent, anything you want to say and there is someone out there that knows what you are going through. I shared one response with Nick and he went ahead and signed up as well. His first question was how to help with his mouth sores. Within minutes, he received dozens of suggestions; as soon as he can swallow again, we'll start tyring some of the shared ideas.
The doctors anticipate another 2-3 more days in the hospital. They never did confirm the source of his infection and Nick needs to be off antibiotics with no fever for him to go home. Good news is that perhaps he won't have to start chemo on July 2nd as his body just isn't ready yet.
Once again, with gratitude, we thank you all for the prayers.
Mom
Lori
Yesterday, he spent considerable time out on the terrace with Savanna, just enjoying the mountains, fresh air and friendship. I think that did more for him than what the doctors have done all week.
Earlier in the week, he met a young man by the name of Mike, age 21. Mike has stage 4 rhabdomyosarcoma in his right sinus cavity and lymph nodes - just like Nick - the only difference is that Nick has alveolar and Mike has embryonic. They have the same oncologist but Nick wasn't interested in meeting Mike until this week. Mike was diagnosed in November, has completed 4 rounds of chemo and 28 radiation treatments. He had surgery last month and is in remission. He has to take another 4 rounds of chemo to make sure the cancer doesn't come back. He is just across the floor from Nick beginning round 5. He came in and reassured Nick that this would be his worst week and promised him it would get better. I mostly asked questions as Nick couldn't talk very well. They have alot in common and it was good they had a chance to visit.
I also found a very helpful online support group specifically comprised of parents of children with rhabdo (and a handful of young adults with rhabdo). You can ask questions, share your fears, vent, anything you want to say and there is someone out there that knows what you are going through. I shared one response with Nick and he went ahead and signed up as well. His first question was how to help with his mouth sores. Within minutes, he received dozens of suggestions; as soon as he can swallow again, we'll start tyring some of the shared ideas.
The doctors anticipate another 2-3 more days in the hospital. They never did confirm the source of his infection and Nick needs to be off antibiotics with no fever for him to go home. Good news is that perhaps he won't have to start chemo on July 2nd as his body just isn't ready yet.
Once again, with gratitude, we thank you all for the prayers.
Mom
Lori
Tuesday, June 19, 2007
@$%&!* and then some!
Well, we made it until 5:00 p.m. Monday afternoon when I checked his temperature at home and it was 102. After a quick call to the on-call doctor, we were back at Huntsman - room 4505 to be exact. I say back because we had just been there earlier in the day to have labs drawn, when he got sick and threw up a portion of his feeding tube, where it was coiled in the back of his throat.. It took us a couple of hours to get him to radiology and have it adjusted properly. To add insult to injury, his white blood cell count is zero. Not exactly a great time to be wandering the halls of the Univ of Utah Hospital and Huntsman.
Positives - he is safe and well-tended. He is on antibiotics, Tylenol, feeding tube, anti-mucus and anti-nausea meds, hydrating iv's and a wonderful machine that gives him his pain medication on demand (his mouth and esophogus are as bad as it ever has been before and he cannot speak). His chest x-rays are clear, he hasn't thrown up since he's been admitted and he's maintained a fever of 101 since this afternoon (spiked to 103 last night). He is getting some much needed sleep today AND, he should only be getting better from here on out. They don't expect his temp to be high for very much longer and his mouth issue should be improving every day.
He received about 30 letters from our church youth group on Sunday and I will finish reading them to him tonight. It's quiet and peaceful today so we'll absorb the healing and loving energy that is surrounding him so his weary body will recover.
Love, Lori
Positives - he is safe and well-tended. He is on antibiotics, Tylenol, feeding tube, anti-mucus and anti-nausea meds, hydrating iv's and a wonderful machine that gives him his pain medication on demand (his mouth and esophogus are as bad as it ever has been before and he cannot speak). His chest x-rays are clear, he hasn't thrown up since he's been admitted and he's maintained a fever of 101 since this afternoon (spiked to 103 last night). He is getting some much needed sleep today AND, he should only be getting better from here on out. They don't expect his temp to be high for very much longer and his mouth issue should be improving every day.
He received about 30 letters from our church youth group on Sunday and I will finish reading them to him tonight. It's quiet and peaceful today so we'll absorb the healing and loving energy that is surrounding him so his weary body will recover.
Love, Lori
Sunday, June 17, 2007
Round 3 Completed!
He did it! Both radiation and round 3 of chemo have been completed (radiation graduation picture) - and let me tell you it has not been an easy feat for Nick. Rather than give any more energy to the effects of the drugs done to Nick's body this past week, I'll share some of the highlights:Nick's friends brought this mask to help him "wrestle" cancer!
He was also visited by his Cowboy godmothers... They came to rob him of all the candy and cookies he had stashed in his room. It was a bust, unfortunately. Not a speck of sugar in the room!
And the neighborhood family...
This has been a particularly rough week for Nick. He is on a feeding tube this week so he can still get some nutrition in his body while his mouth and throat heal. So far he's avoided being admitted back into the hospital. Our favorite nurse, Mary, was there for part of the week, which is always so special.
Also, the combined efforts of our family has been so amazing; Lee's calm, constant and loving support for me, as well as for Carly and Kelsey while I've been at the hospital (their lives are just as hectic with softball season in full swing - pardon the pun); Carly actually went and rescued Scooter when he ran away last week without any complaint or having to ask and she has also helped run errands, help with Kelsey's birthday party, grocery shopping and taking Kelsey to practice and attend her games when we can't be there; and Kelsey helps me with Nick's feeding tube and does her best to keep her room clean. Nick's dad, Todd, rolls his sleeves up to help hold Nick up while he is getting sick and taking turns staying at the hospital; we all seem to fill in naturally when needed.
We're very grateful for the continued prayers, support and encouragement. We are hoping by next week, he'll be able to eat like a healthy 18 year-old young man.
With love, Lori
Wednesday, June 13, 2007
Round 3
Nick Typing:
This 3rd cylce has really kicked my butt. I started the cycle already pretty tired and eating was already hard becuase of the radiation which is why this treatment has been so hard.
The reason for my eating problems is because the radiation has killed my salivary gland, which has created a thick mucus to form in my mouth. ITS DISGUSTING! It takes forever to wash out and coats my entire mouth, coating anything I try to eat which makes me gag since it feels like swallowing something covered in snot. It really is gross. But I have found some tricks....... Baking Soda and water seem to help, tomato soup goes down nice, and lastly Cheerios has been a lifesaver in the hospital. I can somewhat taste it and its good for me to eat so it worked out well.
Now that I have started my 3rd cycle the mouth sores have started, and I still have the mouth mucus so its even harder to eat now. UGGGHHHHHH! It should be a week or two before the mucus is gone and that will be a huge help when it is. My last day of radiation is tomorrow.......... HURRAY!
This 3rd cylce has really kicked my butt. I started the cycle already pretty tired and eating was already hard becuase of the radiation which is why this treatment has been so hard.
The reason for my eating problems is because the radiation has killed my salivary gland, which has created a thick mucus to form in my mouth. ITS DISGUSTING! It takes forever to wash out and coats my entire mouth, coating anything I try to eat which makes me gag since it feels like swallowing something covered in snot. It really is gross. But I have found some tricks....... Baking Soda and water seem to help, tomato soup goes down nice, and lastly Cheerios has been a lifesaver in the hospital. I can somewhat taste it and its good for me to eat so it worked out well.
Now that I have started my 3rd cycle the mouth sores have started, and I still have the mouth mucus so its even harder to eat now. UGGGHHHHHH! It should be a week or two before the mucus is gone and that will be a huge help when it is. My last day of radiation is tomorrow.......... HURRAY!
Saturday, June 9, 2007
Nick is going to be his own statistic
Dad here....
I wanted to first thank family and friends for your words of encouragement and prayer. The chemo Nick received two weeks ago kicked his butt! Nick has lost over 25 lbs in the last 3 weeks and although he will tell you he's starving he is unalbe to eat anything substantial. The biggest reason is due to the radiation which has killed his saliva gland and is causing mucus build-up in his mouth. Any food or liquid he tries to eat gets covered with this mucus causing him to gag and makes it almost impossible to swallow. Nick is able to drink an 8 oz of a energy drink twice a day and consumes a small amount of tomato soup. Lori read that over 40% of Cancer patients die from poor nutrition and she is currently working with a nutritionist for solutions. I am supprised by the limited amout of information on nutrition and cancer.
Nick will be returning to the hospital on Sunday, June 10th for his third cycle of chemo (five days of treatment) which consists of Vincristine, Ifosfamide and Etoposide. After his forth cycle of chemo the Etoposide will be replaced by Adriamycin for the next four cycles. Adriamycin could not be used while Nick was receiving radiation. I believe this could be the hardest week for Nick because he is so thin and tired sleeping 14-16 hours each day. My hope is that after he completes the radiation on June 14th that we will begin to see Nick eating more and gaining strength and weight.
We met with Dr. Hitchcock (radiation) on Wednesday, June 6th to go over the recent CT and MRI scans and confirmed that the tumor has been responding well to the chemo and radiation. From the scans I would conservatively estimate that the tumor is 20-25% smaller from when we had the first scans performed. My concerns at the moment are Nick's weight loss, risk of infection and the chance that that this tumor could become resistant to treatment. If the tumor becomes resistant then surgery would be performed now rather then later and because of its location would be difficult. My wish is that after the eight cycles of chemo the tumor will be to a more manageable size that would allow for surgery to remove most if not all of the remaining tumor followed by additional chemo to kill any remaining microscopic deposits. The best case would be to completly kill the tumor with chemo and that surgery would not be required. I would like to see Nick off chemo as soon as possible. If anyone has success stories on Alveolar Rhabdomyosarcomas I would love to hear them.
Thanks,
Todd
I wanted to first thank family and friends for your words of encouragement and prayer. The chemo Nick received two weeks ago kicked his butt! Nick has lost over 25 lbs in the last 3 weeks and although he will tell you he's starving he is unalbe to eat anything substantial. The biggest reason is due to the radiation which has killed his saliva gland and is causing mucus build-up in his mouth. Any food or liquid he tries to eat gets covered with this mucus causing him to gag and makes it almost impossible to swallow. Nick is able to drink an 8 oz of a energy drink twice a day and consumes a small amount of tomato soup. Lori read that over 40% of Cancer patients die from poor nutrition and she is currently working with a nutritionist for solutions. I am supprised by the limited amout of information on nutrition and cancer.
Nick will be returning to the hospital on Sunday, June 10th for his third cycle of chemo (five days of treatment) which consists of Vincristine, Ifosfamide and Etoposide. After his forth cycle of chemo the Etoposide will be replaced by Adriamycin for the next four cycles. Adriamycin could not be used while Nick was receiving radiation. I believe this could be the hardest week for Nick because he is so thin and tired sleeping 14-16 hours each day. My hope is that after he completes the radiation on June 14th that we will begin to see Nick eating more and gaining strength and weight.
We met with Dr. Hitchcock (radiation) on Wednesday, June 6th to go over the recent CT and MRI scans and confirmed that the tumor has been responding well to the chemo and radiation. From the scans I would conservatively estimate that the tumor is 20-25% smaller from when we had the first scans performed. My concerns at the moment are Nick's weight loss, risk of infection and the chance that that this tumor could become resistant to treatment. If the tumor becomes resistant then surgery would be performed now rather then later and because of its location would be difficult. My wish is that after the eight cycles of chemo the tumor will be to a more manageable size that would allow for surgery to remove most if not all of the remaining tumor followed by additional chemo to kill any remaining microscopic deposits. The best case would be to completly kill the tumor with chemo and that surgery would not be required. I would like to see Nick off chemo as soon as possible. If anyone has success stories on Alveolar Rhabdomyosarcomas I would love to hear them.
Thanks,
Todd
Friday, June 1, 2007
Graduation
I had my graduation yesterday at noon and it was one of the funnest days of high school. I was told the day before from my doctor that if my blood count wasn't at least a 1.0, I wouldn't be able to go. Fortunatley it went up to 2.1 on the day of graduation so there was no problems.I had to go to radiation at 8 a.m. in the morning so that I could make my 12 o clock graduation. After radiation and some blood work my mom and I ran home where I showered and threw on some church clothes and my ski hat with some killer shades. I walked upstairs greeted by lots of family and was pleased to see them. My Uncle Stan had some sweet gifts that he had brought from California that consisted of a Anaheim Mighty Ducks jersey, hat, and official Sierra Automotive shirt. It was great, especially since it made me an official Ducks fan. Soon after that Savanna, Mandee, Brandi, and Jammi arrived to take me to graduation. I was off!
At graduation I was greeted by almost everyone and felt the eagerness/nervousness of graduating....... it came so quickly. We eventually lined up in alphabetical order and began to walk into the tunnel with my graduating class of almost 500 students. During the graduation there were some boring speeches as expected but soon enough diplomas were being given and it was cool to watch everyone you know receive their diplomas and smile the whole time. In what seemed like a decade, I was finally in line to have my name read and receive my diploma. I was excited! As I began walking to the speaker, I could feel everyones eyes on me and even though everyone else probably did, I felt extra special. The reader then reads: Nicholas William Raitt, Magna Cum Laude.......... but you could't even hear the "Magna Cum Laude" read because half of the graduating class and some of the parents were all on their feet screaming and clapping. This was the last thing I had expected, for the majority of the students had only received shouts of congrats and cheers from family and a few graduating students. It was incredible!
After graduation, I posed for a ton of pictures and gave a million more hugs. It was a great day and one of my more honorable ones too. Congrats to the graduating class of 2007..... Go Lancers.
Oh, one thing did go wrong at graduation - they spelled my last name wrong on my diploma. AH! I knew it would happen!
The gang!
Me & Mom
Lee & Mom
My sisters, Carly & Kelsey
My grandparents
Uncle Stan, Dad, Kelsey, Aunt Chris & Carly
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