...born January 17th, 1989, earned his angel wings on June 2nd, 2011 at the age of 22.
Tuesday didn't start out well for Nick as he took a tumble trying to walk from his bed to the bathroom. Gave himself a bloody nose and gave us quite a scare, but he promised to ask for help when needing to walk somewhere. By Tuesday afternoon, he was on his cell phone talking to one of his buddies, "Just waiting for dinner, so if you come over, come hungry!" I was cooking spaghetti and he could smell it. Turns out he invited a few of his friends over to watch the NBA playoffs. He was mostly confused and sleepy but contributed to the manly conversation of statistics and athletic skill sporadically throughout the game. He would look at his cell phone often with a curious gaze, not sure what that contraption was supposed to do. How he actually made phone calls is beyond me. He declined eating anything and started to drink less and less water. He was so alert at some points, I kissed the top of his head and told him he looked down right healthy. He'd respond, "I know!"
By bedtime Tuesday, I told him I may or may not sleep in his room, but if he needed help, he was to call for me. He said, "Ok, I'll call for you, or... (lowers his voice softly) whisper for you if you are sleeping next to me." He ended up needing help often - we were up four times for restroom runs. Then about 4:00 a.m., he began throwing up - a lot! We finally just got up at 6:00 a.m. and moved to the couch and he said he was having severe pain in his left shoulder. Hospice came over Wednesday morning around 9:30 a.m. His vitals were just barely beginning to drop and we gave him some liquid morphine for the pain. And then he took quite the nap.
I sat by him all morning and afternoon, as did Lee, Todd & Carly. By 8:00 p.m., his breathing became a little labored and I couldn't get him to respond to me if he was in any pain. I became upset and called for the hospice nurse again. His vitals had dropped significantly and she advised us we had anywhere from now until 72 hours left with him. Lee gently carried him back into his own bedroom so he could be comfortable. Lee was able to have a special conversation with Nick while I consoled the girls. Then Lee, Carly, Kelsey and myself all went into his room and had a family prayer. Just as we said "Amen", Nick opened his eyes and said, "Hey, what is going on in here?", just like he had walked into an intervention. We smiled and said, "We are praying," and he said, "Oh, ok."
Todd came back and we all sat in Nick's room, recalling various stories while holding his hand or touching his arm. One particularly sweet moment happened while we were trying to scooch Nick up closer to the headboard so his long legs would fit on the bed. Todd was on the side of the bed and I was behind Nick on the bed. Todd was trying to lift Nick and put his arms around his body, while Nick draped his arms around Todd's neck. Then all of a sudden, Nick said, "Oh, hug..." and embraced Todd. Todd was so surprised as Nick never likes to hug and embraced him back. Nick didn't want to let go. It was such a touching gift Nick gave his dad. It is amazing how blessed we all were to have our own special one-on-one moments with Nick.
By midnight, we were all pretty tired and decided to take turns. Todd took the first shift and we all went to our own beds. At 2:19, Todd called for me and I came into Nick's room just as he had taken his last breath. Todd said it was very peaceful. We woke the rest of the family and called hospice again.
Nick's dog, Scooter, is so sad. He sat by Nick's spot on the couch, placed his face between his paws and just looked towards Nick's bedroom with the saddest eyes. He stayed in Nick's room when we were all in there together and he came out just after Nick passed looking for some love. This is unusual because he is such a teenager when it comes to sleeping - he needs about 12 hours a day.
I know our angels are still here as when my hatred of cancer comes boiling over for taking Nick away, the rage dissipates immediately and I only have an overwhelming feeling of love for my sweet boy. There are so many more stories but will keep them with our family for now.
So much to do... Funeral information will be decided later today. Thank you all so much for your love.
With enormous gratitude,
Lori, Lee, Carly, Kelsey and Todd
and Scooter, too
Thursday, June 2, 2011
Monday, May 30, 2011
CureSearch
Nick's WACKY Warriors donates 100% of donations received to both First Descents and CureSearch (50/50). We write often of First Descents because Nick has been a camper and counselor and the friendships with other campers and counselors we have formed are priceless. I can't possibly express the positive impact FD has had on Nick, emotionally, physically and spiritually.
But today, I want to write about CureSearch. This foundation is totally dedicated to childhood cancer research, including clinical trials like the one Nick was just enrolled in. Once I'm able to focus, I will post more information on this blog, the WACKY website (http://www.wackywarriors.org/) and Wacky's Facebook page. Until then, I'd like to share a story:
Yesterday, Nick received a large envelope from the Salt Lake City CureSearch Committee (Nick and I are on the committee, too, to promote the first annual CureSearch walk in Salt Lake City on July 9th). Inside were precious handwritten notes from their own group of children (local CureSearch) - all with cancer - Nathanael, Cami, Skyler, Izzy, Millie, Ellie, Brinley, Carson, Jade, Kaidan and Koda. They colored sweet notes that said,
"Tank You!"
"Dear Nick, Thank U for caring for childhood cancer. It means a lot for everyone. Good job fighting hard and being tough. Thanks so, so much!"
"Dear Nick, thank you for helping cancer kids. We love you. Bye. XOXO" (each letter written in a different color crayon.)
One mother showed her 3 1/2 year old daughter with cancer a picture from Nick's blog and that he had cancer, too - what would she like to tell him. She said, "Tell him I love him!"
Another note said, "nIck, I (heart) u" with a dollar enclosed.
This was one of the most tender thank-you packages we have ever received. How beautiful is a message from a four-year old thanking Nick for helping fight cancer? You can bet we will have a team of WACKY participants out on July 9th!
Also, if you visit Wacky's facebook page, you will see pictures of Larry Linne participating at the Ironhorse bike race with Nick's picture pinned to his glove for constant inspiration. Larry is gearing up for the Leadville 100 in Colorado on August 13th. You can bet we'll be there, too!
Finally, Nick is pretty sleepy all the time and gets confused between dream world and real world. He'll ask me randomly about chocolate (atta boy!) or my Ebay bid coming through (never been on Ebay). But then he will answer a question someone in the room will ask ("How old is that athlete? or "What is the prize money for winning the game show?") and he'll know the correct answer, all with his eyes closed. We ordered take-out from Wingers last night, although Nick requested his favorite meal from Chili's. When it arrived, Nick was the first one to wobble over to the kitchen counter to sit down, oblivious he hasn't eaten a thing in the past two days. I said, "Nick, are you hungry?" and he replied, "Well, isn't this what we are supposed to do?" So we all sat down by him, blessed the food and dug in. He ate one teeny, tiny piece of chicken and closed his eyes while the rest of us finished up. Too cute.
He had a rough night last night. This morning as I lead him from his bed to the couch, I teased him that his pajama shorts were inside out. "Aw, dang it, how can you tell?" he said sleepily. "Well, your pockets are on the outside." "Geez, I even looked for that..., will you help me change them back?" I said, "Don't worry about it." But he said, "No, I don't want to be talking in my sleep with my pockets inside-out. Too much." We changed them back.
More later,
Love, Lori
But today, I want to write about CureSearch. This foundation is totally dedicated to childhood cancer research, including clinical trials like the one Nick was just enrolled in. Once I'm able to focus, I will post more information on this blog, the WACKY website (http://www.wackywarriors.org/) and Wacky's Facebook page. Until then, I'd like to share a story:
Yesterday, Nick received a large envelope from the Salt Lake City CureSearch Committee (Nick and I are on the committee, too, to promote the first annual CureSearch walk in Salt Lake City on July 9th). Inside were precious handwritten notes from their own group of children (local CureSearch) - all with cancer - Nathanael, Cami, Skyler, Izzy, Millie, Ellie, Brinley, Carson, Jade, Kaidan and Koda. They colored sweet notes that said,
"Tank You!"
"Dear Nick, Thank U for caring for childhood cancer. It means a lot for everyone. Good job fighting hard and being tough. Thanks so, so much!"
"Dear Nick, thank you for helping cancer kids. We love you. Bye. XOXO" (each letter written in a different color crayon.)
One mother showed her 3 1/2 year old daughter with cancer a picture from Nick's blog and that he had cancer, too - what would she like to tell him. She said, "Tell him I love him!"
Another note said, "nIck, I (heart) u" with a dollar enclosed.
This was one of the most tender thank-you packages we have ever received. How beautiful is a message from a four-year old thanking Nick for helping fight cancer? You can bet we will have a team of WACKY participants out on July 9th!
Also, if you visit Wacky's facebook page, you will see pictures of Larry Linne participating at the Ironhorse bike race with Nick's picture pinned to his glove for constant inspiration. Larry is gearing up for the Leadville 100 in Colorado on August 13th. You can bet we'll be there, too!
Finally, Nick is pretty sleepy all the time and gets confused between dream world and real world. He'll ask me randomly about chocolate (atta boy!) or my Ebay bid coming through (never been on Ebay). But then he will answer a question someone in the room will ask ("How old is that athlete? or "What is the prize money for winning the game show?") and he'll know the correct answer, all with his eyes closed. We ordered take-out from Wingers last night, although Nick requested his favorite meal from Chili's. When it arrived, Nick was the first one to wobble over to the kitchen counter to sit down, oblivious he hasn't eaten a thing in the past two days. I said, "Nick, are you hungry?" and he replied, "Well, isn't this what we are supposed to do?" So we all sat down by him, blessed the food and dug in. He ate one teeny, tiny piece of chicken and closed his eyes while the rest of us finished up. Too cute.
He had a rough night last night. This morning as I lead him from his bed to the couch, I teased him that his pajama shorts were inside out. "Aw, dang it, how can you tell?" he said sleepily. "Well, your pockets are on the outside." "Geez, I even looked for that..., will you help me change them back?" I said, "Don't worry about it." But he said, "No, I don't want to be talking in my sleep with my pockets inside-out. Too much." We changed them back.
More later,
Love, Lori
Sunday, May 29, 2011
Spirit Ribbons
I have to say, Friday and Saturday were hard days for Nick. He was pretty sick and I called in the nurse. She gave him some different meds to keep his stomach calm (it worked) and we increased his pain meds again (it worked). He slept on and off most of the time on the couch, always wanting to be nearby everyone in the center of the house.
As Nick gets weaker, my emotions grow stronger, right out there on my sleeve, next to the tissues. Nick has asked me to help him write a few letters of gratitude to those he has special connections with. We did it, although he was in and out of sleep (thank goodness, so he couldn't see my tears as he spoke and I typed). Some of the emails we have received are so amazingly eloquent and I'm not sure my wavering voice does them justice as I read them aloud to Nick.
Kelsey had her first tournament with her comp team, the Bukoos, this weekend. There are two teammates that now play with another team - Avalanche - this year, but we remain close to the players and parents, regardless of their uniform color. The Bukoos have been integral in our annual charity softball tournaments, with an obvious emotional connection with Kelsey and Nick. At the last charity tournament, one of the mom's handed out "Spirit Ribbons" for each player, parent, umpire, etc. to wear throughout the tournament in support of Nick. Todd and I have been taking turns going to Kelsey's games this weekend (along with Lee, Carly and grandparents). When I arrived to Saturday's game, the entire Avalanche team, including coaches and parents, were wearing the same "Spirit Ribbons", again showing support for Nick's journey. Where is that tissue?
We still have connections, too, with Carly's old comp team, Xtreme. They always volunteer at the charity tournaments - couldn't do it without them. Carly has been our personal angel here at home, bringing out comedy videos, running errands, joining Nick in scolding me on my parenting skills with Kelsey, "I believe our curfew was 9:00!!!!" or just hanging out on the couch with Nick. Sweet girl. Tissue?
Makelle left this morning and my parents leave early this afternoon. Just bring me the box...
Nick is doing well this morning, so I'm doing well this morning. Please keep those prayers coming - they are working miracles in our home!
Love Lori
As Nick gets weaker, my emotions grow stronger, right out there on my sleeve, next to the tissues. Nick has asked me to help him write a few letters of gratitude to those he has special connections with. We did it, although he was in and out of sleep (thank goodness, so he couldn't see my tears as he spoke and I typed). Some of the emails we have received are so amazingly eloquent and I'm not sure my wavering voice does them justice as I read them aloud to Nick.
Kelsey had her first tournament with her comp team, the Bukoos, this weekend. There are two teammates that now play with another team - Avalanche - this year, but we remain close to the players and parents, regardless of their uniform color. The Bukoos have been integral in our annual charity softball tournaments, with an obvious emotional connection with Kelsey and Nick. At the last charity tournament, one of the mom's handed out "Spirit Ribbons" for each player, parent, umpire, etc. to wear throughout the tournament in support of Nick. Todd and I have been taking turns going to Kelsey's games this weekend (along with Lee, Carly and grandparents). When I arrived to Saturday's game, the entire Avalanche team, including coaches and parents, were wearing the same "Spirit Ribbons", again showing support for Nick's journey. Where is that tissue?
We still have connections, too, with Carly's old comp team, Xtreme. They always volunteer at the charity tournaments - couldn't do it without them. Carly has been our personal angel here at home, bringing out comedy videos, running errands, joining Nick in scolding me on my parenting skills with Kelsey, "I believe our curfew was 9:00!!!!" or just hanging out on the couch with Nick. Sweet girl. Tissue?
Makelle left this morning and my parents leave early this afternoon. Just bring me the box...
Nick is doing well this morning, so I'm doing well this morning. Please keep those prayers coming - they are working miracles in our home!
Love Lori
Thursday, May 26, 2011
Water for Elephants
Nick has been doing quite well these past few days, despite having to slowly increase his pain medication and his tummy isn't looking so good. He is sleeping well at night and yesterday, he actually talked Lee & Carly into taking him to go see "Water for Elephants" and loved it. It was quite an adventure getting off the couch and doing something "normal" for a few hours. Kelsey and I had to attend her end-of-season high school softball barbecue - she received her high school letter as a freshman, so it was a big deal for her.
Makelle surprised him yesterday by flying in from Philadelphia; he was really happy to see her. The entire entourage of cutie pies descended upon our couch last night, rooting on the American Idol finalists. Also, Grandma & Grandpa arrive yesterday, too, visiting for a couple of days. Add the two dogs and we have a full house.
But today, he isn't feeling too well and wasn't up to having any visitors. Regardless, his spirits are in fine fettle as Carly, Nick and I watched Michael Jackson's "This Is It" DVD; I was in the middle with Nick and Carly singing along. It was a great time for me and still makes me smile.
We have been inundated with emails, texts and postings - THANK YOU all so much! It is wonderful to have such a whirlwind of prayerful energy surround our home and hearts. Our house must be glowing. Although surreal, it is good. Nick and I are working through things slowly, but tenderly. Mostly I just sit by him on the couch and rub his feet, hands or his head. He has enough hair now to get bed head. Cute.
With love,
Lori
Makelle surprised him yesterday by flying in from Philadelphia; he was really happy to see her. The entire entourage of cutie pies descended upon our couch last night, rooting on the American Idol finalists. Also, Grandma & Grandpa arrive yesterday, too, visiting for a couple of days. Add the two dogs and we have a full house.
But today, he isn't feeling too well and wasn't up to having any visitors. Regardless, his spirits are in fine fettle as Carly, Nick and I watched Michael Jackson's "This Is It" DVD; I was in the middle with Nick and Carly singing along. It was a great time for me and still makes me smile.
We have been inundated with emails, texts and postings - THANK YOU all so much! It is wonderful to have such a whirlwind of prayerful energy surround our home and hearts. Our house must be glowing. Although surreal, it is good. Nick and I are working through things slowly, but tenderly. Mostly I just sit by him on the couch and rub his feet, hands or his head. He has enough hair now to get bed head. Cute.
With love,
Lori
Monday, May 23, 2011
And hospice begins...
On Friday, we began to feel better once we got home. I don't know how to explain this very well, but we believe our house is FULL of angels. The strong feeling here is calm, peaceful and comforting.
While Todd called Carly in St. Louis, Lee and I took Kelsey aside and told her the news. Both girls took it as well as can be expected and thankfully surrounded by loving family members. We left it up to Carly to decide if she wanted to come home early ( she is scheduled to come home tonight), but she felt she was in good, supportive hands with her extended family. She was able to have some late night, all night conversations, and prayerful, thoughtful discussions. She is comforted. Kelsey chose to forge ahead and went to be with her softball family for practice. Her coach let her teammates know of the situation by reading them the latest blog entry. Though emotional for all, she is comforted, too.
Saturday morning, Nick and I had a short conversation about hospice. He simply said, "well, chemo is just going to prolong things and make me sicker than I already am - how much time do I have?" I could not believe I was having this discussion with my son. I can think of a MILLION things to say, except "two weeks." We met with the hospice nurse for about 30 minutes and got everything in order, although we don't need any services yet. I'm still able to convince Nick to hit the showers on a fairly regular basis and his pain is still under control.
After Kelsey finished up practice, Lee offered to take her over to the Ogden Marathon, where Todd and his girlfriend, Leigh, were running the full marathon. Kelsey was able to surprise her dad a few blocks from the finish line and ran with him to finish, metal cleats and all. It was a very sweet and much needed emotional gift she gave him and very sweet of Lee to get her there.
Nick had a full house most of the day with friends coming to just hang out for awhile. I ordered pizza and sliced up some fresh watermelon (odd combo, I know) and he finally booted the last two friends out at 9:00 p.m. We had a few more visitors on Sunday and today. He had to bump up his meds today as his pain is starting to creep up and his tummy is getting a little fuller. He is eating a little and drinking a lot. He knows the status of both the basketball and hockey playoffs, which is good for me, because I can't remember anything. He even helped Kelsey solve the surface area of a cone for math a few days ago, too.
He is beginning to decline visitors and phone calls now, though, embracing his emotional and physical privacy. He is taking some time to write a few things down and we are able to have some open conversations about our feelings. We have so much more to say.
Please be sure to call first (801-554-5505) before coming over, as Nick may not feel up to receiving company. If you would like to send Nick a note, our physical addrress is: 2777 N. 2175 E., Layton, UT 84040; and my email address is: lorib@quadrantliving.com.
Thank you, everyone, for the prayerful words of encouragement and love - the emails, texts, Facebook posts, cards and blog posts. The prayers are being answered, evidenced by the amazing Spirit that has surrounded our home and hearts.
With love,
Lori
While Todd called Carly in St. Louis, Lee and I took Kelsey aside and told her the news. Both girls took it as well as can be expected and thankfully surrounded by loving family members. We left it up to Carly to decide if she wanted to come home early ( she is scheduled to come home tonight), but she felt she was in good, supportive hands with her extended family. She was able to have some late night, all night conversations, and prayerful, thoughtful discussions. She is comforted. Kelsey chose to forge ahead and went to be with her softball family for practice. Her coach let her teammates know of the situation by reading them the latest blog entry. Though emotional for all, she is comforted, too.
Saturday morning, Nick and I had a short conversation about hospice. He simply said, "well, chemo is just going to prolong things and make me sicker than I already am - how much time do I have?" I could not believe I was having this discussion with my son. I can think of a MILLION things to say, except "two weeks." We met with the hospice nurse for about 30 minutes and got everything in order, although we don't need any services yet. I'm still able to convince Nick to hit the showers on a fairly regular basis and his pain is still under control.
After Kelsey finished up practice, Lee offered to take her over to the Ogden Marathon, where Todd and his girlfriend, Leigh, were running the full marathon. Kelsey was able to surprise her dad a few blocks from the finish line and ran with him to finish, metal cleats and all. It was a very sweet and much needed emotional gift she gave him and very sweet of Lee to get her there.
Nick had a full house most of the day with friends coming to just hang out for awhile. I ordered pizza and sliced up some fresh watermelon (odd combo, I know) and he finally booted the last two friends out at 9:00 p.m. We had a few more visitors on Sunday and today. He had to bump up his meds today as his pain is starting to creep up and his tummy is getting a little fuller. He is eating a little and drinking a lot. He knows the status of both the basketball and hockey playoffs, which is good for me, because I can't remember anything. He even helped Kelsey solve the surface area of a cone for math a few days ago, too.
He is beginning to decline visitors and phone calls now, though, embracing his emotional and physical privacy. He is taking some time to write a few things down and we are able to have some open conversations about our feelings. We have so much more to say.
Please be sure to call first (801-554-5505) before coming over, as Nick may not feel up to receiving company. If you would like to send Nick a note, our physical addrress is: 2777 N. 2175 E., Layton, UT 84040; and my email address is: lorib@quadrantliving.com.
Thank you, everyone, for the prayerful words of encouragement and love - the emails, texts, Facebook posts, cards and blog posts. The prayers are being answered, evidenced by the amazing Spirit that has surrounded our home and hearts.
With love,
Lori
Friday, May 20, 2011
It's a sad day...
The doctors came in today with the ct scan results: the cancer has spread everywhere in Nick's abdomen. He is officially off the clinical trial. Due to his severe state of malnutrition, chemo is not recommended because his body cannot tolerate it. The cancer is affecting his ability to eat and digest food (through the intestines), so it doesn't make sense to have a feeding tube.
So.... the recommendation is to obtain the services of hospice as soon as possible. Here is the most difficult part - they anticipate Nick's remaining time here on earth to be about two weeks. They discharged him this afternoon and we are now at home. Nick still wants this weekend to decide his next steps; doctors will continue chemo if he wants them to. Dr. Gouw will call us tomorrow to finalize Nick's plans.
We are devastated, to say the least. When Nick asked me how I was going to tell the girls, I just cried and said I don't know. I asked him how he was handling all of this and he said, "I'm ok, really." We have a lot more talking, crying and praying to do this weekend as we prepare for his next journey.
Please call first if you would like to come and visit Nick - 801-554-5505.
Just to keep the tradition of bringing in a ray of light, here is a quick story: Nick's room was at the very end of the hall at Huntsman, right smack next to the construction where Huntsman is adding on another multi-million dollar facility. We have heard some very interesting and colorful conversations the past 24 hours; some construction workers can actually look into his room from the outside. One of Nick's medical personnel said, "Oh, Nick, you should really have some fun with this..." to which Nick responded immediately, "Should I fake a seizure for them?"
And for now, here is a picture of Nick and Makelle on her wedding day - this makes us all smile!
With love,
Lori
So.... the recommendation is to obtain the services of hospice as soon as possible. Here is the most difficult part - they anticipate Nick's remaining time here on earth to be about two weeks. They discharged him this afternoon and we are now at home. Nick still wants this weekend to decide his next steps; doctors will continue chemo if he wants them to. Dr. Gouw will call us tomorrow to finalize Nick's plans.
We are devastated, to say the least. When Nick asked me how I was going to tell the girls, I just cried and said I don't know. I asked him how he was handling all of this and he said, "I'm ok, really." We have a lot more talking, crying and praying to do this weekend as we prepare for his next journey.
Please call first if you would like to come and visit Nick - 801-554-5505.
Just to keep the tradition of bringing in a ray of light, here is a quick story: Nick's room was at the very end of the hall at Huntsman, right smack next to the construction where Huntsman is adding on another multi-million dollar facility. We have heard some very interesting and colorful conversations the past 24 hours; some construction workers can actually look into his room from the outside. One of Nick's medical personnel said, "Oh, Nick, you should really have some fun with this..." to which Nick responded immediately, "Should I fake a seizure for them?"
And for now, here is a picture of Nick and Makelle on her wedding day - this makes us all smile!
With love,Lori
Thursday, May 19, 2011
If I Die Young
Nick has a new favorite song - "If I Die Young" by The Band Perry. The lyrics will follow at end of this post.
This past week hasn't been easy, although he has slept through most of it. His eating has not improved, pain in lungs has returned and his fatigue is off the charts. We came in yesterday to meet with the Pain Clinic. Basically, they are setting Nick up on palliative care, getting a baseline on his pain so that should anything change, increasing or changing his pain medication is simplified and expedited. Our appointment was at 1:00 and poor Nick could barely keep his eyes open. During the physical exam, he lifted up his shirt to the doctor could feel his tummy and we all noticed the area near his belly button towards where his prior permanent drain was: it was red again (it had almost disappeared last week). He has only been off his antibiotics since Monday.
After a visit from Katie, Grace & Dr. Gouw, they decided Nick needed to have another paracentisis (his tummy is pretty firm again) and then culture the fluid to see if the infection is back. It took some time, but he was wheeled in around 6:00 p.m. to get his tummy drained. After about an hour, the radiologist came to talk to me. Uh oh, this can't be good. He said there was not any fluid in Nick's abdomen; it was all filled with a gelatin substance and they were only able to withdraw 2 mls. He wasn't sure if it was enough to culture so they may have to draw blood to test for infection; also not sure if there was enough to biopsy as he is suspicious it is all malignant. I was right, this isn't good. They wheeled Nick back into the room with me so I could help him get dressed. Nick asked me, "Did he tell you it was malignant?" I started to cry. He then asked, "Is that a bad thing?" I said, "It sounds like it." and I apologized as I dried my eyes.
His new favorite song played on the radio as we drove to the appointment and I had a tough time keeping my emotions in check then. On our drive home, it played again. As he said, "Aw, I LOVE this song!", I couldn't hold the tears back any longer. He softly said, "We can change the channel..." but I said no, I needed to release some pressure. As soon as that song was over, the next song was, "Calling All Angels" by Train. I smiled as I dried my tears, again, that this was a perfect follow-up song, especially with the lyrics, "You don't give up, I don't give up..."
Once home, we found out that Nick's favorite song was sung by one of the American Idol contestants on the show last night. Seriously? Then Nick asked Kelsey to come and sit by him so he could give her some of his positive energy. So she did. He then asked her to put her arm around him as he did her. So she did. Then told her it was ok if she wanted to swing her leg over the top of his, both if she wanted. So she did. Then took her other hand and held it in his and said, "See, isn't that nice?" Too freakin cute! Lee, Kelsey, Nick and I were all on the one tiny end of our couch.
Today we had to come back to Huntsman (at 7:30 a.m. for crying out loud!) to have labs drawn for the trial. Grace was able to pull Dr. Gouw out of a meeting and we talked about yesterday's problems. He suggested that Nick drop the trial and go back on chemo (probably cycle 3 which is a two week cycle). Before Nick makes that decision, Dr. Gouw wants to have a ct scan done immediately. To expedite everything, he had Nick admitted to the 4th floor as inpatient. We can get the ct scan done today, decide on chemo, monitor his nutritional intake, keep an eye on possible return of staph infection and his pulse, which was at 130 today. And that is where we are right now, room 4625.
I will post more later once we get the results back. We are all a little shaken and very worried. BUT, we are with a floor full of staff that love Nick and will care for him tenderly, as if he were their own son. Love and hope are very much in abundance.
Here are the lyrics to Nick's new favorite song:
THE BAND PERRY LYRICS
"If I Die Young"
If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
Uh oh, uh oh
Lord make me a rainbow, I'll shine down on my mother
She'll know I'm safe with you when she stands under my colors, oh and
Life ain't always what you think it ought to be, no
Ain't even grey, but she buries her baby
The sharp knife of a short life, well
I've had, just enough time
If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
The sharp knife of a short life, well
I've had, just enough time
And I'll be wearing white, when I come into your kingdom
I'm as green as the ring on my little, cold finger, I've
Never known the lovin' of a man
But it sure felt nice when he was holding my hand, there's a
Boy here in town who says he'll love me forever,
Who would have thought forever could be severed by
The sharp knife of a short life, well,
I've had, just enough time
So put on your best boys and I'll wear my pearls
What I never did is done
A penny for my thoughts, oh no, I'll sell them for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin'
If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
Uh oh (uh, oh)
The ballad of a dove (uh, oh)
Go with peace and love
Gather up your tears, keep 'em in your pocket
Save them for a time when you're really gonna need them, oh
The sharp knife of a short life, well
I've had, just enough time
So put on your best boys and I'll wear my pearls
Love Lori
This past week hasn't been easy, although he has slept through most of it. His eating has not improved, pain in lungs has returned and his fatigue is off the charts. We came in yesterday to meet with the Pain Clinic. Basically, they are setting Nick up on palliative care, getting a baseline on his pain so that should anything change, increasing or changing his pain medication is simplified and expedited. Our appointment was at 1:00 and poor Nick could barely keep his eyes open. During the physical exam, he lifted up his shirt to the doctor could feel his tummy and we all noticed the area near his belly button towards where his prior permanent drain was: it was red again (it had almost disappeared last week). He has only been off his antibiotics since Monday.
After a visit from Katie, Grace & Dr. Gouw, they decided Nick needed to have another paracentisis (his tummy is pretty firm again) and then culture the fluid to see if the infection is back. It took some time, but he was wheeled in around 6:00 p.m. to get his tummy drained. After about an hour, the radiologist came to talk to me. Uh oh, this can't be good. He said there was not any fluid in Nick's abdomen; it was all filled with a gelatin substance and they were only able to withdraw 2 mls. He wasn't sure if it was enough to culture so they may have to draw blood to test for infection; also not sure if there was enough to biopsy as he is suspicious it is all malignant. I was right, this isn't good. They wheeled Nick back into the room with me so I could help him get dressed. Nick asked me, "Did he tell you it was malignant?" I started to cry. He then asked, "Is that a bad thing?" I said, "It sounds like it." and I apologized as I dried my eyes.
His new favorite song played on the radio as we drove to the appointment and I had a tough time keeping my emotions in check then. On our drive home, it played again. As he said, "Aw, I LOVE this song!", I couldn't hold the tears back any longer. He softly said, "We can change the channel..." but I said no, I needed to release some pressure. As soon as that song was over, the next song was, "Calling All Angels" by Train. I smiled as I dried my tears, again, that this was a perfect follow-up song, especially with the lyrics, "You don't give up, I don't give up..."
Once home, we found out that Nick's favorite song was sung by one of the American Idol contestants on the show last night. Seriously? Then Nick asked Kelsey to come and sit by him so he could give her some of his positive energy. So she did. He then asked her to put her arm around him as he did her. So she did. Then told her it was ok if she wanted to swing her leg over the top of his, both if she wanted. So she did. Then took her other hand and held it in his and said, "See, isn't that nice?" Too freakin cute! Lee, Kelsey, Nick and I were all on the one tiny end of our couch.
Today we had to come back to Huntsman (at 7:30 a.m. for crying out loud!) to have labs drawn for the trial. Grace was able to pull Dr. Gouw out of a meeting and we talked about yesterday's problems. He suggested that Nick drop the trial and go back on chemo (probably cycle 3 which is a two week cycle). Before Nick makes that decision, Dr. Gouw wants to have a ct scan done immediately. To expedite everything, he had Nick admitted to the 4th floor as inpatient. We can get the ct scan done today, decide on chemo, monitor his nutritional intake, keep an eye on possible return of staph infection and his pulse, which was at 130 today. And that is where we are right now, room 4625.
I will post more later once we get the results back. We are all a little shaken and very worried. BUT, we are with a floor full of staff that love Nick and will care for him tenderly, as if he were their own son. Love and hope are very much in abundance.
Here are the lyrics to Nick's new favorite song:
THE BAND PERRY LYRICS
"If I Die Young"
If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
Uh oh, uh oh
Lord make me a rainbow, I'll shine down on my mother
She'll know I'm safe with you when she stands under my colors, oh and
Life ain't always what you think it ought to be, no
Ain't even grey, but she buries her baby
The sharp knife of a short life, well
I've had, just enough time
If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
The sharp knife of a short life, well
I've had, just enough time
And I'll be wearing white, when I come into your kingdom
I'm as green as the ring on my little, cold finger, I've
Never known the lovin' of a man
But it sure felt nice when he was holding my hand, there's a
Boy here in town who says he'll love me forever,
Who would have thought forever could be severed by
The sharp knife of a short life, well,
I've had, just enough time
So put on your best boys and I'll wear my pearls
What I never did is done
A penny for my thoughts, oh no, I'll sell them for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin'
If I die young, bury me in satin
Lay me down on a bed of roses
Sink me in the river at dawn
Send me away with the words of a love song
Uh oh (uh, oh)
The ballad of a dove (uh, oh)
Go with peace and love
Gather up your tears, keep 'em in your pocket
Save them for a time when you're really gonna need them, oh
The sharp knife of a short life, well
I've had, just enough time
So put on your best boys and I'll wear my pearls
Love Lori
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