Team Dinner

All I can say is Wow! Tonight was the Salem Hills High School Basketball team dinner. I was hoping that Eric would have felt up to going to the dinner. And he truly wanted to go, but did not have the strength to make it. But if you will indulge me a moment to tell you about this night.
Coach DeGraffinreid spoke to the boys and told them about how proud he was of them not only as basketball players but as humans. (This is not word for word, but what I heard) He spoke of the trials that the team had to go through this year, including the night when Eric came and told the team about his leg.  He told them how proud he was of the team for surrounding Eric with not only support but love. As Coach DeGraffinreid got choked up, it was hard not to be reminded how grateful we are for that love and support, because it has helped Eric to stay strong and take that step, as hard as it is, forward on his treatments.
Coach Griffin spoke about when the team came out of the locker room the night of Eric's last game this season, and the team saw the huge tunnel the student body created for the team to walk through.  They were not sure what to do. So Jake Skinner linked arms with Eric and the rest of the team followed suit and walked through the tunnel, giving high fives as they passed.

It has been spoken of many times that it takes a village to raise a child, I am now starting to understand the meaning behind that. There are many people who come into your child's life and will help shape, love, and teach your child, in good time and bad. To personally witness the goodness of amazing people, teachers, coaches, and friends who have been here to help in anyway they can, and to know that we are not having to do this alone is comforting.

When I got home and I gave Eric the book with all the pictures and signatures from the team, this made his day. Thank you Skyhawks for allowing us to lean on you.

Hanging In There

It has been a quiet couple of days.  But Eric is hanging in there okay.  His blood dropped significantly on Thursday, which was to be expected.  I could tell by just looking at him that he was losing energy and strength.  The good news is that we have been able to keep the fevers away so far. (I am knocking on wood right now.)  I requested to have the nurse re access his port, so that we can give him a couple of nights of fluids to help to build him back up.  Judging from the past and what I have learned from others is that if we can make it through this weekend without any fevers, his chances of making it through to his next treatment at home have increased dramatically. 
He has had a few friends come over to play X box and to watch the BYU game, which he enjoyed and it is great to see Eric smiling and laughing with his friends.  He still has an amazing attitude, even though it is very trying to be sick all the time.  But we talk all the time about the big open house we will have for him when his treatments are done and other plans he wants to continue when possible.  I know he misses his freedom and independence the most, which I was not surprised to hear.  Before the treatments, he basically came and went as he wanted, knowing that I trusted him... to a point. :)  I am proud of him and his strength and will be cheering even louder when he regains his independence back, for his sake.
Thank you again to all the wonderful family, friends and people we have not met, that have kept Eric in their prayers and thoughts.  Your kind words have helped to give me the courage to stay strong.  It is very humbling to  know there are so many people who are willing to do what ever they can to help out.  From the bottom of my heart, Thank You!

What a beautiful day

Eric is continuing to get stronger and was ready to venture out into the world.  Because we are so far behind our movies, we decided to talk the owner of Stadium Cinemas into playing Limitless for us... :)  It was a fun afternoon and felt great to get some fresh air.  Once we got home he was able to use his I tunes card that the Linfords gave him a month ago to down load one of his favorite artist.  So now his I pod it updated and he is one happy camper.  We are getting closer to being out of the danger zone... so it is a blessing as each day passes and he is continuing to feel better and stronger.

A new Eric

This morning started out pretty funny.  I was trying to be so quiet and disconnect his IV tube while he was sleeping, because I am a professional... :).  Well, you have to flush the tube going into his port with a saline solution when you disconnect it, but the syringe had a tiny air bubble in the end.  So I was trying to get the bubble out and shot a stream of water on the ceiling, which dripped back on Eric's sleeping face.  I was trying not to laugh, but when Eric woke up and said "What the heck?"  I started laughing, then he started to laugh as the ceiling continued to drip on his face.  He shook his head.  It will be a testament to him if he can endure my "professional" nursing skills.
But great news... We just figured this out, and I just have to share with you.  If... and I mean IF he can stay on schedule with his treatments he will be ringing the bell at PMC signaling the end of his treatment on August 26th.  I had miscalculated and thought he would be finishing up the later part of October.  So when I was sharing this with Eric, he was so relieved.  I also shared with him about what Dr Spraker said about how well he is doing by staying on schedule. 
Then to keep his spirits soaring, I gave him the news from the doctors office with his blood counts.. which are really good.  This week it will continue to drop, but so far we are keeping them at a respectable level!!    He is trying to keep to his 2000 calorie diet and feeling great! What a great day it is!

New Day/New Eric

Yesterday Eric was feeling better, but the feeding tube was rubbing up against his gag reflex.  I brought home his favorite pizza, pineapple along with cheese sticks, and one bite was all he could do, because of that tube, so I spoke with the doctor at PMC about some guidelines.  He has promised to consume 2,000 calories a day, where we will keep track of it on a paper, and if he can maintain that type of diet, then we will leave the tube out until he goes back in for the Methotrexate treatment on April 4th.

Two members of our Priest quorum, Jace Spencer and Cole Dayton just came and blessed the sacrament for Eric.  What a cool experience.  Of course Eric had to show off his accessed port to Jace and Cole.  Jace was saying that he was a little worried about Eric because of his new "piercing"  And asked if he was planning on "bedazzling" it.  Can you imagine Eric showing up to the hospital with a "bedazzled" port?  It made me laugh anyway.  (I think I have explained that the port is a unit under Eric's skin on his chest that has a line into his heart, where the IV fluids, chemo treatment, medicines go.  When it is "accessed" there is a needle into his port with tubing attached, so all the nurses need to do is hook into the external tubes, and they do not have to poke more needles into Eric)  It is pretty handy to have, but still freaks me out... okay a lot.

We're Home!

We did make it home yesterday afternoon and by the time we got unloaded, Eric settled he was ready for a short nap.  But it was really good to have him awake for most of the evening.  The nurse came by and showed me how to give IV fluids, so by the time we were done with everything it was 11:30 pm.  He slept okay, even with me waking him every few hours to give him more pills.  But so far we are doing okay!  Hopefully I will be able to post a few pictures as the day goes on.  Let's just hope we can keep him home for the 2 weeks!

Nothing more they can do

Because we are at a point where there is nothing more the hospital can do that we can't do at home, we will be going home today. He will continue to have his IV fluids and liquid food at home. So ready or not here we come.
Eric will have 2 weeks off between treatments this time, because this is the treatment that wipes out his immune system. They have already given him his first neupagen shot to begin to boost his white blood count, so hopefully it will help to keep him home and fever free. But it is not unusual to be back at the hospital because of a fever. So we will do our best. He is still really nauseous, but little by little, he should start to feel better.
He did sleep really well, I would was going to say last night, but for the past 3 days and he is not taking as much pain medication, so we have made progress.... It will take a few hours to get the discharge papers done, but I am pretty sure that we will be home this afternoon! YEAH!! It is really easy for me to say, and selfish, but YEAH!!

PMC Update

Yesterday I thought I wouldn't bore you because there was not a lot of details, but when I had several people calling or emailing worried because there was no updated post on Eric, I wrote the positive note post. :) Thank you for caring so much and worrying about Eric.
Eric has been cleared to go home, other than he does not feel well and has asked to stay one more day. I mentioned that even if he wanted to sleep (some more) this morning and see how he feels, then we will take it from there. They will release him when he is ready. In the meantime they are taking a couple of other small steps to see if it will help with the nausea. We will take anything at this point!
Eric has gotten to know a cute girl with Ewings Sarcoma from Shelly Idaho, her name is Danee and she was admitted on Tuesday, so I had the opportunity to meet her and her mom. What an amazing girl. So both Eric and Danee are feeling under the weather right now, but I am sure will speak later. She gave Eric pointers on what anti nausea medications worked well for her. So Eric impressed Dr. Spraker with using the term "Ben Phen" before he started treatment. "Ben Phen" is one of his good friends right now. :) (it is a anti nausea medication combination, that also puts you to sleep)

Positive note

Okay, since there is not a lot to report on Eric's condition right now, because he has slept non stop.. There are a few positive notes I need to bring out, so it doesn't appear to be all doom and gloom. Sorry about that, this has been a hard learning process, but I feel we are getting to a point where I am discussing with the doctors some proactive steps to not only keep him comfortable and heal through this process but also keep him on schedule.
So.. Here are a few highlights on a positive note.
1. His tumor is shrinking and his leg is not hurting that much.
2. He is now walking on his leg. At first when the tumor was growing really fast and out of control (my professional opinion), he was in so much pain he could not put weight on his leg, or have anything putting any kind of pressure on it. This weekend he has been walking..with a limp, but walking on his leg.
3. He has regained 8 of the 50 pounds he lost!
4. I now know how to hook up his feeding tube and by this weekend will know how to give IV fluids to his port. Scary, I know.
5. When Dr. Spraker was in this morning, she was saying how well he was doing. I looked at her like, "Are you kidding me?" She told me of a young man that is 2 years older than Eric, that came into her office the same day as Eric, with the same thing, only on his right leg. So they were starting the same treatment the same time. Well he is getting ready to start his 2nd treatment and Eric is finishing his 4th. Eric is staying on schedule, even though it is a harsh schedule, he is progressing.
6. We are going to be proactive to do more home care nursing at home, hopefully we can keep him from crashing every time he is at home.
7. We have amazing friends and family who are always doing such nice things for Eric and our Family and they also keep us in their prayers! Trust me we have felt your strength and faith!
And last but not least we only have 5 1/2 more weeks to surgery!!

Broken Record

When we got to Primary Children's hospital, Irish (Eric's nurse) proceeded to get all the tubes going, so he accessed his port and started the fluids and where he has been a nurse for 35 years and never failed to get a feeding tube in, proceeded to thread the feeding tube into Eric... He failed! I finally had to stop him after a several attempts because Eric was just being tortured. After a couple of hours of allowing Eric's stomach to settle down we took Eric to X ray for a guided tour. Because he was very dehydrated, they could not start the treatment until 11:00 last night. They have not given him a blood transfusion, but will before we are allowed to go home.
He slept well, and actually drinking well. Big improvements that way, with the help of all the different anti nausea medications he has been given... which is okay for several reasons. Today and tomorrow should just be quite, but if anything changes I will let you know. :)

Getting ready for another trip to Primarys

Yesterday we celebrated Daryl's birthday.  Daryl kept saying all he wanted for his birthday was for Eric to come eat at the table with us.  And Eric was planning on doing it, until it was time and so I told him that if  he would eat a little (He requested twice baked potatoes) then I would bring one down to him.  He did eat a little of it from the couch... which is better than nothing.  Here are the pictures of us bringing the party to him... not that he was really into the party.  I keep telling my self that we are "Crawling to surgery"!

The treatment they will start today is the Doxorubicin (red devil) that will drip for 48 hours along with Cisplatin that will drip along with doxorubicin, but it will run for 12 hours, he will have 12 hours off of cisplatin then they will start it again for another 12 hours.  I will find out at 9:00 if his blood work up is good enough.  They told us before we left on Friday they will be giving him another blood transfusion before they start the treatment.  But regardless I am taking him today.  He has weaken so much since the tube has come out.  That he needs to get back to the hospital. 

Home and doing well

Last night I was so proud that I was able to hook up Eric's liquid food, with no complications.  And he has been such a trooper about it. 
I got such a big kick out of him last night, I went down to see if he needed help to get to bed and he was already trying to push the "Feeding tree" down the hall on the carpet but was having a hard time.  So he picked it up and said, "Come on dinner, let's go to bed".  It was so good to see him walking... well limping , but walking on his leg and his humor was showing through.  I was just laughing at him and he turned and ask what I was laughing at and I told him that the picture of him telling his dinner that you are going to bed, just was funny.  And his comment was "Don't laugh at me I have Cancer!"  It didn't stop me from laughing I just wished I got a picture of it to share with you. 
Well maybe next weekend.. because as things go, we live moment to moment.  This morning the tube did not last, he got sick and it came out.  So he gets a couple of days off from the feeding tube, but when we go back up on Monday for the next treatment, they will put it back in. 

Good to Go!

Yeah his body has cleared the Methotrexate. His level was .07. So now we are waiting for the doctors to come and give their final evaluation to finish clearing us to go home. He will have the feeding tube, but will only be hooked up at night. He looks so much better. His coloring is back and he doesn't have the sunken eye/face look. He was awake pretty much all day yesterday and the nurse let him sleep longer in between having him pee last night. So it was a great day. His sores in his throat and stomach are coming on strong right now, but we are working on keeping him comfortable through this cycle.
Dr Spraker came and talked to him about the feeding tube, where Eric is not crazy about keeping it in, she explained that most kids have a decline in weight and right before surgery they will put a feeding tube in to get some nutrients in their bodies so they can heal after surgery. In Eric's case, because he is a very active basketball player and because his weight just plummeted, he had to have it sooner than most. But because of that he is ahead of the game and will be ready for surgery in 6 weeks.
So once again, I get to play nurse mom at home and learn how to take care of the feeding tube. So if you come to visit and I have a cute little white dress on with a hat, you know I am playing the role. :) Okay I won't do that. But like any mom, I will do what ever it takes to get him better.
Eric's official "watchman" Daryl is celebrating his 25th birthday today! Not only am I having a hard time believing he is that old, but it makes me pretty dang old! Oh well I have been very blessed to have amazing kids and husband.

New Day

It is amazing what 1 day will do. Eric slept all day and was really dizzy when he sat up or tried to stand. His physical therapist that wants to take him to Italy came by to start with physical therapy, had to put it off another day. Because he got sick just sitting in a chair. But it was good to talk to her and hear more details of what to expect. She said that we will see a huge difference in his strength and mobility and over all well being once they remove the tumor. We are in week 5, and according to the "protocol" schedule he should be having the surgery in week 11 or 12. She told me about a young man who was a big soccer player who had the exact same thing in the same spot and he is back playing soccer. I needed to hear that. She is going to see if she can talk to him and have him spend some time with Eric.
Today Eric is alert and the nausea is not to bad. He is getting the sores in his mouth, throat and stomach, but so far it is not as bad to where he needs pain medication to manage it. Hopefully we are doing a few things different to side step the sores.
He has gained back 6 pounds of the 50 he lost. I know that it is mostly water weight, but I will take it. He was asking last night how long the tube had to be there and it will be there for a least 2 weeks, if not longer. It depends on his weight and his intake of food and fluids. I have to say that the tube has been the most comforting thing to me in a long time. Okay what can I say, I am a mom. I call it training to be a grandma. :)

Quiet day

Yesterday Eric slept all day. We were worried that it may because the anti-nausea medication he is on, but I think that with the weaken state his body is in, not to mention that they gave him another dose of poision. He body is just trying to recover. Have I mentioned that I feel so so so much better with the feeding tube in? He did not eat anything yesterday, but knowing his body was getting some nutrients I was okay with that. They will probably up his liquid food soon. They started him off on a very low dose (700 calories a day). Just to see if stomach could tolerate it. Then they talked about upping that to see if we could help him put some of his weight back on.
Today I am sure he will be sleeping through out the day. He doesn't even know that Aunt Janet and Aunt Patty brought him autographed Jazz pictures of Darrin Williams and Al Jefferson last night. Nor does he know what he missed out on the goodies from Bakers DeNormandie. I enjoyed them though.:) We saved him a cup of soup for today. While he sleeps, I get the opportunity to catch up on all that R&R reading. So all is well and we will continue to keep you posted as we take baby steps through this process.

3rd treatment complete

Eric was able to make it through his 3rd treatment. It finished around 1:30 am. Now the process of clearing out of his system is next. They will wait for 24 hours after the completion of the methotrexate before giving him vitamin B to counteract the drug. Eric did okay, they have him on a lot of anti nausea medication, because one thing we don't want to do is have him vomiting up the feeding tube. He seemed to handle the nutrients on his stomach pretty good. He actually ate a milk shake shortly after the liquid food hit his stomach.. then he ate some banana bread. I never thought I would be so excited for someone to want to have a milk shake. I think just getting something on his stomach did the trick for the most part. He was awake for several hours and watch Lord of the Rings 1 and almost made it through #2. I think he will probably sleep all day today, but that is okay.

Here we go again.

Well we made it home and enjoyed our few hours home... well I am not sure if he enjoyed it as much as I did. But we are back to do another round of Methotrexate. I have been so worried about his weight and the lack of food going into him, that after we were putting him into the car to come up, he started to black out and fell, I talked to him about putting a feeding tube in, which he agreed. When we made it here and a couple of the nurses saw him could tell that he is not feeling well (He couldn't even stand on the scales because he was so weak) mentioned that we needed to talk about getting some nutrients in him. I said that I was going to talk to them about that. When they got him in bed and weighed him from the bed and calculated how much he weighed, the water works started again. He has lost 50 pounds! So after I pulled myself together we talked about what needed to be done to get some nutrients into him. They were unable to get a feeding tube into him manually, so they are going to use a Xray device to do it. He is sleeping right now and receiving IV fluids for now. I am not sure if they will actually start the methotrexate tonight, until they can get him feeling a little stronger. But I will keep you up on the latest as we go.

I will tell you a funny story about what happened last night... just so that I can keep the waterworks from coming... :)
Yesterday Daryl came over to keep an eye on Eric while I attempted to catch up on some work for the theater and keeping to the quality supervision that Daryl does, he went to sleep along with Eric. I had to run down stairs to get something out of the storage room for dinner and Daryl was snoring pretty loud. But where Eric was fast asleep, I thought all was well. It didn't take long and Daryl was upstairs. Apparently he did wake Eric up and in Eric's weaken state was unable to reach Daryl a few feet from him to nudge him to stop snoring. So being creative like Eric was, or desperate, you choose, Eric grabbed a "Gogurt" (a yogurt in a plastic tube for those who are unfamiliar with them) and poked him in the nose to tell Daryl he was snoring. McKell liked this technique and thought about trying this at home. :) But needless to say it worked and peace was restored.

40 hour stop at home

We did make it home today around 1:00 pm.  I kind of had to coax Eric into trying to coming home.  I also had to take the bull by the horns to get his pain under control and explain to Eric why he is taking the different drugs.  And with the help of a couple of Physician assistants, we mapped out a game plan.  But we made it.  I really think that he needed to come home for a little bit, not to mention to get a little fresh air.  I am in the mode of trying to get him to eat anything.  So when we stopped off at a convenient store for a Spirit, he asked for a Krispy Creme doughnut.  Well so I had to get him 2.  He still has not eaten them, but they are close by. :) 

What a day

Today started out pretty great. Eric's methotrexate was at .07. We both were pretty excited. Eric mentioned that if he had to stay the weekend, he would go crazy. Well as I was running things out to the car, things changed for Eric. He started to feel really sick. The worse side effect with this chemical is that it makes sores not only in your mouth, but throat and stomach. Well we are thinking that the sores in his stomach caused him to get really sick to his stomach. When a 17 year old boy who as been stuck in the hospital all week says that he can't go home, because he is to sick, tells you that he is really really sick. As I spoke to the doctor, nurse practitioner and RN who have been doing this for a long time reassured me that it is a matter of finding how he is going to react and give him what he needs to get comfortable. So we have tried a few different things to get him more comfortable, to at least keep drinking fluids. He is feeling better tonight. He actually swallowed a few spoonfuls of a frosty. :) Hopefully he will feel up to going home tomorrow. The doctor told him that he made the right choice by staying at the hospital. This is such a hard, uncomfortable new world and it is not something you can take lightly.
Chemotherapy is such a common treatment, but it is a very devastating process to go through when it is you or your loved one. I have a greater admiration for those who have faced this very hard journey.

We almost made it

Well we almost made the cut. He was .11. So we get to stay the night. All the doctors and nurses were pretty bummed for us. But because this is the first time with methotrexate and the seriousness of the chemical, we can't take the chance on his health. As much as I want to go home, I am not willing to take the chance with any possible complications. So we will plan on going home tomorrow morning. :).

Almost There

Eric's level is at .15....so close. They will retest it at 3:00 to see if his level is .10 or lower. If it is .11 they will not let him go till morning after they retest it. So we may luck out and get to come home tonight!
Yesterday was a very full day with audio testing and doctors and doctors and more doctors coming in. I learned a lot though.
Eric had a visitor, Adam Sainsbury and his mom came to visit. I had never met Adam, but I have heard Eric talk about him. What a great friend. He brought a balloon to help cheer up Eric's room. Adam and his family are going on a cruise the end of this month, we are so jealous. I was able to see cute little Lizzie Jane after her appointment with the cardiologist, and the other night I ran into Todd's family from Pocatello. Man this is a small world. It is always nice to run into friendly faces as your wondering the halls. :)
Yesterday as I opened the door to Eric's room to get the nurse, a little girl with a mask on was riding a bike down the hall. Her mom was getting quite the work out trying to stay up with her pushing her IV tree. The nurses were telling us that it is a good sign when she is racing up the hallways on the bike because she is starting to feel better. Eric asked if they had a bigger bike for him.

Wednesday at PMC

Eric is doing really well today. He slept all day yesterday and will probably do the same today. As I mentioned before they are watching Eric to make sure his body is flushing out the Methotrexate. Yesterday his level was 2.67. It is now .76. He has to get it less than .1 before they will allow Eric to go home. So he is heading in the right direction. Irish, his nurse said that probably by Friday we will be ready to go home.

Eric was able to see all the action shots, taken by Todd the official team photographer, from the Payson state tournament game... Congratulations on your win, and the Salem Hills game. We were bummed to hear that it was the end of the road last night for the Skyhawks. The boys on the Salem Hills basketball team are amazing young men with a lot of talent. Not to mention the great coaching staff. We have been honored to be associated with you and call you friends.

Not a lot to report

I think today will be a day of rest for Eric. He was way excited that Aaron Lewis's new album was released today and was downloading it first thing this morning... while he snoozed. I am guessing that he will probably sleep all day and tomorrow. But that's okay.
Eric's nurse is a funny man. His name is Irish. He has 2 son's ages 25 and 22 years old and this morning as Irish stepped into the bathroom to run his tests, a fart machine sounded really loud around Eric. I could not help but laugh so hard. Eric said, "Sorry I couldn't help it." And went right along making excuses for the sounds. Oh my, what we do to entertain ourselves here.