August 2008 Archives

Luc had a really good night's rest last night. So did I. He has been having a really rough day though. The nausea kicked in with force this morning and nothing seems to be helping. He hasn't been able to throw up because he has nothing in his stomach. He was able to fall asleep about an hour and half ago and still seems to be resting comfortably. He woke up for a few minutes to use the restroom and said he still felt so nauseous. His coloring has also changed dramatically. He is very pale and pastey and has the dark circle under his eyes that he always seemed to have when he did chemo before. Please pray that they can get this nausea under control.

I took a few minutes this morning to go to the sacrament service they have here at the hospital. It only lasts 30 minutes and it is a "come as you are" meeting. The spirit there was so incredibly strong. I was very moved emotionally. The talk was about trusting the Lord no matter what. This has been something I have been praying so hard to be able to do.  Sometimes, when I am in the midst of such challenges that seem to be crushing down on me, my trust is a little weak. I do sometimes feel alone. I know in my heart that He is always with me, at least watching. I know that He is with Luc right now and also that Luc is surrounded by his loving family from the other side. Although mortality sometimes clouds our vision of what is really happening. I know that trusting in what the Lord is doing, that we can not see with our physical eyes, is essential for us to move forward in gratitude and learn and become what He would have us be.

I am grateful that I am able to be here with Luc. I am grateful that I am able to do a few things that bring him comfort like: rub his face, back, arms, legs, and feet and hold him and let him cry. He is so brave and even in the midst of his suffering is concerned that I get what I need (taking a few minutes to walk around away from his room, eating meals, etc.). I appreciate the visits we have had and the phone calls and also the comments that you post. It sure helps our morale!

Marley

Well for the most part I've been doing pretty good. The nights are rough sometimes, but I will live. Thanks for the comments, concerns, and prayers they help me to rise to the challenge. Right before I came to the hospital, my mom and I went to Cabela's to have my picture taken. (The picture will be posted soon) The picture is of me holding the rifle I want. It is so nice, it has an ajustable stock, barrel and it can fit a clip with 50 shots in it! After this round of Chemo I have a fun break to look forward to. I get to go with my grandpa on the muzzleloader hunt in Panguitch (Southern Utah). If you have questions or concerns you can email me at lucaslizard7@hotmail.com.

Thanks Again.

Love,

Luc

Luc is doing really good so far.  His nausea is very minimal.  They didn't start the chemo until 10 p.m.  We arrived at about 12:30 to check in.  At 1 Luc had an echocardiogram.  That was fascinating to watch.  It is just an ultrasound of the heart.  I am amazed at not only the technology that we are blessed with, but our own bodies. The heart is such an amazing organ to watch.  He had this test as a baseline and will have one each time before chemo.  One of the meds can effect heart function. We got up to ICS at about 2 and they had to access his port.  His port is deeper this time, so they had to use a really long needle (1 1/2").  That was pretty traumatic.  Then they gave him i.v. fluids for several hours.  They said that he had to be fully hydrated and the lab tested his output and let the nurses know when the numbers hit the right amount.  When the nurse went to hook him up to the anti-nausea medication, she couldn't get a draw on his line (when she drew back on the syringe there was no blood).  She had to get someone to come check it.  He pushed the needle pretty hard .  It hurt Luc a lot.  Then he had to push it again.  Luc was ready to go home.  Once the pain settled down Luc was okay.  Now Luc is doing better than we expected. 

The Childlife Specialist brought Luc a laptop to use.  That has been a lifesaver because it keeps Luc distracted.  Everyone is wonderful up here.  Thanks for all of your comments and concern.  I will try to post daily while here at the hospital.

Marley

Luc never ceases to amaze me!  He has remained so calm and happy in these past few weeks and days.  I know he is being blessed, yet I also know that he is probably stronger than I even realize.  Lest you think he is "superhuman", he has had several episodes of anxiety, worry and fear.  They have been fleeting.  He feels it, expresses it and then moves on.  I know that his spirit is much older and wiser than mine and that HE taught ME in the pre-exsistence, just as he is teaching me now.  I love him and our other 2 children more than words can express!!  It is such a great privilege to be their earthly mother!

Yesterday our Nurse Coordinator called.  I was so excited to find out that it is one of our favorite nurses, Alyce, from his time before in the out-patient oncology clinic.  We love her.  She is now coordinating in-patient services.  She said when she saw Luc's name for in-patient treatment, she asked to be able to be his coordinator.  What a great tender mercy!  I asked her a lot of questions and have a much better idea of how things will go.  He goes in today at 1 for an ecocardiogram and after will be admitted to ICS (4th floor at PCMC, only immuno-compromised patients stay here i.e. cancer/transplant patients).  The 2 i.v. chemo meds have to run continuously over 96 hours.  We will most likely be discharged on Tuesday.  Alyce told me that his blood counts will go way down and that he will probably not be able to go to school or church or any social function the whole time he is having treatments (that includes the other 26 days of the month that he's home).  She said his counts will just barely start to come up when it is time for another round of chemo.  When I told Luc this he said, "So basically I'm grounded for 6 months."  I guess this is true.  Although, while it is still warm, he can go to outside things as long as he is feeling up to it.  I don't believe this will interfere with his deer hunting trip with his grandpa.  He was worried about that.  He handled the news remarkably well.  We are praying that all side effects will be minimal and that he will stay in good spirits.

He took the Hunter's Safety course this week in preparation for the Muzzle Loader Hunt at the end of next month.  He loved it and, last night, got 100% on his final exam.  There was only one other in the class that got 100% and it was an 18 year old.  The only thing left is that, when he is feeling up to it, he needs to go out and shoot with the instructor.  He is excited.  He has also found a gun that he wants and is trying desperately to find ways to earn money to get it.  He said to me, "Mom, will you post on my website that I will work for anyone, doing anything to earn some money for my gun?"  I said I would, so there it is.  I don't think it is too feasible right now though.

Thanks for remembering him in you prayers and for all those who have told me that they have put our names in the temple.  We feel so grateful to be loved!

Marley 

These past few weeks Luc has been acting extremely happy.  He even said to me, "Mom, I don't feel scared".  He was even surprised.  He expressed his gratitude that this was happening this year instead of next year when he goes into 9th grade and needs to take more challenging classes.  All of these things help me to feel peace and confirm that we are doing the right thing.

Last Monday he had surgery to place another port-a-cath.  All went well and he has recovered very well from it.

We met with the director, assistant director, and a counselor at Rockwell last week to come up with a plan for Luc.  It was a very productive meeting and I feel more at peace after.  The counselor, Mrs. Allen, is amazing.  She thinks outside the box and is totally on Luc's side.  She has worked with 5 other kids that had cancer and went through chemotherapy while in school and she has had cancer and gone through it as well.  This is a total tender mercy from the Lord.  She is so compassionate.  She even said that she has an extra recliner at home that she is going to bring in and put in her room so that if Luc gets sick or tired and just needs a place to lay back and do his work, that he could go to her room at any time.  She calmed our fears about the older students making fun of Luc when he loses his hair.  She said in her experience the high school students really rally around kids that are going through hard stuff like this.  She said that she wouldn't be surprised if Luc was the most popular kid in the school.  Luc said that he doesn't care to be popular, just doesn't want to be teased.  I'm sure he'll find a lot of support and make a lot of new friends.

The first day of school was today.  He had a good day.  He is a little concerned that he is going to miss all of the disecting in Biology, which he was so looking forward to.  I told him not to worry that things would work out and that I was sure he would be able to do most of them.  He loves science and says that he can already tell that his science teacher is awesome. 

I am grateful for all the "normal" he has.  I have learned that boring and mundane can actually be very good things.  So many times I have taken normal, everyday life for granted.  I hope that I can savor those days and that our future will be filled with those kinds of days.

Marley

P.S.  Ron is still desparately looking for employment.  Your prayers are appreciated on this as well.

We met with Dr. Lynn Million at Huntsman today.  She is a radiation oncologist.  It was very helpful to meet with her and ask questions and hear her recommendation.  She showed us Luc's scan.  It helps to have a picture in your mind of what things look like.  The tumor is bigger than it was before surgery.  It has gone right up to the spine.  Dr. Million said that if Luc had radiation treatments that she may be able to stay away from the growth plate in his shoulder, but they would not be able to stay away from the growth plates in his spine.  Radiation also can damage the nerves, and there are a lot of nerves in that area.  Radiation is also a one time treatment.  He would only be able to have one series of treatments and that's it.  In a nutshell, she recommended that we try the chemo treatment first.  I knew that she would recommend that, but it was very informative to meet with her and ask the questions I had wondered about.

Luc has decided to go ahead with the chemo treatments.  He said,  "I'll do it, but I'm not happy about it."  I told him that no one would ever expect him to be happy about it.  I'm now in the process of scheduling a surgery time to have his port-a-cath replaced (this is a central line that they use to administer the meds) and he needs to have an ecocardiogram because one of the meds can affect his heart function.  We are planning to do the first round Aug. 29 - Sept. 1.  That way he will be at the height of feeling good and blood counts coming back up when he goes with his grandpa for the muzzle loader deer hunt at the end of Sept.

After he had determined that he would go ahead with the treatments, he started looking for positive things.  This is Luc.  He goes through all of his negative emotions, commits himself, and then tries to find whatever he can to reinforce the positive aspects of it.  He is such a great boy. 

We appreciate all the comments and concern, both here on the website and by phone.  Luc would love to receive any encouraging words you could send, either here or his e-mail: lucaslizard7@hotmail.com .