LucOrton.com

Luc's tumor is still stable!  We were all so relieved.  You don't realize the weight you've been carrying until after.  We feel like we are flying!

We wish you all very Merry Christmas and know that 2010 is going to be the best year yet!!

Marley

Hi everyone.  I feel like a slacker not updating before now.  I guess when life feels "normal" you neglect certain things.

Luc has been having pain pretty consistently for the past few months.  This does not necessarily mean that the tumor is growing.  It could just be him growing.  For our peace of mind we decided to schedule a scan before the end of the year. 

Luc had an MRI yesterday and we will receive the results this afternoon.  Our Christmas wish is that there will be either no change or (dare I wish it) shrinkage.  We know that all things are possible with the Lord and our biggest wish would be that his body be tumor-free.  We also realize that this may not be in line with the Lord's will and we are not out to try and change His will.  We trust in Him completely and know that whatever happens it is for our eternal salvation.

We, again, ask for your prayers as we await and receive the results that they will be positive and that Luc will be able to enjoy his school year and look forward to all the things that an almost 15-year-old normally anticipates.  We thank you so much for all the support you have given us over the years.

Our desire for you is that your Christmas be all that you want it to be and that 2010 be an amazing year for us all!

Marley

I am trying to win a trip to Disneyland for my family.  It is through http://www.sweetlifeinthevalley.com/search/label/Disneyland%20Giveaway%20Form and http://www.outandaboutwiththefamily.com/.  Wish us luck!

Marley

We are so excited to announce that Luc's tumor is STABLE!!  Our supplications to the Lord have been granted.  We wanted him to be able to start school and have a normal life.  We are so hopeful that this will continue.  We don't really have to think about it for another 4-6 months.

Luc's grandpa called on Thursday asking him if he wanted to go for a quick trip to Panguitch.  Do I even need to say what his answer was?  He arrived back home today.  They fished, sighted in a gun, shot some clay pigeons, went to a rodeo, and relaxed. It was a good weekend for the two of them.

He is all ready to start school tomorrow.  He still thinks he needs a few more weeks of summer.

We are so grateful for the Lord's tender mercies.  He does look upon the heart and upon our ability to endure and each of our paths are so individualized so that we can all endure it well if we put our trust in Him.

Marley

This summer has been a well-deserved, normal summer.  We have enjoyed sleeping in, going to Panguitch, swimming, and friends.  It has been such a relief to not have to think about hospitals or treatment or meds, etc.

Luc's hair is thicker than ever.  In fact, I had to thin it out like crazy last time I cut it because we couldn't get a comb through it.  He was so handsome when he was bald and is just as handsome with his thick, curly hair.

This Tuesday, the 11th, we have an MRI scheduled.  As always, with an upcoming scan comes a little anxiety.  Luc has been having pain off and on and feels like the tumor is growing.  We won't know until the scan.  Our faith lies in God's purposes.  We know that we have sufficient faith for Luc to be healed.  If God is allowing it to grow, it just means that there is a greater purpose in that fact.  We trust Him and know that whatever the future holds, He will be with us and help us endure it well.

Again, prayers are greatly appreciated.  We feel the strengh and peace that comes with them.

Marley

I wanted to update everyone even though things have calmed down so much.  Luc did great his final term at school. It was like he hadn't missed at all.  He was at the top in all his classes.  I am so grateful that he is blessed with "smarts".  It would be a huge challenge if he struggled in school.  He felt so good being back in school and socializing with his friends.

The "new" Luc is almost 17 pounds lighter and has a full head of WAVY hair.  He looks SOOOO good!!  His stamina has improved by leaps and bounds.  Where before he couldn't even walk to the corner without stopping to rest, he now goes to the bike park for hours on end, rides his ripstick all over outside and keeps up with all his friends.  You'd never guess what he went through over the past year and a half by looking at him.  It's amazing!

He left Thursday to go to Panguitch with his grandpa.  A month ago he purchased a new muzzleloader rifle and they took it to "sight it in".  Panguitch is his favorite place in the world and when he's there with his grandpa it is doubly good.

We ask for a special prayer for the Huish family in our ward.  Little Sadie has taken a turn for the worse and has deteriorated rapidly.  She is now receiving hospice care.  Our hearts go out to them and we wish them peace during this very sacred time.

Marley

Wednesday was the big day.  Luc's MRI was scheduled for 9:45 a.m.  The closer we got to the hospital the more anxious he became.  By the time we arrived he was having severe pain in his stomach.  The two things he was most anxious about: the i.v. and the results.  He hates needles and, even though after it is over he acknowledges it isn't as bad as anticipated, his anxiety really flares up.  He always does great in the "tube".  I think I would have my anxiety attack having to be in there that long and be still!

After about an hour he was finished and we had a few hours before we were to be at clinic.  He suggested we go to lunch, but not at the cafeteria!  We decided to go downtown and have soup, salad and breadsticks at the Olive Garden.  He was in much better spirits, so happy and positive.

We returned back to the hospital and went to the oncology clinic to meet with Dr. Lemons.  When we arrived they informed us that the dr. wanted to get labs.  They had taken the i.v. out down in radiology.  Luc has never done well if something unexpected is thrown at him.  Even when he was a toddler and needed stitches, as long as I could explain what was going to happen before it happened then he was okay with it.  He just couldn't stand the thought of another i.v. and stood his ground.  I wasn't too worried because he has done so well these past few months.  I supported him in his decision as did the oncology staff.  It turned out not to be a big deal.  Luc decided last year that, if at all possible, he did not want to be in the room when the dr. gave the results.  He had had too many bad experiences that he had opted to let me tell him after.  He waited in the hall while I met with Dr. Lemons.  Dr. Lemons informed me that the tumor is virtually unchanged, stable!!  He said he wouldn't be surprised if we even saw some delayed shrinkage.  He also told me that Luc will not need another MRI until August, unless he becomes symptomatic again.

We felt before we went that we would have good news.  We know what the Spirit has indicated, but also realize that our intrepretation could be erroneous.  We have come to completely trust the Lord's will.  Even Luc said,"Mom, I know everything will be okay.  I will be okay.  Even if that means that I am not supposed to stay.  I do trust God."  When push comes to shove, Luc shows his true colors.  He has a testimony of God's Plan of Salvation.  He knows he has a part in that plan and, even though he doesn't understand his part completely, trusts that the Lord will lead him to fulfill his part.  It takes some people, like me, a lifetime to develop the kind of faith he has in a short 14 years.  I feel extremely blessed and grateful to have the privilege of being his mother.  He may have been born a couple thousand years later, but he truly is a stripling warrior!

Marley

Luc started back to school on March 23rd.  He was so excited to start back and be a little more normal.  He is only going to his core classes and to his mentoring class.  I take him at 11:00 in the morning and he gets out at 2:30 in the afternoon.  It's almost like having a kindergartner again.  ;)  He is so happy to be back amongst his friends and being able to do his schoolwork at school.

Luc also started on a nutritional program about 2 weeks ago.  I had been thinking so much about what we could do to get all of those awful toxins out of his system and get his body functioning the way it should.  His metabolism has been messed up since his first chemo 4 years ago.  I was mentioning this concern to my brother, Bruce.  Bruce told me about a program he has been doing for over a year that has totally changed his body and his outlook on life.  I have always tried to counsel with the Lord and discern what is right for Luc.  There have been many people that have suggested many different things to help, but there have been very few that I have felt were right for him.  The one my brother told me about felt right.  After discussing it with both Ron and Luc, and praying, we decided to go ahead and get him started.  After just 5 days Luc was expressing how much better he felt and how even his attitude about things was changing.  He has had some de-tox symptoms, nothing terrible, and he has lost 6 lbs so far.  He is so excited about it and wants to tell everyone how great he feels.  It makes me feel so happy to see him becoming healthy again.

An MRI is scheduled for April 15th.  We appreciate any prayers offered in his behalf.  Also, please remember my cousin, Stewart Olsen, in your prayers.  Six months ago, after 6 months of treatment, he was cancer-free. Last week at his routine six month check, the doctors found the cancer to be growing again.  He has Hodgkin's Lymphoma. 

Thank you so much for all your support and for celebrating our successes with us!

I am sorry I haven't updated in quite some time.  Luc is feeling great.  We found out last week that he no longer will have to have his weekly blood draws.  This news did not disappoint him in the least.

We met with Dr. Randall 2 weeks ago.  He explained what the next step would be; an even more invasive, major surgery where he would basically take his whole shoulder off and bring it around to lay it on his chest while he operates.  This would enable him to see clear into the chest cavity.  Immediately after the surgery he would have to start radiation.  We listened, but feel comfort in our belief that the Lord has healed him.  We truly believe that the tumor is dead!

The doctors will continue to monitor Luc through regular MRIs.  His next is scheduled for April.

Your prayers have been so appreciated.  Please to continue to pray for Luc's faith to continue strong.  The adversary has been using his dreams to try and put fear into him.  We are praying for angels to surround him while he sleeps so that he will be shielded from these attacks.

We are so grateful for the Lord's power working in our lives!

Marley

Luc's nurse, Nikki, hung his last bag of chemo about an hour ago.  We are officially on the countdown!!  He should be finished by about 4:30 tomorrow afternoon.  He really has done well this time, thanks to friends and a cousin who have come up to play video games with him.  The distraction has been much more effective than any anti-nausea medication he has ever tried.  We are so grateful to Ryan Peterson, Josh Dennis, and David Bowers for coming up to a small, cramped hospital room and spending so many hours hanging out with Luc.  This service is immeasureable.  I know friends are invaluable in helping us get through the tough times.  He has many other friends, of all ages, that have done so many things, both visible and unbeknownst to anyone other than God.  We are eternally grateful for our angel friends.

Marley

I have mean so amazed at how well Luc is doing so far.  He is remaining so positive and is being himself.  We are so grateful for all of his caretakers here at PCMC.  They are all so compassionate.  Luc is so excited that this is his last chemo treatment.  Seeing a "light at the end of the tunnel" makes such a difference.  You can endure most anything if you can see that light.  We feel so positive and hopeful for his future.

Marley

In the book "A Return to Love" by Marianne Williamson she defines a miracle as a change in perception.  We experienced a miracle this week.  Things turned from confusing to clear, from negative to positive as our perception changed.  Nothing changed to our external world, but we were changed from within.  We feel so grateful for this miracle.

Luc decided to do one more chemo treatment.  We go to the hospital on Thursday, Jan. 15th.  He is so glad to see the "light at the end of the tunnel".  Even though he doesn't want to do even one more, he knows it is what the Lord would have him do.  I am so proud of his maturity and his willingness to submit to the will of the Lord.  I know that because he is submitting in this most difficult thing, he will be able to follow the Lord's will in all things.  He is such an example to me!

Marley

Luc didn't end up having his chemo treatment this week.  The M.R.I. showed that the tumor is unchanged from last time.  This typically would be good news for us, but, because of an experience Luc and I  had this week, we were expecting something quite different.  This was a trying time for Luc's faith and he was emotionally and spiritually depleted.  There was no way he would have been able to go through chemo in the state he was in.  We are so grateful that there was no new growth.  We trust that the Lord will fulfill His promise in His own due time.  Luc is doing much better this morning.  He has a big decision to make now.

Marley

Well, I guess all good things must come to an end, but only temporarily.  We head to the hospital on Friday.  This has been such a great and needed respite.  We have all felt so happy and rejuvenated, especially Luc.  We had a wonderful Christmas.  The Lord blessed us so abundantly. All of the kids, at different times, said that this was the best Christmas ever.  I believe it is the feeling of being cared for and united with so many.  We really do feel the prayers being offered for our family.

Today we had a wonderful visit with a friend of Luc's 4th grade teacher, Eileen Nagle.  Her friend, Brother Pratt, is almost 98 years old.  He is an amazing man who has had a miraculous life.  He shared some of those miracles with us today.  His experiences just add to our testimony of God's power and that He is still a God of miracles.  He is the same yesterday, today, and forever.  The Spirit abounded in his home, touched our hearts and increased our faith and hope.  He is a living example of the power of faith.  I am so grateful to Eileen for arranging this visit and to Bro. Pratt for taking time to share part of himself with us.  We are forever changed.

Luc will be having an M.R.I. on Friday and we ask, again, for your prayers of faith to be combined with ours petitioning those miracles that the Lord sees fit to bestow upon him.  This has been, and continues to be, a very sacred journey that has allowed us to see the goodness of our Father through His children.  We thank each of you for helping us to feel His love.

Marley 

At Luc's last treatment, I met a mother, Calleen Williams, at the Parents' Break.  She was waiting for her 3-year-old daughter who was in surgery.  She told me that little Caitlyn was the third of her four children to be diagnosed with this rare brain tumor.  Her 8-year-old son was the first and he had done treatment 4 years before and is currently in remission.  In September their 1-year-old was diagnosed with the same type of cancer.  He is currently undergoing chemotherapy.  The doctors had found that this is genetic, so they brought little Caitlyn in to have genetic testing and found that she had the gene (their 12-year-old daughter does not have the gene).  They immediately took her in for a scan and found a 5 cm tumor in her brain (she had not had any symptoms).  November 11th was the day I met Calleen when Caitlyn was in surgery.  The surgeons were hoping to be able to remove the whole tumor and not have to have any further treatments.

I found out that Caitlyn passed away at 2:30 p.m. yesterday.  I feel like I have been hit in the stomach.  Even though I didn't know Caitlyn, and had only talked with Calleen a short time, I am grieving for them.  I just wanted to put out a plea for prayers for the Williams family.  I know this is extremely difficult for them.  They are mourning their daughter and also have to go through treatment with their little son.  If anyone is going to the temple soon, please put the Williams family on the prayer roll.

As far as Luc is concerned, He is doing really well.  This break has been absolutely wonderful.  He is feeling good and he even has a five-o-clock shadow on his head!  His next treatment starts January 2nd.  We are so grateful he has been able to enjoy the holidays and feel a little more normal.

At this season (and always), we are eternally thankful for our Savior.  We know that He suffered all things for us, and that He is walking with us in our journey.  We know that He is comforting the Williams family, and all those around the world who are mourning.  We are grateful for the records that were kept that give an account of his life, ministry, and atonement.  We are thankful for His grace and the hope we have through Him.  May your Christmas be filled with His grace and unwavering hope.

Marley

              Hi everyone it's Luc. I just got back from my farel pig hunt Sunday. I had a great time. We got there and we decided to drive while the other hunters walked. All of the sudden the guide, Owen came running up and told us that there were two pigs a little further ahead. So we got to the pigs and the other hunter took a shot a t the 600 pound one with his bow and took it down with several shots. Then I used my Grandpa Ron's 22-250 and shot the 350 pound pig through the lungs it died almost instantly. After we got some pictures and gutted them we hauled the 2 pigs back to camp. Then Allie, the other guide, asked my grandpa if I would like to hunt a ram free of charge. I couldn't believe it. They were very generous.

               So we went searching for rams. We found them, 3 of them. Owen and I decided to get closer for a better shot. We waited laying in cactus and weeds for the rams to separate themselves. Then the one Owen wanted me to shoot ran out. BOOOM!!! For a second it looked like I missed, but sure enough after a couple of steps the ram plowed into the ground. Another perfect vital shot, it either hit the heart or lungs. We got to the ram, it was nice a curl and a half. after numerous photos we went back to camp and Owen said that he was also going to mount it on a mount. I was so happy and greatful. I had a REALLY fun time. I can't wait for next year's hunts.

We will post pictures soon.(Warning Pictures May Contain Blood)

~Luc~ 

Last Saturday was the Yard/Bake sale fundraiser that our friends, and members of our ward held for us.  It was an amazing day.  Luc wanted to be there from the time it opened.  When we arrived we were overwhelmed with all the items that had been donated.  There were also quite a few people already in attendance.  It was so fun to see so many people come throughout the day.  Even Ron's 86-year-old grandparents attended.  It was such a boost to our morale to see all the people that care for and support us.

We feel so blessed to live in such a unified community.  Even the mayor's office has become involved.  We want to thank all of you who were involved in any way.  The gratitude we feel is inexpressible.

I loved hearing comments, throughout the day, of how helpful this was for others as well.  I heard mothers say how many great clothes items they found for their kids.  One of the things that made me feel so good was that this fundraiser not only benefitted our family, but many other groups as well.  The clothes that were left over are going to a village in Mexico this winter (50 garbage bagsful), the leftover coats went to the city's coat drive, the leftover stuffed animals went to a family who is doing a service project for the kids at Shriner's Hospital, the leftover suits and suit coats went to the homeless shelter to help those who are getting back into the workforce, and all other items were donated to the D.I.

It was truly an amazing day.  We literally saw the "body" of Christ at work.  We were ministered to in every way.  It will be one of those never-to-forget memories.

Marley

P.S. The flyer below is from some friends that I work with in my real estate office (actually they were my friends even before any of us went into real estate) who wanted to help.

Luc is doing so much better today. He feels happy and has a bit of an appetite back.  He is so excited for two things.  The first is for the yard sale tomorrow.  There had to be a little change and they have to have it outside.  That is a good thing for Luc because it is safer for him to be outside, less chance of him "catching" a bug.  The second is a wild boar hunt that has been arranged for him and his grandpa next Saturday.

We have been so overwhelmed by the outpouring of support that we have received from encouraging comments on this website, e-mails, meals, to everyone who is contributing their time and things for the yard sale.  Our ward, from what I understand, has been amazing.  It doesn't surprise me because I have seen them in action.  They are true disciples of the Savior.

We are enjoying the beginning of, what we hope will feel like, a L-O-N-G break from the hospital.  It came at such a great time.  We feel very positive and grateful for the challenges we have.  I had a thought the other day.  Even if we can't feel grateful for what we are in the midst of now, we can certainly look forward with faith and be grateful for the Lord's purposes being fulfilled in us.  We know we will look back and see how far we have come and how different we are and be so grateful for those changes in us.  I love the quote by C.S. Lewis called The Living House:

It's been a rough couple of days.  Luc has been open to trying pretty much everything to alleviate the nausea.  He ends up more nauseous than before.  We are now trying some aromatherapy and I am going to contact someone that lives in our old neighborhood who may be able to help me with some accupressure.  If he can just endure this then he will be able to enjoy the holidays and not think about any of this.

This morning a high school singing group came to perform a few songs.  They were singing in the hall.  Luc was too sick to go out, but I went out.  There was just one little girl, about 4 years old, just standing mesmerized in the middle of the hall.  The group was singing "I Can Only Imagine" (which is one of my favorite songs).  A few of the teens were almost too choked up to sing.  It was a very touching scene.  It was all I could do to choke back my own tears.  I know that these kids up here are in the presence of "the Son" even though they can't see Him with their eyes.  He would never allow them to do this alone.  What a wonderful world it will be when He reigns and there is no more suffering!!

Marley

I am so proud of Luc.  He did so much better Thursday night and Friday morning than he usually does.  He stayed much calmer and tried to focus on positive things and the things he has to look forward to.  His nurse, Mitch, and the Child Life Specialist, Mike, also noticed how much calmer he was.  This made accessing his port and preparation so much easier.

Dr. Lemons came in to see us yesterday.  He gave Luc an early Christmas gift.  He told Luc that, after this treatment, he gets a break for the holidays.  He doesn't have to have his next treatment until January!!!!!  Luc had a perma-grin on his face.  I'm with Luc, I could not be happier.  In January he will have another MRI to see if there has been any tumor progression. 

Luc decided to allow them to give him the "sleepy" meds because he wanted to just sleep through his treatment.  These meds are for nausea, but seem to cause Luc to be more nauseated.  At least he can sleep more and the time will pass more quickly for him.  It took him a little longer to get hydrated this time and so I hope we will be able to go home on Tuesday.

Ron is doing very well in his training in NY.  He has received a 92% on both the tests he has taken so far.  We really miss him and can't wait for him to arrive home on Friday.

Cecilia and Zac are being spoiled by their grandparents while we are in the hospital.  I am so grateful for their willingness to help us.  They love their grandkids so much and so their grandkids love spending time with them.

I am so grateful to be a mother.  There could be no greater blessing than being entrusted with these "noble and great ones" of our Father in Heaven.  What a sacred honor and responsibility it is.

Marley 

Yesterday was a really rough day.  Luc has been having stomach pain.  It was really bad on Monday.  Yesterday morning he started having it again.  On the way to the hospital it became excruciating for him.  I called the oncology clinic to see if they could ask the doctor if they could have some pain meds ready for him when we got there.  We went straight up to clinic when we arrived.  Luc was just writhing in agony.  After about 40 minutes they were able to access his port and give him something for pain.  They called a surgeon over to examine him because they thought he may be having appendicitis.  He ended up having a CT scan of the stomach and bowel area.  It was extremely painful because of the way they had to give the contrast.  Luckily the appendics looked normal, so we avoided a surgery. 

Later that afternoon they were able to get him in to have the MRI.  After that they admitted him and we got to a room with a bed.  He had been through so much that they decided to watch him overnight and give him i.v. fluids and some i.v. meds for the stomach pain.  The dr.s think that the pain is caused by one of the medications he takes at home in-between chemo treatments.  It can cause inflamation of the stomach lining and ulcers.  A combination of this and his anxiety is most likely what caused the intense pain.  This morning Dr. Lemons came to see us.  He recommended that we postpone the treatment a week.  He wants to try to get the stomach healed and for Luc to regain some of his strength.  Luc was happy to hear that.  He was so weak he didn't feel like he could take having the treatment after all he had been through.  So, we are home.  We are glad to be here.  It was a very long day yesterday.

Dr. Lemons gave us the results of the MRI this morning.  The tumor is slightly larger, but he said that the growth could have come in the time between the last MRI and when we started the chemo.  He said he was encouraged by the report because the rate of growth has been drastically diminished.  Hopefully at the next MRI we will actually see some shrinkage.

Ron is leaving tomorrow for a 2 week training for his job in New York.  We will miss him so much.

Marley

Luc's grandpa and grandma "kidnapped" Luc for most of the week and took him to Panguitch to get the house closed up for winter.  He has called every day to tell me the fun things they are doing there.  They found a field where there are a lot of jackrabbits.  He was able to use his gun and do a little rabbit hunting.  He loved it.  He is coming back this afternoon. I am soooo excited!! 

When the nurse coordinator called last time with Luc's blood counts, she also told me that Dr. Lemons would like Luc to have an MRI after his echocardiogram on Friday when he goes in for his next treatment. (I didn't think he would have to be scanned until December.)  Whenever scans come up my stomach starts to get so anxious.  I want so badly to receive good news, but for the past year the scans have not been very positive.  Please pray that the tumor has at least stopped growing.  Last time, at the hospital, the doctor said that if a scan showed that the tumor was still growing then they would stop the chemo treatments.  I don't know what we would do after that.  I am trying to stay positive.  I know that the Lord is in control.  He can see the whole picture and I trust that the best thing for Luc and all of us will happen.  This life is such a short "blip" in our eternal lives.  I am sure that when we get to the other side, and are able to see all the good that comes from those extremely difficult hardships we have had to endure, we will rejoice in the wisdom of our Father.  Our job is to keep our eyes focused on Him and never turn away.  I know He loves each of us more than we can fathom, despite our faults and frailties. I also know that, at the most difficult times in our lives, our Savior will carry us if we will allow Him.  I have had to ask for that help both for myself and for my boy.  I know we could never do this alone.  I realize my utter dependance on Him.  There are not words to describe how thankful I am for my Savior.

Marley

Today I am in awe of our bodies.  Luc and I had the privilege of going to Body Worlds at the Leonardo in Salt Lake.  The director of the Salt Lake Chapter of HopeKids arranged for us to go today.  It was truly amazing.  No wonder God considers us His greatest creation.  It truly is a miracle how our bodies function and how resilient they are.

Luc's favorite part of the exhibit was the room with the development of the embryo into a fetus and then into a baby.  He was so amazed at how an embryo tinier than a peanut can have arms and legs, fingers and toes.  He felt sad to see the tiny babies who didn't make it to full term, even though they looked perfect.

We took special notice of the area of the body where Luc's tumor is located.  It was so helpful to visualize what the brachial plexus looks like.  No wonder they call it the "nerve center".  It is so intricate.

I asked Luc if he still wanted to be a surgeon after seeing all the aspects of the human body and hearing how complicated it truly is.  He said that he was more excited than ever to go into the medical field.  We both absolutely loved the exhibit.

Marley

P.S.  Luc's blood counts are still okay and we are so grateful for that so that we could go today.

As I was tucking Zac into bed last night I thought, "I can't wait until we are in our house and Zac can have a regular bed and not a bunkbed.  I want to be able to sit on the side of his bed and rub his back instead of having to reach up over the safety plank to rub his back."  In that moment I realized that I was focusing on what I didn't have instead of what I do have.  The feeling of lack was immediately replaced by a feeling of abundance and gratitude.  I truly felt grateful that we all have beds, a warm place to sleep and that we are all together as a family.

Today I am so grateful for an abundance of the necessities of life.  I am deeply grateful to be surrounded by people who love us.  I am grateful to live so close to a hospital, doctors, and nurses who so kindly treat my incredible son.  I am grateful that he is starting to feel better, that he ate 3 pieces of pizza last night.  I am grateful for his awesome friends who are so supportive of him.  I am grateful to know that the Lord is not only watching over us, but walking beside us.  He also has blessed us with a host of both heavenly and earthly angels to care for us.  We are blessed so abundantly and are so grateful to our Father in Heaven for all the good in our lives.  We are also grateful for the not so good because we know that he can turn everything for our good.  I trust Him and that feels so good.

We get to go home today!  This has been a huge challenge for Luc.  I know he is a strong boy, but even for someone so strong it is extremely difficult.  I wish I could write that he is doing great, that it is not affecting him, that he stays so positive.  The fact is sometimes reality isn't all that positive.  I am very impressed with him for his endurance.  Sometimes in life all you can do is just hang on and that is what he is doing right now.  Most of us have had times like that in our life whether it is a physical, spiritual or emotional thing.

His friend, David, came up last night and they played a video game.  The distraction was so good for him.  He doesn't really smile or laugh when he's in the hospital, but he did last night with David.  It made my heart feel so good to see him happy, enjoying time with his friend.

We are grateful that he gets to go home today.  I met parents of a girl who was diagnosed one week ago with leukemia.  She has to be in for a month.  Fortunately she is not feeling sick, but her bone marrow isn't making any red, white blood cells or platelets so she has to be given transfusions.  When we meet others, we are grateful that we haven't been given any more than we have.

Marley

Just a quick update.  Luc has been doing well.  He just started to feel nauseous in the past hour.  He is trying to stay positive and focus on other things.  We switched beds last night.  He wanted to be out of the hospital bed.  He said he did okay last night.  You don't get much sleep when the nurses come in every 2 hours.  We feel so grateful that we don't have to stay any longer than we do.  We know that there are so many children that spend long periods of time here.  We really feel for them and their families.

Marley

I know I already posted today, but I just read this letter on the blog of the family in our ward whose daughter is battling brain cancer.  I didn't even know that September was Childhood Cancer Awareness month.  If you find this as compelling as I did, please copy it and e-mail it to all the people you know.  We need to do something about this.  If funding for childhood cancer is so limited, imagine how limited the funding is for research of extremely rare tumors/cancers such as the one Luc has.

September 28, 2008

Have you seen a gold ribbon? Do you know what it stands for? Have you heard that September is Childhood Cancer Awareness Month? I am the mother of a child living with brain cancer, a diffuse intrinsic pontine glioma. I finished breast cancer treatment on July 10th and flew from Michigan to West Virginia that day for the funeral of another child...a beautiful fourteen year old girl who lost her battle with the same rare brain cancer. Everywhere I look I see pink ribbons, I feel gratefulness. ..and I feel anguish. According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment "...98 percent of women with early-stage [breast] cancers survive at least five years.." Why is this true? Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters. Our children who are living with-and dying from-cancer desperately need that same attention... and funding.

Helen Jonsen, Forbes.com senior editor and mother of a child who recently underwent treatment for osteosarcoma, stated in a September 12th article, "Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk about it in hushed tones instead of screaming for help. But scream we should." The article goes on to say, "The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year." September 13th was our nation's first Childhood Cancer Awareness Day. When I didn't see anything about it in the news-but I did hear about National Talk Like a Pirate Day a couple days later, I made some calls to our local news stations. For some reason I can't get the words of one of the story editors out of my mind. "So...what's your event?" Later."Pitch me a story."

Let's see...ummmm. ..would the deaths of 2,300 children each year be newsworthy? What about the diagnosis of 46 children each and every school day? What about the fact that only 2/3 of children diagnosed with cancer will survive? We could move on to funding. Is it newsworthy that for every dollar spent on a patient with prostate cancer, less than 20 cents is spent on a child with cancer...or that a patient with breast cancer has triple the research resource allocated to her when compared to a child?When I mentioned that Child Cancer Awareness Day--and month--are a national thing, I was told, 'We put local news first.' Okay...I can handle that. A local event...I have a list of them.

The shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, "There is a large area of swelling in the brainstem; we suspect a mass." We could always throw in the comic relief of the words, "My mom has a mass!" coming out of the mouth on that happy little face.

How about a mother leaving the Pediatric Intensive Care Unit late that night to go home because she knows she needs to get a good night's sleep before attending an Interdisciplinary Clinic early the next morning...where her own treatment plan will be recommended?

How about a local pastor, husband, and father being given the specifics of his son's grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife's diagnosis and prognosis from the Cancer Center at another hospital?

How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out of the routine world of reading, writing, arithmetic, language, history and science as taught to them by Mom at home...and being thrown into a class on brain anatomy and abnormalities (specifically their little brother's) taught appropriately and compassionately by an MSU med school professor... who also happens to be their brother's new oncologist?

How about a six-year-old who finds himself no longer able to play the piano, the violin, or the cello because he has lost the strength on the left side of his body?

How about a mother waking up in her child's hospital room one morning, showering, and walking downstairs for her lumpectomy.. .while her husband takes over the duties of hospital parent and waits anxiously in his son's room for news of his wife's surgery?

Looking for a human interest story? Try the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church...only to watch in disbelief as her fun-loving, active six-year-old- -determined not to have an accident--becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things...because he knows his mother is recovering from surgery and he is concerned for her well-being?

Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son's oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, then staring ahead...completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. Aside, the question parents never want to hear, though one that must be asked, "Given his prognosis-do you want us to resuscitate him, if necessary?" The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we know what is happening?' The answer is no. 'Then, yes, we want you to do everything you can for him.' She stands at the foot of the bed with one of her son's oncologists. Together, they watch the PICU team work...with purpose...like a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room...that one little boy.... The eyes of those outside the room...every nurse, every resident, every doctor...are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable...on life support....

I have just highlighted the first month of our new life in the pediatric cancer world. I am aware of five precious children who died this week--within five days--as a result of just one type of rare cancerous brain tumor, the same as my son's. Skyler...Adam. ..Mara... Brynne... and Lauren. They belonged to all of us. What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity's child or the child of a political leader? Will it be the death of a child belonging to someone in the media? Will it be your child?

Please, join the effort to raise childhood cancer awareness. Show your support by wearing a gold ribbon, and by making the issue an important topic of conversation. Distribute copies of this letter in your place of employment, in your place of worship, and in your community. Contact government officials, and express your concern. A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel. It didn't take long for pink ribbons to raise breast cancer awareness in the public eye, and to mobilize our society to action. I hope that in 10 years gold ribbons will be as common as pink ribbons...and that the survival rates for pediatric cancers will be comparable to those for breast cancer. With your help, it will happen...one gold ribbon at a time.

With Hope for Our Children,
Sandy Smith Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancer

Luc spent the past week in Panguitch with his grandpa.  In his eyes, Panguitch is as close to heaven as you can get on this earth.  He so enjoyed being alone with his grandpa.  They went out every morning and every evening hunting deer.  He shot at a couple and had near misses each time.  Luc and his grandpa are "two peas in a pod".  They love being outside hunting and fishing, they love Panguitch, and they love each other.  I feel so grateful he has such an amazing, invested grandpa.  Luc told me that while he was in Panguitch he was able to forget all about the challenges that face him in his life.  It was truly a vacation in every since of the word.

Before Luc went to Panguitch he was able to get his gun.  It was almost exactly 3 weeks from the day we went to Cabela's and took his picture with the gun.  I think that is pretty incredible that a 13-year-old could raise $260 in less than 3 weeks.  He received some donations from family members, he sold some things on Ebay and he kept a positive attitude that he was going to get his gun before the deer hunt.  He even pointed out to me that when he bought his gun he was wearing the same t-shirt he had on in the picture.  He said, "Mom, the visualization really works!"  His friend, David, and his dad and grandpa took him to Cabela's to buy it.  Randy, David's dad, even bought Luc some ammo to go with his gun and treated them all to dinner.  He had such a great time.  He was so excited to get his gun that he was shaking.  He has never been so excited to get anything in his life!

We are including some cute pictures of Luc (BALD IS BEAUTIFUL!!) with his gun and with Cecilia and Zac.  They all love each other so much.  Even though they have their times of contention, they enjoy being together and making each other laugh.  I am a very blessed mother.

Marley

--P.S.  Ron found out this week that he got a position at a company called Paychex.  We are all super excited!!  I am so proud of you, Ron and I love you with all that I am!

--P.P.S. Luc goes in for his next treatment tomorrow.  Please pray for him to be surrounded by angels.

bri·gade     /brɪˈgeɪd/  -noun 

1. a group of individuals organized for a particular purpose

Marley and I want to thank everyone who supported Lucas yesterday. Some of his closest friends showed up at the Willow Springs clubhouse and, in turn, had their heads shaved so that he (Lucas) wouldn't be the only bald-headed kid in school. It truly made his day. Again, thank you so much everyone!

Also, I want to thank Rita Bowers for the donuts and soda.

And a special thank you to Traci Schroeder who volunteered her time to assist in the shaving of heads.

Here are a few of the photos from yesterday's event (click on any image to enlarge it), and, wow, even Lyndee Hudson (img #8) got Luc's initials shaved out of the back of her head. Now that's love!

Enjoy,

~Ron

We have been so blessed that Luc has done so well so far.  His blood counts have not yet gotten dangerously low, he has been eating well, he has been able to go to school a little bit.  We are so grateful that the Lord has seen fit to bless him in these crucial areas.

Sunday started a bit of trauma in his life.  I went to wake him up to get ready for church and, as I was running my hand through his hair, a ton of hair came out in my fingers.  When he woke up he put his hand through his hair and had the same results.  Within 3 minutes I had removed 3 handfuls of hair by just running my hand through it.  He was so upset.  We weren't expecting it this soon.  The doctor had indicated that it most likely wouldn't start falling out until after his next treatment.  He really wanted to have his hair for the hunt.  When I asked him why it was so important, he replied, "Mom, Panguitch is the only place where I feel I can leave all this behind.  If I'm bald when I am there, people will be asking me why and I won't be able to get away from it."  It is more than being bald that bothers him, it is what it represents.

He has some absolutely fantastic friends.  They came to us and asked if we could have a "head shaving gala".  They want to shave their heads too!  They can't go through everything that Luc is experiencing, but they want to share this with him and support him.  I am so grateful for their friendship.  This party will take place tomorrow afternoon at the clubhouse of our condo complex.  We are going to create some crazy & funny styles first before we completely buzz them.  I believe that this will turn this from a negative into a fun, positive thing.  I will post the pictures when we get them.

I also need to express our deepest gratitude to those incredibly generous and giving individuals who, this past week, have left groceries on our doorstep 3 different times.  We have felt overwhelmed at the love of our Father expressed by others.  He truly does take care of us in every way.  I have no way of knowing who it was, and I know that they want it that way so that we will give the glory to the Lord.  We thank Him with all our hearts and know that the reward for the charity shown to our family will be a hundred-fold.  That is exactly what we have prayed for.  Our kids are so excited for the opportunity we will have to "pay it forward" someday soon.

Marley

Luc is doing amazingly well.  He went to school Wednesday afternoon and is planning to go this afternoon, too.  His blood counts have been good and it has even surprised his nurse coordinator, Alyce.  Because this is his first round, and we don't know what to expect, she said to be cautiously optimistic.  His counts could still go down, but we are so grateful that they have been good.  He seems to be keeping up with his school work.  We ended up dropping his electives because, many of them, the work could only be done in class.  I told him that he will have 4 years to take all those fun classes.  It seems much more manageable to keep up on the work from his 4 core classes.  He truly is being blessed in all ways.

I need to thank the "angels" who have given so generously to help our family in a very challenging time, with Luc's health and Ron's unemployment.  We are overwhelmed by the feelings of gratitude.  It is affecting all of our children in a good way and, I believe, they will be so much more consciencious of others when they see others in need and will thus seek out ways to help them.  And I know this will be a part of them throughout the rest of their lives. 

Marley

Sorry that I haven't gotten around to updating since we got home.  The first few days Luc still felt very sick, but once he was able to start eating regularly he started to improve rapidly.  He even felt up to going to his grandparents for a barbeque on Friday evening.  Last night we went on a walk as a family.  It felt so good to be out breathing the fresh air and laughing.  Luc was back to his humorous self, making us all laugh.  He even said that if his blood counts were good enough he would go to school on Tuesday.

The nurse came and drew blood this morning (he will have blood draws twice a week) and, although his counts have come down significantly to those a week ago, they are still okay.  He was looking so forward to going to school tomorrow, but this afternoon and this evening has felt so weak that he has a hard time even walking down the hall.  I told him that we will see how he feels tomorrow.  He is concerned about falling too far behind.  His advisor, Mrs. Allen, brought him some of his work tonight.  If we can get into a routine here at home, I think we will be more successful in keeping up with his work.

I am so grateful that he has done so well after this treatment.  I feel that all of our prayers are being answered.  I know that there is purpose in all that the Lord has given us to experience.  We have more empathy not only for people passing through similar challenges, but for all who suffer.  I loved Elder Marlin K. Jensen's talk at the regional conference this past Sunday.  He spoke of people who are different and being mindful and empathetic of them.  When we were baptized we covenanted to "mourn with those who mourn and comfort those that stand in need of comfort".  He quoted the Primary song "I'll Walk With You", which is one of my very favorites.  He also said that, in some way, we are all different and all have need of the succor of our Savior.  We feel so blessed to be surrounded by true disciples of our Savior who do their best to comfort and succor us.  You have been His arms in lifting us, His mouth in encouraging us, His back in carrying us.  We will be forever grateful for this journey that we were not required to travel alone, but with those who truly are part of the body of Christ.

Marley

It feels so good to be home.  Luc was chomping at the bit to get out of the hospital this morning.  He didn't get discharged until about 12:30 this afternoon.  He is so glad to be back at home.  He is experiencing severe nausea most of the time, but just a few minutes ago he was able to eat some delicious soup that a family in our ward brought us.  It did my heart good to see him eat.  He lost over 6 pounds in the hospital.  His blood counts were good when we left.  The doctor said that in about 10-15 days his counts will bottom out.  He received a shot today that should shorten the time that his white blood cells (neutrophils) are at their lowest.  We had some really great nurses and techs up at PCMC, and the Childlife specialist, Mike, was so awesome.  He spent some time with Luc teaching him a technique to help him calm himself.  Luc is supposed to practice during times when he is not stressed so that it will be easier when he is.

Ron said that he could never be a single parent. When Zac got home from school he about plowed me over with the hug he gave me.  I think we are all glad to be a family again.

Marley

A few photos taken before and after hospital admittance. Enjoy. ~Ron

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 .

Luc and I met with his oncologist, Dr. Lemons, yesterday.  I was expecting to hear all about the oral chemo that Dr. Randall had mentioned.  Instead, he recommended a "new" treatment.  He told us about a patient he has that had the same type of thing happen to him a couple of years ago.  The boy was 12 or 13 and had a desmoid tumor in his abdomen.  After surgery the growth of the tumor just "exploded" (like Luc's is doing now).  Dr Lemons called around the country to different medical centers to see if there were any "new" options that doctors were trying.  He said he found one that the doctors at MD Anderson Cancer Center in Texas were having success with.  So, he tried it with this boy.  It was successful in shrinking the tumor (it didn't go away, but got smaller) and after 1 1/2-2 years there has been no sign of growth!  That is amazing because this is during a time when hormones are raging in a boy.  (That's what desmoid tumors feed on.)  This made me feel hope that maybe we can get this tumor under control and buy some time.

Now, the treatment.  It is a pretty rough treatment :(  The treatment consists of 2 I.V. chemo drugs (Doxorubicin and Dacarbazine) and 1 oral drug (meloxicam).  Luc would have to be in the hospital for 4 days, as the I.V. drugs are given continously over 4 days.  He would do this once a month for 4-6 months.  The side effects are not very pleasant.  He would most likely have to go to school only part-time if at all. 

I feel so torn because this gives us a hope we have never had, but Luc is not okay with this treatment.  He had such a rough time before with his chemo treatments. How do I willingly turn my son over knowing what he will have to suffer?  I want to do this for the results, but I don't want him to suffer.  I also don't want to force him to do something he doesn't want to do. So, if this is the right thing and the best thing for him, please pray for him that he will be okay with it and feel peace and the arms of his Savior wrapped around him. I love him with all that I am and this is a difficult decision.

Dr. Randall's nurse called this afternoon with appointments for Luc to see his oncologist, Dr. Lemons, and a radiation specialist, Dr. Millions at Huntsman's. The three of them are going to brainstorm and try and figure out what to do next. We won't know what they've decided to do until the first part of August. Lucas seems to be doing a little better. I think it helped him to spend a few days with his cousin (they went to Lagoon together on Wednesday).  I know he just wants to be a "normal" kid.  I am proud of how well he handles everything.  I have a lot to learn from him.

--Marley

Well, what was supposed to be a baseline M.R.I. turned out to be something else.  Dr. Randall said that the tumor is growing in a new place, adjacent to the original site, and that it is growing pretty fast.  He was perplexed about what to do.  He said that if he goes in and does surgery again we would probably be looking at the same outcome in 3 more months.  He will meet with Luc's oncologist and a radiation dr. to see what they think.  We are supposed to hear within the next couple of days when they want to meet with us.

Please keep Luc in your prayers.  He is very upset.  He feels like this is never going to end.  He is such a strong kid, but I think he's tired of being strong.  I would do anything to take this and do it for him.

We know the Lord is watching over us and knows what He is doing.  As George Washington said to his men before the battle of Trenton, "The greater the battle, the greater the victory!"  We expect a grand victory, but that doesn't mean there won't be injuries or casualties.  We just trust the Lord to get us through and know that He has suffered this and knows how to succor Luc and us.

--Marley

Luc just got home from a week-long scout camp. He had a good time and got a few merit badges.  One of them was the shotgun merit badge. He loves to hunt and has a good aim.  He said that he shot 19 out of the 25 clay pidgeons. The reason he missed the first 6 is because the gun was so long and heavy and he couldn't hold up the barrel with his left arm because of how weak it is. As soon as the man in charge held up the barrel Luc shot every one. I believe he has now earned his Life and is starting to work on his Eagle. I am grateful for his scout leaders and the other boys he was with who made it a fun experience for him.

This Tuesday, July 15, is Luc's M.R.I. He is feeling very anxious. He says he can tell the tumor has been growing because he feels a different kind of pain than he normally does. I think that the pain is probably healing that is going on inside. Whatever it is we will most likely get a better idea when he has his M.R.I. I am expecting that we won't find out much, but that this scan will be a baseline for future scans. At any rate, please pray for Luc that he will feel peace and that he will do well during the M.R.I.

I also just found out that the little girl in our ward, Sadie Huish, that has a brain tumor has had significant growth in her tumor and is having increased symptoms. We ask for your prayers for her and her family. We pray that the Huish family will feel heaven's continual peace and blessings and that Sadie will be free from any pain and discomfort. We love the Huish family dearly.

If I could also ask for one more thing in your prayers. Ron is still without a job. Please pray that the job that the Lord has prepared for him will come into our path this week. He has been doing his part to find one, but it has not happened yet. We still feel very peaceful and are grateful to our Father in Heaven for that. A few more prayers couldn't hurt though.

Thank you all for your love, prayers, and support. It means so much to us.

--Marley

Luc had an MRI scheduled for this Tuesday.  We had to postpone it because Ron is currently out of work and we do not have insurance.  I rescheduled it for July 15 having faith that Ron will be employed by then.  We know the Lord is preparing a wonderful job for Ron and that, in His due time, He will guide Ron to that job.  In the meantime, Ron is sending out lots of resumes and interviewing.  We would love any prayers to help us during this time.  Thank you so much for your support!!

Luc, on the other hand, is extremely happy that his MRI has been postponed.  He is enjoying his summer and looking forward to going to Panguitch (his favorite place in the world) with his grandpa.  He seems to be doing great and does everything he wants to do.  He doesn't let his limited mobility hold him back.  He is also looking forward to doing some rock climbing as soon as the weather dries up and warms up.  He is turning into a typical teenager. (And, by the way, who says boys don't have PMS?!! lol)  He's a great kid and we feel so lucky to have him in our family!!

Marley 

Lucas' recovery continues to go remarkably well. He is back in school but does refrain from participating in his PE class (doctor's orders). Aside from that, he is a pretty normal kid.

His next MRI is a few months away, which means that our next post to this site won't be until June. If you'd like to get in touch with any of the administrators of this site between now and then, here are the addresses:

lucaslizard7@hotmail.com

marleyorton@hotmail.com

~Ron

P.S. In addition to any prayers that are offered in our behalf, we would also encourage all those who frequent this site to pray for Sadie, a little girl in our ward who was recently diagnosed with brain cancer. We love the Huish family and we pray that they will feel the Savior's peace in their lives at this time and always.

This past week has been so smooth.  Luc has been doing amazingly well.  I was trimming some of the steri-strips from his incision and I couldn't believe how good it looks.  There is just a very thin line that is skin color, no redness or rawness to it.  We know it is due to so many faithful people, friends and family, who are remembering him in their prayers.

Last Sunday his deacon advisor came to administer the sacrament for him.  (Just a little background about Brother Huish; about a week before Luc's surgery their family found out that his 5-year-old daughter has a brain stem glioma which is the worst type of brain tumor there is.)  He shared with us a scripture that Pres. Monson had quoted in a blessing he gave to Sadie Huish.  It is the scripture in D&C 84:88 that says the Lord will go before us and be on our right hand and on our left and angels will be round about us to bear us up.  He talked about all the people who had served as "angels" to bear them up during this difficult time in their life.  I certainly can say "amen" to his message.  We feel so loved and so taken care of.  We know that all of you are the Lord's angels on this side of the veil ministering to us.  There are not words to describe our appreciation and love for each of you.

We will meet with Dr. Randall on Tuesday for Luc's post-op and he will let us know when Luc is okay to go back to school.  Luc is excited to get back.  He gets very bored and hates being "out of the loop" with his friends.

If you wouldn't mind adding beautiful, little Sadie Huish and my cousin Stewart Olsen to your prayers, we would be so grateful.  My cousin, Stew, was recently diagnosed with stage 3 Non-Hodgkin's Lymphoma.  There are so many opportunities for growth and drawing closer to the Lord being given to so many right now.  We are grateful for our privilege to feel the thinness of the veil and the love of the Lord in our lives.

--Marley

Sorry I haven't updated since we've been home.  It always feels good to come home.  Everyone always sleeps so much better.  Before we left the hospital Luc was saying, "It won't be so bad having the drain and picc line.  I know I'll have it out in a few days."  And he planned how it was going to go.  This was what he planned:  The day he was to have his dressings changed and shower, the drainage output would be under 30mls and he would be able to have his last dose of i.v. antibiotic (because it would be at the time he would be due for another dose), the picc line would be removed, the dressings would come off, the drain would come out, and he would be able to shower.  Well, guess what?!  That's exactly how it went today.  It was little painful and a little bloody, but worth it.  He was so excited to have his extra "appendages" out that he was had a perma-grin for a while after.  I took pictures of the dressing and the incision with the drain in.  They are in the photo gallery below and to the right. (You can click on a picture to enlarge it.)  He is excited to be able to move about a little more freely.  He even wants to try to put together a big Star Wars Lego set we got him ( there are over 1,000 pieces).

Luc has done so well again this time around. It is interesting that this time has been very different from last surgery, i.e. coming home with a drain and picc line, more pain and discomfort, lightheadedness.  You would expect the same type of surgery to be the same after.  Even though it has been different, Luc has adjusted very well.  Once he can think about things, he easily accepts them even if he doesn't like it.  He then moves forward with such determination to make the best of the situation.  I learn so much from him each day.

We have been spoiled by yummy dinners each night, calls of concern, and we even had a future neighbor (when we build our new home) bring us a bunch of movies to keep Luc entertained.  We are surrounded by so many thoughtful and service-oriented people. We feel very blessed to live where we do and have the great friends we have.  A HUGE thank-you to all of you!!

Luc never ceases to amaze me.  He is progressing even better and faster than last time.  His doctors and nurses can't believe how well he is moving around and that he doesn't require the heavy duty pain meds. They say he may be able to come home as early as tomorrow.  Luc was flying high when they told him that.  He was so happy and excited for about 2 hours, until Dr. Randall told him he would most likely have to go home with the drain in and a pic line for i.v. antibiotics. (The drain was put in the void where the tumor was and there is a long tube attached that comes out of the incision and has a little bulb type thing on the end which collects the drainage. It is very uncomfortable and Luc feels very inhibited by it.)  We are focusing now on Luc being home without any attachments, just Luc and his dressings.  We would greatly appreciate any prayers offered on his behalf that his desire will be fulfilled.  Thank you for all the calls and offers of support and for the outpouring of love.  We feel so much stronger knowing that we have so many behind us to buoy us up!

--Marley

Deja vu!  The surgery went really well and Luc is resting in his room. They came and got us to go to recovery at about 4 this afternoon.  Dr. Randall said that he was able to get all but a thin strip that was intertwined with blood vessels and nerves.  He felt really good about what the amount he was able to get.  So far so good with pain.  They are giving him something different from the morphine and he has had very little nausea so far. He is so brave and such a great kid.  We are so blessed to have him as our son.

--Marley