Monday, August 31, 2009

Heavy Hearts, Thankful Hearts

Lucas slipped into a Coma sometime in the afternoon yesterday, Sunday, as he was being held by loved ones. Our hospice nurse came out last night to confirm his unresponsive state as a Coma. We are grateful to all who have come to visit and as always to all those who have been Angels to us throughout Lucas' struggle. Our faith is strong, but our hearts are broken. We feel a calm assurance that Lucas will be fine and soon will be with his Father in Heaven and his Savior. We lovingly and respectfully ask that visits be limited to immediate family and please understand that we would love to visit with everyone, but our time with Lucas seems limited. We appreciate your continued prayers for our family as it has given us much strength and support. I wish we could give more personal responses to all of your comments and acts of kindness, please take this as our way of saying thank you from the bottom of our hearts.

Lucas is a very special boy sent to unlock the love in people's hearts and teach us lessons we might not otherwise learn. It seems his mission is drawing to a close. We love you our friends. Thank you.


Friday, August 28, 2009

Our Hearts are Broken...

I am sorry that I have not updated until now. It is 4:30 am and I have been up for the past hour rocking our sweet little boy. He was not awake but I couldn't sleep and just wanted to hold him. The past couple of days have proved to be quite difficult as we received bad news the morning of the 26th. Lucas' tumors have grown and spread to his brain. There is nothing more the doctors can do for him at this time but to try and make him as comfortable as possible. They predict he has weeks to live and not many. We are devastated. We had high hopes that he would be one of the few that would make it and live a long and happy life especially after the last MRI results 2 weeks ago showed much improvement. I will never understand cancer, but I do understand the plan of salvation and that brings me much comfort. We have had many family members and friends come to visit in the hospital and it has been difficult to find the time to blog. My thoughts were racing as I laid in bed just trying to imagine what life is going to be like without our sweet Lucas. I know that he will be in good hands. It is not him I am worried about, it is those left behind. I remember being in the hospital with him after he was born and just gazing at his sweet face in awe of how special this little guy was. What would he have to offer this world and what would his mission be to complete here? What would be his hopes and dreams and who's lives would he touch? Little did we know he would touch more lives in 8 months than some people do in a life time. How lucky are we to be parents of such a sweet spirit and how much we have learned from him who has yet to udder a word. As I was rocking him tonight I was begging Heavenly Father to comfort me as the tears wouldn't stop and it was as if His arms literally wrapped themselves around me in a warm embrace. I am so grateful to have a loving God who hears and answers me when I need Him. He is never to busy. Lucas is comfortable and he is on a continuous morphine drip. He doesn't seem to be in pain and our prayers to comfort him have been answered. After much discussion we have decided to bring him home tomorrow on hospice. We feel it would be more comfortable at home and the boys need to spend time with their baby brother to create as many memories with him as possible. We told them the other night and I was very impressed with their reactions. Aaron did a great job of explaining and used a latex glove as a visual aid. He held up his hand using it as our spirit before we came to earth. By placing it in the glove it represented our spirit entering our body. Then he took out his hand and and left the glove behind as his spirit (hand) went up to be with Jesus and Heavenly Father in Heaven and the body (glove) is left here on earth. I'm not sure they will really grasp what's happening until the funeral, but Kaden showed a lot of emotions and cried sincerely for about 45 seconds. Then he quietly asked if we could go downstairs and get a treat. Such is the mind of a 6 year old who loves his sweets. For some reason, chocolate isn't bringing me much comfort. My knowledge of the real fact that we will meet again does and that this life is so short in the grand scheme of things. I know that there are loved one's on the other side anxiously awaiting his arrival although he hasn't been gone for long. He has come and completed his mission and purpose with flying colors and I am so proud and honored to be his mother. We are promised in the scriptures that He will never give us a trial to heavy to bear. Wow. I honestly used to think that I could handle just about anything.....anything except losing a child. Well, I can honestly say we don't know ourselves as well as our Heavenly Father does. Will this be difficult? Of course it will. He never said it would be easy, He only said it ,would be worth it. I don't have all of the answers as to why this is happening to us. And I know that I probably won't understand until the day comes when we are reunited. But, I have faith that all things are for a greater purpose and I'm honored to be the mother of such a sweet little spirit. Aaron is taking time off work and we are going to go home and cherish every last second we have with him. Life isn't fair. Cancer sucks. God is real and life will continue. Lucas, you are loved more than you will ever know. I know many of you are wondering what you can do for our family. All I can think of is pray. This difficult time is not over and the worst is yet to come. Please continue to pray for us to feel peace and that Lucas will remain comfortable. We love you all so much and thank you for being a part of our lives. We couldn't have done this without you.


Tuesday, August 25, 2009

Another MRI?

My grandma is at the hospital with Lucas and she told me today that they want to do an MRI this afternoon at 3:30 of his brain and spine. He just had one not quite 2 weeks ago. However, due to the difficulty of managing his pain, they want to see if there is anything else going on that would be causing him so much discomfort. They will also be doing a procedure in which they move his feeding tube past his stomach and place it directly into his intestines. By it bypassing the stomach he shouldn't be able to throw up which he's been doing a lot of. I feel completely helpless and it breaks my heart not to be able to ease his pain. I'm so scared of what the MRI will show. Last time it was good news but the thing with these tumors is that they are so aggressive, it's unpredictable and anything is possible. I just hope whatever they find can be easily fixed. I know that there's a possibility of them coming to us with the news that he needs to have more of the tumor removed surgically. I'm terrified of this because of the location. It is literally wrapped around some very sensitive nerves in the neck and the possibility of him having permanent paralysis is quite high. I will be going to the hospital in the morning to find out the results and spend some time with him. I recently received a message from the grandpa of Lucas' little friend Travyn who just finished his last cycle of chemo and is done with treatment. He shared with me a story that I found so appropriate and I would like share it with all of you.

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"
God paused for a moment and replied, "Little Soul, do not be sad, for the suffering unlocks the love in peoples hearts." The Little Soul was confused. "What do you mean?" he asked. God replied, " Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The Little Soul began to understand and listen attentively as God continued, " The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity."
Just then the Little Soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the Little Soul excitedly replied, " I am brave; let me go ! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"
God smiled and said, "You are a brave Soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."
God and the Brave Little Soul shared a smile and then embraced. In parting, God said,"Do not forget Little Soul that I will be with you always. Although you have agreed to bear the pain, you will so through My strength, And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."
Thus at that moment the Brave Little Soul was born into the world, and through his suffering and Gods strength, he unlocked the goodness and love in peoples hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and Love reighned. Lives changed forever. It was good. The world was a better place. The Miracle happened. God was pleased.

Thank you all for your continued prayers on behalf of our brave little soul....


Sunday, August 23, 2009

Well, we are still here at the hospital. Two nights ago Lucas slept pretty good through the night only waking up once. Last night he woke up 3 times in a lot of pain. The best way to describe the crying he makes when in this kind of pain is imagine going to a pet store and listening to the birds chirping. It's so high pitched it almost hurts your ears. He received morphine twice last night in addition to the oxycodone, Tylenol, benedryl, zophran, and ativan. This morning the decission was made to try something new to control his pain. Methadone. Yes, this is what Heroin addicts go on to detox. The only reason I'm fine with this is because what we've been doing isn't enough to keep him comfortable. The pain is definitely coming from his neck and the nerves in his shoulder due to the tumor irritating it. That doesn't mean that the tumor is growing, it just means that there are obvious changes going on which are effecting the nerves. This is a pain that he will most likely have for months to come and so we are trying to figure out a plan for pain management that he can safely take at home. I told them I refuse to take him home until his pain is under control. It's just to heartbreaking listening to him scream and yet I'm giving him everything he's been prescribed and it doesn't work for more than an hour. I felt helpless at home and I'm not going to feel that way again if I can help it. Please pray that Lucas can be relieved of his pain while going through chemo. Aaron is here with me today and the boys are at my mom's. I know that they want to keep Lucas here a couple more days to make sure that the methadone works and it takes a couple of days to set in and do it's magic. Thanks for all of your support.


Friday, August 21, 2009

Change in Plans...

Well, I took Lucas to the hospital on Wed morning to have a Lumbar Puncture to check for cancer cells and also to admit him for his next chemo. They found a lot of red blood cells in his spinal fluid and I'm still waiting to hear what that means. Oh and also if there were any cancer cells found I have yet to find out. While he was sedated they cleaned out his ears and discovered he did have an ear infection which would explain why he has been in so much pain this past week. Boy did I feel terrible for not taking him in sooner. He didn't have a fever and they reassured me that being nauseous and irritable is common for what he's been through. So, once he was admitted they started him on an antibiotic and now the infection is gone. The only problem is, he is still crying all the time. And it's not a normal "I'm uncomfortable and don't feel good" kind of cry, it's high pitched and really hard to listen to. He's definitely hurting somewhere. I was supposed to bring him home today and they decided to keep him until they can figure out what's causing the pain. He had a CT Scan this morning which showed no changes since the last one so that is good news. The bad news is we still don't know what is hurting him. I'm really hoping it's chemo related and not something more serious. Once the chemo leaves his body, if he's not calm by then they will probably do an MRI even though he just had one done 9 days ago. So, pray that the pain can be managed until we find out what's going on. Kaden had his first day of school yesterday and it was kind of a difficult day for him. Today was better and he had more fun. I think he was a little unsure because he only knew 1 little boy in his class from last year. My grandma stayed with Lucas the past 2 nights since my mom ended up being sick. Thanks grandma!!! Well, he's awake now and fussy so I will update later.


Monday, August 17, 2009

Bawling, Barfing, and Bald....

Well, the past few days have been a little unpleasant. Don't get me wrong, being home has been wonderful. However, Lucas has been really fussy and has had a hard time keeping anything down. I thought that he would be happy and eat like the last time we came home after his first round of chemo. Well, I'm lucky to get him to drink one feeding a day out of his bottle. The rest I have to put down the feeding tube just to have him puke it up. He's on his medications, however, I just barely got his Zofran for nausea at 10:00 tonight from the home health care pharmacy. There are issues with our insurance needing pre-authorization for this medication and so we have been unsuccessful in getting it from our local pharmacy and I will have to call them in the morning to find out what is going on. I'm worried he is dehydrated because today he slept most of the day and just laid there when he was awake. Hopefully tomorrow will be a better day. Oh and before I forget, Aaron shaved Lucas' head yesterday. We'll post a picture soon. It's been nice being home and having some kind of normalcy again. We had our friends the Huish's come by with some brownies tonight and it was so great to visit with them. They recently lost their 6 year old daughter Sadie to a brain tumor and are such and inspiration to Aaron and I. What a sweet family. I'm so humbled at how supportive they are to us amongst their own trials at this time. I'm so grateful to have friends who love us and are so sincere when they say they want to help in any way. Lucas goes back to Primary Children's on Wednesday to start his next round of chemo. Hopefully we will only be there a few days. And might I add that I absolutely love the staff there. Lucas was scheduled to be admitted on Thursday and I expressed my disappointment in missing out on Kaden first day of school. Well, being the awesome people that they are they moved around the schedule and were able to get us in a day early. This way I can come in and do all of the admit papers and then my mom is planning on coming to the hospital that night so that I can go home and get Kaden ready for school on Thursday morning. Then I will come back to the hospital Thursday night and be with Lucas while he finished his chemo. It will work out to be a win win for everyone.


Wednesday, August 12, 2009

The results are in...

So today has been filled with a lot of waiting. Not knowing the results of the MRI from yesterday and then being unsure of the treatment plan Lucas will be getting has been difficult. But the wait finally ended and we got our answers. First, the MRI clearly shows that the tumor is responding well to chemo. All of the solid tumor growth from the last MRI compared to yesterdays shows they have shrunk considerably. YEAY!!! There are a few pockets of fluid around the spinal area that the doctors aren't really sure about but said they would keep an eye on it. Next, for those of you who aren't familiar with AT/RT, the location of Lucas' tumor is not exactly textbook. Most tumors are found in the brain, spinal cord, or kidneys. Well, Lucas' is somewhat unique in the fact that his is not only in the spinal area but also branches out to the right shoulder/chest area. According to Dr. Brugger's his oncologist, there is a treatment plan for tumors found in the central nervous system (brain, spine) and a different treatment for those found outside of the CNS. And because this tumor is considered to be in both areas, they have to combine the two treatment plans to make sure they get it from all angles. So, basically his treatment will last about 3 months longer than your average AT/RT treatment. So, here's the road map they have laid out for him. We get to go home tomorrow and then be back probably next Thursday (which just happens to be Kaden's first day of school....I know....I'm so bummed) to be admitted. He will then undergo 4 rounds of chemo drugs used in treating the tumors found outside the CNS. The nice thing is that with these being normal doses, he will only be in the hospital for a few days. Then we get to bring him home to recover for a couple of weeks until his counts are back up. We will do this 4 times. Then, he will start his high dose chemo which he will probably do 3 cylcles. He will be in the hospital longer with these rounds because of how harsh they are. He will get a stem cell transplant after each round so that his bone marrow can recover. (Oh that reminds me, he had them collected today and that's a big step. It went well without any major complications. They will be frozen until needed for transplant.) Last he will do radiation therapy for 6 weeks. They want to wait until the very end for this because they want him to grow as much as possible because of the long term side effects that radiation can have on kids this young. So, that's the plan. It's going to be a looooong road but it's all worth it if it can save his life. We are willing to do whatever it takes to fight this battle. Thanks for all of your love and support. I'm so grateful for a day full of good news!!! We have so much to be thankful for.


Monday, August 10, 2009

Sooooo Frustrated!!!

I'm sorry I haven't done an update yet. This whole weekend while home with the boys we had different family members stay at the hospital with Lucas and the game plan was constantly changing. In fact, I still don't know what's going on. All I do know is that he was scheduled to get his stem cell harvest done this morning and because his counts dropped again on Saturday and are not yet where they want them, it's been postponed yet again. He has had a couple of platelet and blood transfusions and he will be getting another one this afternoon. His counts were only at 400 this morning. Then I heard from family that the Dr Brugger's wants him to have 4 more rounds of chemo before starting radiation treatment. The original plan was to do radiation next and then 3 rounds of chemo to end. I'm so confused? They haven't even done an MRI to know if the chemo is even working to shrink the tumor. I guess he is scheduled to have one done tomorrow so hopefully that plan won't change. I'm curious to know but also nervous for the results. We decided to take the boys out of soccer this year and we will be getting a refund thank goodness. I just don't know how much time we will have for extra stuff right now. Getting Kaden to do his homework every night is going to be time consuming enough. They understood and there's always next year. And to all of you who have offered to help with the boys, thank you. You just might be getting a phone call once school starts. Life is going to go from crazy to crazier. But, we have to do whatever it takes to get through this trial. I took the boys to church yesterday and I'm so glad that I was in Sunday School class to hear the lesson. It was on trials, why we have them, and how we deal with them. It was exactly what I needed to hear and the spirit was so strong testifying to me that everything will be just fine. We just need to endure to the end and trust in Him who is all knowing. I continue to grow so much from this experience and I've seen so many blessings that have come from it. I know we aren't even close to the end of this journey but I know that we won't have to walk it alone and that brings me so much comfort. I love you all and appreciate all of your prayers on our behalf. I will update tomorrow once I have more information.


Thursday, August 6, 2009

Home for the Weekend

Well, we are home with Kaden and Jonas this weekend and I must say that it feels soooooo nice to be out of that hospital room. The only thing I love about it is that Lucas is there. It's almost been 3 weeks since he was admitted and I can't wait to see his excitement once we are allowed to bring him home. His counts came up a little and went from 0 to 200. He needs to be around 10,000 for them to do the stem cell harvest. We are hoping it will happen next week. He had yogurt today for the first time and LOVED it!!! He still doesn't want anything to do with the hospital formula so he continues to get his nutrition through a feeding tube. The doctors think the yogurt will also help the bacterial infection he's still trying to fight off. He received a bath today and was pretty happy for the most part. He practiced sitting up a lot as I kept him distracted with toys. He's at the age where he enjoys just smacking his hand or other toys on stuff just to make noise. It's amazing how something so simple can entertain him for hours. Tonight we spent some time cleaning and surprisingly the boys wanted to help so badly. I let them windex the mirrors and clean them. Kaden had the opportunity to vacuum for the first time. It was challenging because our vacuum is heavy for him, but he managed to do a pretty good job. (With the exception of accidentally sucking a Bakugan Ball up the tube and it got stuck. Aaron was able to get it out thank goodness!!) We miss our boys when we are away from them and it's always good to spend time with them. We get to go to our friend Austin's Birthday Party tomorrow. He's turning 8 and the boys are very excited. It will be fun.


Tuesday, August 4, 2009

Still Waiting....

So, the plan was for Lucas' counts to be high enough for him to have his stem cell harvest sometime the beginning of this week. Well, his counts are still at .1 which means we will be in this hospital room for at least another week. He contracted a bacterial infection that he is currently on antibiotics for and they think that's the reason his counts are not soaring. So, we wait. Lucas has been doing well as long as mommy is holding him. He seems to be fussy when I lay him down so naturally I've been holding him a lot. He is getting so big. Yesterday for the first time I noticed that he can now sit up on his own. This is great progress considering how weak his neck muscles were after surgery. He was like a new born again with a floppy head. He's really doing well and the physical therapist is very happy with his progress. I'm so proud of him for how well he's doing. I'm starting to get a little nervous about Kaden starting school on the 20th. He will need a lot of our attention with school work, activities, etc. and I don't want to downplay the importance of being there for him. Also, we registered both he and Jonas in soccer before all of this stuff happened and I'm on the fence on whether or not we should keep them in? Practices and games start soon and they are held during the week at 6:00 pm which basically means Aaron will miss everything and I don't know how much I want Lucas out and around other people. The boys have been looking forward to it but under the current circumstances they might have to wait until next year. Why can't they just do them on Saturdays like last year? It would be so much easier. Oh well. I can't really complain about stuff as frivolous as that when I feel so blessed that Lucas is handling everything so well. We are so grateful that he hasn't had any serious complications yet. (Quick, someone get me some wood to knock on.) Well, I will send an update when changes start to happen. As for now we are just hanging out until his poopies get back to normal and his counts start to rise. Thanks for taking the time to read our updates. It means so much to us that you all care so much!!

Love, Shannon

P.S. Aaron, you are the greatest husband ever. Thanks for everything you do to make my life easier. You are so thoughtful and I love you!!