Oh Man...Not the Feeding Tube!!!

Yes, you heard it right folks. Lucas inherited many things from his mother which I am proud of. Unfortunately, my stubbornness has not been benefiting him here in the hospital. He refuses to eat and so therefore had to have a feeding tube inserted yesterday. Then, if that wasn't bad enough, he ripped it out while rubbing his nose this morning. Guess who got to put it back in? That's right, nurse Shannon to the rescue. They said I need to know how to do it in case he yanks it out at home. It was not pleasant. I'm supposed to be there to comfort him. The nurses are supposed to be the bad guys. But I must say, he did sleep pretty good last night. He can now received his oral meds through the feeding tube so they don't have to wake him up. His rash seems to be getting better. We still haven't heard from the lab as to what caused it. Dr. Brugger's in oncology thinks it might have been from one of the chemo drugs called Methotrexate. She says he has tolerated his first round of chemo surprisingly well. Let's just hope it stays that way. I know that each round you receive gets harder and harder. It's just not fair. Little babies aren't supposed to be stuck in a hospital crib with tubes and wires hanging all over them while drinking formula from a large syringe. He should be sitting up and playing with toys, rolling around with his brothers, and experimenting with all new fun food tastes. But for whatever reason, this is his earthly experience at this time and we are just trying to make the best of it. It has been such a great couple of days. I have made some new friends who have given me so much hope and are full of positivity. I know that Heavenly Father has led me to these angels on earth to help me get through this most difficult time. It's so wonderful to have support and to talk to other mothers who have had similar experiences. I am also so overwhelmed with the generosity of everyone. You all hold a special place in our hearts and we will be forever grateful.

Blogging to Baby Einstein

First of all I would like to start by saying thank you to all of you who have left thoughtful and loving comments, prepared dinner for us, sent thoughtful cards, watched the boys, offered to watch the boys, and many other kind gestures. There are too many to name, but you know who you are, and we know who you are...and we love you.

So Shannon asked me to do the blogging yesterday and we didn't get home until after midnight. We took the boys to Thanksgiving Point to see the fireworks there with some good friends. It has been a fourth of July tradition for the last few years. We missed having baby Lucas with us but it was good to spend time with Kaden and Jonas. I didn't really see them all last work week.

Lucas is doing pretty well, I am up at the hospital tonight with him and he is pretty content. When I got here he was pretty happy and even gave a few smiles. I held him for a while and he fell asleep on my chest in the rocking-chair. It was such a comforting and wonderful thing to having him resting peacefully in my arms. Too often it is easy to take the little things in life for granted.

Lucas is still in the Chemo process and his white blood cell counts are fairly low. He has a pretty bad rash right now and the Dermatologists are trying to determine the cause. Yesterday I had to give permission to the Dermatologist to do a skin biopsy. They gave him local anesthetic and took a piece of skin out of his upper thigh about half the size of a pencil eraser and then stitched it up. The poor little guy is going through so much but he seems to be taking it in stride. He is such a good baby even with all that he is dealing with.

Those are the big things this weekend that come to mind. Thank you all for your support and prayers. May God bless you for your kindness and thoughtfulness.

-Aaron

Oooops, let's try this again....

Well, last night we decided to come home and spend the weekend with Kaden and Jonas. Marnie stayed at the hospital with Lucas. My mom is staying with him tonight. What a blessing it is to have such a support system. Anyway, we took the boys to see Ice Age 3 today and it was cute. The boys loved it of course because it had dinosaurs in it. We also went to lunch at Red Robin and then ran a few more errands. It was nice to just spend time as a family again. But there was a void there without Lucas. I would look back and see his car seat just empty. Even though it was a fun day, my mind wasn't far from the hospital. Aaron could tell something was bothering me and I kept reassuring him that everything was fine, I just missed our little guy. We bought some kid friendly fire works for tomorrow night and can't wait to take them to see the show at Thanksgiving Point. It's a tradition we do every year and the boys are really excited. I did let them crack into their pop it's tonight. They loved it!!! Well, it's past 11:00 pm and so I should probably retire for the night. Just a note to all of you who have sent us cards recently with words of comfort we thank you. One day at a time. I want to cherish every moment I have with those that I love. Happy 4th everyone...

-Shannon

Fun day with the boys!

Yeay, he's happy!!!

It was a late night and so I decided to go to bed instead of writing a post for yesterday. So, I will now do an update on yesterdays events. Lucas woke up happy and content which was a far cry from the day before. He's been eating more often which tells me he's not too terribly nauseous. The only bad thing was that I noticed a really bad rash all over his back. It almost looked like a heat rash but it didn't seem to be bothering him. The oncologist said that it could be caused by one of the meds he is receiving for chemo and that they will keep an eye on it. He kept getting in trouble with the nurses because even though his right arm doesn't work, he's making up for it with his legs. He continues to kick off the monitor they tape on his toe. This morning they outsmarted him and reinforced the cord with tape around his foot to hold it in place. He wasn't to happy about that. Last night Aaron came to the hospital after work and as we were contemplating reheating leftovers for dinner, we decided to go out on a mini date and enjoyed some Thai food. It was nice to escape the hospital environment for a bit. The nurses take such good care of him I knew he would be in good hands. He didn't sleep well last night and seemed to be in a lot of pain. I wish they would just give him morphine on a schedule instead of waiting for him to exhibit signs of discomfort. One of the gals on the neurology team asked if I would be up to him trying a drug specifically designed to control nerve pain since the cancer is mostly affecting the nerves. They feel it would be just as if not more effective as the morphine. I told them if they recommended it then let's give it a shot. He will start on it this afternoon and it only needs to be administered twice a day. I hope it gives him more relief. I can't remember what it's called. I can't remember what any of these drugs are called. They are all so hard to pronounce let alone remember. Well, I will be going home tonight to spend the holiday weekend with Aaron and the boys. Lucas will have to stay in the hospital next week as well until his white blood cell counts come back up. Until then, my mom and Aaron's sister Marnie have offered to do rotations at the hospital with me so that I don't go bonkers. I'm so thankful for all of the offers to watch the boys, but I miss them and need to spend some time with them so they don't think I've abandoned them.

Lucas received two more drugs today as part of his chemo treatment and his body seems to be tolerating it well. However, his cute personality is something of the past. The treatment causes him to be extremely tired and fussy. The lab work tells us he's fine, but his eyes tell a much different story. Although he is taking morphine for the pain caused by the tumor, he is still quite fussy. I noticed today as I was stroking his head that his hair was getting greasy and sweaty and he was a little bit stinky from laying in bed for numerous days. One of the techs helped me give him a bath this afternoon but because of his central line we couldn't immerse him in water. So, we had to lay him in a tub basin and just try to sponge bathe him. He was so uncomfortable and I could tell he was in pain. He likes to turn his head to the left and curves his body to avoid discomfort from the cancer. We had to straighten him out to clean him good and he wasn't happy. By the time we were done he calmed down and fell asleep. He smelled so good!!! He also hasn't had an appetite since starting the chemo which I guess is normal. It's so crazy to see my little piggy not wanting anything to eat. I'm lucky to get him to drink a few oz a day. They are pumping him full of vitamins and fluids so that's good. My mom did our laundry today and I was thinking about how I miss our normal life and that I wish I could just go back to the way things were. My day would sound like this, "Hey boys, do you want to go to the park or the dinasour museum today? Hmmmmm, what should I make for dinner tonight? Let's see....should we watch Hereos tonight or the Office?" Seiously? These were the most stressfull things in my life? I guess Aaron and I were just to comfortable and we needed this trial to mix things up a bit. It isn't always fair, but it's necessary in order to learn and become stronger. I'm grateful for all of the blessings that have come from this challenge in our life. We are all capable of so much more than we can even comprehend. Once it is happening to you, you find this inner strength that gets you through each day. It also helps to have so much support. Our friends, family, and in some cases complete strangers have helped us in so many ways. There are no words to describe our gratitude for everything. It really eases the stress and worry we would be feeling otherwise. I truly believe that Heavenly Father uses us to answer each others prayers. We have had some really neat experiences going through this that I am so grateful for. Thank you all for caring about our family and helping us get through this difficult time. I'm a big believer that what goes around comes around and I pray that all of you receive multiple blessings for your charitable acts of kindness and love.

Second day of chemo...

Last night was a pretty rough night. Why can't hospital beds be a little more comfortable considering how long we are there? Lucas was up a lot and the nurses figured out that morphine is the best pain med for his little body. He was a little fussy today and it's so hard to know if it's from pain, hunger, nausea, or if he's just tired and fighting it. All of the nurses just love him. He's only 7 months old and already a flirt. He seems to find comfort in his 3 B's. Binky, Bear, and Baby Einstein DVD's. In fact he has started a new habit of throwing his bear over his face when the doctors or nurses come in. Maybe he thinks if he can't see them, they aren't there? I don't know but it cracks us up. His aunt Marnie was kind enough to stay the night with him tonight so that Aaron and I could come home and spend some time with Kaden and Jonas. They have been shipped around from house to house and Jonas asked me the other day if I could babysit him at our house. It about broke my heart. It's so hard to find a balance when all I can think about is the well being of our baby. Kaden is having the time of his life though. It's a party everyday! Aaron just spoke to Marnie and she said Lucas is doing well. Whew....I guess we can get some good sleep tonight. I just wanted to shout out to all of those who have helped us with meals, taking the boys, messages of love, etc. And especially to all of those who have prayed for our family. Everyone tells us how strong we are and that we are handling this so well. The only reason we aren't a total mess is because we feel strengthened by all of your support and prayers. We love all of you and wouldn't be able to do this without you. It's going to be a long road but I know that we will learn so much from this trial. So much good has already come from it. We are strong and have faith that no matter what happens, everything is going to be O.K.

Shannon