Wednesday, July 29, 2009

HAPPY ANNIVERSARY!!!

Today Aaron and I celebrate 9 years of marriage. And believe it or not we still like each other. Lucas is having a great day. The last medication has cleared his system and now it's just a waiting game to see when his white blood cell counts that fight infection (ANC counts) are high enough to start his stem cell harvest. They will filter his blood and take out what they need and replace what's left back into his body. They will freeze these cells until he starts his last 3 cycles of chemo. (The last 3 are considered are high doses of other medications that will completely wipe out the white blood cells in his bone marrow.) They will then introduce the harvested cells to help the bone marrow build up again. Basically he's giving himself a bone marrow transplant. It's really amazing what they can do now with treatments. He's been really happy today and the nurses keep saying how great he looks and how well he's doing. It makes me happy that he's not in any pain. We keep working with his arm to get movement restored. It will take time but each day there's a little more improvement. I'm so grateful for all that I've learned through this experience. It's taught our family what we are capable of and that the Lord really doesn't give us anything we can't handle. I once thought when I would hear stories about other children who were sick that I could never have the strength to get though something like that. Might I suggest never saying that to yourself because here we are dealing with it. I guess I should have knocked on wood a little bit harder. Well, thanks again to all of you who have supported us. It really does help to ease the burden. I love Lucas so much and this morning we rocked in the rocking chair for over an hour listening to lullabies. I cherish every moment I have with him. I feel so bad for Aaron because lately by the time he gets to the hospital after work Lucas is asleep for the night. Hopefully he'll be able to enjoy him more awake tonight. I love you baby and happy anniversary!!! I guess it's redbox and take out tonight. Thanks for our boys and for being the most amazing husband, father, and best friend!!!

Shannon

Monday, July 27, 2009

View from Primary Children's Hospital

I didn't get to spend a lot of time with Lucas tonight because he was pretty sleepy by the time I got to the hospital after work. I got to see him smile though and that makes my day. The Chemo made him sick today. I will spare you the details, but he wasn't feeling well this afternoon. He has done pretty well tonight though. Thanks for the continued prayers and support.

Tonight I decided to take a few pictures of the view from the hospital. I went to the top of the parking garage and took a few pictures. I am posting one of them. I have to look for the little opportunities to keep my sanity, and experimenting with my camera is something that allows me to take a break.

-Aaron

Sunday, July 26, 2009

On a Sunday afternoon


I am up at the hospital with Lucas today. I was really excited to spend time with him because I hadn't seen him since Thursday morning. We had a great weekend with the boys. We did a lot of fun things, it's like we are trying to make up for the rest of the week in a couple of days.

Tony, my brother-in-law, stopped by and brought me lunch, thanks Tony! It was good to chat for a while and it was good to have you here. I think Lucas liked seeing you.

Today Lucas is starting the drug Cisplatin. In the words of the nurse, "this is nasty stuff." This round of Chemo Lucas is getting full strength doses of the drugs, where he was only getting about 85% doses in the first round. Thankfully Lucas seems to be sleeping a lot from the drugs they are giving him, I hope that he can be comfortable through the next 24 hours. The nurse, Joan, said that there is a 100% chance of Lucas throwing up from this drug so they are giving him other drugs to help with the nausea. A question that I have been asked a few times lately is, "When will they know if the treatment is working?" The answer to that, I believe, is the next time they do an MRI. I think they will do the MRI either after this round of Chemo, or after the six weeks of radiation, which is scheduled to happen after this second round of Chemo.

I was still able to get Lucas to smile this morning and that always brings me comfort. So all in all he is doing well.

-Aaron

Friday, July 24, 2009

Hangin' out with Kaden and Jonas

So on the weekends it is our opportunity to spend time with Kaden and Jonas. Shannon was at the hospital today so I took the boys to Thanksgiving Point, to the Dinosaur Meusem and Farm Country. We had a good time together, sometimes I think our boys are pretty spoiled, but they have been good sports through all of the craziness that has been going on. Thanks to all who have been helping watch them during the week. I don't know what we would do without you.

After Thanksgiving Point we went to McDonald's so the boys could play to their hearts content. I always have to tell them they can't play until they have eaten their food or they just play.

After Micky-D's we went to the Home Depot, so i could buy a two dollar item, and the boys drove the racecar basket around the store and we pretended that we were going to run into everything in our way, narrowly missing it at the last second. Being a parent can be challenging at times, and at others, so rewarding. We are so grateful for all our boys and love them so much.

Tonight Shannon will be home and we are going to an activity put on by the city. I think we are going to watch an outdoor movie on a big screen. It should be fun.

Digging up Bones
video

I tell Jonas "No" at the beginning of this video because he was flinging sand over the wall with the brush :).

Thursday, July 23, 2009

Ugh, I am soooo tired...

The last couple of nights have been rough even with the luxury of an air mattress. The nurses are coming in every 2 hours and then Lucas wakes up on top of that. It's definitely nicer being at home in our own beds. So, one of the chemo meds that Lucas received Tuesday night is called Methotrexate. It's highly toxic and everyone that changes his diapers is required to wear gloves. It's not good to have it on your skin. So anyway, Lucas has been on a peeing rampage lately whenever his diaper gets changed. He's gone all over a few of his p.j.'s and blankets and because the stuff is bright florescent yellow,(seriously...it looks radio active) anything that comes in contact with it has to go through the wash twice in hot water. You wouldn't want to wash these items with other clothes or they would become contaminated. It's crazy how careful they are with a baby's urine. I can't believe that we are pumping his body full of this toxic stuff. But I guess it's the lesser of the two evils. Yes chemo is crappy, but cancer is worse. He seems to be doing really well this time around. So far no sign of a rash. They started him on benedryl 24 hours before they started the chemo just in case he breaks out. Well, I am really tired need to turn in for the night. Sweet dreams everyone...

Shannon

Tuesday, July 21, 2009

At the Hospital Again


This morning we came to Primary's to have Lucas' hearing checked. Both his kidney function test yesterday and his hearing test today went smoothly and everything is normal. He was admitted to the ICS unit after coming out of anesthesia and we are just trying to make it comfortable for him. He hasn't even started his first chemo med yet and already he's being a stubborn eater. It's either that he doesn't like the formula here at the hospital or that he's away from home. It's probably both. I have a feeling the NG tube will be back in soon. Well, not much else to report. Hopefully he won't break out in a horrible rash this time around. Kaden and Jonas are staying with my parents and went to a water slide park today and had a blast. I got to hear all about it over the phone. I can't believe how fast they are growing up. Work has begun on our basement and we are so grateful for the individuals who are donating their time and skills to make it happen. Thank you all so much!!!

Shannon

Sunday, July 19, 2009

Well, Lucas managed to yank out his feeding tube yesterday. I didn't bother to put it back in because he is eating so well. I hope the nurses don't get mad. I just figured the poor little guy should have a break from it since I'm sure they will put it back in on Tuesday. We had a great weekend just chillin with the boys. Kaden and Jonas went to Cookie Cutters and got their mops cut yesterday and they look so good. Sure it's free to have daddy cut it, but it was more for the experience. They loved it. They start soccer next month and it will be interesting as we try to juggle time with Lucas and coming to games and practices. Also, Kaden starts first grade. "YEAY FOR ALL DAY SCHOOL!!!" Oh, did I type that out loud? It's going to be a challenge. We will just have to make it work. We want to be there for them equally as much as we are with Lucas. It has been great having him home but I must say I'm quite anxious to get him started on his next round of chemo. Dr. Bruggers said that they will most likely do another scan after this round to see if the tumor is responding to treatment. I know that he hasn't been in any pain since he's been home. He has been so happy and normal, (with the exception of his gimpy right arm.) I really hope that he can regain strength because it's going to be difficult for him to learn how to sit up, crawl, even roll over without the use of one of his arms. I know that kids are resilient and that they find a way to compensate. It will just take him a little longer to learn these important developmental milestones. I've been doing a lot of research on the Internet regarding the clinical trial treatment he is on and I must say that my head is spinning. There is so much information (bad and good) and it's overwhelming. Oh what I wouldn't do for a crystal ball right now. I know, I know, then I wouldn't have to exercise faith. It's just so hard not knowing what the end result will be. Will he be a cancer free survivor and beat the odds? I really hope so. And unless the doctors tell us there is nothing more they can do, we believe that he will fight these battles and win the war. I have to take him to Primary's in the morning to have a kidney function test done. Then he will have a hearing test on Tuesday before they admit him for round 2 of chemo. And yes, the air mattress is definitely coming with us this time. (Thanks mom and dad!!!) Love you all and thanks for your continued prayers and support.

Shannon

Wednesday, July 15, 2009

Good to be home!!!

Lucas was released from the hospital yesterday afternoon and it has been so nice but very overwhelming. A rep from our home health care co. came by last night and went through a number of things with me and anxiety doesn't even come close to how I'm feeling right now. He is on so many medications which need to be given every 2,4,6or 12 hours. There's so much to remember. In the hospital the nurses would come in and say, "O.K. it's time for this med or this shot or this cream," and I would give it to him. Now, it's all on me to remember every measurement, frequency, if it's refrigerated to let it get to room temp, etc. Needless to say I didn't sleep well last night. I need to teach Aaron how to administer some of this stuff so that I can have some help. But I must say, Lucas couldn't be happier. He must feel relieved to be out of that hospital room. I know I am. Kaden and Jonas spent the night at my parents the last few nights and came home early this morning. They were so excited to see Lucas but seemed a little nervous looking at all the tubes hanging out of him. One cool thing is that since he's been home, he has guzzled his formula down. Hopefully I won't have to tube feed him very often. His arm seems so be moving a little more every day which is a good sign. He also doesn't seem to be in any pain. Dr. Brugger's said that it's an indication that the tumor is shrinking. He has to go have some tests done to check his kidneys and hearing between each round of chemo. It can cause side effects and so they monitor him to see if they need to lower the dosage of chemo for next time. I hope everything comes back normal. We also sent out the paperwork to get genetic testing done. They will test Lucas' blood to see if he has a mutation. If he does, then that means that either Aaron or I is the carrier and all of our kids will have a 50% chance of having AT/RT. If Lucas doesn't have the mutation then it was random and the chances of any of our other children getting it is slim to none. We would like to find out because if we are carriers, then Kaden and Jonas could get tested and we would be more aware of symptoms and get them scanned. Lucas is scheduled to start his next round of chemo Tuesday of next week. Well, I better get some things done around the house while I'm home. And maybe take a nap to catch up from last night.

Monday, July 13, 2009

Yeay, we get to go home!!!

Tomorrow is a big day!! Lucas' counts are high enough that he gets to come home. I will be talking to the oncologist tomorrow to discuss when to start him on his second round of chemo. Most likely it will be sometime this weekend or the beginning of next week. He is doing so well. His rash is gone and he received another blood transfusion today and had no negative reactions. Due to the fact that he had been having fevers they had him on 3 different antibiotics. They took him off 2 of them today and wanted him to stay one more night just to make sure there are no surprises. We borrowed my parents air mattress and slept on it last night. Why we didn't think of this sooner I don't know. But it is so much more comfortable than the little chair/bed they had us in before. Today while I was kissing Lucas on the head, I pulled away only to have hairs stuck to my lip gloss. His hair is totally falling out. I ran my fingers through it and it reminded me of when a dog sheds. I'm so glad we have taken a lot of pictures of him with his hair. And soon we will get to take pictures of him bald. He was so happy today. He was squealing and blowing spit bubbles and the whole works. I love to see him happy especially under the current circumstances. It's hard to be sad when he's so happy. He lifts my spirits and makes me laugh which is exactly what I need. His aunt Marnie was able to take him out on a walk around the hospital yesterday which he absolutely loved. Aaron's mom and dad were able to come stay with him this weekend and my brother Jake and his girlfriend Michelle were with him on Saturday. I'm so thankful that everyone is so willing to come and stay with Lucas so that he is never alone. It gives Aaron and I the opportunity to come home and be with Kaden and Jonas. I know they are excited to see their baby brother tomorrow and I can hardly wait to see how Lucas reacts to being home. He's been stuck here for over 2 weeks. It will be good and hopefully he will eat better at home. I'm hopeful that this regimen of chemo and radiation will work to shrink his tumor. There is another little boy (Travyn) who is 10 months old down the hall who has AT/RT also and is doing great!!! He has gone through radiation and just finished his 3rd round of chemo. His mom Whitney is so adorable and sweet. We have been chatting quite a bit about our experiences and they are very similar. This tumor is so rare that only 20-30 are diagnosed each year in the U.S. and so to have another case right here in Utah is so unusual. We are lucky to have each other for support because we can actually say that we know how the other feels. Travyn is so cute and has made leaps and bounds and his progress gives me so much hope. I love this hospital and the staff are incredible. Life is good!!!

Saturday, July 11, 2009

There are no words....

Today's fundraiser was such a success. It was nothing short of AWESOME!!! There were so many things donated and the baked goods were to die for. My parents were able to bring their big bouncy house for the kids and my aunt and uncle arranged for a professional snow cone machine to be there which everyone (especially the kids) loved!!! It was seriously the funnest yard sale I've ever been to. During the clean up Aaron made the comment that it looked like a carnival had been to the Proctor's front yard. (Roger and Kelli, we love you!!) We are overwhelmed with every one's generosity. I personally want to thank all of those who participated whether it was with your time or in donations. I'm so glad that Aaron and I were there to see it all in action. It was so humbling and we were able to meet many new friends. I was having a difficult time holding back the tears. We feel so loved and appreciate all the prayers and support on our behalf. Lucas has had a fever for the past 2 days and they have him on antibiotics and Tylenol. The biopsy site on his leg has become irritated and red and they did a blood draw yesterday to see where the infection is coming from. It's difficult to get all the information since I'm not there this weekend. His counts are now up to a whopping .7 though. I did talk to my mother in law who is with him tonight and she said that he didn't feel to warm so his fever must be under control. She said she would call if things took a turn. She hasn't called back and so no news is good news. Aaron will be going to the hospital tomorrow to stay with Lucas so I will have him do an update then. Much love and appreciation....Shannon.

Thursday, July 9, 2009

Still happy through it all

Lucas has no immune system. His white blood cell counts as of this morning are at .1 which means he is extremely susceptible to infection. Considering he shouldn't be feeling well at all he is still happy. Babies are amazing. They are so resilient and bounce back so quickly. Something cool happened today. He was moving his right arm ever so slightly at the elbow which is an improvement. He hasn't been able to move it in over a month. We are hopeful that with time he will be able to regain most of the movement in his right arm. All of this week the nurses have been showing me how to take care of his medical needs at home such as his feeding tube, central line, shots, etc. It's been good for me to learn these things hands on. I am a visual learner and although I appreciate all of the handouts I have to read, I will feel more comfortable if I leave with some experience. I love the staff here. The nurses are amazing and they all adore Lucas. Aaron and I came home to be with the boys this weekend and I was so excited to see them. I miss them so much and look forward to having some fun with them. It's good for us to take our minds off of the hospital routine once in awhile. Well, Lucas will be in the hospital until his counts reach at least 500. I have a hunch we will be there next week as well. Unfortunately there is no set schedule with chemo recovery. Every child responds differently and they can't start the next round until his counts are up to around 1500. It would be nice to have him home but I understand that it's safer for him at the hospital right now. Until then we are making the best of it!!

Tuesday, July 7, 2009

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.

Sunday, July 5, 2009

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

Friday, July 3, 2009

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!

Thursday, July 2, 2009

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.