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

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

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

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.

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!!!

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.

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!!