Saturday, March 31, 2012
After this phase is over he'll start Intermin Maintenance Phase the first week of May. That phase has me all stressed out. He'll be hospitalized over night Monday through Thursday or Friday every other week for two months. I've finally accepted the fact that he can't come to either of my siblings weddings. This. breaks. my. heart. I had a good cry over it a couple weeks ago. I so badly wanted all four of us to be there. All of his cousins and aunts and uncles will be there. This means Ryan can't go to either wedding too. Both weddings are in Utah. One is June 2nd, and the other is June 15th. The plan was for me to take the boys out for three weeks and just have a grand old time and Ryan would meet us for the weddings. It was going to be so fun. I hate that he can't come and that I will likely be making two trips out instead of one. Ughhh!!!! Okay, pity party over. Take a look at these two happy couples. They make me smile :)
My Brother Tom and his beautiful bride Carrie.
I'm not sure how to coordinate all of Lincoln's hospitalizations. Someone will have to be with Lincoln in the hospital at all times and someone will have to be with Sawyer at all times. My parents can't come out and help because they'll be busy with wedding stuff, and I think my mother in law will come out for the last hospitalization and then stay and help us pack because we're moving at the end of June, but that leaves three hospitalizations with no great plan. I think I'll end up bouncing Sawyer around the neighborhood every day and hope he doesn't catch anything. I'm so grateful for such awesome friends who I know will be happy to help.
Overall though I can't complain. It hasn't been all that bad lately. Sometimes I almost forget that he's sick because most days he acts pretty normal. I forget that it's really serious. Then other times I lay awake and night and I let my mind go to places I shouldn't and I am absolutely terrified. I imagine how I would feel if a doctor ever told me he had relapsed. If he did he'd have to start his treatment over again from the beginning and his chances of surviving go way down. The thought is more than I can bare.
Also, I really miss hanging out with my girlfriends and their kids. I miss having friends over.
On a positive note, it's conference weekend! Every six months we get to be uplifted and encouraged through the church's world wide general conference. I love to listen to our prophet and apostles speak as they give us guidance and council from the Lord. I'm so grateful for the gospel and church in my life. It gives me so much peace and hope and because of it I know that no matter what happens in my life everything will be okay. If you're unfamiliar with the church of Jesus Christ of Latter day Saints, you should look into it! It will change your life and the knowledge you'll receive from it will carry you through any trial and any hardship. Come listen to a prophet's voice and enjoy the awesomeness that is conference.
Happy Spring :)
Saturday, March 24, 2012
Also today during the same yoga class I saw a couple gently holding hands as they lay side-by-side during shavasana (final relaxation). I'd never seen that before. It was lovely.
Great yoga class today. I love my job. :)
Thursday, March 22, 2012
How things are going generally Things are going pretty well this phase and I’m so grateful. He’s been chewing his oral pills with out too much of a fight and the whole keeping him from eating before and after he takes them for a couple hours hasn’t been as hard as I imagined. And he doesn’t seem to be too effected by any of his treatments. So overall I’m really grateful.
Biggest challenge right now One of my biggest challenges right now is knowing how careful I have to be…and then actually being that careful. For example, Lincoln and Sawyer love the park. Whenever we go outside they want to go there. When we take them we Clorox the swings and let them swing, but then they always wants to go down the slide and play on the equipment. It’s a lot harder to sanitize an entire playground. I know we should be as careful as possible, but it’s just so hard! And what are the chances that he’ll really get sick from playing on a playground? But is it worth the risk? It’s like that with everything. When I need babysitters for Sawyer when I take Lincoln in for treatments we feel like we shouldn’t have Saywer around other kids so we’ve been having my couple of friends with out kids watch him. But what are the chances really that Sawyer would get sick from my friends kids who aren’t presenting symptoms of sickness at the time and then Sawyer get Lincoln sick? I feel like the likelihood is next to nothing, but I also don’t want to have regrets if Lincoln did get sick, and Ryan definitely feels like we shouldn’t take any chances. It’s so annoying!! And I miss just hanging out with my friends and their kids. Ryan and I both feel like in a about a month when flu season is completely over we can relax a little bit more which will be so nice.
Goodbye Dr. Shaver I took Sawyer in for his 18 month appointment to the boys pediatrician Dr. Shaver yesterday. It was the first time I’d seen him since Lincoln was diagnosed and probably the last time I’ll see him since we’re moving in July. I was sad to say goodbye and hope I can find a pediatrician like him in NC. He is so great. I’m so grateful he was intuned enough and careful enough in his examining of Lincoln to decide to order a blood test for him back on January 16th, because really there were no obvious signs that anything was wrong with him. He was just a little pale with a history of slightly abnormal feeling lymph nodes. But between Ryan bringing up the lymph nodes and Dr. Shaver deciding he was pale with lots of bruises, they were able to figure out something was wrong before Lincoln had the chance to get really, really sick. I’ll always be grateful for Dr. Shaver in our lives. On another note, Sawyer is doing great! A little on the tall side and average weight and head size. Dr. Shaver asked if he could say at least five words which I guess is about average for 18 month olds. Sawyer says at least 200 words. Probably more. He’s a talker that’s for sure.
Sleeping on the couch Ever since Lincoln got sick he’s slept on the couch only. As a result he’s basically dropped him daily nap. This is sad for me because now I don’t really get a break all day. Then at night we have to get the whole house dark and quite for him to go to sleep and I have to “snuggle him” and scratch his back until he falls asleep. This usually takes between 15 minutes and an hour. By the time that’s all over with it’s usually ten pm and I’m exhausted and go to be myself. I try and just enjoy the time with him because I know he’ll be all grown up before I know it and I’ll wish I could snuggle him for one more hour, but I also really miss my time from 1-3 and 8-10. I miss my TV shows. I miss hanging out with Ryan after the boys go to bed. Sigh. We just don’t have the heart to make him cry it out in his crib. Next phase he’s scheduled to be the hospital for 4 days every other week for two months so what’s the point of making him cry it out in his crib only to mess him all up again.
Funny quote The other day we were outside and the wind was blowing and Lincoln put his hands on his bald little head and said “Da wind is blowing all my hair!” It made me laugh.
Now some pictures. A lot of people have asked me what it looks like when Lincoln’s port is accessed. Here’s a pic. In another week he has to stay accessed for four days in a row twice again. It makes me nervous. See all that tape? He hates getting it removed. I don’t blame him.
If you’re interested in Sawyer’s weekend with Hannah while I was on my girl’s trip you can check it out on my sisters blog here
Wednesday, March 14, 2012
I was planning on going to Utah to reunite with a bunch of my girlfriends from Virginia, but then Lincoln got sick and I cancelled my tickets. My original trip was for 12 days. I really debated going but in the end I decided to do it and I’m so glad I did. Instead of 12 days I went for 5, two of which were travel days. I was so nervous about leaving Lincoln, not knowing how he’d react to Phase two of his treatments. But I knew he’d be in good hands. My mom and Ryan stayed here with Lincoln and I took Sawyer. My dad flew back to Pittsburgh from Utah while I was gone and then both my parents left and drove their car home back to Utah and it was just Ryan and Lincoln over the weekend. He did really well while I was gone and that made it so much easier to be gone and I was able to really enjoy myself. I got in to Utah on Wednesday and hung out with my siblings and their finances…yes plural…my brother and sister are engaged to be married this June! Then Thursday I got together with Stephanie during the day and then with my best high school/college friends. I love these ladies so much and am bummed my time with them was so short.
Then Thursday night at I met my Virginia friends up at Danielle’s condo in Snowbird to start the weekend of fun. We had no idea her condo was so nice! It was such a fun surprise. The place was sweet. Grand piano, elevator, indoor hut-tub….we kind of want to go there every year.
We went down to the valley both days for shopping and eating. Poor Desiree from Florida had never been to Café Rio so we made sure to go there! Always a treat.We saw a the chick flick “This means War”. It was entertaining, but not my fave.Maere, Trac and Danielle visited their old sorority down at the U.We shopped. We got pedicures. My sweet friends treated me. I love them.
We relaxed in the hot tub and stayed up late talking in bed.We ate some more…and all ordered the same thing :)It was so much fun. We laughed, we cried, we vented, we sympathized, we bonded. Just what I needed. We also really missed all our Charlottesville friends who weren’t there. We feel bad we didn’t make it more known to everyone. So next year we’ll be sure to invite everyone and hopefully more of our fabulous friends can come. It’s amazing how much a little girlfriend time can do for an overtired, over stressed mama. Thanks so much Danielle for an awesome time at your condo. Sunday I spent with my family and Monday Sawyer and I flew home. A big thanks to my super pregnant, super awesome sister Ali who watched Sawyer for me all weekend. Love you Ali, it was so great to see you!
PS. Sawyer was a champ on the airplane both travel days. We had two layovers and 12 hour travel days both times. Not ideal, but worth the trip.
We’re ten days into phase two of Lincoln’s treatment. This phase is 57 days. Last week all of this arrived at my door. It was overwhelming to say the least, but I don’t really have to deal with it which is nice. Eric is our home care nurse, and he takes care of it all. He’s the one who does the finger pokes, and this phase we’re seeing him a lot because he’s been giving Lincoln chemotherapy three days a week at the house. On Monday’s we go in to the hospital and Lincoln’s port is accessed and he’s given chemo and has spinal taps, and then Tuesday through Thursday Eric comes and gives the meds at the house, and then removes the tubes and needles from Lincoln’s port on Thursdays. Eric’s really great. It’s been nice having him come and not do finger pokes so Lincoln can have better experiences with him.
My parents left, just me and the boys. In general this phase is going pretty well. Lincoln doesn’t seem to be having any horrible side effects, although it’s always hard to know how he’s really feeling. He still runs around happy a lot though which makes me happy. My parents left and drove back to Utah on Saturday and so now it’s just me and the boys during the day. So far it’s been manageable. The biggest difference is unless one of them is napping I really can’t get anything done. Before I could kind of ignore them sometimes, but now I have to be watching them so closely always. They rough house and wrestle a lot, and it would only take a second for Sawyer to grab the tubs under Lincoln’s shirt and pull on them and cause huge problems….so when they’re both awake I have to watch them at all times.
Lincoln’s Prayers Lincoln does not like having his port accessed or living with it accessed. The other night he prayed that “Eric come take tubes out and take Band-Aids off.” Then this morning the very first thing Lincoln said when he woke up was, “Eric take tubes out, take Band-aids off" and I said, Eric will take them off tomorrow. Then Lincoln said, “No, Eric take them off to Now!” It was pretty cute, and sad. I hope it’s not too uncomfortable for him.
Tuesday, March 6, 2012
Last week Lincoln was supposed to start his next phase of treatment but his blood counts were too low and his immune system wasn’t strong enough. So they gave us a week off. Lincoln did not have any medicines of any form last week. And It. Was. Great. It’s amazing how much I took for granted having children who felt good before. It really is a blessing. He still had to spend most the week in the house, but by the weekend his counts were up enough that we felt like we could take him out. We asked him where he wanted to got and his consistent reply was “grocery store”. So, we went to the grocery store and he loved it.
We also went out and feed the ducks one day with one of my best friends and her kids. It was so much fun. I can’t stress enough how much I’m learning to really just enjoy and cherish every, good healthy moment we have. These the moments I hang onto when things aren’t as good that keep me going.
Phase two, Consolidation started yesterday and so far Lincoln seems to be handling it well. He was given four drugs yesterday at the hospital and our home care nurse should be here any minute to do it again today. He’ll get it again tomorrow and Thursday too, and then again next Monday-Thursday. I pray he handles it well and feels okay through it all.
A little more on this guy. He turned 18 months on March 1st. I wanted to do a photo shoot of him but it hasn’t happened yet, but I feel like I at least need to write a few things down now or I never will. He cracks me up, all. day. long. I am kind of obsessed with him. He is the jumpiest baby I have ever met. I mean look at the air he’s got in this picture!
Not only does he love jumping in the bounce house, he jumps on the hard floor too. All around the house he just jumps and jumps. That and running are by far his preferred method of transporting himself. He talks a ton, repeating anything you tell him too. He’s and amazing eater and a perfect sleeper. 8pm to 7am everything night with a 2 to 3 hour nap in the day. He’s super cuddly and snuggly and loves to nuzzle up to me and Ryan under the covers in our beds. He’s a big tease and loves to steal things from Lincoln and then run in a big circle around the kitchen/living room with Lincoln crying and chasing after him. Sawyer is probably the only person who hasn’t started treating Lincoln differently since he was diagnosed and I think it’s a good thing. He loves to dance and swing his arms around especially to the “Freeze song”. He’ll growl like a lion on demand when ever you ask him too and usually doesn’t stop for a while. I love him unconditionally and feel so grateful to be him mom.