Month: August 2010

Ro’s ANC counts came back and they are at 120 today. Yay! Great news for us! Dr. Wood said we should be able to go back home Friday. I slept at home last night and Wood stayed at the hospital. Woody’s banned me from the hospital for a couple of days due to me not feeling well. Mimi Kay is with Ronan now and I’m waiting to see my doctor…. Just wanting to confirm that I don’t have anything like strep throat, etc….. We can’t compromise Ronan in any way. I know I’m just run down. I’m going to rest at home today and tonight.

I saw Dr. Mengesha. He is such a kind man. He knew all about Ronan and just kept telling me how resilient kids are. He asked me if I wanted anything to help me sleep… I said no. Not going down that road. Woody would flip anyway. He just confirmed what I already knew…. A little bit of a cold and exhaustion. Mimi Kay and Karen have been taking turns with Ronan. Thank god for those two! Woody will sleep at the hospital tonight and I will stay home. It’s breaking my heart that I can’t see my baby. I just need to remember to take better care of myself…. Because if I don’t it’s Ronan who pays the price.

Trish and Marisa stopped by this morning. They brought a new big shoe basket for our front door(new rule, no shoes in house) and it was full of goodies. I really lucked out finding those two as my best friends. I’ve always known that you don’t get any better than them…..they are the sisters that I never had growing up… But now I do.

I am excited to spend some quality time with my twins today. I’m picking them up from a play date in just a bit. Liam asked me this morning if we could go and get him new school shoes tonight. I meant to take him right before all this started and it never happened. Poor kid! The twins seem o.k. I think this is hard for them to understand. Their entire world has changed in the blink of an eye. They are used to being with Ronan and I, all day everyday. I hate that we have to be apart as a family. It makes me sad that we have this beautiful house and their friends can’t come over to enjoy it. I love to be the mom who hosts the play dates, goes to their classroom, takes them to their sports, etc…. I love my house being full of kids, laughing, and playing. I just keep telling myself that this won’t be forever, and hopefully they really won’t remember any of this as they get older. And at least they have each other. It would be easy to think of all the negative things that come along with what we are going through. I’ve decided to count our blessings and count them twice!

Off with his hair! My sweet girl who cuts and colors my hair, the amazing Katrina, came and shaved Ronan’s today. He looks like a badass. I didn’t cry. Even though I wanted to. Liam and Quinn watched…. not so sure they really wanted to but Ronan got really teary eyed when they said they were leaving before he cut it. Ronan was really wanting his brothers around today. I can tell he is missing them a lot. I always knew Ronan was the most gorgeous boy put on this planet. This just proves it. He looks BEAUTIFUL. His blue eyes look a hundred times bigger and the shape of his head is absolutely perfect. He sat so brave while we shaved it off. After, he kept wanting to touch it and was asking about the scar on his head. I keep telling him it’s his tough guy scar. He keeps saying he has an army guys haircut. So cute. His spirits are great…. but his ANC is still at 0. Hoping they’ll come up by tomorrow.

I think I am going to sleep at home tonight and have Woody sleep here. I can tell my body is trying to get sick and wanting to shut down. I’m sure it’s due to lack of sleep, food, and the freezingness of this hospital. Brrrrr! Why do they keep is so icy cold here?? A good nights sleep is what I need to fight this off. I can’t be sick around Ronan. That would not be good for either of us. He needs his mama and I need him.

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To write tonight. Ronan is wide awake and we are having a party in his bed with applesauce, crackers, and gatorade. His fever is gone, knock on wood. He is giggly and saying lots of funny things. His spirits are good and he wants to come home. Hopefully we will be able to this week. Goodnight to all of our angels out there.

P.S. Tonight I grabbed a quick bite with my girlfriends, Sarah, Janet, and Kristen. Thank you for that, girls. I also got to go home to kiss my twins goodnight. Liam was already asleep but I woke him up to do so. Quinn was awake and it was so good to see him. So therapeutic. He really let me hold him and love him. It was while looking into his beautiful gray eyes that I swore to myself up and down that we will get Ronan through this. Quinn and Liam deserve to have their baby brother back home and healthy. Nobody is going to screw with the bond they have or take it away from them. EVER. We were meant to be a family of 5. Ronan is the perfect ending to our family and it is going to stay that way. So screw you, Cancer. YOU WON’T WIN.

We are going to be here for a few days. Ronan’s fever is gone but his ANC (absolute neutrophil counts) are at 0. The normal range for the ANC is 1.5 to 8.0 (1,500 to 8,000)This basically means he has no immune system. This is pretty typical after the 7-10th day of chemo treatments. They want to see his numbers come back up before they send us home and packing. It’s fine by me….I feel safe here with people monitoring him 24/7. He asked if he could go home today. I told him not today. He just said, “O.K. Can I have my Star Wars sheets?” I asked him if it was ok for me to run home and get some things while Woody stayed with him. He said yes and sent me away with a list of things he needed. His list included me taking his favorite blanket,(Gigi) home to wash it. He asked that I return with his sheets, a pillow, string cheese, Star Wars underwear, and “guys helmets,” aka, his Star Wars action figures.

I ran home and showered and Trish picked me up and we met my other friend, Christy, for breakfast. Christy even skipped church for me this morning. Bless her heart. She, Trish, and I sat and had our own church this morning. It was so nice to sit and pow wow with them. The table next to us was a mom and dad with their 2 very young children. I watched them forever and the interaction that was going on between them. Typical stressed out mom over her 2 year olds table manners and not sitting still. Dad was very relaxed and trying to help mom get the little girl to sit still but she was not listening. The mom got upset and grabbed her daughter and they left before she even had a chance to eat much of anything. I used to be that mom. Things like that seemed so important at the time. It’s only that you realize after going through something like this, that they are not.

After breakfast, Trish took me to Target and then home to help me fold my mounds of laundry and put it away. I take such pride in staying on top of these things that’s it’s hard for me to watch them pile up. I know this is part if my control issue and I just need to let some things go. Easier said than done. I’m a compulsive neat freak/cleaner.

Back at the hospital now. Ronan is sleeping. This room is so depressing. I don’t understand why they make hospitals this way. So dark and sad. Our roommate has been sitting in his bed since we got here yesterday with the lights off and T.V. on. I hate the T.V. on in the middle of the day. Drives me bonkers. I’ve pulled open Ronan’s shades and am trying my best to make this place as cheery as possible. He’s been listening to Radiohead and Pearl Jam on my iPad. He loves music. I am trying my hardest to drown out the sounds of Hannah Montana in the background. Thanks for checking in with us and loving us. We are so lucky to have all of you.

xo

I knew something was wrong today. Ronan slept until 9:00 a.m., which he never does and did not want to get out of bed. When I picked him up, he was like a wet noodle. I talked him into moving onto the couch where I put down his favorite blanket and turned on Star Wars for him. He watched for a bit but did not seem interested like he usually does. I made him his favorite breakfast, eggs and sausage. He didn’t touch it. Then, the bloody nose started. I calmly got kleenex and pinched his nose while making him sit up, just like the doctor told me to do. I had Woody get a cold compress to put on the back of his neck. After about 20 minutes, it stopped and I thought I had things under control. I told Woody to go ahead and leave to go over to The Village (our gym) for the twins’ basketball team draft. He left and I continued to try to get Ronan to eat and drink. He was still refusing. 15 minutes later, the blood started pouring again. I repeated the same steps as before and after 20 minutes of not getting it to stop, I grabbed my phone with my one free hand while trying to call anyone and everyone. I couldn’t get a hold of Woody, the on call doctor, friends, etc….. Nobody was picking up and my calm, cool, collected self, was panicking. I even called 911 and I got a recording that all lines were busy. WTF?? Really, 911!??!?!?! Finally, I reached my Wood and told him to get home. At this point, Ronan is looking very pale and was wanting to pass out/fall asleep. We threw him in the car and headed to the hospital. We finally got a hold of the on call doctor and he told us that we did indeed, need to come in. We sat in the ER forever and the blood continued. They tried a saline spray to get it to stop… it worked for about 5 minutes. Then the blood continued to pour. Ronan was so brave and calm. He sat on my lap the entire time and just rested his head on my shoulder. After about an hour of this, the bleeding finally stopped. Knock on wood. We are now in a room back on the second floor where they have him getting platelets and monitoring him because he has a slight fever. He threw up a bunch of blood that he swallowed and I thought Woody was going to pass out. Poor guy. Poor baby.

Ronan seems to be feeling much better after all of this and is now asking for string cheese and just ate a bunch of Otter Pops. As for me, I’ve decided that most of the things that I’ve been going through are like an out-of-body experience. Sometimes I feel like I’m just watching from above. It’s my way of being able to handle it I guess. I talked to little Jack’s mom via text message tonight (the little boy who has the same thing as Ronan) She is one step ahead of me on everything. She said the same thing about the out-of-body experience. I also asked her if I was weird because when I cut off some of Ronan’s hair, I saved some and put it in a plastic baggy. She said she did the exact same thing. She also said, this does get easier… even though it seems like it never will. Woody is out to dinner with her husband, as we speak. We are so grateful to have them to talk to. I hope I can help someone someday, the way that they are helping us. Ronan is curled up in his hospital bed asleep. Before he fell asleep I told him I loved him and that he was my angel. He just looked at me and smiled.

We are back at the hospital. Ronan’s nose started bleeding around 10 this morning and we could not get it to stop. His platelets are very low and he has a slight fever. We will be staying over night so they can give him more platelets and monitor him. Please continue praying/sending good thoughts our way.

xo

Nosebleed stopped. Ronan now has a slight fever. He is looking much better. He threw up a bunch of dried blood that was in his tummy from his nosebleed. Now he is eating Otter Pops and threatening to rip out his tubes. My little fighter is back:)

These past 2 weeks have been so hard and I know it’s going to get harder. I’ll never forget when Dr. Wood came into tell me that they had found a mass in Ronan’s stomach. I fell to the floor and could hardly breathe. Wasn’t it just a day before all of this that Woody looked at me and said, “We are so lucky, we have the perfect life.” He would say things like this weekly and thank me for being such a great mom and taking such good care of his boys. And I would always thank him for giving me such a wonderful life and letting me stay home and raise our boys. It was never a right to me; it was always a privilege. We both knew how good we had it. We pretty much had our life map planned out. It included our 3 boys playing lots of sports, doing well in school, having all of their friends over and getting eaten out of our house, our family, lots of traveling, and just being together as much as possible. There is still a plan… I’m just looking at this as a little detour along the way.

I can tell Ronan is starting to feel sick. That’s really hard for me to see. A few weeks ago he was my overly wild, insanly active little guy who was always causing trouble and beating up his 7 year old brothers. The next minute he can hardly walk and does not want to even get out of bed. He is starting to look sick, act sick, and feel sick. It’s heartbreaking to see and watch.

I finally broke down in front of Woody last night. I haven’t done that yet but I was having a day where I was feeling sorry for myself. I hated doing it, I don’t want him to see me hurt the way I am. He has enough to worry about. I wish I wouldn’t have because it did not make me feel better. It was not one of those moments that brought us closer. It was one of those moments that Woody looked at me and told me to stop feeling sorry for myself and to knock it off. I needed to hear that because now is not the time to be weak. I know there will come a time for him to hold me so I can break down. But it was not last night. He needs to be around me when I am strong because we are going to be dealing with this for a very long time. And for the record, he doesn’t read my blog…. it’s probably better that way. He says he doesn’t understand my needing to be vocal about such a private thing. But he supports me, because he knows it helps me.

So, I am going to try my hardest to put on a happy, strong face when I’m around him. And if I need to break down it will be on here or in front of friends…. One of my girlfriends, Ryan, posted something on my Facebook wall today. It said, “You never know how strong you are until being strong is the only choice you have.” Ain’t that the
f-ing truth.

We finally brought Ronan home yesterday evening. He was so excited! Liam, Quinn and Papa Charlie were waiting for us and had decorated the awning above our house with a bunch of letters, cards, and pictures from Mrs. Elwardt’s and Mrs. Martin’s 1st grade class. It was so cute to come home to. We got settled in a bit and the 3 boys played and laughed just like before. I have not heard Ronan’s giggles in over 2 weeks and Liam and Quinn had him in stitches:) It melted my heart. Those 3 boys love each other so much. Our neighbors and friends, The Tarbell’s, walked down a new wagon for Ronan and it was full of Mark’s amazing cooking from his restaurant. I swear, that man cooks like no other! It was our first meal together as a family in a long time and it was so special. We talked a little bit with all of the boys about how things are going to have to be different for a while. We told them there could be no more wrestling or rough housing with Ronan until he is better. This house used to be wrestlemania, 24/7…. can’t be like that anymore. We also tried to explain to them how Ronan will be going back and forth to the hospital and is going to get sicker before he gets better. They seemed o.k. with everything and didn’t have any questions or seem scared at all. Thankfully they are too young to fully understand what is going on. All they care about is that Ronan is back home now and that they get to play with him and help take care of him.

Ronan has been playing non-stop with his Star Wars guys (he is still obsessed) and shooting his guns. He is pretty weak though and is having a hard time remaining steady on his feet and prefers to crawl from place to place. This is hard for me to see. I’m so used to him being overly tough and rowdy. His little body is fighting hard and working overtime. I am just so thankful we are all home and together. Hopefully he’ll gather some strength in the next few days. I slept with him last night. I miss my husband, but Woody came in to check on us a few times during the night. I tried to sneak over and sleep in the other twin bed in Ronan’s room but he noticed after about 30 minutes and wanted me back in his bed. It’s fine by me, I love snuggling up with my little bug. We may have to end up getting rid of his two twin beds and just buying a bigger bed for the two of us. I have a feeling I won’t be sleeping in mine for a while. I would put Ronan in bed with Woody and I but Wood is such a night owl that I think he would keep us up. I love being in Ronan’s room anyway. His room has always been my favorite place in our house. We have just been hanging out at home today. I’ve been trying to put all of our 50 million hospital things away and Ronan has been pretty quiet playing and watching “Clone Wars.” Liam and Quinn are going up to Flagstaff for the weekend with Mimi and Papa. Woody and I will stay here with Ronan and just try to get him to rest and get used to doing his mouth care 3 times a day and his shots.

It feels nice to be home, nice to be doing normal things like dishes and laundry. I am so thankful I love my house so much since we are going to be spending most of our time in it. As much as we would love to have visitors, we have decided that we just can’t risk it. Liam, Quinn, Mimi, and Papa will pretty much be the only people we are able to have Ronan around. The less people we expose him to, the better. He is not going to have much of an immune system and one of our biggest worries is infection. I am going to be busy trying to keep our house and his environment as germ free as possible. We also have to keep his weight up. So far, his appetite seems to be really good. In fact, he ate one of the chicken dinners Mark made us last night for breakfast. The entire thing! He has always been a good eater so I’m hoping it stays that way. We will be making trips down to the hospital twice a week while Ronan is home in between his chemo treatments. They have to monitor his blood, platelets, and check his vitals. We don’t have to go into the hospital, which is nice. We check in right next door to the clinic.

We have decided that Monday we will shave Ronan’s hair. I have the girl who does my hair coming over. So nice of her to do. I don’t think I could handle taking him into my salon. He’s been itching his head a lot and keeps saying he wants it cut off. He’s more ready than I am:) Today, he brought me the toenail clippers and said, “CUT MY HAIR OFF!” He was so mad when he said it. I said, “You want me to cut part of you hair now?” He said, “Yes, please!” So I took some scissors and cut it shorter for him. That seemed to satisfy him for the moment. Woody wanted to shave it in the hospital, but I was not ready for that yet. He has the most amazing and unique color of hair. I’m going to miss it but I know it’s only hair and will grow back. My mom says when it grows back, she bets it comes back curly:) How cute would a curly haired little Ronan be?!!

I wanted to say thank you to everyone for the cards, gifts, balloons, candy, quilts, pictures, gift certificates, flowers, toys, etc….. I wish I could send each and everyone of you a thank you note personally. It’s one of the things on my “to do” list…. but I don’t know if I will actually have time to get to it any time soon. So a big huge Thank You from our entire family to all of you. Your love and support will never be forgotten.

xoxo

Home and so tired. If I don’t write tonight it’s because I can’t move off my couch or form a coherent thought. I may get another burst of energy because the unpacking of the bags that needs to be done, is driving me crazy!

Going home in a few hours. Ronan is getting platelets and blood before we will be released. Woody and I also have to show them that we are comfortable with the broviac and shots. Our scan came back today and Dr. Wood came in to tell me it didn’t show anything that we didn’t already know. Big sigh of relief there. I’ll take that as great news:) Dr. Maze came up to give me a hug and say goodbye. That man has been so comforting to me the entire time I’ve been here. He really goes above and beyond the call of a normal doctor. I’m waiting to meet Woody for a quick-lunch at Houston’s, even though I look like a homeless person. In my old life I would have totally cared about that. Now, I don’t at all.

Lunch was not as I expected. I have not been out in the real world in 2 weeks. As much as I hated being at the hospital, it has become comfortable and a way of life for me. I full on had what I think was an anxiety attack in the restaurant. All of the people and loudness of the restaurant was way too much. Some little girl in a tutu kept wondering over to our table. I wanted to scream and cry all at the same time. My head started spinning, heart was racing, and I basically had to force feed myself. I couldn’t get out of there fast enough. I ended up throwing up in a bag on the drive home. How can anything ever be normal to me again? I can’t wait to get Ronan home to the safety of our house. I don’t think I’ll be venturing out in public for a while. I’m ok with saying inside our little bubble.

I’m going to shower now and head back to the hospital to get Ronan ready to leave. I’m scared but also excited to be coming home. It will be so nice to be able to see Liam and Quinn and get somewhat of our normal family life back. I have missed being a mom to my twins so much.