Mia's first hair-do.

My grandma and grandpa came over for dinner tonight and my granny brought some sponge rollers with her. She's been wanting to put them in Mia hair and now she finally has enough hair to put them in. It's pretty thin but there was still enough to work with. She was born pretty much bald and has had the hardest time growing any hair, so it's been a long time coming. It's funny because Brody had SO. Much. hair. I think his first hair cut was at 6 months. Mia was very good while we were putting the rollers in, I guess she's use to me doing stuff to her hair. Plus she is as girly as it gets, so she loved being pampered :) On the downside, she didn't keep them in very long so the curls aren't that great but I think she is still adorable. 

{even with the mean face}

Look at this girl!

                                                                                               

Home for Good.

Where the heck have I been? Well, I've been at the beach. It feels like I haven't been on here in forever, but we've been busy enjoying our free time. I'll start at last Thursday, since I never updated about Donnie, but anyway, he had his post discharge check-up. It went really well, he's doing amazing! His doctor even said, "I wish I could just bottle you up." He's just doing that well. You would never know looking at him {minus some hair} what he has went through. Every thing the doctor asked about, he isn't experiencing; mouth sores, loss of appetite, change in taste, fatigue, nothing. Donnie really isn't experiencing any of the normal stem cell transplant symptoms, which is great, we couldn't ask for anything more. He still feels like his stamina isn't 100% but who's would be after all of this? We were just happy to hear that the doctor thought he was doing as well as we felt he was doing. The doctor said since he was doing so good that she didn't have to see him back for 2 more weeks. WooHoo! We honestly thought that we would have to go to check-ups so much more. It was awesome though because we had planned to stay at least one more week in California but now we could go home early! Back to normal a few days sooner, back to our bed a few days sooner, back to our life a few days sooner. Those few days were huge for us.

We could have headed home that day but my mom had planned on bring the kids up the next day, Friday. We thought it would be fun to keep them with us for a few days at my aunt's house in Ventura. We figured it would be nice to take them to the beach and just relax for a few days before we headed back to 'normal'. We had a really great weekend. The first day we were there it was crazy windy, so we didn't do too much. We were able to head down to the park on the beach for a little when there was a break in the wind. The kids loved it. Mia was all about the swing, she must have swung on that for a hour. She just loved it and was so happy. Brody totally enjoyed exploring a new playground. He even made a couple friends :) The next day, it was much nicer weather. We took the kids to the harbor and of course found a park {I think kids have a park radar, they find those way before parents even spot them}. We walked for a little bit and found some rocks for Donnie and Brody to climb on and explore. We went back to the house and ate lunch{Don still can't eat out} and Mia napped.
It was a much need time outdoors, we have spent way too many days cooped up inside! 

A little later we headed to the beach. Mia has never put her feet in the ocean. I had been waiting for the weather to be perfect before we went but the weather was as good as it was going to get. It was pretty cool outside but the beach was still beautiful. Mia and I took our shoes off and rolled up our pants and headed for the water. I think it was love at first step for her. She was in love with the water rolling in and rolling out on her feet. It was freezing cold but she could have not cared less. She just kept running in and running out and jumping. It was a very happy mom moment, it was nice to be able to experience that absolute joy with her. 

At least he is smiling.
That counts for something, right?

Brody on the other hand, haha, man I love that boy, but he is a stick in the mud. I feel like I always talk down on him and then I'm like oh, Mia is so great. He is great too and honestly out of both my kids, I 'get' him the most. But he just sat in Mia's stroller the WHOLE time and refused to put his feet in the water. I try to have patience with him but what kid just watches everyone have fun? Mia and Don and me are running around playing in the water and he's sitting way up on the beach just watching us. I almost felt bad that we just left him up there alone but it was his choice. Donnie kept trying to talk him into putting his feet in but he refused. He is the type of kid where coxing doesn't work. Once he makes his mind up, it is made up, there is no changing it. I don't pressure him though, Brody and me are similar, we don't do well when pressured. We do better when it is our own decision. I love that little guy and he has his own personality and his own likes and dislike, all of which include not wanting to play at the beach :) Haha that reminded me. After the beach we get in the car and I think I said, "ahh, that was fun" and Don says, "yeah, it was but I don't think Brody had fun?!" and I replied, "Brody had fun, it was just in a different way, his own way." and then we hear Brody say from the backseat, "No, I didn't have any fun, I want to go home and play skylanders!" Well, all righty then, guess he didn't. Haha

We spent most of the morning yesterday packing up and then eventually hitting the road. It took us about 6 hours from Ventura to our door step, with a few stretch breaks in between. The kids were very well behaved. They are great little travelers. There was no greater feeling then to walk into our house, it was like pheeewww, Finally. Home. Now on to getting back to normal. There isn't really ever a normal but I guess I mean back to, us. I miss focusing on our family and my marriage and my kids and my passions and all the things we enjoy. We are just so anxious to get all those things going again that, for a lack of words, have been put on the back burner for the last year. 

It just feels really amazing, to be home for GOOD.

Good day.

Donnie was able to leave the hospital about noon yesterday and it was quite a relief. It felt great to know that we didn't have to step back into that hospital room again. Donnie even said, "it feels like I'm busting out of jail." haha. It really did feel like that though! We were so happy and relieved, but it was all to be ruined by the pharmacy. Haha, not really ruined, but I hate the flipping pharmacies. Every single time I go something is always wrong with the Rx. Either the date isn't in the right spot or the dosage isn't on there or this time the narcotics weren't on the right form. Uggh! Donnie still has to take a pain relievers because he has nerve damage in his face from the tumor. The doctor said that it may take awhile for it to go back to normal if ever. She told us that when nerves get damaged they are very slow to repair but anyway, back to the stupid pharmacy. So we drive from the hospital straight to the pharmacy by my Aunt Lu's {45 mins from the hospital} and I go to drop all the Rx's off and they wouldn't take his pain reliever one because it wasn't on the proper form. So, long story short, we had to drive all the way back to the hospital to pick up a new Rx and bring it back to the pharmacy, because they can't do faxes, they have to have the actual form. It was about a 3 hour round trip drive {with CA traffic}. I finally dropped it all off at the pharmacy, they tell me it will take 3 hours so I go back 3 hours later and they don't have the Rx in stock!!! I literally could not believe it. I spent the last 6 hours trying to figure this whole thing out and then they don't have it. It would have been really nice of them to tell me that when I dropped it off. So annoying. Needless to say, Donnie survived the night without them and he wasn't in too much pain. I just don't think they take people into consideration sometimes. But whatever I lived :)

On to something more positive. Today, Donnie and I decided to take a little day trip. We both knew we didn't want to sit in the house all day but he really can't do much. Any public places with people are pretty much out so we decided to take a drive up the Pacific Coast Highway and find a nice piece of beach in Malibu to have lunch. We packed some sandwiches and snacky stuff because Donnie can't eat any food from restaurants. We had a really nice time just laying on the beach and walking the shore. It was just us and the birds and the sound of the ocean. When you go through Cancer you spend  

every day just getting through the day, so it was nice to actually spend one day just enjoying it. We have spent so many days and weeks in hospital rooms that it was good for the soul to be in the fresh air and and soak in all the beauty. Sometimes you lose a little bit (a lot a bit) of yourself and your relationship when your only priority is getting someone healthy. I think today was just what we needed to reconnect and just enjoy each other, no kids, no doctors, no Cancer. Just us. It was a good day today!
{Sorry for the not very good pics, my camera dies right when we got there (of course) so we were stuck with the ol' iphone}

 

Last Day.

Today is Donnie's last day in the hospital. They are discharging him within the hour. I just got back here yesterday night and he has been doing realy well. On Saturday, he wasn't neutropenic anymore so masks are no longer needed and he is able to eat more foods that were restricted before. Yesterday, they were going to let him leave but his platelets were still a little low, but today they are where they need to be so he is able to leave. His rash is almost completely gone too. Other than feeling a little wore out, he's feeling great. He is so ready to get out of here, he's ready for some real food and fresh air and probably a hundred other things. He can't do everything though, he can't be around large crowds of people {malls, movie theaters, grocery stores} or restaurants at least for the first 2 weeks. There is just more risks of getting an infection when he is around all those people and germs. We will still need to come back all week for him to get check up's but he is in the home stretch of putting all this behind us! We are beyond ready to not have to spend days and weeks and months at doctor's appointment's and hospital stays. We will be staying at Aunt Lu's for at least another week and then my mom is going to bring the kids here and we will keep them with us until Donnie is able to go home for good. We are so ready to be home, especially me, I am sick of driving back and forth every few days. I think I've put 2000 miles on my car in the last 3 weeks! I can't believe that the day is finally here and he is able to get out!

My little Gymnist.

Mia started gymnaastics class on Monday. I wasn't able to go to her first class with her but my Aunt was able to take her. I was able to take her on Friday though. Brody has karate class at the same time and we would always just wait for him in the lobby. SO, i figured why not have her She was adorable and we had so much fun. It funny because when my Aunt took her, she said that she cried most of the time and didn't want to do anything. I dont know if it was just because it was new to her or becuase it wasn't me taking her or it may have been the other boy that screamed the whole time ;} Haha my Aunt said there was a little boy in class that just screamed the whole class and Mia was a little freaked out. By the time I took her on Friday I think wshe was a little more familiar with the surounddings so it wasn't so bad. She was a little aprehensive at first but then she was all about it! She even did the toddler balence beam all by herself, no assistance. I was pretty impressed, I didn't she woud be able to do half the stuff she was doing. Her teacher caller her a "natural". I was a pretty proud mommy! She is seriously the swetest little girl.

Day 8.

Donnie has really been in the hospital for 14 days but he is considered Day +8 post transplant. He has been doing really well so far though. He is just pretty wore out, like the first couple days after the flu. He has also had to get a few bags of blood and platelets over the last couple days, because his platelets have been too low. The rash he had is starting to get a little better too. Donnie will potentually be discharged on Monday if his numbers continue to stay on the upward, but that is something they determine daily. It will all depend on how he looks that day. We are both ready for him to get out of here, so hopefully he continues progressing well!
I, unfortunately, have to leave today. I want to get home and see the kids for a few days and I also have to bring my grandpa home, who hitch hiked up here with me :) His sister(Aunt Lu) is the one I have been staying with and he hasn't seen her in awhile, so I thought it would be a perfect time for him to make a trip up. I spend almost all day at the hospital so him and my Aunt Lu were able to get lots of time in together. She was able to get a lot of gardening done. {he has quite the green thumb} I'm sure my Granny is ready to have him home and I'm ready to have the guest bed back haha. I was sleeping on the fold out couch so he could have the guest room, and I've never had the worst 4 nights of sleep in my life! No, haha, I'm glad he came, it was nice to have a partner on the trip. Gotta go though, I need to make it home before Brody's fundraiser tonight :)

Meet Jaxon.

I want you to meet Jaxon Piro. His is a 10 year old boy with a Brain Tumor. But first I want you to meet his Aunt, Beth. Beth is the mom to Maggie, Maggie is in Brody's preschool class and she is the cutest little diva I know :) When we first found out about Donnie's diagnosis, Beth had found out about her nephew almost at the same time. We bonded over Cancer. Not that it's a great thing to bond over, but when you go through Cancer you feel like no one understands. I truly felt like she understood what we were going through. It may not have been directly effecting her immediate family but it had a impact in her every day life. She was doing whatever she could to help her sister, whether that be taking care of her nieces and nephews or bringing dinner or just being her shoulder to lean on {which most of the time the hardest part}. Plus the pain of watching your nephew go through Cancer. Not only did her family have the heartache with Jaxon but they also found out a few months ago that her mother had been diagnosed with breast Cancer. I think Beth is a very strong lady and I wanted to share their story.

Now on to Jaxon. I don't personally know Jaxon or his family, but I feel like I do. I have followed his journey from the start and my heart hurts for them. I can't imagine having to go through this journey watching my son do this and not my husband. I have said it before but my husband gets all of this. My husband understands that life is really shitty sometimes and understands why he has to stay in a hospital for weeks at a time and he can handle the pain that comes with this. But to think of a sweet innocent little boy having to go through this awful process breaks my heart. I think of my own son and the pain it would cause me to have to watch him battle for his life. This little boy should be playing baseball and running around outside and wrestling with his brothers. Whenever I feel so down, I think of what this family is going through, because I honestly can't imagine. I wanted to write a little something on my blog because he needs everyones help right now. He was receiving treatment in Vegas over the last 9 months or so but he developed another tumor. So his family decided to up root their whole family and move to Texas. Where he is receiving treatment at the Burzynski Clinic. I have heard nothing but great thing about this place. His mom enrolled all of his other siblings into school there and they live in a small guest house. Can you imagine?! I certainly can't and if anyone should know what it's like to live from place to place and never be home it's me. I hope and pray nothing but the best for this family! They need lots of prayers and lots of good thoughts and donations. His treatment at the Clinic are not covered by insurance because they are considered clinical trials. But if nothing more, please just say a little prayer for Jaxon and his family tonight. I'm sure his family would appreciate it! 

Please read Jaxon's full story HERE.

Ironic.

Not much to talk about today. Donnie is the same as yesterday, just relaxing. So I thought I would talk about a funny little story. Probably isn't very funny but sometimes you just have to laugh when times are crappy. Every show that Donnie has really gotten into in the last few years, the main character has always wound up with Lymphoma in real life. It's funny because Donnie loved Dexter and then he found out he had Hodgkins Lymphoma. Then he loved Spartacus and he found out the main guy was leaving the show because he had Non-Hodgkins Lymphoma. Donnie was so bummed. He kept saying man, I can't believe he's not gonna be on the show anymore. And then not a few months later her found out that he himself had the same thing. Then, last night Donnie tells me that the guitarist from Black Sabbath was just diagnosed with Lymphoma. Donnie has liked them for years, he even has a guitar pick from the guitarist from one of his concerts. Anyway, we started laughing. I keep joking with him telling that I feel bad for anyone he likes. He has the lymphoma curse haha OMG, that sounds very mean but I guess if you can't laugh about, you'll cry! But man, do I feel bad for the cast of Walking Dead ;) Lymphoma is not funny at all, it's very devastating but I mean, if that isn't ironic, I don't know what is?!

Back to business.

So I'm back at the hosital after a very nice extended weekend with the kids. Going home was much needed, not only for me but also for the kids. They were back to normal and driving me crazy and spilling stuff and crying and laughing and hugging in a matter of seconds of me being home :) It was exactly what I needed to get me through the next week. I am starting to get a little anxious and stressed and overwhelmed and a hundred other things right now. I can tell the kids are starting to get the same way with me gone all the time. Brody has always been a little scaredy cat but it seems worse, he won't even go to the bathroom alone. And Mia well, most people could describe her as a terror haha. They just need consistancy and right now, nothing in their life is very consistant. So, I think the both of them are just doing things because of that. And to think that dealing with your husband having Cancer is bad enough, I also have to deal with my parents getting a divorce. It has been a very tumultuous year for them and now the end is here. I will spare you all the gory details but overwheling doesn't come close to descibeing life right now. I see all the fun that other people are having IE; vacations, girls night out, date nights, crafting and I become so envious. I know our day will come but man, I wish it was soon! I would honestly consider myself very strong and resilient and I pride myself on keeping my emotions in check but I am sick of being strong and resilient. I want just one day, where the worst of my troubles are the kids spilling a glass of milk or the store not have the right bread or being late for an appointment. One day. I know it will come. I just need to keep my head up. I swear though, when it rains, it pours!
Ok, Ok enough complaining... on to something important. Donnie. He is on Day 5, halfway done. He's actually doing surprisingly well, he hasn't lost his mind yet! I thought for sure he would be going stir crazy by now but he's been doing fine. The being sick part has passed and he has been feeling ok, he feels tired and wore out but the nausea and vomiting seem to be over. He has a pretty bad rash on his head, face and chest, which have been driving him nuts. It's super itchy. They give him benadryl at night to help with the itching but not in the day because he would be out of it all day. So he's kinda just dealing. He also has a few mouth sores in his mouth and throat from the high doses of chemo, which they can't do much for. It's just part of it. He rinses with this certain mouth wash throughout the day to keep them at a minimum. They said good oral care will help them not get really bad. They were able to take him off the heart monitor on Saturday {which was much longer than it was suppose to be} and his blood has been fine ever since. He became neutropenic on Saturday so everyone that comes in his room needs to wear a mask {yes, me too. BOO.} At first, it was incredibly irritating to sit with a mask on, but now I'm use to it so it's no big deal. As for now, he is just relaxing and recoving and waiting for all of his counts to start coming back up to normal. He is in good spirits and is looking forward to being out of here!
We have appreciated everyone's prayers and good thoughs and kind words. They have meant the world to us!

Day 0

Today is Day 0, Stem Cell transplant day and the first day of recovery. They started the stem cell transfusion at 10am this morning and it didn't take long at all, just about 30 minutes. Everything went fine, no big deal, just like they said. The stem cells are just in a regular IV bag and they run them into him just like anything else. The stem cells are this reddish, salmony color and they are super cold, like freezing cold. They are so cold that they cause this sort of tickle and cough in the back of your throat. But supposedly they are doing a study right now that sucking and eating and smelling oranges doesn't cause that side effect. So, Donnie ate his orange and low and behold no weird side effects for Donnie. He was perfectly fine {just really tired from the benadryl}. He never felt the tickle or anything. Everything went great today, Last night was a differnt story though haha. Last night after I left, Donnie started to have a rough time. He was getting very nauseous and dry heaving every time they would change his bag or give something to him in his IV. Which happens 5 to 6 times a night. So, he had a really hard time sleeping. And on top of that, he's still is on a heart monitor and a IV bag for low blood pressure. They decreased it yesterday when I was here but I guess when I left his blood pressure started to go down again, so they had to bump his dose back up. They are suppose to take him off it completely in a little bit because his blood pressure seems to be staying stable but we'll see. He's been sleeping most of the morning and hopefully catches up on what he lost last night!
Today, is my last day at the hospital till Sunday. I'm going to go home for a couple days and be with the kids. It's pretty bittersweet for me. I wish that I could just be here with Don, everyday and not ever leave but I miss the kids. I miss them terribly. I have never wanted to get home so bad. I miss doing all the mom stuff; dishes, bedtime, reading books, taking Brody to school, making brakfast, lunch and dinner. I know it sounds crazy but I just miss all the little stuff. I just can't wait to see their little smiling faces. We Skype them evryday but it just isn't the same. I already feel like Brody got a little bit older and Mia's hair is a little bit longer. I think the hardest thing through all of this is missing my kids. Feeling like I'm missing a little piece of their life I won't get back. I'm sure that I miss them more then they miss me because they are just having fun with Grandma, but I guess it's just a mom thing :) Anyway, you probably won't be hearing from me for a few days because I will be enjoying the next 3 days with my Brody and Mia! Be back on Sunday :)

Last bag of Chemo.

Today was big day for Donnie, he made a long trek across the hallway to a new room! Very exciting day ;) In all seriousness, they've been talking about putting him in a different room since we got here, so we were glad that they finally had one available. The new room is bigger and has a larger bathroom and shower. It also has a much better view, I figure if we don't go outside we mine as well enjoy it from inside. And... he had his very last bag of Chemo this morning. Hopefully, the very last for the rest of his life. It's kinda weird to say, last chemo bag. I never even thought about it until he said "that was my last bag of chemo". It was just crazy to think that all this bull is almost over and he is one step closer to being done. He still has a long journey but that moment was a good feeling. Donnie hasn't been feeling very well the last few days. He had a really rough time on his chemo on Sunday. Every time he would move or sit up or stand to pee, his heart rate would go up and his blood pressure would go down. He would start to feel weak and nauseous and he would start to vomit. He had a good 24 hours of that. Yesterday he started to feel a tad better but his blood pressure was still low and continues to stay low. They just keep monitoring him and keeping him on his 24 hour heart monitor. He really isn't allowed to walk around or stand up, only to pee but other than that he has to lay back down. He's hanging in though. He gets his actual Stem Cell Transplant tommorrow at 10. They said its no big deal but we'll see how it goes!

What I know... Today.

Today I know...

- That I miss my kids {terribly}. Right at this moment I wish they were asking me a hundred questions and requesting 15 different things to eat and crying and laughing and all the wonderful and awful things that come along with having children.

-That hospital food is AWFUL. (not that I did't already know that)

-That the want to be normal again is almost painful, but the knowing that there really isn't a normal is some what calming.

-That watching my husband go through all of this has softened me. And probably made me a better person.

-That I may have a raspberry Brisk addiction, that is progressively getting worse.

-That I love my husband a whole lot more than I ever thought possible.

-That sitting around every day, all day in a hospital room is Completely. Exhausting.

-That eating bagels twice a day, probably isn't very healthy.

-That my Mom is amazing, and I would never be able to get through any of this without her.

-That Cancer sucks! If Cancer isn't the Devil, I don't know what is.

-That loving someone just isn't enough sometimes, you also have to show it, and prove it, and
live it.

-That Hoarders is a disgusting show.

-That my kids are the most amazing little things ever {even if they drive me crazy sometimes}

-That I get mad a God sometimes.

-That I am blessed by God more than I will ever understand. I believe he made me strong, and realistic, and maybe a little under emotional for a reason. He knew the struggles I would face.

New Year.

Well, I started out the New Year the way I hope to spend 2012... Sleeping! Haha but really?! I did way too little sleeping in 2011, that I would like to spend 2012 catching up on it. Donnie and me planned on ringing in the New Year together, sitting in his tiny hospital bed watching a movie and kissing at midnight. Well, didn't quite work out that way, by 9 o'clock we could barely stay awake long enough to make it through the end of our movie, so I resigned to Aunt Lu's and Donnie hit the sack. It's just another night, no big deal, right? We are ready to have a healthy, happy, normal 2012 and put 2011 behind us!
On Friday night, Donnie's first bag of chemo went fine at first but after about a hour his face started to hurt him pretty bad and then it became almost unbearable. Then he was very light headed and almost passed out in the bathroom. The doctor gave him some stuff for pain and after about a hour or 2 he felt a little better. He was able to get some sleep that night and by the morning he felt 100%. Yesterday was a rest day, so no chemo. We just hung out most of the day, would have probably been more of the day, if I didn't drive to Santa Monica that morning {stupid California freeways} uggghh. But anyway, it was a good day for him, even though we are both going a little stir crazy in here. You can only play so much Rummikub ;) Today, he had to wake up extra early, 5:30am, to shower and get started on his next bag of chemo. He has to be hooked up to a heart monitor the whole time, so he isn't allowed to get up from the bed. This kind of chemo has a side efffect of low blood pressure. So, he has to be hooked up to a heart monitor the whole time and a nurse has to stay in the room the whole time to monitor him. Since his blood pressure will get so low he won't be able to get out of bed for the duration of the bag, which is 4 hours. He also had to take benydryl right before and then again a hour later. So, he's pretty much been out of it all day. His blood pressure did drop too low about 2 hours in, so they had to stop the chemo till it came back up and then they were able to start it back up. Other than that he has been snoozing the day away, which is great! Better than sick. It's definitely been a boring day to start the new year though haha.