Sorry it's taken a while to update!

Ok, I've gone about a month since my last post. Life has been pretty non-stop since we've been back. It's been much harder getting back into the swing of things than I thought it would be. Emily was not as active before so she's definitely occupying more of more time. Rachel has started her therapy back up for PT, OT, & speech. Before this week, she had been doing great. This week has been a pretty rough one for her. She is having some trouble with her right hand and leg. That side of her body is a little spastic right now and she's having some problems using her hand and also with her balance. I took her to the clinic immediately when I noticed what was going on. They did a CT scan on Friday to check her shunt, everything was fine. They think that the radiation caused some inflammation in her tumor and it's pushing on some new nerves. The problem is already starting to look a little better and it's suppose to go away on its own- hopefully! I can't express how scary it is to see your child having trouble controlling her own body!! We have a MRI on the 7th and that's going to give us a better idea of what's going on. It's too hard to do it now because we won't be able to get a good reading due to the inflammation. She has also been very tired all week. She spent the whole day on the couch and now it seems like she has a low grade fever. We were at clinic 3 times last week and if that fever doesn't get better this week will be the same. I'm really hoping for an uneventful Christmas so hopefully she'll be feeling better in a few days. Please just keep her in your prayers because she deserves to have a fun and carefree holiday!

Celebrating Cade's Birthday

Cade turned 4 on Dec. 14th so we helped him celebrate at Chucke Cheese. Rachel loves it there! She thinks chucke is her friend. She dances up on the stage by him and she was so excited when the live chucke gave her a hug. She doesn't care much for the games or rides just chucke! Emily loved trying the food and she does enjoy the rides. She's all about keeping up with her cousins!

Cade loves to chase Rach around to give her kisses. Rach does not appreciate how sweet her cousin is!

She loved carrying around the tickets so she could get a sucker.

Emily discovered pizza crust and absolutely loved it! She also loves having aunt Robyn around. :)

Mike had to come by after work but he was there in plenty of time to help the girls use up their tokens.

Rare smiling moment! She had a hat on but she doesn't like to wear them. She thinks bald is beautiful and doesn't mind being bald at all!!

Last Day of Radiation

The last day of radiation was a big day for Rachel. Anna and mom came up to go to her graduation ceremony and we worked it out that Penny could come too. Emily had to stay outside and one of Rachel's nurses stayed with her. :( They wouldn't let her in because of hospital policy. It was a really nice day for us and we are so thankful that Rachel was able to do it.

We had lots to carry in with us. We gave a basket of goodies to the staff and we brought butter braid and fruit for everyone in the center. It's tradition to bring food for your last day.

Rachel has pretty much stopped carrying around Sweetie and Hippo. Now it's lipstick. The radiation therapists gave her a whole pack of lipstick the day before and she had to carry every lipstick with her. She's such a pack rat!

Getting her vitals done. She's really good at it. She tells the nurse where to do it and she knows what comes next.

Last day for anesthesia for a while- YEAH!! She got so use to getting her port accessed that she helped with the procedure. She would hold up her shirt and try to help remove the emla cream from her port. (the cream numbed the skin so it didn't hurt when the needle went in)

Cynthia and Dr. Porsche did the anesthesia on the last day. Rach liked both of them a lot.

This is Marge. Her husband was a patient at the center. He was getting radiation for Prostate cancer. Marge and I would sit and visit for at least an hour everyday while they were both getting radiation. It was nice to have someone to visit with. Thanks Marge. Hope all is going well!

This is her team for the last day. The team would change daily and they were all wonderful. As you can tell, it takes a lot of people to run the machine and take care of the patient. They gave Rachel a certificate that said she could now officially say "all done" since she would always tell them that while they were trying to get her to sleep and she didn't want to do it. They also gave her balloons and lots of presents. She also got to keep her mask and molds of her brain and spine they used for the plates- they're pretty cool.

Rachel got to hit this gong when she was done. It was pretty emotional for all of us. She was still pretty out of it from anesthesia so I had to do it. I have a video of it but I can't get it to post. :(

Emily chilling outside.

Houston Zoo

When Becky and Sony came to visit we decided to go to the zoo again. The girls had a great time and I think Becky and Sony did too!

Vsiting Kemah

On the last weekend that we had before we were done, mom came to visit and we decided to go to Kemah. It's a little town by Galveston that has a boardwalk. We had a great time riding the rides and eating some seafood. Mostly Mike and I rode the rides because Rach was too tired and Em too little.

Wishing at the fountain

The Proton center had a large fountain in the waiting room. Everyday Rach had to throw money into it so we taught her how to make a wish. We told her to kiss the penny and say better. So she would kiss her penny and say better before she tossed it in. When we would leave she would say "bye money", "bye water". It was really cute!!

Random pics from the apartment in Houston

I had these pictures and they were too cute not to share!

This is a monkey that Rachel got at the Proton center. Everywhere we went in the hospital she got a new stuffed animal of some sort. She liked to walk around with this monkey around her neck. We named it Iowa because of it's colors. What do you think uncle Trav?


Playing with Emily and her purse. Emily wants to play with whatever Rachel is playing with.

The last night we were there we decided to bbq and light a fire in one of the firepits between the ponds. Becky and Sony were there visiting and her friends Laura and Philip came over to join us. We had a great time!

Emily kept trying to jump into the fire. She was a handful that night!

We made smores and Rachel wanted to help with the marshmallows. She didn't eat much of them though.

Emily goes and goes until she passes out!

The girls love playing with Sony.

We're Home- YEAH!

I have lots of pictures to post but I'm having trouble doing that tonight. The video I have of the last day doesn't seem to want to load so I'm working on it. Rachel's last day was Thursday. It was both an exciting and sad day. It was sad because we got to know some great people at the Proton Center and it was hard to say goodbye to them. But mostly it was overwhelming. We've been waiting for this for so long it doesn't seem real. Rachel first started showing signs something was wrong in Oct. 2007 so this is pretty much all we've known for 2 years. Today was the first day back at the house and it felt so weird to not have anywhere to go. It's finally getting cold.:) We just hung out at the house and enjoyed the weather. The girls are so excited to be home. Rach is slowly getting some energy back. She's still having rough nights and we're hoping that will pass soon. I miss getting a good night's sleep! I think she does too. She is done with everything so her hair should come back pretty quickly and we're expecting to see a burst of energy. I have big plans for finally trying potty training before the year is over and we have to tackle eating. There's not a manual that we can read on how to wean her off of the feeding tube. I know it's going to take time and lots of patience. As of right now, Rach will nibble here and there but mostly loves condiments- we have a long way to go!! I'm just going to have to keep reminding myself that the G-Tube was necessary to get her to this point and it's worth the trouble it's going to cause us now. So far, Rachel is still waiting for us to take her to another appt. She told me yesterday she needed cream on her port before we left for the store. I told her she wasn't going to be getting poked so she didn't need to numb her port. We laughed about it but it's pretty sad that she's so used to it that she tells us to do it. :( So glad it's all behind us!! I promise I'll post the pics from her last day up tomorrow but for now I'm going to bed.

Are we really done???!!!

Visited with Dr. Woo today and he informed me that Rachel will get her last radiation treatment on Thursday. It was a complete surprise to me because last week he told me he felt like he had to keep going as planned. He said that he has studied her scans over and over and he's torn about what to do. (This was not very comforting to hear!) He feels like she may not need as much radiation as her scans tell him she needs. Her kind of cancer is suppose to be aggressive and hard to control but in Rachel it has grown slowly and been under control for 2 years. He said that he decided to look at the whole picture and give Rachel a chance at less radiation and damage because she has done so well. He thinks that her cancer might be taken care of but doesn't know for sure. If he gives her brain heavier doses of radiation at this point, he will cause her severe cognitive damage and he wants to save her from that. As of Thursday, she will no longer get chemo or radiation. We just watch and wait to see if anything happens for the next year. That's the plan from the top dogs of cancer care??!! I'm excited and scared at this point. We are hopeful that it's all been taken care of but only time will tell. I guess this is all good news just trying to wrap my mind around it. Thanks everyone for the prayers- they're obviously working! Please keep it up and pray that this can all be behind her and she can be a normal healthy kid! :)

No more hair for a while

Rachel has lost almost all of her hair again.:( It started to fall out last Tuesday and there's very little left behind. She's been more tired lately and her scalp is getting a tan from radiation. She had her weekly visit with the radiation doc today and he's going to keep hitting her system with as much radiation as possible. She'll be here until the day before Thanksgiving finishing up. The idea is to get as much radiation as possible into her system to make sure everything's taken care of. We were hoping for less time but we want for it to get rid of everything so this is what has to be done. Rachel is still handling it pretty well so we can't really complain.

Having fun at home

The girls loved getting to be home for the weekend. Emily was just starting to crawl when we left so it was like a totally new playground. She was into everything! She's pulling up on things now and she also decided that she likes to climb the stairs. That was a little scary for us but not her. She's going to be our wild child!

Halloween

For the first time in a month, we went home last weekend. Rachel feels very tired from her treatments so she spends a lot of the weekend sleeping or laying around. She slept most of Halloween day but she was ready to go "trick or treating" by the evening. She had a great time and really enjoyed herself. She even said "trick or treat" some of the time when we knocked on the door! Emily loved her costume and just liked being out and about in it! She still doesn't have any teeth so no candy for Em!