Happy Halloween

http://sendables.jibjab.com/view/cQT38nDTeiaeCXoQ


I made this card from a site that my cousin Jess sent out with her son in it. I thought it was so cute so I put my girls (Rach is Frankenstein) and my nephews and niece in it. Happy Halloween. :)

Update

I had a harder time finding time last week to post. Michael went back to San Antonio for the weekend to catch up at work so I had to do Rach's appointments by myself. Michael's mom, Penny, has been staying with us to help with Emily. We're so lucky to have her because I can't take care of both girls right now. Due to the swine flu, Emily is not allowed at any MD Anderson facilities at all. Penny keeps her for me so I can take Rach back and forth. We've been lovingly and jokingly calling her the "granny nanny" because she does laundry as well! :) Emily is crawling and pulling up on everything so she wouldn't be very easy to take to the appointments anyway- it has worked out great having Penny here!

Rach is on her 3rd week of radiation. She has had 10 doses so far. This weekend was pretty eventful! The Oncology nurse called on Friday to tell us Rach needed a blood transfusion but they couldn't get her in on Friday so we had to wait for Monday. It's a pretty standard thing for cancer patients to need transfusions due to the harsh drugs in their system but Rach has never had to have one this whole time. Saturday she was very pale, lethargic, and vomitted more than usual. We thought she just needed blood so we took her in to the emergency clinic at the hospital to get her some. Turns out it was just the side effects from the radiation- it's pretty hard on her system! Her blood count came up on its own so she didn't need blood after all- YEAH! Just wish we didn't have to sit in the ER for 3 hrs to figure that out. We told Rach she has super blood because she always miraculously rebuilds her counts on her own. Don't know if she'll be able to keep it up with the radiation but we're greatful for making it this far without any transfusions. :) Having the weekend off from treatments helps her get strength and her body has time to recover some.

I am very worried she's about to lose her hair. :( She is shedding pretty bad right now but so far she doesn't have any bald spots. I know that there are worse things that could happen right now but it isn't fun to shave your daughter's head- this will be the 3rd time to have to do it. We have an MRI on Wednesday to see how everything is responding so I will make sure to post those results. We are very hopeful things are working. :)

Weekend Visitors

Mom and Dad came to visit the weekend before last. We had a nice relaxing weekend here in Houston. We decided after the first weekend away when Rach got a fever that we needed to stay put so the fam has been coming to us. They brought us a poster made by a group of people at the church who held a rosary in Rachel's honor. Mom said there was a big turn out. We are really blessed to be part of such a wonderful church community. Thanks so much for all of the support and prayers- we really need them! Also, thanks for the colors and coloring book- Rach loves them.

Anna and the kids came to visit this past weekend. Michael came back with them. He had to go to work last week so he came to visit. We went to the aquarium with the kids and the park on Sunday. It's lots of work taking them places but they all had a great time and it makes it worthwhile when they enjoy themselves. :) If you click on the picture you can view the album at your own pace.

Trip to the Houston Zoo

Rachel's schedule is finally less stressful! She only has radiation in the mornings and the rest of the day we are free to do whatever with her. She's got clinic on Wednesdays but every other day we're done by 11. We're trying very hard to keep her awake during the day since she sleeps all morning. The first few days she would wake up all hours of the night and that was hard on everyone! We're staying in the city so we are just minutes away from a lot of cool attractions for kids. We we went to the zoo on Friday afternoon- the weather is finally cool enough to go out and the girls had a blast. :) As you can see in most of the pics, Rach wanted to run around and be out of her stroller. That's a huge step for her!!

Trip to Galveston

Yesterday we went down to Galveston. It was only about a 45 min. drive so we decided to get out. Penny had an errand to run there and we thought it would be a nice trip for the girls. We didn't go swimming or anything just took some pics by the water. It was a much needed break away from the hospital!

Breathing Treatment

Rach gets a monthly breathing treatment with Pentamadine. It's an antibiotic to help prevent infections and they give it to her orally this way. I had to take some pics yesterday because they did it in this room they call the rocket because it looks like the inside of one- it was a pretty funny looking room. Rach was a good girl for it. She just said all done over and over the whole time it was happening. Michael went in there with her so he had to wear a mask.

Pictures of the apartment

Here are some pics of the apartment. It's pretty nice with all of the landscaping. We even have a lake outside our back porch and window. The location is great because we only have to travel about 1.5 miles to the hospital. The apartment is spacious and comfortable for us so it's made passing the time here better. I didn't post a pic of "Emily's room" because I forgot to take one. She's staying in a very large closet in our bedroom. She has a crib in there and she loves it!

First Day of radiation

Today was the start of radiation. Despite her fever this weekend, they decided to go ahead and start her treatment as planned. I didn't get the chance to post yesterday but she had to go in to the clinic because they discovered a possible bacterial infection in her blood culture from Sunday. She has to get rocephin by IV for a few days to take care of it but they're not overly concerned about it because she's doing fine now. Tomorrow we should find out exactly what the bacteria is. This does mean no swine flu- yeah! Radiation went well for her. We got to stay with her until she was out and then we saw her when she was done. The process takes about 20 min. but with the anesthesia it stretches her time to about an hour. The recovery room has very comfortable warm beds so Rachel does not like to wake up. I think she'd sleep in there all day if we didn't come in and wake her! She was pretty crabby for a while afterward but she's doing fine now. It's just going to take her a little while to adjust to getting anesthesia everyday. She also had to go to clinic and the audiologist today so I understand her being so cranky! It would be nice to just have one appt. a day.

This is Rach getting her vitals done in the playroom. She's really good at it. She told the nurse, "right here leg" when she went to put the blood pressure cuff on.

This is her in the actual proton radiation machine. If you want to see it in action there's a link on the side of the blog. It's an amazing piece of equipment.

The recovery room. The hose blows warm air into the blanket and the bed is nice and toasty-

I'd love to crawl in there with her!

Crazy Weekend

This weekend was a whirlwind! We went to College Station on Friday. It was about a 2 hr. drive. Michael went to the A&M game on Saturday and I drove to New Braunfels for a funeral. We lost a close family friend, Nancy Baese, to Leukemia. It was a very sad funeral and Nancy will definitely be missed. After the funeral I drove back to College Station with plans to stay for the night. Rachel started to feel bad yesterday and had a fever by the time I got back so we packed the car and had to bring her back to Houston in case she needed to see a doctor. Her fever responded to Tylenol and went away. Today she had it again so we had to take her in to see the doctor at the Emergency center. They had to take a blood culture from her port to check for infection. Her ears and throat looked ok so they can't really figure out what's wrong. They gave her some IV drugs to fight any possible infection. They also tested her for H1N1 because it's been going around. We have to put her on Tamiflu just as a precaution. She doesn't have any flu symptoms except for fever so we don't think she'll have it. We have to wait 2-3 days to make sure. The ER visit wasn't bad because they have a pretty efficient emergency room system at the hospital. We waited 5 min. to go back and the doctor that treated her was a pediatrician from her clinic- that was very comforting!! They knew what to check for and treat and we were out of there in 3 hours- that's the fastest ER trip yet. She seems to be doing better now. We just have to watch her fever closely. As long as she doesn't have fever tomorrow she will still start radiation on Tuesday. She can't have the anesthesia she needs if she's sick so we'd have to wait it out. Please just pray that her fever subsides tonight.

Killing time at the hospital

These are some pics from the hospital. Rach loves to walk the halls in her stroller while we're waiting for her appointments. This hallway has a great view of some of the other buildings. We're in the Texas Med Center and it's huge!! MD Anderson itself is made up of several buildings. Rach likes to look out the windows and watch the cars go by. In the first pic she's talking on the phone to her papa.

Rachel is 3!!

Rachel turned 3 on Friday! :) We were so excited that she didn't have any appointments and we could take time to enjoy the day. She was pretty tired and didn't feel like doing much. We drove to Michael's grandmother's house in College Station and had a nice dinner and a cookie cake. The cake was for Penny as well because her birthday was last Sunday and we travelled here that day so she didn't get much of a celebration. After the cake and presents, Rach went to bed early because she was so tired. I was thankful that we had her party early.

Kids Have Cancer Too!!

Today was another day filled with appointments! I'm hoping things will be more calm next week when we start at the Proton center. If you're wondering about my headline it's because I have been feeling a little irritated this week when we're in the main hospital. MD Anderson is huge and full of cancer stricken adults but not a lot of sick kids. The areas that mostly service the peds patients are awesome and I can't say enough good things about them. However, the areas that are not use to dealing with the kids are not good at dealing with them!! We have had to wait at least an hour for each of her appointments- no toys or explanation as to why they're making her wait. By the way we had to starve her on Mon. for her MRI for 5 hours and they gave us a pager so she could cry somewhere other than in the office that was delaying her test. Today we were told that she could not sit in the waiting room where her appt. was because she was a kid. We said very loudly that she was the patient but we did leave. Needless to say, the pediatric clinic is not happy with what's happened to us. For all of you who think only adults get cancer- you're wrong!! With all of this flu business going on the adult patients have decided to try and make the kids as isolated as possible. It's definitely unfair because the kids have the same compromised immune systems they do. Sorry not trying to get on my soapbox but it's really been on my mind this week. I will be contacting the patient advocate to make sure Rachel won't be thrown out of any other waiting rooms because of her age!!

Enough complaining. Today Rach saw the eye doc and her vision is good. I was worried because her hydrocephalus can cause some vision problems. We also got to meet with her pediatric oncologist and nurses and we like them a lot. The nurse had a Hello Kitty scrub shirt on so Rachel immediately loved her. :) After her appointments we decided to get out and do something in Houston. We went shopping at the Galleria and ate at the Rainforest Cafe. We met up with Michael's aunt Pat because she was in town and had dinner with her. Rachel was tired so she had a hard time enjoying herself even with all of the animals around her. Emily is finally old enough to pay a little attention to the animals- she absolutely loved them! I have pictures but I'll have to post later.

We're in Houston!

Things have been pretty crazy here since we left on Sunday. We have a nice apt. for our stay here in Houston. I will definitely post some pics of it later. We have had 2 rough nights due to the girls. Both girls had a rough night the first night but Emily did well last night. Rachel had a horrible night last night because we kept her port accessed (left a 1 in. needle taped down on her chest so she could have IV access today) and everytime she rolled on to it she woke up very upset. We probably got about 4 hrs. of sleep last night. Hopefully tonight will be better- I told the anesthesiologist we won't be leaving her accessed again!

Yesterday Rachel had an MRI. It was a very long day to say the least. Her scans showed no significant change which is good. Today we are at the proton center and she is getting a stimulation right now to get the machine ready for her. It takes them a week to prepare everything for her to get her radiation. She has a mask and a bean bag that's molded to fit her legs. They try to make her as comfy as possible. We really like the anesthesiologist here because she's all about making this experience enjoyable for all of us. The childlife specialist here has great toys and they've done a good job of entertaining her today between appointments.

We met with the radiation oncologist today. He joked with us that Rachel doesn't make any biological sense but it's really worked out in her favor! He said that her kind of tumor is typically very aggressive but Rachel's hasn't been. Originally he wanted to give her the max dose of radiation she could get but now he doesn't know how much she'll need because her cancer might respond better than originally thought. He has decided that he can't come up with a concrete plan for her treatment (that's always been the problem with Rach) so she is going to get 20 doses of radiation & then he's going to do an MRI mid-treatment to decide where to go from there. He is hopeful that she's going to benefit from it but of course nobody knows! We feel good about our meeting with the doc this morning because they are hopeful and excited about how well she's done. When we told the anesthesiologist she had PNET and we've been at this about 2 yrs. she told us we are extremely blessed to still have Rachel! She also told us that we need to share Rachel's story because it proves that miracles do happen for cancer patients. We couldn't agree with her more!

I'll post some pictures up later. Just wanted to let everyone know that we made it and what's going on.

Update

I had lots of pics to post today so I used Picasa to upload most of them. To view the albums just right click & open in another window. Things have been pretty crazy in the last few weeks because we've been trying to get ready for our 7 week stay in Houston- we leave on Sunday. Emily and I also took a quick trip to Kansas to meet my new nephew, Bryson. We had a great time and I will try and post those pics soon. I am also planning on updating the blog more frequently while we're in Houston to keep all of you up to speed on what's going on so check back often.

Rachel's Surgery

On Sept. 19th Rachel had a minor surgery. She got her medi-port put back in. :( She needs it for easy IV access for radiation because she will have to be sedated everyday. We are heading out on Sunday so that was one of the last things she had to do at Santa Rosa. We're going to miss the staff there, they have really become like family! We even know the lady that runs the coffee shop at the hospital entrance. We'll be back there in December so we won't be gone too long. We got a bunch of pics before she went in and she got very loopy after they gave her some meds to relax her. It was pretty funny to watch but I won't post that video!

Rachel's Port Surgery

Emily at 7 months

Emily has been growing like a weed! She's into everything these days. She's crawling and starting to pull up on anything she can hold- here come the bruises! I had to take her to the doctor today because she had her first ear infection- well she actually has an infection in both ears! :( She's been handling it very well though. Rachel was very jealous when I gave Emily her medicine. We're definitely worried about her being a future drug addict!

Rachel's Birthday Party

We had Rachel's birthday party on Friday night. We kept it small because she doesn't like crowds much. She did awesome!! She really got into it. We had a Hello Kitty theme because she chose it- I don't know why! This year she opened her presents and enjoyed showing them to everyone. Last year I had to open all of them! She liked the happy birthday song and the pinata- she even tried the candy! Thanks to everyone who helped her celebrate her birthday a little early. She's going to be at MD Anderson on the actual day.

Rachel's Birthday

Watching the Parade

Last Friday we went to the county parade. The kids got balloons and enjoyed watching the bands and other floats. We didn't make it through the entire parade- it's about 3 hrs. long! But Rach did better than last year. We went with both of our families.

Comal County Parade

Comal County Fair

We took Rach to the county fair where we grew up last week. We went with mom and dad and Anna's kids because she had to work. The kids had a great time and we actually got Rach to ride some rides. She cried at the beginning of almost every ride but she got over it and enjoyed it. it was really fun for us to watch her acting like a normal child and having fun. :)

Comal County Fair