Monday, January 30, 2006

All clear!

Today I had my first mammogram in almost a year. I had the first one in February of '05 which was the start of my whirlwind diagnosis and treatment. Since then, I have had many a test, but no mammogram. Now that I am on a maintenance program, I have had my first maintenance mammogram! It was clear as a bell. My surgeon told me I was a "miracle girl!" He was very pleased with the results, of course, and had no new course of treatment for me. I will see him again in 3 months.

My dad got to go with me to my appointments this morning. He came down for a wonderful visit this weekend and extended it to make this appointment. The rest of my family would be quite proud of his presence because each time a doctor or nurse would ask how I was doing, I would say "just fine!" and dad would say, "now, Jess, your feet have been hurting..." Which did prompt some good advice: lots of fluids, good shoes, and checking my feet often for cuts, etc... Dr. Euhus said that taking Taxotere (a chemo drug I once took) affects your nervous system for years to come and thought there was a connection to my feet tingling and numbing a bit with the Xeloda... so, it could be the chemo drug's long term affects.

My feet have benefited from a week off the Xeloda. I started up again today. I will have some more tests next month that might mean an adjustment of the medicines. For now, I will deal with the minimal side effects of this one. I'll take hurt feet over nausea any day of the week!

My hair is growing back, albeit very curly. I have to be thankful for any hair at all, but I do wish it would relax a little. It is quite soft and thicker too. Jadyn told me the other day during one of her nicer moments, " Mom, your hair is so pretty!" ...Then, she screamed at her sister, "Stop touching me!"

Life goes on... :)

Sunday, January 29, 2006

Our Little Ballerina

It's been almost a week since my last post. The long wait is courtesy of a four-day long migraine that is just starting to dissipate tonight. Thankfully I was able to make it through Thursday and Friday at school-- I really need to save my days for when Jessica and Jadyn have medical appointments. In fact, Jessa has several things going on tomorrow and I am taking the day off because of it. She is having a mamogram, two medicines in an infusion, and meeting with Dr. Euhus. I'll be watching the kids because it will be basically an all-day event for her.

Jadyn has been moving around really well. This is pretty amazing because she has no mobility in her legs or hips except for being able to bend one knee (the other one is casted). Imagine my surprise when I came home from work last week and I see Jadyn fully clad in dress up (a cheerleader outfit and a garland in her hair) twirl once and then walk toward me. She is now walking around completely unaided. While delighted that she has found a way to do the near impossible we are going to call the doctor tomorrow to see if she can continue to walk like this and not damage her hip.

We stopped co-leading a college bible study in December, but didn't start up anything new until tonight. I am really surprised that we are doing what we are doing. Back in December I told Jess that God gave me an idea but she would really hate it. She began to be really excited (a very unusual reaction I thought) and told me that she had an even worse idea that God had given her and I would hate even more than she hated mine. The thing is we both really like doing college group, but here's the thing: God gave us exactly the same idea and it involved stopping leading our college group. Our church has been doing more and more adult life groups (Sunday school groups that don't meet on Sunday mornings), but no one has done anything for kids. Tonight Jess and I did our first life group for our kids and two other sets of kids. It went very smooth and I am very thankful Katelyn was able to be a part: she was a HUGE help. As usual God has proven again in our lives that "He has an even better idea."

Saturday, January 21, 2006

Injured but not d'feeted

Last night while playing outside Bryn badly bruised her foot. Katelyn was playing soccer while I was playing tag with Bryn. Katelyn kicked the ball at Bryn wanting to play with her and Bryn tripped over it and injured her foot. We're very thankful that it's not broken but Bryn will have to wear an aircast for a couple of days.

There's good news on Jessica's feet however. Today was the first day in a week off of chemo, and her feet immediately stopped hurting.

Double Casted Posted by Picasa

Thursday, January 19, 2006

When I grow up

Jadyn's cast off appointment has been made for Feb. 20th. We found out today that she will stay in the hospital for at least 2-3 days for rehab to get full range of motion back on her hip and legs. We recieved no rehab for her last cast, so I have no idea what to expect. However, we are now counting down the days until the 20th ( 38). Jadyn is doing great during the day. She is still having some issues at night; but they, too, seem to be getting a little better.

Last night, Jadyn and I were laying in her bed talking. I asked her what she wanted to do most when she got her cast off. She asked me, "now or when I grow up?" I started with now. She said she wanted to do gymnastics. I asked her what she wanted to do when she grows up. She said she wants to be a teacher. (No surpise there, she's surrounded by us!) I asked her what kind. She said she wanted to teach about insects. I told her that would be a science teacher like her Aunt Sarah (Jake's sister). She said, "Yes, just like her." I love to hear all the girls talk about what they want to be when they grow up. If you ask Jake, he will tell you that I still talk about what I want to do when I grow up too!

On a sad note, my feet were hurting a lot today. I will be thankful to have a week off the medicine as of Saturday. Thanks for your prayers.

Wednesday, January 18, 2006

Four to go, make it five

We've been counting down the weeks until Jadyn gets her cast off, but hadn't officially got her appointment. Turns out it will be a week later then we thought it would be. We've made it two weeks, so we have five more to go. Every day gets easier though. This week Jadyn and Bryn have learned to play together again. While the three of us put together a puzzle on the floor, Jadyn was on her tummy so she could reach the pieces. Bryn could have reached the pieces just fine sitting up, but she wanted to get on her tummy just like Jadyn. They do still fight more than they did before the cast, but last night as they were going to sleep I overheard Jadyn tell Bryn you're my best friend.

Jess heard from the doctor about her feet. Since her feet hurting is a side effect of the oral chemo, Dr. Haley told her she could stop taking the medicine. However, since she would stop taking the medicine anyway on Friday (for her week off), Jess is going to tough it out until then.

Sunday, January 15, 2006

Thank you MarDock family! Posted by Picasa

Build a Bear Fun!

Today was a great day. We have been attending Saturday evening services now at our church, so our Sunday turned into wonderful (and much needed) family time. We took our time getting up, watched a movie and then headed to the mall. You might think that there is not much relaxing about going to the mall with three girls (one in a big wheelchair!) but we had a purpose. A precious Wood family gave the girls Build A Bear gift cards as a Valentine present. We headed straight for the store and had a blast. Each of the girls picked out an animal: Katelyn a boxer dog, Jadyn a Valentine heart bear, and Bryn a cuddly bunny. They got to put a heart in their animal, stuff it, give it a bath, pick out a fun outfit with accessories, and give it a name. They loved helping each other pick out just the right things for their new pet. We had a great time. Jake only got claustrophobic during the last few minutes and had to step outside as a birthday party was forming and it got quite crowded! We ended the afternoon with lunch at Johnny Rockets. It will be a good memory for us all.

I might be having a new side effect from the medicine I am having to take. Every once in a while, my feet will be very sore and it is painful to walk. It has happened just a few times, but it has made me remember to pray for that side effect to minimize and also to be thankful for the majority of times I am walking pain free! I will ask the doctor about it soon.

Saturday, January 14, 2006

No Nightmares

The night before last Jadyn woke up in the middle of the night again. She was dreaming that a dog was biting her. Sherry (Dr. Johnston's wonderful nurse) told Jess over the phone that nighttime is often the most uncomfortable time for those in a spica cast. She said that most kids have a favorite sleeping position as they sleep and obviously that can't be done with Jadyn's type of cast. However, last night Jadyn had not trouble sleeping-- no nightmares!

Right now Jadyn is getting her toenails done again (good idea Aunt Janette). We have discovered lots of things she can do: tv, tv, and tv. Just kidding. Yesterday, when they were getting out of the car, Jadyn figured out how to unbuckle her multi-buckle car harness and "sat up" (as much as possible on her own). She also discovered legos-- which a kind person dropped off for her. She, Jadyn, and Katelyn all had fun making things. The neatest thing was when it was time to clean up. Jadyn scooted herself around picking up all the pieces. She went to the indoor playground at the Parks Mall and had fun playing with the kids. I guess there's not much a smart and determined child won't overcome.

Thursday, January 12, 2006

Mommy I'm Stuck

Jadyn manages to scoot and wiggle herself off the couch and land on her feet. She was so happy with herself she started giggling. Then she yelled, "Mommy, I'm stuck!" She also has like being on her stomach better now. I don't know if it counts as crawling, but she raised herself up on her hands and flopped forward a couple of inches. Tonight when I put the girls to bed, Bryn wanted to sleep with "Mary." Mary is a doll that has the same cast as Jadyn. A nurse made it for her, and Jadyn colored it pink when the plaster dried. Anyway, when Bryn asked to sleep with her Jadyn told her that it wasn't a good doll to sleep with since the cast part was hard. Bryn our two year old comedian pressed it closs to her as she pretend yelped, "Ouch!"

Jadyn still gets angry fits when she gets frustrated with being in the cast, but they are less often. The worse thing has been nightmares. I got up three times last night and Jess one to tend to her as she screamed and flailed her arms. Katelyn used to have nightmares a lot, so I brought her in to pray along with me over Jadyn, but Jadyn didn't want us to. I'm going to be sneaky and pray over her after she goes to sleep.

With all the commotion over Jadyn, I haven't talked about Jess in a while. Her hair is coming back thick and curly. Normally, a person loses hair in the process of brushing or shampooing but her hair just doesn't come out. Jess asked me to pull out one of her hairs to see how long it was and I couldn't do it. It's like their superglued to her scalp. She started back on chemo this week and it has been easier remembering to take her pills at night because we have been staying home. Every three weeks she takes Hereceptin through her port (which is infection-free) and every two weeks she takes Zometa (which helps with her bones) through her port. Her next scan probably won't be until next month, but she will have a mamogram the next time she goes to the doctor (Jan 30th). The thing she needs most right now is prayer.

Tuesday, January 10, 2006

Jadyn playing with her Leapster (thanks Aunt Janette) Posted by Picasa

5 more weeks to go

Since we made it throught the first week, Jadyn has five weeks left to go in her cast.

I put another picture of Jadyn so you could see that she does indeed have two legs-- several you pointed out that you couldn't see the other leg in the other pictures.

Jess has been hesitant about taking Jadyn taking places, but it has worked out pretty well before. Jess took her to MOPS (Mothers of Preschoolers) where Jadyn was able to into the baby room instead of kids her age. This worked great for Jadyn who does not like getting bumped in her cast which would have happened if she was with kids her own age. Jadyn liked being in there and Jess said the babies crawled up to her wheelchair to see her. The neatest thing that happened though was when Jess took her with a playgroup to a park playground. Jadyn giggled as she enjoyed watching the other kids play on the playground. Then she asked Jess to push her over to the playground, so she could be closer to the other kids. The ground was the spongy, rubbery stuff (not wood chips), so she was able to get there with ease. The other kids went right to her. Then the kids decided to play red light, green light with Jadyn. Jadyn got to be the one to say red light and green light. She loved it. After that she still found a way to be involved by doing things like giving kids high fives as they went down the slide. There are two things that touch my heart about this: one that Jadyn could play could be a part of the other kids playtime and the second is that they welcomed her.

Thursday, January 5, 2006

Jadyn going for a ride before we got her wheel chair Posted by Picasa

A sleeping Jadyn getting covered up after getting her cast on (it goes all the way up a few inches past her belly button) Posted by Picasa

Jadyn on her way to surgery Posted by Picasa

Home from the Hospital

Well, the last twenty-four hours have not been what I planned, but on the other hand a lot has gotten done. I was planning on taking Jadyn home from the hospital last night. We got the OK from Dr. Johnston, but one thing kept us from leaving. After the nurse took Jadyn's catheter out, she said the only thing left was for Jadyn to go pee. After a few hours of not being able to go pee impatience turned into worry. Jadyn started crying because she couldn't go home yet. Then Jess started crying when she realized Jadyn wasn't going to be able to home that night. Jess ended leaving late that night to go spend the night with Katelyn and Bryn (two nights on a fold-out chair hadn't been good for her back). A very unhappy Jadyn fell asleep about an hour after Jess left. I stayed up watching the UT-USC game, but Jadyn still hadn't gone pee when I fell asleep right after the Longhorns won about 11:30. The nurse woke me up about midnight saying that there is a 10 hour time window from the time they take the catheter out until a patient uses the restroom. If it doesn't happen the catheter has to go back in. The first time it was put in while Jadyn was under, but it would not be the case this time. We had two hours to go. I tried to get her to drink more and ran the water in the sink. Jadyn was awake again and very unhappy again. At two the nurse came back and said she would have to put the catheter in. I asked her for some chocolate milk (which Jadyn said she would drink) and when she brought it to me she said she would give us a little more time. At three the nurse came back along with another nurse to help her put the catheter in. Jadyn had gone a teensy bit, but not enough. Jadyn requested white milk (another stall tactic and one I was thankful for). Finally, just before the absolutely had to put the catheter in Jadyn went pee. The trick that did it? I read Jadyn a story and before I turned each page she had to try and go pee. Jadyn didn't go to bed again until after the nurse gave her medicine at four, but when she went to sleep I was a very happy daddy. Jess called about eight and told me she couldn't hear me very well because my voice sounded funny. I guess a lack of sleep will do that to you. Jess had a treatment in Dallas (a herceptin treatment) the following morning, so picked us up on the way home. We found a minivan (thank you Uncle Mike), so as soon as we got home I put Jadyn on the couch and Jess stayed with her while went with Mike and picked it up. It took about two and half hours (maybe three) to get to Temple. By the time we signed papers and other stuff it was 6:30 when I got home. From there Jess and I went to Car Max to sell our car. It took a little longer than I thought we were done about 9:00. I've very much rambled, so here are some things I have left out. Thank you very much for praying for the right car, I believe we very much got that. It's a green 2000 Oldsmobile Silhoutte with 50,000 miles. Jadyn will be able to very comfortably fit in the middle row with her parachute-like-harness lying down and Bryn and Katelyn will have plenty of room in the back seat. It also enough room in the back for Jadyn's reclined wheel chair. The wheel chair was a huge blessing-- they didn't have one in her size until someone brought one back the day we needed it :)

Tuesday, January 3, 2006

Jadyn's surgery

Jadyn's surgery went really well today with no complications. Her cast is a pink one. It starts a few inches above her belly button and goes down to her legs. On the left side it streches all the way to her ankle and on the right down to her knee. Her legs are spread apart with a bar joining them. Her permanent position is practically laying down; it's very similar to lying down in a recliner. She was pretty sleepy for several hours after surgery, but after that she wanted to watch some movies, play cards, etc. Her attitude was an answer to prayer. The first time she had her hips worked on two and half years ago she was furious and very, very upset after she woke up from the anesthesia.Jess is spending the night again there while I stay home with Katelyn and Bryn tonight. I've taken off work the rest of the week, so I should be able to help out quite a bit with Jadyn. We took some pictures of Jadyn which I am hoping to post on the blog tomorrow night. If you're in a praying mood, please pray that Jess and I buy the right minivan soon.

Monday, January 2, 2006

Surgery Tomorrow

Without using words, Jadyn told us she is scared of having surgery tomorrow. She didn't eat breakfast (which she always does). She didn't want to do "homework" (doing reading or math in a workbook) which she always wants to do in fact I have to tell her "that's enough now" or she'll want to do it forever. Last, she didn't want her hugs tonight before bed. That's when she asks for three different types of hugs like a bubble hug or a butterfly hug. In fact she wasn't herself all day. On the up side she was very excited about her room at the hospital. It's not often that she gets her own room complete with phone and bathroom. Jess and Jadyn are spending the night there tonight and I and my mother-in-love will drive to Scottish Rite Hospital tomorrow morning in plenty of time for the surgery at 12:00. Jadyn's room is 307.

Sunday, January 1, 2006

Happy New Year

We have a busy week in store for us. We have been looking for a minivan for the last two weeks, but haven't found the great deal we're looking for yet. Time is running out so we plan on getting one tomorrow or the day after. Jadyn's surgery is Tuesday at noon. In order to fix her hip socket they are doing some darn right crazy things this time. The surgeon will cut the lower portion of her socket in half vertically and wrap around the leg bone. Then he will take off the top half of the hip socket and use it as a wedge in the middle to keep it in place. Amazingly, Dr. Johnston said it will be fine after 6 weeks in her spika cast. We are checking in at the hospital tomorrow night. Her surgery starts at 12:00 and will be finished about 3 (the surgery itself will be an hour and a half).

Even though 2005 was the hardest year of our lives, it has also been the most amazing. I'm excited about this coming year. Right now I'm thinking how in the world is God going to get us through 2006 and the coolest thing is that even though I don't know how-- I know he will. God bless all of you.