| Weekly Journal |
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| Beginning: In early February 2006 our eight year old daughter, Devan Williams, complained of seeing double. It affected her to the point that she would cover one eye to watch television. Mike, her father, came down to Alamosa from Colorado Springs to visit the children. On Feb. 5th Mike noticed that Devan’s right eye was starting to turn inward. Four months earlier Devan had her eyesight checked and her vision was 20/20 in both eyes. On Feb. 14th she had another eye examination and this time her eyesight was 20/400 in her right eye and 20/80 in her left eye. About a week later I (Becky, her mom) noticed Devan slurring her speech and drooling. A day or two later the way she walked had changed dramatically; she staggered when she walked and constantly bumped into things, mainly walls. On February 22, 2006 I contacted our family doctor, Dr. Michael Ramos (who is in Pueblo) and explained Devan’s symptoms. He had us go to Pueblo the following day for a cat scan. Devan went to Parkview Imagining for the scan. After her appointment I let her stay with her Grandma Angel over night. I had to get back to Alamosa to care for her brother (Cody, 12 years) and sister (Ashley, 11 yrs). Mike picked Devan up from her grandma’s house on Feb. 25th because he was coming back down to Alamosa to see the kids again. When he picked her up and saw the changes in Devan he was shocked and upset; after all, it was the first time he saw her with any of the symptoms (except her eye, but even that was worse). Devan had an appointment with Dr. Ramos on Monday morning (Feb. 27th) so Mike stayed with us until then and he went to her appointment with us. Mike had noticed on Sunday (Feb. 26th) that Devan could no longer pucker her lips. The right side of her mouth seemed to be almost paralyzed. Dr. Ramos examined Devan and he wanted her to have an abdominal ultra sound, and she had blood tests done. Dr. Ramos mentioned that she should go up to the Denver Children’s Hospital to the neurology department. The doctors office was going to contact the Children’s Hospital and then let us know when to take her up there. On the morning of Feb. 28th I took Devan to Parkview hospital for the ultra sound. On March 1, 2006 the neurology department at the Denver Children’s Hospital called and set up her appointment for March 9th. Between the time of the call and taking her up to the Children’s Hospital Devan continued going to school. Her teacher, Ms. Fowler, noticed how fatigued Devan got and brought a sleeping bag and pillow for Devan to take naps. On March 8th Devan and I drove to Colorado Springs to stay the night at her dad’s house. We left early on March 9th to make her appointment. March 9, 2006 Day 1: Devan’s appointment was with Dr. Paul Levisohn in the neurology department. After he examined her, he sent her for an MRI. Devan was excellent during the MRI. That afternoon we met with Dr. Levisohn to go over the results of Devan’s MRI. He informed us that the MRI showed a brain tumor and took us immediately to see Dr. Nick Foreman in the neuro-oncology department. After a nurse took Devan to go to another room to watch a movie, Dr. Foreman took Mike and I to a conference room. Dr. Foreman informed us that Devan has a tumor on the pons of her brain stem. He told us that this type of tumor is only seen in children and is called diffuse pontine glioma and that it is only a matter of time before she dies. He showed us the MRI so we could better understand where the tumor is and why it is inoperable. Dr. Foreman also stated that before he revealed the diagnosis to us he had Dr. Strain (head of radiology) and Dr. M. Handler (in neurology) look at Devan’s MRI, and they concurred with the diagnosis. Mike and I were devastated! I swore the world was crashing in on us. As parents, what worse feeling can you have than being told your baby is going to die!? Dr. Foreman wanted us to go back on the following day to discuss treatment. We stayed in a hotel that had a pool because Devan wanted to go swimming. Unfortunately, we didn’t know that it was an outdoor pool. Mike took Devan swimming, but it was a short swim. Devan knew she was diagnosed with a brain tumor because she was in the room when Dr, Levisohn told us. She didn’t know the full diagnosis; however, she is very intuitive and asked a lot of questions. Due to Mike and I being in shock, we were advised by the doctor not to talk to her about the outcome of these tumors till the next day. We stilled answered her questions honestly without revealing too much. March 10, 2006 Day 2: Also includes day 3 and 4 (March 11th and 12th) Devan and I were both up early, it was difficult to sleep. Devan sat on the windowsill looking outside for quite a while. I went and sat with her. Devan asked if she was going to die, if her brain tumor is that bad. It was time for Mike and I to talk to her. Mike and I sat down with Devan and explained where her brain tumor is and what it is called. We were honest with her about how bad it is, but that no matter how bad it is, she can try to fight it and we will be with her every step of the way. She was pretty upset, but continued to ask questions to try and get a better understanding of the situation. In the afternoon we met again with Dr. Foreman and he informed us that radiation therapy is the best treatment solution that there is for this type of tumor. He also prescribed 6mg of Decadron/day and Zofran (to help with any nausea Devan may experience during radiation therapy). We also met with the social worker, we needed help on how to break the news to her brother and sister. We met quickly with the experimental doctors; we will meet with them again later. We were then sent straight over to the radiation oncology department at the University of Colorado Hospital. We met with Dr. Chen and he explained the radiation therapy to us and informed us that Devan will have radiation treatments 5 times a week for 6 weeks. Then Devan was taken back to get her mask made. The mask is used during radiation therapy to hold the head completely still. The mask cuts down on any chance of the head moving during the treatments and ensures the radiation will hit the correct spots. Without the mask there is a high probability that the radiation will hit the wrong spots in her brain, if this happened it would kill brain tissue quickly and leave the tumor. She also had another cat scan for treatment purposes. During the time her mask was being made, she was told that she could not speak. So she started asking me questions in sign language – the nurses were impressed. When we finished we traveled back to Colorado Springs. Through the help of family members, Cody and Ashley were brought up from Alamosa and they were at the house waiting for us, as was Aunt Jeana, Grandma JoAnne, and Carlos. The first thing we did when we arrived was sit down with Cody and Ashley (Devan too) and explain to them what was wrong with their sister. It was a difficult situation but Mike and I handled it with delicacy and honesty. Until this point in time they didn’t even know Devan had a brain tumor. Devan actually became a support for Ashley. After the conversation, we joined the rest of the family. Jeanette (Aunt Jeana) had bought Devan lots of gifts. Devan was so shocked and happy, it was great seeing her so delighted. We spent the weekend in Colorado Springs. On Saturday Devan spent the day with Aunt Jeana, Cody, and Ashley. She started her Decadron in the evening. On Sunday, Ashley, Devan, and I went to Pueblo to go to church with my mom (Grandma Angel). We then stopped by Devan’s friend Austin’s house, she ended up coming back to Colorado Springs with us so she could play with Devan for a while. Devan and I took Austin back to Pueblo in the late afternoon. They had a lot of fun. Devan seems to be real emotional. We’re not sure if it’s from the steroid or from just being exhausted. Dr. Foreman said that one of the side effects is moodiness. March 13, 2006 Day 5: Cody and Ashley went up to Denver with us this morning. They are on spring break and we thought it would be a great opportunity to let them see what Devan will be going through, and spend family time together. When we got to Denver Children’s Hospital for Devan’s appointment with Dr. Foreman, Uncle Tom (my brother) was there waiting for us. He was able to go into the appointment with us and it was great having him there (he is a comic relief). Dr. Foreman said that her symptoms are about the same as they were on Friday, he also noticed that Devan was getting a yeast infection in her mouth – he prescribed her an antibiotic for it. Before we left the hospital, the staff gave her a backpack that was full of fun stuff and attached to the backpack was a portable DVD player. The people that donate this stuff are awesome! After Devan’s appointment Tom left and the rest of us went on a search for a hotel to stay in (with an indoor pool). Devan has always wanted to stay at a Holiday Inn, we found one and stayed there. Devan did get to go swimming but her energy level is low so we didn’ t do much else. Today Devan has been real moody, guess we better start getting use to it. We started Devan on the Zofran today, but she is only taking half the dose. March 14, 2006 Day 6: Today is the first day of radiation therapy for Devan. Mike and I were able to go back with her while they were getting her set up. First they put the mask on her and after they got it clamped down they asked her if she was O.K. She didn’t answer. They asked again, still no answer. Then I remembered that they told her she was not allowed to talk when she has the mask on, so I asked her to answer in sign language…she was O.K. When the mask is secure they put a box type thing over her head. It has x’s on it to line up the machine. After she was all lined up and in place Dr. Chen came in to check it out and then we had to leave and go back to the waiting room. While we were in the room, Mike and I took some pictures and videos. When she got back to the waiting room she was almost smiling. She said that the treatment isn’t that bad. Let’s hope it stays that way! We switched hotels and Mike took the kids swimming. We are trying to find out about the Ronald McDonald house because the hotels are too expensive. Later in the evening we found out that the Ronald McDonald house will not let more than two children stay there under any circumstances and then we found out that they have a waiting list anyway. Getting Devan to eat has become a chore. Hopefully that will change soon, another side effect of the steroid is an increase in appetite. Can’t wait till it happens. March 15, 2006 Day 7: Devan’s radiation therapy appointment was early today. Leaving Mike and Cody to sleep, Ashley went with us to the appointment. Ashley got to go back to the room and watch Devan get set up for her radiation. Devan is really fatigued today. She is falling asleep whenever she has the chance. Devan started complaining of her jaw hurting, so while we were at her appointment we saw a nurse. She wasn’t sure what was going on so she set an appointment for Devan to see Dr. Chin tomorrow. Devan’s cheeks have slightly puffed out, due to the steroid (another side effect). When I got back to the hotel I talked with the front desk gentleman and explained our situation. They gave us about half off for the next two nights. I really appreciated the help that they offered! We went to the Denver Museum of Nature and Science this afternoon. We rented a stroller for her because of how exhausted she is. We walked around the museum and went to the IMAX Theater. Devan’s favorite part of the whole experience was being able to see the stuffed polar bears. We had Chinese for dinner. Devan didn’t eat much but she finished her egg drop soup. At least something was in her stomach! She talked her dad into taking them swimming again. She had fun but was so tired when she got back she fell asleep for the night. March 16, 2006 Day 8: Devan had another early appointment today and this time we took Cody and let Ashley and Mike sleep. Cody got to go back today and watch. Devan says that Cody is bad luck because as soon as they had her all lined up and ready to go…her nose was itching really bad. They undid everything so she could scratch, since this was the first time that it has happened and Cody was in the room…it’s his fault. After her treatment we met with Dr. Chen. While we were waiting to see him Devan’s teacher, Ms. Fowler, Dee, and Mrs. Gonzales dropped by to see Devan. It was really sweet, they came all the way up from Alamosa to see her and bring her more gifts and money to help with our expenses, I was so grateful! It is so wonderful to see all the people around us that care and support our family through this struggling time. Later in the afternoon we did some running around. We had to go to the pharmacy to pick up Devan’s antibiotic. When we got back to the hotel Patrick Moore and Ricky Ray (friends from Adams State) were there to see Devan. We visited for a while and then Mike took the kids swimming. Before the guys left we went down to the pool so they could say good-bye. I think all the visitors in one day overwhelmed her a bit. When they got back from swimming, she just wanted to sleep. She didn’t even want to stay awake to eat, or go out to eat for that matter. Mike took Cody and Ashley out to eat and I stayed back with Devan. I was trying to get some food in her stomach before she fell asleep. I wasn’t very successful. She did confide in me that she is scared of what is going on with her. I told her that it is O.K. to be afraid and that her dad and I are scared too. I told her whenever she wants to talk about it, her dad and I will talk with her. March 17, 2006 Day 9: Devan, she’s a smart girl, woke up this morning and the first thing out of her mouth was that she had to wear green today. I didn’t realize it was St. Patrick’s Day until she said that. Mike and I talked to the social workers from both the Denver Children’s Hospital and the University of Colorado Hospital and with their help we discovered Brent’s Place. Amanda (the social worker from Denver Children’s Hospital) helped us get in contact with Brent’s Place and they have a two-bedroom apartment for us. We packed up the truck and left this morning to go talk to Brent’s Place. Alison had all the paper work ready and walked us through them, showed us the apartment, and gave us the keys. The staff there is so nice and easy to work with, we are blessed to be able to stay there. Hopefully Devan will be comfortable there, it will be our home for the next five weeks. We then took Devan to her radiation appointment. The first four treatments seem to have gone well, let’s pray it stays that way. The University of Colorado Hospital’s social worker is Michael Martinez and he said they will help us out with food coupons. Even a little bit helps! We headed back to Colorado Springs. Around 6 o’clock Mike and the three kids met with a woman from Make-A-Wish foundation. They learned that the foundation is going to try and send the family to Disney World, Universal Studios, and Sea World. We would be in Florida for about 6 days. Devan is doing well. March 18, 2006 Day 10: Devan informed me that when we go to Disney World she wants to dress up like Cinderella; this way Cinderella will give her a hug when we go. She said she saw it in a commercial, the girl dressed up like Cinderella and the Cinderella at Disney World gave her a hug. I told her that weather she dresses like her or not, I’m sure she’ll get a hug from Cinderella. She said regardless, she wants to dress like her. I told her that I’m fine with that, she can dress as who ever she wants. This afternoon their Aunt Jeana took all three kids to go see Aquamarine. Devan has been wanting to see that movie. She had fun and said it is a good movie. This evening Mike took Cody and Ashley to meet with Libby (she is watching them in Alamosa). Libby took them back to Alamosa so they can try and keep a schedule that is as normal as possible. Devan seems to be in a somber mood, I think she misses them already. She didn’t eat much for dinner, still waiting for that appetite to kick in. After 4 days of radiation, there doesn’t seem to be any changes. Dr. Foreman did say that it usually takes about 2 weeks before changes are noticed. Time tells all. March 19, 2006 Day 11: Jeanette took Devan to Build-A-Bear. Devan didn’t come back with a bear, she picked out a bunny – and it is cute. She even had us sing Happy Birthday to it. Due to winter storms that are suppose to be coming in, we left for Denver this afternoon. Around 6 o’clock this evening we went to Target. As we were walking in to the store Devan was talking and I noticed that her speech has gotten a lot clearer. She is not slurring like she was. She is still becoming tired easily, but that is expected. March 20, 2006 Day 12: Devan’s speech has almost gone back to normal. She starts slurring a little bit when she gets excited or upset. We have also noticed that she no longer slobbers. Even her balance and coordination has improved. Her radiation went well today. March 21, 2006 Day 13: We are finally seeing Devan’s appetite kick in. It seems out of nowhere she started eating more than me. Mike and I are relieved to see her actually consume food! Radiation went well and we met with Dr. Chen today. We asked when we might see her right eye go back to the way it was. He thinks that it will eventually go back, but not until she is near the end of her radiation treatments. Devan is walking real well now. She was able to walk up the stairs without any problems today. Her energy level is higher than what we’ve seen in a while. March 22, 2006 Day 14: Devan is eating very well! She is always hungry now. However, her energy level is back down today, she is falling asleep easily. Even in the truck, she fell asleep almost as soon as we were on our way to her appointment with Dr. Foreman at Denver Children’s Hospital. Dr. Foreman seemed impressed on how well she is doing. He cut her steroids back to 4mg per day. Devan was happy about that! Devan is also taking some herbal remedies, not knowing if the remedies had any side effects with the radiation or medication she is on, we took them to the appointment with us and had the doctor check for us. They are fine to take for now, but if we are gong to do experimental treatment she needs to stop taking them when she finishes with her radiation treatments. This way her system will be cleaned out for the experimental treatments. We meet with Dr. Gore in two weeks to discuss experimental treatments further. Radiation went well. Devan is into puzzles now. She tries to complete one each time we go to the appointments for radiation. Mike picked up some puzzles for her to do at our apartment at Brent’s Place. March 23, 2006 Day 15: This morning for breakfast Devan ate a bowl of cereal, some applesauce, and some yogurt. She eats about every half hour to an hour. She is still tired, I’m sure that will last until after radiation therapy is completed. Her radiation treatments are still going well. March 24, 2006 Day 16: Once again Devan ate a large breakfast. About an hour after she finished eating we were at Dairy Queen and she ate two hot dogs. We went to radiation therapy and it has become second nature to her. We changed her radiation therapy for Tuesday, it will be in the morning, so we can go to the zoo. Plus her Aunt Sheralan and her two kids (Cori and Conner) will be here visiting from Tennessee. Her Grandpa Kent and Grandma Cheryl (Mike’s dad) may be there too. They will be coming from Arizona. We came back to Colorado Springs for the weekend. Devan slept practically the whole way. She is doing really well. March 25, 2006 Day 17: This morning Devan got up and left fairly early to go to Pueblo to see my sister (her Aunt Sheralan) and her kids. Devan was so excited to see them! Cori and Devan are as close as sisters. They spent the first six and a half years of their lives living near each other. We all went over to some friends’ house to visit (her Grandma Angel was there too) and let all of our kids play. In the afternoon we went to my dad’s house (Grandpa Alan) for a barbeque. Last night my dad went down to Alamosa to pick up Cody and Ashley to have for the weekend so they wouldn’t miss out on seeing everyone. Devan was in heaven because she got to ride a couple of horses. She had so much fun! Although I think all the fun got to her because she crashed out on the couch at my dad’s house. She was playing pretty hard. Devan wanted to stay with Cori, she was able to stay in Pueblo with Aunt Sheralan. They spent the night at Grandma Angel’s house. It is so nice seeing her so happy and carefree! March 26, 2006 Day 18: Today Mike picked up Devan from Sheralan and took her to Grandma Sheron’s house (Mike’s Grandma). Uncle Larry, Aunt Cecilia, Grandma JoAnne, Carlos, and Jeanette were there to see and visit with Devan. She was showered with more gifts and love. She had a good time. They arrived back at her dad’s and we had time to just relax and enjoy each other. As she was getting ready for bed she got another bloody nose. We’re thinking that it may be from the dry air. March 27, 2006 Day 19: This morning Sheralan and her children (Cori and Conner) came by Mike’s and picked up Devan and I to take us up to Denver. We were able to show them our apartment at Brent’s Place and to get her hotel room that Brent’s Place helped set up. Sheralan then took us to Devan’s radiation appointment. Sheralan and Cori were able to go back and watch Devan get set up for her radiation treatment. Radiation went well, the puffiness of her cheeks are starting to show, the mask is starting to leave marks on her cheeks and nose. We were all pretty tired so, after dinner and a period of visiting, Sheralan went back to their hotel and Devan and I crashed pretty early. We were asleep before Mike arrived from Colorado Springs. March 28, 2006 Day 20: Devan’s radiation appointment was a morning appointment. Mike took her to the appointment and Devan also had an appointment with Dr. Chen. He said that Devan is doing good and that the movement of her right eye has also improved. Devan has been getting itchy skin, I am also thinking that this is also caused by the dry weather and the changing of the seasons. Sheralan and her kids came by to pick me up, and then we were off to the Denver Zoo. We met Mike and Devan there. After seeing the bathrooms and the food area, we were ready to see the animals. The polar bears were up and moving around. They were walking right by the glass. Devan had a blast; however, the zoo wore all of us out! With Devan being so worn out, her moodiness has really been able show its ugly head! I also can’t believe how tough it can be for us to deal with. We get through it some how (all those prayers!). It took us a little longer than 4 hours to see everything (I think we saw everything). After the zoo we went to Casa Bonita’s to eat dinner. The kids enjoyed it. We went through the “haunted cave” and Devan led while Conner screamed and cried for all of us. Devan screamed around every corner and ended up bumping her head on the rock. She’s going to have a bruise. March 29, 2006 Day 21: Mike had a meeting this morning, so Sheralan is going to be our taxi again today. Devan had a ten o’clock am appointment with Dr. Foreman today. Dr. Foreman saw us just real quick (in the waiting room). See, it took us forever to get called back because the new nurse checked us off, but never called us back. Molly, a nurse of Dr. Foreman’s, checked out Devan and is impressed with her improvements. Dr. Foreman cut Devan’s steroid use back to 2mg per day and next week they plan on taking her off the steroids all together. We were also told that the hair loss she is experiencing will be permanent. Thank goodness she has very thick hair! Regardless of this, Devan came out of the Denver Children’s Hospital a very happy little girl. We went to eat and saw Tom for a very brief time, and then off to radiation therapy. Grandpa Kent and Grandma Cheryl (Mike’s dad and step-mom) met us at Devan’s radiation appointment. Sheralan went back with Devan again because Kent and Cheryl arrived after she had been taken back. After the treatment, Kent and Cheryl invited us back up to his hotel room to go swimming. Cori, Conner, and Devan were very excited. We went swimming and visited for a while. Kent and Cheryl gave Devan a Cabbage Patch Doll with changing hair color, a stroller, change of clothes, and a camera with film and album. Needless to say, she had a blast! After we left we went to eat, then Sheralan dropped us off and went back to Mom’s house in Pueblo. We said our good-byes. Devan and I were thankful that they were able to come out from Tennessee to visit, but not they had to leave. Sheralan has always been a huge support in my life and having her leave was very difficult! Thank you Sheralan for being there for us! Devan did well today. She became real moody again, crying over things that usually wouldn’t even bother her. We are trying to deal with this as sympathetically as we can. At dinner Devan was also able to suck up her spaghetti noodles, she hasn’t been able to do that for a while. Her motor skills around her mouth are really coming back. March 30, 2006 Day 22: Today, Kent and Cheryl were able to go with Devan and Mike to her radiation therapy appointment. They were able to go back with her and watch her get set up. It was pretty tough for them to watch their grand-daughter going through such an ordeal, and know that she does it pretty much on a daily basis. After the appointment, we went swimming at the hotel. We stopped at Target on our way to get Devan “floaties” and goggles. On our way into Target Devan started whistling. Her improvement is amazing to us. Devan went swimming for about 45 minutes, then we got her ready for dinner. When I was blow drying her hair I noticed how much hair she was losing, it’s a lot! Then Jeanette and her friend Tracy (and her baby daughter Kiele) met us at the hotel and then we all went to Casa Bonita’s for dinner. Brian, Mike’s friend, joined us also. Devan wasn’t as thrilled as she was the first time, I guess that is what happens when you go just two days apart. Devan was pretty worn out by the end of the evening. I am actually amazed at how well her energy level has been and how well she has been holding up. Although she has had her moody moments, she has been wonderful to be around and her strength that gets her through these tough times is also the strength that pulls her dad and I along! She is amazing! March 31, 2006 Day 23: Devan’s appointment was another morning appointment. Before we left, Devan and I went and checked our mail slot. There was a card from Ashley, a letter from Monica (a friend of Devan’s from Alamosa), and a card with a Wal-Mart gift certificate from Save the Children Foundation. After her radiation therapy, which went well (she is getting Nugget Tickets) we went back to the apartment (I forgot stuff) and then we were on our way back to Colorado Springs. When we arrived in the Springs, Devan and I left to go meet Uncle Tom at Grandpa Alan’s work. We got back, laid down for a while and then Grandpa Kent and Grandma Cheryl arrived. They are making dinner and Devan is waiting till we can go meet Libby to pick up Ashley. Devan misses her siblings so much and she is so excited that Ashley is on her way down to visit! Cody is staying behind in Alamosa for a Hunter Safety course he is taking. We are almost half way done with radiation therapy. Devan is a strong girl! We love having her around and treasure every minute we have with her. April 1, 2006 Day 24: This afternoon Devan’s teacher Ms. Fowler, Doe, and Mrs. Gonzales came to Colorado Springs from Alamosa to have lunch with Devan. Ashley, Devan, and I walked around the mall while we were waiting for them to arrive. In a short amount of time Devan noticed that I am not a person who loves to walk around the mall, or shop for that matter. The good news is that we didn’t have to spend too much time at the mall, just enough time to buy Devan a windbreaker. Around eleven o’clock we went to Joe’s Crab Shack to eat lunch with Ms. Fowler, Doe, and Mrs. Gonzales. Lunch was wonderful! Devan couldn’t choose between the pizza or the crab. So she ordered a pizza and Ms. Fowler ordered crab to share with her. She had the best of two worlds! They brought up A LOT of stuff from the Boyd Elementary students and staff. It is so nice to see how people, whether they know Devan or not, are giving her things to lift her spirit. And to top it off, Mrs. Gonzales bought Ashley and Devan t-shirts from Joe’s Crab Shack. We had a nice visit and they can’t wait till she can go back to school, even if it’s just to visit. After lunch, Ashley, Devan, and I headed to Wal-Mart. We were there for almost two hours and had pretty much nothing to show for it. Devan kept getting something and a few minutes later decided she didn’t want it and put it back. The small amount of steroids that she is on, still has her moody. Ashley, however, got an outfit. By the time we returned home she was pretty tired, but hungry. She ate some Mac-N-Cheese and rested on the couch. She had a good day! April 2, 2006 Day 25: This morning Jeanette, Aunt Jeana, took Ashley and Devan to the movies. They went to go see Ice Age: The Meltdown. They really enjoyed the movie. Jeanette then took them to McDonalds for lunch. After they got back, the girls relaxed on the couch coloring and watching television. We also called Tom, Uncle Tom, and sang Happy Birthday to him. While blow drying Devan’s hair, I had her flip her head upside down (to dry the underneath). I noticed that she is missing about an inch of hair from one ear to the other. She has little red dots and it looks like it would hurt. She said that it doesn’t hurt and it doesn’t seem to bother her to have the hair loss. In fact, she said that we can shave her head bald, she wouldn’t care. I got out all the letters and cards that she has down here and we sat on the couch while I read them to her. Most of the letter/cards were from second and third grade classes at Boyd Elementary School. I had a hard time reading some of the letters. The letters were so heart touching and sincere. It took a lot of deep breaths and a few breaks to get through the letters. Around 5 o’clock Devan and I took Ashley to meet Libby so they could head back down to Alamosa. After we dropped her off and said our good-byes, Devan was hungry for Chinese Food (Egg Drop soup to be specific). As we were looking for a restaurant Uncle Tom called. He was near the north end of Colorado Springs, so were we…so we met him in a parking lot so I could give him his “A prayer for Devan” bracelet. We also gave him one for Natalie, Grandpa Alan, and Janet. It was nice to see him, even if it was for just a few minutes. Devan and I went off again searching for Chinese food. The first place we found was closed, thank goodness there was another one just about 5 miles away. We brought the food home and she ate some chicken lo mien, egg drop soup, and then she had two bowls of oatmeal. It hasn’t even been a half an hour and she is saying she is hungry again. She is in good spirits today. However, she has been talking about how she misses her room, bed, and Alamosa. Unfortunately, we probably won’t be back in Alamosa until after her radiation therapy is over. She was also telling me how she didn’t understand why so many people are reaching out and helping our family. I explained that people want to help out, whatever helping out looks like for them. I let her know that there are many people that care for her and want her to be as happy as she can be. Then in the most matter-of-fact voice she turned and said, “but I only have a brain tumor.” I almost started crying. How simple she has made this horrific situation, how I wish I had her ability to face life as she does! April 3, 2006 Day 26: Today we headed back up to Denver for the week. Devan’s radiation therapy went well today. She seems to be handling everything very well. Her energy level is average. Her attitude is way above average. I believe that all the support and prayers we have been part of are helping! I truly believe that with everyone’s prayers and Devan’s attitude, she can be the first child the Denver Children’s Hospital will see beat this terrible brain tumor! I also got a call from the Valley Courier (the Alamosa paper) and was interview for an article they are doing on Devan. The support we have received has been unreal. Ms. Fowler will also be interviewed for the article; they want all the information on Devan they can possibly get. Devan didn’t do anything real exciting today. She is drawing pictures for people like crazy though. It seems like if she is not working on a puzzle, she is drawing pictures. I hope this creative side never fades! April 4, 2006 Day 27: This morning Devan and I started going through her e-mail from her website. Devan is trying to answer them back personally, so the replies are short. However, we got to an e-mail that touched our hearts and made us both cry. We sat there, with her on my lap and in my arms, crying. We cried until we couldn’t cry much more. This was such a blessing, because neither one of us has seen the other one cry regarding this tragedy since we first discussed it on March 10th. After that e-mail Devan was worn out and didn’t want to answer any more e-mails. So, I let her take a break. We will get back to them in a few days. Devan had her radiation treatment this afternoon and an appointment with Dr. Chen. She is doing well and looking pretty good. Dr. Chen had no concerns or worries. Her cheeks and stomach are getting a little more “pudgy” but she looks so cute! Jeanette called and asked for some measurements, she might be getting a surprise! Her energy level is medium. Mike drove us to a lake and we got out and walked around for a while. We sat on the bench and enjoyed being together and being outside. She highly enjoyed the little trip, but she was pretty tired after we got home. Today was a good day! April 5, 2006 Day 28: This morning Devan had an appointment at the Denver Children’s Hospital. We weren’t forgotten about this time!! Her exam went well. She was completely taken off her steroid. She was happy about that! We were also able to meet with Dr. Gore about the experimental treatments that are going to be available to Devan. Dr. Gore explained to Devan the simplicity of the procedure of putting in a line (for I.V.'s, this way she won’t be getting stuck with a needle all the time). It helped Devan a little bit but, naturally, she is still kind of worried about having a line put in. We won’t know which treatment would benefit her the most yet. Dr. Gore said that the type of experimental treatment will be based on the MRI results post Devan's radiation therapy. After the results are gathered together then Dr. Gore will inform us which treatment she thinks would be the best for Devan. Devan, Mike, and I will then discuss the options and decide on what to do. I have also noticed a discoloration near the back of Devan’s neck. We asked Denver Children’s Hospital about it, they suggested that we ask the staff at her radiation therapy about it. So, we did. When she was being taken to her radiation treatment, I showed Kara the spot and asked her what it might be caused from. She wasn’t sure and suggested that we ask the nurse. Devan started going through the normal routine of getting set up for her treatment; however, today was a bit different. Today the mask wasn’t fitting right. It was so tight that it couldn’t even be completely snapped down without hurting Devan. So, the mask was taken off and Kara cut some of the mask away, mainly where Devan’s cheeks are. I told Devan that it almost looks like a super hero’s mask. After they got her mask snapped down securely, Devan’s cheeks were puffing up over the new edges. It sure looked painful, at least uncomfortable, but Devan said it didn’t hurt. Besides the encounter of the tight fitting mask, radiation went well. The rest of the day was relaxation time. We were also able to get on line and read the article about Devan, that the Valley Courier published. It was a very good article and it opened my eyes to how much of the community is chipping in and helping us out. April 6, 2006 Day 29: Mike took Devan to her radiation therapy appointment today. The radiation treatment went well, mask is still fitting (snuggly). Devan called me when she was through and let me know that they were coming by the apartment, picking me up, and going out to eat. I had no complaints! We went to a pizzeria, the food was really good. We went to the same restaurant that we went to with Sheralan and her kids when they were out here. Devan’s appetite is already starting to fizzle out a tad bit. We went back to the apartment and Devan spent her time drawing pictures for people. We also received a call from Libby, Cody, and Ashley. The Alamosa Boys and Girls Club had the spaghetti dinner fundraiser for Devan tonight. It sounds like it was a lot of fun. Wish we could have been there! April 7, 2006 Day 30: This morning was a rough one for Devan, she threw up. Poor thing! Her radiation treatment was this morning and she was very sick to her stomach. After her appointment we headed to Colorado Springs. We also found out that we leave for Disney World on May 7th and return on May 12th (Devan’s birthday). She seemed happy, but do to her feeling not well, her excitement was contained. Today was a day that Devan didn’t do much of anything, except rest. Hopefully this clears up by tomorrow. April 8, 2006 Day 31: Today Devan is feeling a lot better. Mike, Devan, and I met Tom and Natalie for lunch at Meadow Muffins. Devan didn’t each much. After lunch we all went to the Cave of the Winds for a tour. Devan had a blast! In fact, she was trying to lead the group. Devan has energy today and hasn’t been able to sit still. No complaints here! April 9, 2006 Day 32: This morning Devan went fishing with Grandma JoAnne and Carlos. They caught two fish (Devan says she caught one and they caught the other). She was very eager to show them off. She didn’t seem to be worn out either. Mike and Devan also called Grandma Cheryl to wish her a happy birthday (today is her birthday). We are all gathering together to have a small (early) birthday celebration for Mike. Devan is sure showing us that no matter what life throws our way, there is always something to smile about! April 10, 2006 Day 33: We came back to Denver. Devan’s radiation appointment went well. We were informed that she only has seven more radiation treatments. This evening Brent’s Place had an Easter dinner for all the families staying here. The Easter Bunny was there and the kids got to enjoy an Easter egg hunt. Devan had a lot of fun. April 11, 2006 Day 34: The back of Devan’s neck/head is starting to hurt. The radiation is starting to burn her. Today after radiation she had an appointment with Dr. Chen and he gave us some ointment to put on it. Today is also Mike’s birthday. The first thing she did was get her dad’s presents and give them to him. She couldn’t wait, it was so cute! We went out to dinner for Mike’s birthday and then had a quite night at home. It was a good day. Devan’s appetite is not that great, but at least she is eating three meals a day. April 12, 2006 Day 35: Devan is so excited about Cody and Ashley being here tomorrow night. She can’t wait to see them; it is all she talks about. Devan had an appointment this morning at Denver Children’s hospital. We informed them that Devan will be done with her radiation therapy next Wednesday. We wanted to know when the next MRI will be done and when we will discuss and choose the experimental treatment she will get. A six-week waiting period is usually done, so any swelling in her brain has time to go down. Due to the fact that Devan is doing experimental treatment, they will wait only four weeks. So, she will get another MRI on May 17th. After the MRI we will meet with the doctors and discuss and choose the treatment she will get. Her radiation appointment went well, she is using the cream, the “burn” is itching pretty badly. She has lost quit a bit of hair, as before, it doesn’t seem to bother her. Her hair loss should be at it’s maximum. She is as strong as ever. April 13, 2006 Day 34: Devan’s radiation appointment went well. I think she is glad that the treatments are almost over! She also had an eye appointment this afternoon at the Children’s Hospital. The eye doctor said that he thinks it will take about three months for her right eye to go back to normal. If there is no change or the eye gets worse, he informed us that he will suggest and talk to us about a surgical procedure that can be done. Devan does not want any surgery on her eye and if it is not totally necessary, than it may not happen. We will wait and see…. Cody and Ashley arrived this evening and Devan is SO happy. It is so nice to see them together, happy, and not fighting (for now)! Today was a good day. April 14, 2006 Day 35: This morning Cody and Mike took Devan to her radiation treatment, which went well. After the appointment we got ready and went to the movies. Cody and Mike went to watch “The Benchwarmers” and Devan, Ashley, and I saw “The Wild”. The wild was a cute movie and Devan really enjoyed it. After some shopping we came home and enjoyed the evening. April 15, 2006 Day 36: Today we relaxed as much as possible….because we went to the Denver Nuggets game this evening. It was the first pro-basketball game that most of us had been too. It was fun. Devan’s favorite part was Rocky (the mascot). She got a stuffed Rocky and a tiny basketball, Cody and Ashley got hats. They enjoyed the game for the most part, Devan was disappointed that she wasn’t able to meet Rocky. Her energy level today has been surprisingly high. April 16, 2006 Day 37: Happy Easter!! The Easter Bunny found the children. We had a fairly decent Easter. It was hard for her dad and I, not knowing how many more times we were going to be able to celebrate this glorious holiday with Devan. However, we didn’t show these emotions, and enjoyed the day with the family. Devan and Ashley spent a lot of time together and played outside almost all day. It was really hard to say good-bye to Cody and Ashley when the time came. Devan wanted them to stay and they wanted to stay. Next week we’ll be back home with them and it will be easier. Devan was pretty tired come bed time, probably due to playing all day. April 17, 2006 Day 38: Today Devan did well, she misses her brother and sister! Radiation treatment went well, the burn is starting to hurt and we are putting cream on it for her. Her energy level is not real high. April 18, 2006 Day 39: Devan had an appointment with Dr. Chen after her radiation treatment. He gave us a prescription ointment to use on her burn, it is looking pretty bad. She only has one more treatment to go and she is so glad! Today was a good day for her, she is a little more energetic today. April 19, 2006 Day 40: Devan’s last treatment was this morning at 8:30 am and then from there we went to the Denver Children’s Hospital for an appointment with Dr. Foreman. He was very impressed by how well she is doing. He stated that a lot of times radiation causes necrosis (spelling?) in the brain. But he doubts that she has a lot of necrosis due to the fact that she is doing so well with her coordination and balance. Her right eye is still turned in and they expect that it will be like that for at least another three months. We will come back in May for another MRI and to talk to the doctors about which experimental treatment she will be getting. Devan is still getting sick sometimes and Dr. Foreman said that this can go on for about 2 weeks after radiation. Her spirits are still as high as ever and can’t wait till she can get back to Alamosa and see her class again. April 20, 2006 Day 41: We are back in Colorado Springs, we got in last night. Devan went to work with her Aunt Jeana this morning and her Grandma JoAnne picked her up and kept her for the afternoon. Then this evening Jeanette took her to a John Laing Model Home to meet a friend of Mikes who work's for John Laing. Devan got showered with Cinderella gifts. Devan had a blast! Devan had a lot of fun today, she was pretty tired by bed time though! She is doing great! April 21, 2006 Day 42: Devan was able to sleep in this morning and then at 2:00 this afternoon Jeanette picked her up, took her to get her nails done and then did her hair. Jeanette took her to a hockey game that was to benefit Devan. Devan had the opportunity to drop the puck to start the game and then she was given the puck to keep. After the game there was a gathering and even more donations came in. I want to thank every one that has helped the family out! I don’t feel there are any words to express our gratitude! Devan had a great time and her energy level is pretty high, just like her spirits! April 22, 2006 Day 43: This morning Devan went with her dad, grandma, and aunt to Pueblo for a spiritual healing. They had a good time. When they got back, Devan and I went to Lake George to visit my “second mom” Shirley. Shirley’s seven year old granddaughter was there. It was really nice to be able to visit with Shirley! Devan seems real tired and unsociable today. April 23, 2006 Day 44: Devan is more sociable today as played with Shirley’s granddaughter. We also got to next door so the girls could ride. They had a blast and by the time to go came, Devan did not want to leave. I took her back to Colorado Springs so she could spend some time with her dad. It was hard for both of us, but I know she will have fun with her dad. In fact, he took her to the county fair and they rode rides together and had a blast! April 24 - 29, 2006 Day 45-50: This week Devan got to spend it with her dad. On Tuesday April, 25, Devan went to her Grandma JoAnne’s and was able to help bake some cupcakes, she had fun baking with her grandma! On Thursday, April 27, her dad took her shopping, Devan loves shopping! So, fun was a given! She bought stuff for Cody, Ashley, and me. She has such a wonderful loving, giving, caring, heart! On Saturday, April, 29, she came home . We were all so glad to see her and have her at home! Her dad brought her back so he could stay for a while and visit with the other kids too. April 30, 2006 Day 51: Devan wasn’t feeling very well, but all she could talk about is going to school tomorrow and seeing her class. I will take her in and take it from there… Devan is doing well, besides the nausea part! May 1, 2006 Day 52: I took Devan to her school mid morning. She was so excited! When we got to the school, every one was so excited to see her, especially her class! They all gave her hugs and she even got a few gifts. She wanted to stay, so I left her and she stayed all day, we picked her up after school. She was a little tired by the time she got home but not bad. May 2, 2006 Day 53: Today Devan went to school again. She wants to spend all the time she can with her teacher and classmates. Devan said that a lot of the students follow her around, she doesn’t mind. Her energy level is just incredible! Another good day! May 3, 2006 Day 54: Another day of school. We don’t let her ride the bus, so she is getting dropped off and picked up. I think she likes it! Today after school she had an appointment with her counselor, Yvon, and then after her appointment she was picked up by Ms. Fowler. Ms. Fowler, Doe, and Mrs. Gonzales took Devan out to dinner. She really enjoyed going to dinner with them! Her energy level is still holding up and she is doing real well! May 4, 2006 Day 55: Today after school, Devan went over to Ms. Fowler’s house to help bake some cakes for a fun run Boyd Elementary is having tomorrow. It is also being called Do It For Devan Day. Devan is excited about tomorrow and that Cody, Ashley, and I will be there for it. Devan is doing great! May 5, 2006 Day 56: This morning we went to Boyd for the fun run/ Devan’s Day. We walked into the school and all the students and faculty were wearing Do It For Devan t-shirts. It was so awesome! We all ended up getting a t-shirt too. Devan was given a first place medal by the student who won it, during the awards ceremony. She was also awarded the MVP for bravery and courage. The school also awarded her a check for the amount of money that they made for the fun run….it was unbelievable! This school and community have done more that I could ever have imagined…Thank you Alamosa! Back in her class the boy that won third place, also gave her his medal. I was either in tears or close to them the whole time! After we left the school we drove to Pueblo and saw Grandma Angel and then went to Grandpa Alan’s and Janet’s to crash for the night. Devan had fun seeing everybody but by the end of the night she was exhausted! What a girl! We leave for Disney World in two days, I’m sure we’ll have a lot of fun and hopefully Devan’s energy level stays as high as it has been! May 6, 2006 Day 57: This afternoon we went up to Denver and stayed at the Radisson Hotel. On the way up there we realized that we forgot her Cinderella dress. We will have Jeanette overnight it to us on Monday and we should have it by Tuesday. It isn’t a good trip unless something important is left behind! Devan, Cody, and Ashley all got to swimming. They all had a blast and Devan is doing really well! May 7, 2006 Day 58: This morning we were all picked up by a limo, we were then taken to the airport to catch our flight to Orlando Florida. Devan was so excited and I think the limo ride was more exciting to her than the flight itself. We arrived safely and went to Give Kids the World Village. There they had the passes for us to go to Disney World, Sea World, and Universal Orlando. We ate dinner there and Mike got to take Devan, Cody, and Ashley around to some rides and attractions while I went to a meeting. The staff there is excellent! Due to the village already being full, we were set up at the Animal Kingdom Lodge. This evening when we were all settled in our rooms, we were on the back deck of our rooms and we saw giraffes. It was amazing and Devan LOVED it! Devan has been doing really well and her energy level is staying pretty high. However, her appetite is almost non-existent. May 8, 2006 Day 59: Today we spent our day at Sea World. Devan’s favorite ride was Journey into Atlantis. It is a water ride and where we sat, we got soaked. We didn’t mind because it was a hot day. Devan actually rode the ride twice because some of the other rides we got to enjoy, she was too small for and had to wait while Mike and I took turns riding them with Cody and Ashley. She was also able to feed the dolphins, pet a sting ray, get her face painted, and watch the Shamu show, “Believe”. She was exhausted by the end of the day, but she had a blast! May 9, 2006 Day 60: This morning we had breakfast and left to go to Universal Orlando. We ended up spending most of our time in Adventure Island. Devan was able to ride more rides there and see some interesting things. I think here she liked the Spider-Man ride the best! She was also able to meet The Cat in the Hat and had her picture taken with him. We then went and had dinner at the Hard Rock Café. Devan’s energy is staying pretty high; although, she has been pretty emotional. She did get sick this morning. The nausea and throwing up has not yet stopped. Yet Devan doesn’t let it slow her down. I mentioned the word brain tumor this evening and Devan told me, “Don’t mention it, I am trying to forget about it.” I promised that I would mention nothing of it or anything else that may remind her of her condition. Her dress arrived this afternoon, so she will be able to where it! May 10, 2006 Day 61: This morning Mike and I talked about what we were going to do. Mike mentioned that it might be nice to take a break and take the children to the beach. None of them had ever gone before and Devan my never get another chance to go. I agreed and we were off to Daytona Beach. It was a little bit of a drive but it was worth it! We ate lunch at a restaurant on the pier and then walked down the beach for a while and then let the kids have fun in the ocean. They loved it, all of it: the beach; the weather; the shell finding, and the water! When it was time to go, Devan was very disappointed. She wanted to stay and play in the waves. It was a nice ride home and we were all pretty tired by the time we got back to the hotel. We had dinner and now it is time for bed! Devan is still doing great! May 11, 2006 Day 61: This morning was busy! Devan got sick again but was ready to go. The spirit of this girl is just plain amazing! We went to Give Kids the World Village and ate breakfast. We also got our picture taken with Mickey and Minnie Mouse. After we finished up there, we went to Magic Kingdom. We went on the one ride that is a must, “It’s A Small World”, the kids were not too thrilled. I guess that should be the first ride of the trip so it doesn’t seem so boring compared to the thrill rides. After the ride we went to Cinderella’s Castle and were actually able to get in to meet Cinderella and have lunch there. Besides Cinderella, Devan got to meet Snow White, Sleeping Beauty, Belle, and the Fairy God Mother. The lunch was pretty good but seeing the look on Devan’s face was even better. Unfortunately, Devan took off the dress after Give Kids the World visit and we forgot to take it into Magic Kingdom with us. It was still fun! After the lunch, we decided to call it a day because it was just pouring rain. We missed a few things that we wanted to see, but I think we have been theme parked out. Devan’s energy is still going pretty strong! We leave tomorrow morning and I think we are all ready to go home. In fact, I think we need a vacation from our vacation. May 12, 2006 Day 62: Today is Devan’s birthday! She is nine years old now….time goes by way too fast! We slept in this morning and then got up and packed. Once again Devan was pretty nauseated. After we left the hotel, we went to a shop and bought another suitcase so we could bring everything home. We had a lot of stuff! We caught our flight and landed safely in Denver at about seven at night. We got another limo ride to Radisson Hotel. We decided that we were tired and to stay the night there. We took Devan to Joe’s Crab Shack for dinner, she got sick there. She didn’t have the best birthday, but she never complained. We got back to the room and now we are going to bed! May 13, 2006 Day 63: This morning, after breakfast, we all went swimming. It was a lot of fun! We then went back up o the room, packed, checked out, and left to come back to Colorado Springs. The rest of the day we pretty much relaxed. Devan is doing well, she didn’t get sick today . May 14, 2006 Day 64: The kids wished me a happy mother’s day. It was a pretty relaxing, do nothing day. This afternoon Grandma Joanne and Carlos brought over a doll house for Devan. It is her birthday present from Mike’s side of the family. It is beautiful and Devan loves it! We had a small cake and sang happy birthday to her. She is going to have a big birthday party on May 20th and that is when she will receive her gifts from us. Devan is having a great day! May 15, 2006 Day 65: Today was a laid back day. Devan was sick again this morning but recuperated well. Devan and Ashley went to the store with me and then we went out for lunch. We had fun spending “girl” time together. When we got home, the girls spent most of their time playing with the dollhouse. Devan wasn’t real energetic today, but she kept her spirits high! May 16, 2006 Day 66: This morning Mike, Cody, Ashley, and I got up early and went to the Denver Children’s Hospital. Devan had an appointment to get another MRI and to see Dr. Foreman. Her MRI turned out well! The tumor has shrunk and she has no necrosis due to radiation therapy. We talked to Dr. Foreman and Molly Hemenway (She works with both Dr. Foreman and Dr. Lia Gore, Dr. Gore is ahead of the experimental treatments.) regarding which experimental treatment would be best for Devan. We were informed that the Cetuximab (trade name is Erbitux) treatment would be in Devan’s best interest at this time. However, due to her nausea, the doctor doesn’t want her to start experimental treatment right away. He wants us to wait two weeks and if she still has nausea he said that he would put her on a high dose of steroids for a few days. If we happen to wait for more than four weeks to start treatment, then Devan will need to get another MRI before treatment can be started. This treatment, Erbitux, is an every weekday treatment for two weeks and only on Monday on the third week. Week four will start the cycle all over again. So, we will hopefully adjust well when the new schedule starts! Our trips back and fourth to Denver shouldn’t be too bad. We are hoping to find a decently priced house to rent in Colorado Springs. I want Devan to live near her father since her life span is unknown, and I want to be able to have Cody and Ashley enrolled in school next school year and be at home for them before and after school. If we don’t find a place soon, then I’m not sure what will happen, I just know that everything will end up working out! Devan will also be able to get an internal line (port). The doctors will access it on Mondays and de-access it on Fridays, this way she can go swimming if the opportunity arises. We didn’t return until this evening; so soon after are arrival at Mike’s place, we went to bed. Devan was a trooper through out the whole day! By bedtime she was worn out! May 17, 2006 Day 67: This morning the kids and I were able to relax. Mike, on the other hand, got up early to play in a golf tournament that was put on by his employer. Around four o’clock in the afternoon, Jeanette, Cody, Ashley, Devan and I went to the golf course so that Mike’s co-workers had the opportunity to meet Devan in person. She had a lot of fun! Her dad let her drive (steer) a golf cart and she got to try and hit a ball into the hole. After we finished at the golf course, we went out to dinner at the Olive Garden. Lisa and her son Jordan were able to join us for dinner. Dinner was great and Devan ended up inviting Jordan to her (belated) birthday party, which will be held on Saturday at Mr. Biggs. Devan was also able to invite a couple of friends from Pueblo, Colorado, that she use to go to school with. Devan is very excited for the party! Devan is doing really well. May 18, 2006 Day 68: Today was another day to relax, for the most part. Devan got real sick this morning and threw up, a lot. I feel so bad for her, but she acts as if it is no big deal. Besides getting sick, she played with the doll house for quit a while today with Ashley. Her spirits are still strong! May 19, 2006 Day 69: This afternoon Mike, Cody, Ashley, Devan, and myself went to meet some people that did a charity poker tournament for Devan. They asked us to meet them so they could have the opportunity to present the (fake) check to Devan them selves. I think the best way to put our experience is, over whelming. The work, time, and the effort so many people have done to help the family out, is just amazing! We say thank you, but it doesn’t feel like it is enough sometimes. Devan and Ashley were able to leave with Aunt Jeana and spend the rest of the afternoon with her. Devan had a good day today! May 20, 2006 Day 70: This morning (late morning) Devan had her birthday party at Mr. Biggs. She had a blast! Seeing some of her old friends again, brought her a lot of happiness! All the kids were having a great time and enjoying the time with Devan. After the party, we were able to come home and relax. Devan had a wonderful day! May 21, 2006 Day 71: This morning we (Cody, Ashley, Devan, and I) left Mike’s this morning and went to visit my mom, Devan’s Grandma Angel. Grandma Angel gave Devan birthday presents and we were able to spend some time with her. After we were through visiting Grandma Angel, the kids and I headed for Alamosa. I am pretty sure that everyone enjoyed being back home; although, we all know that it won’t be home for long. Devan is doing real well! May 22 and 23, 2006 Day 72 and 73: These days (which were Monday and Tuesday) we really didn’t do anything exciting. We all had a chance to totally relax and enjoy our time together at home. Devan hasn’t been sick these last few days! Devan is full of energy and full of life! May 24, 2006 Day 74: Last night after I went to bed, things got difficult. Devan was sleeping with me and she had started crying. I asked her what was wrong and she asked me if all brain tumors come back. I told her that I didn’t know. She then stated that her doctor has seen about 200 kids with this type of brain tumor and they all died. I let her know that if any kid can beat this tumor, she can. Devan then asked me, “Why does it have to happen to me?” That just absolutely broke my heart. I told her that I didn’t know and that I wondered the same thing. We just laid there and cried for a while, and I just kept her cuddled up to me. This morning all three kids wanted to go to their school and visit. Cody and Ashley walked with a friend, Billy, to their school and they stayed almost the whole day. I drove Devan to school and she stayed all day. Ms. Fowler told me when I went to pick Devan up that she did get tired, but it didn’t slow her down. I also got her report card and she had very good grades! After we left Devan’s school, I took the kids by the San Luis Valley Boys and Girls Club to say “Hi”. When we finished there, we headed out for Creed (Colorado) to visit a friend, Carly. We stayed the night there and the kids were able to camp out in tents in their living room. Devan and the rest of the kids had a fun time. Devan does seem to be emotional about weird things, but this has been going on since she was on steroids. I don’t think her personality is quite the same. She is still a happy, energetic little girl. She doesn’t seem to be bothered or emotional about her tumor today, in fact, she acts and plays like she doesn’t have one. What a powerful girl! May 25, 2006 Day 75: This afternoon we returned from Creed and another friend, Allison, took the kids swimming. Devan will swim every chance she gets. After they got back, Ms. Fowler, Mrs. Gonzales, and Doe took Cody and Deavn out for dinner. Ashley stayed at Allison’s for a little while. Devan had a fun time. Today was a good day for her! May 26, 2006 Day 76: This morning we left Alamosa and headed for Pueblo. We stopped by and saw Grandma Angel, then we went to a friend’s, Dani’s, house to visit, and then we went to my dad’s (Grandpa Alan’s) house and stayed the night. Devan is doing really well! She hasn’t gotten sick in a week! May 27, 2006 Day 77: Today the kids and I went to PMI (a motor sports park in Pueblo) to see Shirley (she’s like my second mom) and her son Brett (He is like my brother, he battled cancer when we were in high school. His chances of living were not good, yet here he is, still alive today giving hope to all with cancer!). Brett has a company that puts on dirt bike races, so we went to watch. Today was only little kids, and it was SO cute! Devan now wants a dirt bike, and wants to race. It was a lot of fun. We ended up staying the night and sleeping in Shirley’s camper. Devan was very energetic today! May 28, 2006 Day 78: This morning was a early morning for everyone, but Devan. She wore her self out yesterday! Cody helped Brett get ready for the days races. He worked real hard, but in return he got to green flag the riders! Ashley helped out with registration, she did a good job! Devan and I had a slow start when it came to helping out, but we were there to watch the races. Watching the pros was the best! Later, I helped out by packing things up and help get Brett and his crew out of there faster. These last few days have been HOT and very WINDY, so everyone was ready to leave. When then came up to Colorado Springs, to Mike’s house. We are going to go to Arizona to visit Mike’s dad (Grandpa Kent). We are going to be leaving on Wednesday morning. May 29, 2006 Day 79: Happy Memorial Day!! Today was about nothing but relaxing. Devan is still doing well. She just amazes me sometimes! May 30, 2006 Day 80: Today we didn’t do much either. I did take the kids to Wal-Mart and Devan got herself a Leapster game system. She has wanted one for a long time. Devan is doing great and she is excited about going to Arizona. May 31- June 30, 2006 Day 81-111: We took Devan, Cody, and Ashley to Arizona to visit Grandpa Kent and Cheryl. There was a lot of family there and it was fun to visit with everyone. On our way back we found a stranded puppy in Arizona and Devan rescued her. Her name is Snowflake. On June 14th, we were back up at Denver Children’s Hospital. Devan had an MRI done and got all set up for the experimental treatment, Cetuxamab. On the 16th she had a surgical procedure; she had an internal port put in. She did great! On the 19th, Devan had her first treatment. By the 23rd, Devan was getting sick. She was throwing up a lot! Then a few days later she started having bad diarrhea along with the vomiting. July 1- July 31, 2006 Day 112-142: On July 1st, Devan was starting to lose weight. She had no appetite at all, and what we did get down her was coming right back out. She was put on evening IV’s and IV medication. I learned a lot about being a nurse in a short time! We also had my sister-in-law, Stefani and their girls (Kendra, Kayla, and baby Katelyn) from New York (my brother was able to fly to Colorado from Afghanistan during his 2 week break). We also had my sister, Sheralan and her kids (Cori and Conner) out to visit. Mikes dad, Kent, and Cheryl also visited us as well. Unfortunately, Devan had been so sick and lost so much weight (she was down to 33 lbs.) that she was unable to enjoy the time family was out visiting. Devan’s last day of treatment was on the 24th. She was being taken from us by the treatment. We want her to enjoy the time she has here and not go prematurely. She had an MRI on the 27th and it showed that the tumor is about the same as her last MRI. So the tumor has been stable for the last month or so. August 1- August 20, 2006 Day 143-162: Since being off the experimental treatment, Devan has started improving! She started putting a few pounds on and her appetite has been returning to normal, SLOWLY. On the 8th, she was taken off the evening IV’s. We also met with Dr. King, an eye doctor that works with Children’s Hospital, and Devan will have a surgical procedure on her right eye, this procedure will make it go back to its normal position and should get rid of her double vision. Her energy is back up and she has made it through some tough times. I want to thank everyone out there who is praying for her and sending positive energy her way! I am sorry for getting so behind in the journaling, I will make an effort to do better and write no less than every two weeks! August 21- September 3, 2006 Day 163-176: August 21st -24th were pretty quite. On Friday, August 25, 2006, Devan, Cody, and I went into Pueblo (Cody had an appointment with Dr. Ramos for a sports physical). While we were in Pueblo, Devan got to see her grandma Angel; we also were able to go to Austin’s house (a long time friend of Devan’s). Austin was able to come back with us and spend the night with Devan. August 25th was Cody’ s birthday and I took the kids roller skating that evening. Devan and Austin had so much fun! The next morning Devan and Austin made cookies. It was so nice to see Devan playing and enjoying life! Devan has been doing real well and I’m just so proud of her! She is eating a little bit more and her energy level has stayed up. On Wednesday, August 30, Devan had an appointment at Denver Children’s Hospital. All the nurses and doctors that have seen Devan were delighted to see how well Devan is looking. She is still under-weight, but in the last two weeks she went from 33 lbs. to 36.6 lbs. The only concern I had while we were there is that Devan’s hair is falling out BIG time. She is not on any medications and the experimental treatment she was on, causes hair growth. The reasoning behind her hair loss is still unknown. I have been working diligently to find a hospital that is doing one or more clinical trial(s) so we can get Devan into one. I have talked to a lot of cancer centers and received information on websites to visit and given phone numbers to other facilities that may be able to help. I talked to the National Cancer Institute in Maryland and thought their trials looked promising. With help, I quickly got Devan’s medical and imaging records off to Maryland. I received a call from the research doctor, and because Devan’s tumor isn’t growing, she is not eligible for any of the clinical trials. However, they do perform bi-scans as a study trial. Because biopsies can’t be done on this type of tumor, they do a special scan that can “read” the chemicals of the tumor, and the tissue around it (from my understanding). We are thinking of participating in the study, but no decisions have been made yet. I also spoke to Saint Jude’s Hospital and again, until her tumor is growing, there are no trials for her to do. It is so frustrating, because doctors say that the average length of life after the tumor starts to grow again is 4 to 6 weeks. The research nurse from Saint Jude’s stated that the reasoning behind waiting for the tumor to reoccur is that all the trials are either in phase I or phase II. September 4 – October 12, 2006 Day 177-215: Devan has been doing well! Devan had started feeling nauseous in the mornings around September 18th, about a week later it turned from nausea to vomiting. On October 3rd she had to go in for an urgent CT Scan to make sure there wasn’t significant blockage on the fourth (brain) ventricle. She was scheduled for her eye surgery on October 4th and the risk of the procedure would be great if there was too much blockage on that ventricle. The scan showed minor blockage and she was okayed to proceed with the eye surgery. The operation went well and her eye is doing real well. She has no more double vision and the eye is straight once again. However, while we were at the Denver Children’s Hospital, Dr. Foreman wanted Devan to get an MRI. We met with him after the MRI and I was informed (Devan was out of the room playing with the nurses) that the tumor has spread throughout her brain. This is even more rare than the tumor itself. Dr. Foreman stated that this is only the third case he has ever seen with this diagnosis. Unfortunately, he also informed me that her life with us might be only four to six weeks. Mike and I informed Devan and then Cody and Ashley that the tumor has spread and our time with her will be precious. We did not tell them a time frame because in all actuality we don’t know when she will leave us. They took the news as well as possible. Devan is still LIVING every day, she never lets the reality of her situation bring her down. She is my strength now more than ever! This week is an exciting week for her because her Aunt Sheralan and cousins (Cori and Conner) have come out from Tennessee to visit. October 13 – November 6 2006 Day 216-240 Devan Michelle Williams passed away on November 6, 2006. She fought this long battle for 240 days before her body could no longer fight. Her spirit lives on and is as strong and courageous as ever! Devan was able to stay at home, making her death as comfortable and pain free as possible. She was also able to be surrounded by many loved ones, including her brother and sister (Cody and Ashley). Her fight to live and her love of life has been a lesson to all who knew her. She will be greatly missed and forever treasured. I (Becky), Mike, Cody, and Ashley would like to thank all those out there who have supported us through this difficult journey. Devan was touched by all the love, prayers and support that was shown! Thank you once again! There will be two memorial services for Devan: Memorial Service Advantage Chapel of Memories 829 S. Hancock Colorado Springs, CO 80903 719-634-5424 Services will be held on November 16th 2006 at 2 pm. There will be a potluck lunch to follow. Alamosa Memorial Service ASC Theater Friday November 17th at 3:30 pm The family has asked that donations be made in Devan’s name to the following places. Make a Wish Foundation of Colorado 7951 E. Maplewood Ave. Suite 126 Greenwood Village, CO 80111 Brent’s Place for kids with Cancer 1129 E. 17th Ave Denver, CO 80218 The funeral home has recommended a flower store for delivery that is near Advantage. Bella Studios 719-577-4644 UPDATES September 20, 2007 An important part that I missed earlier, is Devan got baptized on Oct. 26, 2006. She was able to be baptized by her cousin, David Inman. It was a blessing to have him be a part of such a wonderful moment in Devan's life! She is thought of all the time and she is missed more than ever! The kids and I (Cody and Ashley) moved to Pueblo and are still trying to adjust to a life without the physical presence of Devan. Mike also moved, but he has stayed in Colorado Springs. I am now working at starting up a non-profit foundation in Devan's honor. I hope to have it started with in a year. I will keep updating Devan's journal and I will continue writing on the foundation and how it is doing. After having an experience like Devan, I feel the need to share her story, courage, and love. I hope that through the foundation many lives will be touched! Please feel free to keep in contact with us and ask questions. Have a wonderful day! December 25, 2007 Here is a poem I wrote: Christmas is coming, They say it's time to recieve. I'm asked what kind of gift, What I'd like to find under the tree. What do I want, Why would you ask? Can you see only my smile? Then try to see under the mask. All I want for Christmas Is the time that's been ripped away, From the hugs and the kisses And relief from the pain. I want my arms around her, And trip over her misplaced shoe. To tell her that I love her, And hear her say "I love you". Christmas is coming, They say it's time to recieve. But what I want for Christmas Can not be found under a tree. So what is the best gift, Around this time of year? Just let me miss my daughter, and maybe shed a tear. Becky Williams May 12, 2008 Today is Devan's 11th birthday. Time has been flying by, yet the pain of her loss is still so fresh. Ashley, Cody, Shirley (a family friend), Jeanette, John, Evan (the new addition to the family...He is the son of Jeanette and John and named Evan after Devan), and I went to the cemetery and released 11 balloons. We wrote her little notes and sent them up with the balloons. I know she is watching over so many people. I know she is looking over Mike, now living in Arizona; her new cousin Evan; Steve, who is back in Afghanistan; and the whole rest of the family and friends. She must be a busy little angel. I know she is a missed little girl. Her smile, laughter, and hugs are just a few things we miss! |
