Addi’s Story

Addi_250x166Addison’s life was short, but full. She was an amazing little girl who reminded us of what is important in this world. She never did learn to talk. She didn’t have to because her eyes said it all. Anyways, it’s not about what you say but what you do. Below you can read the journal entries throughout Addi’s illness. There is a lot said within these entries and a lot left unsaid. Nobody will be able to fill in the gaps better than you parents going through the same thing. To you I say this: Trust in the Lord with all your heart, lean not on your own understandings, in all your ways acknowledge Him and He will make your paths straight. Proverbs 3:5 I will never understand why children have to suffer and die from cancer. But I do trust in the Lord with all my heart and He has walked this path with me every step of the way. Alone the journey is impossible, but with Him everything is possible. God bless you all and I hope that Addi’s story will continue to inspire others.

1 June 19, 2007 at 10:32 AM CDT
Well, here I am. I can hardly believe that I am sitting right here right now creating this care page for my precious little Addi girl. She is the light of lives and we love her beyond words. As terrible as all of this is, we do feel the peace of God upon us. Tony and I have God’s strength and love holding us together. We also have all of you for whom we are especially grateful. I’ll try to make a long story short and let you know what led us up to this point. Several weeks ago we noticed that Addi was holding her head to the side a lot. What started as a fleeting thought soon became undeniable. We took her to our doctor who referred us to and orthopedic who sent us for an MRI. That all happened within about a week and a half. Friday was the MRI which confirmed what we had suspected but didn’t want to believe. Addi has a large tumor in the postier fossa region (brain stem) and a smaller tumor located in the center of her brain. We don’t know what exactly we are dealing with and won’t know until the surgery. They just can’t tell until they see it and send it off to pathology. Surgery was suppose to be today but has been postponed due to breathing complications. In short, Addi has to be stable before heading into a difficult brain surgery. So now we wait. We are really praying for surgery on Thursday or Friday. We are looking at an extremely long journey ahead with chemo and additional surgeries and who knows what else. We feel your love and we are so thankful to have such wonderful friends and family supporting us. So many people want to know how they can help…pray. Pray, pray, and then pray some more. Pray that my beautiful daughter will have a full recovery and go on to live a full life. God is good. He can and will prevail. Thank you all. ~Amber

2 June 20, 2007 at 08:33 PM CDT
Thank you all so very much for all your kindness and especially for your prayers. It comforts me greatly to know that so many prayers are being lifted up on her behalf. As the days turn into weeks and weeks to months please don’t forget her. Continue to pray for her. She has such a long road ahead and I believe in the power of prayer. Addi is still awaiting surgery. It is a possibility that she will go tomorrow (Thurs.) but it will probably be on Friday. That will be a big day. Thank you again for all of your support. I hope to update with good news soon. Amber

3 June 21, 2007 at 07:54 PM CDT
Again, I want to thank you all so much for all of your love, support and prayers. It means so much to us. Don’t have much time at the moment, but wanted you all to know that surgery won’t be until Monday. We are still waiting for Addi’s lungs to heal so that she can be in the best shape possible for surgery. Thanks again. Amber

4 June 22, 2007 at 08:56 PM CDT
Addi had a good day today. She is becoming more stable and her lungs are healing. Everyone seems to think that she will be ready for surgery on Monday. I can’t thank you all enough for your kind words. I feel the love and it truly helps me. Tony and I are really doing quite well. We’ve handed it over to the Lord and completely trust in His ways. We know that He will care for us all and will never leave us. Again, I’ll ask you all to continue to pray for her complete healing. Especially remember her on Monday as she endures a rather long, complicated surgery. I’ll try and update ya’ll on Monday night, but I’m sure it will be a really long day so we’ll see. Thanks again to everyone. Amber

5 June 26, 2007 at 10:33 AM CDT
So sorry I didn’t give you an update last night. I didn’t make it to the computers before they closed. First off, I want to give credit where credit is due. God answered our prayers for a successful surgery. Things went just about as good as they could have. The surgeon seems to think that he was able to get all of the tumor. He compared the surgery to a final exam that you walk out of feeling like you aced it. She only had a minimal amount of blood loss and required a small amount of blood. Addi is currently getting a MRI to see if indeed there was a complete resection of the tumor. We still have no idea what kind of tumor it is. We have to wait on a pathology report that could take anywhere from 4 days to 3 weeks to complete. We do know that the tumor is unlike anything they usually see and is extremely rare. In short, this could be a really good thing or a really bad thing. We will just have to wait on the pathology report. Once again, I thank you from the bottom of my heart for all your prayers and well wishes. I feel God’s presence just as true as if He were standing right beside me and I think that has a lot to do with all the love and support ya’ll have shown us. So thank you. We are just taking it one day at a time, so for today I ask that you pray for good results from the MRI. That the scan confirms that indeed they did have a complete resection. Hopefully, in a day or so she will get her breathing tube out (it’s been in for 12 days!) I’ll update again soon. Thanks again. Amber

6 June 26, 2007 at 08:34 PM CDT
Can I thank you enough for your tremendous support? We are blessed in so many ways and one is that we have such great friends and family. We know that not everyone is so fortunate. Another good day. The MRI looks good. We think we got it all. There is another tumor spot we are dealing with in the center of her brain. We have not really even discussed it too much because we’re taking it one step at a time and we were focused on getting the big one. Once we find out what pathology says we will know more about this other spot. So once again, thanks for the prayers. I now ask that you pray for good results from the pathology report. Pray that it will be something benign and easy to treat. I’ll let you know when we find something out. Otherwise, Addi is just healing and hopefully will get to come home after this weekend.

7 June 29, 2007 at 08:52 PM CDT
There is not a whole lot new to report, but I know it’s been a few days and ya’ll are wondering what is going on. Addi is still on the breathing vent and pretty heavily sedated. We are really hoping to have her off of this machine soon. We are still eagerly awaiting the pathology report. We heard today that they sent away for additional stains which basically means that they really have no clue and are working hard on trying to pinpoint this tumor. So for now, pray that her lungs would heal and that she will be able to come off the vent soon. And of course continue to pray for a good pathology report and we are boldly asking our God to heal her completely. We truly appreciate each of you. We are comforted by each response, knowing that God listens. Thank you all. Amber

8 July 01, 2007 at 08:59 PM CDT
Well, we got the pathology report back and it is not exactly what we had hoped for. She has an Atypical Taratoma with Rhadbdoid Features. I’ll spare you all the yucky details. This is a malignant tumor and will call for very aggressive treatment. We will meet with the oncologist from MD Anderson tomorrow and will soon have a plan of action. What we need now is a miracle. We know that God can do anything and there is always hope with Him. He can heal her even in the bleakest situations. We still put our faith in him and continue to trust in His ways. I have to get off the computer now as they are closing up so I’ll try to update again tomorrow. Thanks again to everyone and pray like you’ve never prayed before. Amber

9 July 03, 2007 at 10:09 PM CDT
I just located a computer on the 3rd floor open past 9:00. 18 days in the hospital and I’m still finding new areas. I know that some of you have looked up her tumor (AT/RT for short) on the internet and found the very bad reports. The prognosis is not good and the odds seem to be stacked against us. That being said, there still is hope. Our surgeon tells us so, our oncologist tells us so, and most importantly God tells us so. Tony and I have looked at the dark side and momentarily freaked out. Now, we are choosing to look at the bright side. We met with the oncologist tonight and we now have a plan of attack. That makes us feel better and we are ready to fight this thing with everything we’ve got. Like I said before, the treatment will be very aggressive (hit it hard and hit it often). We will start just as soon as she is healthy enough. Her lungs are not totally healed yet. We tried taking her off the vent only to have to put her back on it. She is getting better, but just needs a little more time. Unfortunately, we don’t have time to spare as chemo needs to start, like yesterday. The plan, as of this moment, is to transfer her on Thursday from the intensive care unit over here to the ICU over at Anderson. She had a surgery yesterday to place an Ommya in her head. Basically, this is a tube placed in her head so that they will be able to administer the chemo directly into her brain. She will also have an additional surgery (at Anderson) to put another line into her chest. This is were she will be getting her other chemo medications. She will be getting rounds of chemo all throughout the next year of which most will be inpatient treatments. I think that pretty much gets you up to speed with everything. I’ve been wanting to write thank you notes, but I just can’t seem to find the time. I am surprisingly busy for just sitting at the hospital for hours on end. Always monitors to study, doctors to talk to, and lots of bedside hand holding and praying. So let me once again thank you all for your support. Thank you for the wonderful gift baskets, the parking pass, the food, goodies for the boys, the cookies, the visits, the calls, the cards, the love, etc. etc. etc. A very special thanks to my family who flew down here to help out and be here for me. And another very special thanks to Grandma and PaPa who have taken very good care of the boys and have been a tremendous help to us. Thank you all from the bottom of my heart. I’ll be in touch! Amber

10 July 05, 2007 at 08:37 PM CDT
Just a quick update for ya’ll. Addi is going to stay here at Memorial Hermann for another weeks or so while her lungs continue to heal. She is going to start Chemo tomorrow evening here. We will transfer her to Anderson just as soon as her lungs heal. The doctors from both institutions have been working together to make sure that she is getting the best care possible. We are very satisfied and optimistic about the future of our baby girl. Please don’t forget her in your daily devotions to our God. We know that He listens and we ask that you lift her up in your prayers constantly.

11 July 08, 2007 at 12:28 AM CDT
It’s late. I’m tired. I want to share this. I was just about to get into bed. I wanted to get some encouragement from God, so I went to my bible. I stumbled upon a workbook from my January bible study. Sealed and taped to the back, was a letter that I had written to Jesus. That was our first assignment. Write a letter to Jesus telling Him the deepest desires of your heart. At the time, I remember thinking, “I don’t know what my deepest desires are. Besides, doesn’t He already know?” But, after thinking for a little while, I ended up writing several pages. Pages that I just read a few minutes ago for the first time since I’d written them. Amazing. I said things like: “I desire our children to know and follow you.” “I want us all to grow close to you and keep you a major part of our lives.” “I want to grow spiritually.” “To be closer to you-know more about you and be able to share you with everyone.” “I want to have fun.” “I want to live life to the fullest.” All direct quotes from my letter. Honestly, I’m surprised that I had so much to say about growing closer to God. I would have expected more things about clothes, pedicures, and martinis. Just kidding, the teacher in me took the assignment seriously and I wrote about my true deep desires. The reason I share this with you is because God in the process of giving me one of my deepest desires- a true relationship with Him. This experience is creating a situation exaclty like what I was asking for. I feel closer to God more than ever before. My kids, Tony, all of us, are keeping Him a major part of our lives. And this very website is allowing me to share Him with all of you. Do you see? He is giving me exactly what I asked for. I also said I wanted to have fun and live life to the fullest. Well, let me tell you. This is not fun! It is not fun at all! However, when Addi is healed, I know that I will have more fun than I’ve ever had in my life! And I can promise you, each and every day, I will live life to the fullest! Amber

12 July 09, 2007 at 10:44 AM CDT
Once again, I thank you all for your loving words and prayers. I can’t tell you how it comforts me to hear that Addi is being prayed for constantly. I love the fact that so many of you have told friends about her and now they are praying too. There is not much news today. She started her chemo on Friday night and it will go for 8 days. She is still on the breathing vent and we are really praying that she can get off of it on Tues. or Wed. It’s been 24 days now! Way too long to have tubes shoved down your nose and throat. She has been more awake in the last few days and spends a lot of time watching her Baby Einstein movies. Please, keep the prayers flowing!

13 July 11, 2007 at 11:40 PM CDT
In my last update I mentioned that it had been “way to long to have yucky tubes shoved down your throat.” Well, apparently Addi felt the same way. Late that night, she decided to take matters into her own hands…literally. She yanked all her tubes out! She had restraints on and still managed to free herself. That’s my girl. The good news is that she is still free of the breathing vent and is doing well. She has oxygen running to her nose and various other tubes and wires that she also hates and tries to yank out. But, she is not half as “hooked up” as she was before. And, drumroll please, we got to hold her today for the first time!!! It was as beautiful and sweet as holding her the day she was born. (I’ll try to attach pictures so check the photo gallary.) She will be having surgery on Friday morning to get a port put into her chest to administer future chemo. Her current chemo treatments seem to be going well. It’s really kind of hard to tell and we probably won’t be doing another MRI for about 6 weeks. At that point we should be able to tell if it is working. We are still at Memorial Hermann and might switch over by the end of next week. Just an FYI…MH has been fantastic. We have the utmost respect for all the doctors, nurses, etc. They have truly been a blessing to us. I’ve said it many times before, and I’ll say it many times again. Thank you! Each and every one of your words have touched me deeply. I feel so honored to have such wonderful people in my life. I’ll close this one with a song that just keeps playing over in my mind like a skipping record. I don’t know the name of the song or the artist and I only know these words. I will never be the same again. You have opened my heart to trust your ways. I will walk the path. I’ll run the race. And I will never be the same again. Amber

14 July 14, 2007 at 11:42 PM CDT
Addi’s surgery went well on Friday morning. She now has a port in her chest that will remain there for the duration of her chemo treatments. She did have to have a breathing tube during the surgery and they did remove it afterwards. However, she already had trouble with her airways due to having the tubes in place for so long. Putting them in and out yet again really aggravated the swelling. She had a really tough time breathing throughout last night even with the aid of another type of breathing machine. She struggled and struggled and proved herself yet again. She worked hard for many, many hours and didn’t give up. By this afternoon she was breathing much easier. Whew! So again we will wean her off this machine and will hopefully have her in our arms again in a day or so. The next hurdle will be her swallow study on Mon. or Tues. We have to see if she is able to swallow food correctly before we can remove her feeding tubes. Once that issue is resolved we will be on our way to Anderson. I want to send a special thanks to all the families at The Zone. Wow!!! Your kindness is incredible. The Addi ribbons, the signs, the gift cards and baskets, the prayers and loving words are truly amazing. Thank you.

15 July 21, 2007 at 06:23 PM CDT
I’m so sorry it has been so long since I’ve updated. What can I say? I’m a busy gal. Addi is doing ok. She has completed her 1st round of chemo and it hit her pretty hard. They gave her extremely high doses of several chemo medications. We need to be very aggressive with her treatments as this is a very aggressive tumor. So throughout this week she was really quite sick. As you know, she is having such a difficult time breathing and healing her lungs. Giving her chemo at this time didn’t help that at all. Her white blood cells dropped (as expected) and as of today started to rise again. We need them to come back before we can start round 2. Hopefully, once they start to come back her body will be able to bounce back from all the lung issues. She’s also had a fever (up to 104) throughout the week which leads us to believe that she is fighting an infection of some sort. She is taking a high dose antibiotic that seems to be doing the trick because the fever is getting lower (now around 100). Again, this is not too uncommon since we wiped out her immune system with the chemo. Things have really been up and down a lot this week and we see tons of doctors daily. The chemo has been difficult to deal with but I’m sure we will get better with it in the following rounds. The good news is that she now seems to be turning the corner. We expect her to get better and better each day. And I know I keep saying this but maybe soon we will get over to Anderson. We will move right into the 2nd round so we know that we will be in the hospital for at least another 3 weeks. Continue the prayers for her healing. It really comforts me greatly to know that you are all praying for her daily.

16 July 23, 2007 at 11:41 PM CDT
Addi has really gotten much better in the last couple days. Her blood cell counts have significantly increased, the color is back in her face, she is breathing easier, and she even smiled last night…twice! The sad part about all of this is that we will be starting round 2 by the end of this week or early next week. So just as she recovers, we have to make her sick again. We are probably going to do an MRI sometime this week. Our oncologist really wants to see how the tumor is reacting to chemo. He says he can’t justify this intensive treatment unless he knows that it’s working (because of how hard it hit her). So we really need your prayers. We are asking God to use this medication to erase her tumor and heal her completely. It is a bold request, but we know our God is powerful…nothing is to big for Him. I actually have a smile on my face right now because I am thinking about how awesome it will be to write my next update and give ya’ll the good news. So pray hard over the next few days that the MRI results will confirm what I feel in my heart…that Addison will be just fine!

17 July 26, 2007 at 05:28 PM CDT
Remember my last update when I said that I was smiling just thinking about writing again…well I’m smiling even bigger now. Praise God! I ask that everyone would take a moment right now and give thanks to God for answering our prayers. Addi had her MRI this morning and there are no signs of a tumor anywhere! Not only is there no regrowth in the area of the resected tumor but the “other tumor” is not there. They now think that the spot was not even a tumor at all but just an infarct (a “scar” if you will). A spot that could possibly be in any brain and never be detected. This is fantastic news! This now means that the cancer has not spread and hopefully we’ve caught it in time. We have not yet talked with our oncologist today so I’m not sure how this will effect the chemo schedule. However, I’m fairly certain that we will continue on pretty close to the origional plan. Although there is nothing visible, we know that there are free floating cancer cells that we want to destroy before they find a home. So we will probably transfer to Anderson on Monday and start round 2 then. I’m telling you guys…God is good! I am soooooooo thankful. This battle is far from over and we are not out of the woods yet so I ask you to continue to pray just as hard as before. Continue to pray for a full recovery and remember to give Him thanks and praise. All glory and honor are His to receive! Thank you all for your prayers. I’m certain that He is listening.

18 July 28, 2007 at 08:22 PM CDT
Hi! Just a quick update for ya’ll since I have a moment. We spoke with our oncologist and we are going to continue on as planned. She is scheduled for another 4 rounds of chemo. As I’ve said before, AT/RT is an extremely aggressive tumor that likes to keep showing up so we need to continue stong treament. I know I’ve been saying for weeks and weeks that we will soon be going to Anderson but we are not going just yet. There are several reasons we’ve decided to stay but the top two reasons are: 1-she is getting such exceptional care that we are having a hard time leaving and 2-she has some fluid in her brain (expected after brain surgery) and we need our neurosurgeon to keep close tabs on her. There are several other reasons but I won’t bore you with minor details. So the new plan is to start chemo on Monday at MH and stay there throughout round 2. I’m not sure if we will start on Monday or not since she had a fever yesterday and today. We need to wait until she is a bit better before we can begin again. We’ll see. One day at a time. Let me thank you all again for your love and support. Thank you for the meals, the help with the boys, the visits, etc. etc. I’ve learned many things throughout this journey and one is how to be a good Christian. Thank you all for teaching me that!

19 August 01, 2007 at 10:13 PM CDT
Well, like I said, one day at a time. Everytime I try to make “plans” they change. Addi has had a fever (up to 104) for 5-6 days now with a rash covering her entire body. We are unsure of what the cause is, but have made several changes to her meds to see if that helps. Today was her 1st fever free day and a day like no other. She was very happy today and very much herself. Addi is much stronger and is starting to look like a real kid again. She was awake all day today (8:00-5:30). That is the longest stretch of time she has been awake since she was admitted 48 days ago. So we did not start chemo on Mon. and I’m unsure when exactly we’ll start again. The new plan is to transfer to Anderson on Friday and start round 2 sometime after that. Please pray for a smooth transition. I’m a little nervous about it only because MH has been home to us for quite some time now. I’m comfortable with them and have grown quite fond of many of her wonderful caregivers. I ask you all again not to forget about our little Addi. Please continue to pray for her health. We are thrilled with our good news, but know that the battle is far from over. It really, really comforts me to know that so many prayers are being lifted up on her behalf. Thank you!

20 August 03, 2007 at 10:42 PM CDT
Fooled you once again. We are still at MH and probably will be throughout round 2. I’m no longer “worried” about the move. I said my prayers and turned it over to God. After all, He is her true physician and I know she will be in good hands through Him. Tonight Tony and I are both at home with the boys for the first time in 50 days. We had a fun family night with good friends while Grandma took overnight duties with Addi. Thank you Grandma! Addi had another great day today and her platelets are on the rise. So if she continues this trend she will be good to go for chemo on Monday. Thank you all for your prayers.

21 August 10, 2007 at 12:19 AM CDT
Here’s the scoop. Addi had her 6th surgery on Monday. She had a feeding tube put in. They have sewn her stomach to her abdominal wall and placed a tube directly into her tummy. It kind of looks like a valve on an innertube that you blow up and then “cork” the tube. She hasn’t had any food in her gut for 2 months now and we feel like this is a good way to feed her at the moment. We can just inject formula straight into her stomach. Eventually she will be able to supplement with normal food orally and then we can remove it later on. It really didn’t faze her too much. I’m telling you, she is quite a trooper. We also started round 2 of chemo on Tuesday night. I’ll be honest. I thought round one was difficult. This beginning has been much harder for me. I guess because I know exactly what we’re in for. I see her slowly getting sicker and weaker and I know what is yet to come…and it isn’t pretty. It is just so hard to put her through that again much less again and again. She’s been throwing up and feeling yucky and it’s kind of gotten me down. But you know what? I got to come home tonight and play with the boys. We inspected the coolest bug on our window, captured the littlest gecko I’ve ever seen, and found new play rooms in our Webkinz World. I’ll tell ya, my house looks like a tornado went through it. Legos wall to wall, sheets and blankets strewn over chairs and couches to create Fort Bender, shoes littering the hall, mail stacked a mile high. I’m sure there is at least one of you out there who can relate. My point is this…I didn’t care. In fact, pausing for a moment and looking around I embraced the moment rather than got frustrated by it. These are the good days, the great times spent with our loved ones that are grown and gone much too quickly. The second I start to feel down about the cards I’ve been delt, God shuffles them for me. Then I have a clearer picture of what I truly have, which is so much… so much. When I’m feeling down, I sometimes I look at strangers and I think to myself, “would I rather be her?” “maybe her?” “how about her?” My answer is always no. I love my life. I happen to be in the middle of the most difficult time I’ve ever experienced and I still love my life. That just tells me one thing…God is good…all the time. I do believe my late night ramblings have gone on long enough. Please remember Addi in your prayers. Pray for her comfort, pray for her brothers, and especially pray for complete and total healing. I appreciate each and every one of you. God Bless you all.

22 August 15, 2007 at 12:11 AM CDT
Well, Addi finished round 2 today! 2 down…2 to go. (Don’t hold me to that, as you know how things change!) I’m grateful to have made it this far. Even though I feel like we’ve been in the hospital forever (60 days!) and that we will never get to leave, I know that isn’t true. We’ll just have to keep plugging away day by day. Addi has been feeling pretty sick: high fever, vomiting, raw and bloody nose and mouth, diarrhea, etc. All this and she can still manage a smile and even some play time here and there. She is truly such a precious little girl, always has been. I see her totally miserable, yet she doesn’t complain. I realize that she can’t talk, but she doesn’t whine or fuss. She just takes it like a woman! I’m so proud of her. I look at her and I say to myself, “If she can do it, then I can do it too!”

23 August 20, 2007 at 11:23 PM CDT
Well, we are a week out from her last chemo dose and she is just as sick as ever. Each day I think that maybe today is the day that she gets better, but so far she has only gotten worse. Today, she actually vomited some of her stomach lining if that tells you anything. However, I really do expect her to turn the corner any day now. Soon, her counts will start to rise and she will remember her smile once again. Just on a side note…GIVE BLOOD! I know that I have made excuses many, many times in the past as to why I couldn’t donate. But, thank God that somebody out there donates because Addi has had numerous transfusions. So thank you all you donors! Anyway, that’s where we stand right now. I’ll get back to ya in a few days when Addi is doing much better. As always, keep praying. And hi to all my Rock Island buddies. So nice to hear from you all!

24 August 27, 2007 at 09:06 AM CDT
Thank God, Addi is finally better. Her counts are on the rise and she will be getting stronger each day. As predicted, she has regained her smile; something so precious and often taken for granted until it’s gone. Big news! We have finally made the move to MD Anderson. We were sad to leave our home of 10 weeks and the absolutely wonderful staff at MH but at least this is progress. We feel one step closer to putting this whole thing behind us. We are still investigating what the next step will be. Probably, we will be doing 6 weeks of radiation followed by another 2 rounds of chemo. Ugggg! Finally, the biggest news of the day…I just dropped off Trent for his first day of Kindergarten! As if I’m not emotional enough already. I know he will do fantastic, it’s me I’m worried about. Have a great day everyone.

25 September 01, 2007 at 11:26 PM CDT
Well, we are starting to settle into our new home at MD Anderson. It is hard starting over with all new faces. I felt rather lonely in my tiny, new room and missed all the wonderful people at MH who were constantly checking in on us. Almost all the nurses would stop by daily just to see how Addi was doing even when she was not their patient. I didn’t realize, until now, just how special that really was. Now that we’ve been there about a week we are starting to meet some new friendly faces and it’s not quite so scary anymore. Addi is doing WONDERFUL! Praise God, she is better than I have seen her in the 79 days we’ve been in the hospital. She is strong and happy and even her breathing sounds really good (yes, we’ve still been dealing with the respitory issues). We got to take her out of her room today. She played in the pedidome with her brothers and was happy as can be. I was thrilled to have my whole family in the same room! Our next step will indeed be radiation. I was hoping to hold off until she was a little older since we know that radiating a brain of her age is not without consequence. But, the bottom line is that AT/RT is a serious malignancy. We have to hit it with everything there is if we hope to beat this thing. There is several different things that needs to happen before we start (simulation, MRI, stem cell pharisis, etc.) but she will probably get started in about 2 weeks. She should be able to do radiation as an outpatient. So we will be spending our days (5 days a week for 6 weeks) downtown at the proton therapy center. I will be so thrilled to be able to come home at the end of each day! She will also be getting minimal doses of chemo during this time. However, we expect her to have little side effects from this. Nothing compared to what she has already experienced. After radiation we’ll do 2 more rounds of chemo which I am dreading beyond belief. So, that’s were we are today. We thank God for the success that we are having so far and we continue to pray for her complete healing, as in cancer totally gone, never ever to return again! Thank you all for your continued support.

AddiTony2_300x25926 September 07, 2007 at 10:50 PM CDT
The birth of my children, my wedding day, graduation day, finishing the Houston marathon, all very happy, exciting, memorable days. Wednesday, September 5th ranks right there at the top. WE GOT TO BRING ADDI HOME! She was so happy to be home again. She just kept looking all around, laughing at Mocha, and wanting to play with Trent and Riley. Addi was quite comfortable in her own bed and slept well. All day Thurs. and Fri. was spent at Anderson doing various things and we will pretty much be down there everyday from here on out. And even though it is very frustrating and overwhelming at times, we are so thrilled to be able to come home at night and finally all be together as a family. Words cannot express how happy I am to be part of the real world again, even if it is for brief moments. Addi is doing fantastic. She is happy and playful as ever. We praise God for giving our little girl back to us. Thank you all for your continued prayers and your tremendous support.

27 September 18, 2007 at 10:36 PM CDT
Addi had her 7th surgery yesterday morning. She needed to get a line placed for her stem cell pharisis. A surgery that was suppose to be a quick 15 minutes or so turned into an hour and a half. Our little Addi has once again proven just how special she is. The surgeon was going in through her upper right thigh in order to place the line into her vena cava (the major vein that carries deoxygenated blood from your lower half back to your heart). Well, she couldn’t find it. After doing some imaging, she saw that in fact Addi does not have a vena cava. We assume she was just born without it. Amazingly, her body has compensated by creating a bunch of other vascular pathways. So the surgeon went in through the left side and placed the line into the largest vein she could find. I am in awe that we still come up against new issues on a daily basis. I’m telling you, each day brings us something new to worry about. I typically just include the main points in these updates. I assure you, there is so, so much more to this story. Anyway, all is well. The doctors say that this will not pose any major threat to her. So after her surgery, she went straight to the apharisis clinic to collect her stem cells. She had to stay in a bed for about 3 hours while her blood was cycled in an out of her body. We will then freeze these stem cells to give back to her after her high dose chemo round. The collection is proving to be somewhat difficult as her counts are not real high and she is so tiny that we have to go at a pretty slow pace. So after 2 days of this we still don’t have enough. She’ll go again tomorrow. Hopefully, we can get enough then because she is suppose to start proton radiation on Thursday. Meanwhile, we are stuck back in the hospital until the collection is complete. Addi is still her happy, smiling self. She is getting stronger and stronger all the time and we suspect that she will be walking again fairly soon. She is still hooked up to her feeding tube 24 hours a day. We did get the ok to feed her baby food and liquids. She has had a few bites, but is not very interested. I’m thinking that it is going to take some time for her to relearn how to eat. All the doctors and nurses are always amazed at how happy and cooporative she is. Rarely complains about anything. I could learn a few things from her. Keep the prayers coming and God Bless your day!

28 September 20, 2007 at 10:52 PM CDT
Addi had her very first proton therapy treatment today. 1 down 27 more to go. Today we watched as another little girl celebrated her last day of treatment as Addi just begins. I know that it won’t be long before we too are celebrating her last day. The radiation went well. Pretty uneventful. I had a much more difficult time watching the removal of her femoral line. Yuck! We did finally get enough stem cells. Not quite the 5 million that they wanted but close enough. So, we got to come back home tonight. Addi, of course, was quite happy to see Mocha and her big brothers. Thank you all for everything. We greatly appreciate the help with the boys, the dinners, and especially all the prayers. Please continue to whisper her name in God’s ear as often as possible. He’s listening…we just need to talk. I’d love to get some new pics on here for you but my computer is not cooperating. Most of you would not even recognize her right now. She’s lost all her hair, eyebrows, and most of her eyelashes and she’s actually put on quite a bit of weight. I’ll work on the pictures.

29 September 23, 2007 at 09:05 PM CDT
I wanted to share 2 things with you. 1~~Addi is now walking again! She is still pretty wobbly and looks very much like when she first learned to walk. We are so proud of her. 2~~Tomorrow, Monday September 24th, Chili’s resturants nationwide are donating 100% of all proceeds to St. Jude’s (a very important children’s cancer hospital). Our family and some friends will be eating at the Chili’s in Atascacita at around 5:00. We loved to see you there!

30 October 06, 2007 at 04:46 PM CDT
Hello everyone. Just thought I’d let ya’ll know how great Addi is doing. She has finished 11 radiation treatments and 2 intrathecal chemo injections and is better than ever. Next week, in addition to radiation and intrathecal, she’ll be getting a daily iv dose of chemo. I’m praying that this will not put her over the edge as far as side effects go. Our oncologist agreed to let us do this on an outpatient basis provided that all goes well. For some reason I have a major phobia about going back into the hospital. Can you blame me? So, 17 more radiation treatments, then 2 more big rounds of chemo, and then we’ll see. I want to give a special thanks to everyone who’s brought us meals. That has helped us out tremendously. Even when we do make it back from downtown at a decent hour it is still very difficult to get dinner together or do anything for that matter. Either Tony or myself is literally tied down with Addi constantly. She still has her feeding tube in and we need to keep it running all the time in order for her to get enough calories. So we just follow her around holding her cord as if she were a little dog connected to a leash. I’m so thankful that she is back to her active, curious self, but whew, sometimes it’s a little exhausting! God bless you all and thanks again!

31 October 28, 2007 at 10:32 AM CDT
My oh my how time flies when you’re having fun! (I know some of you will hear sarcasm in this, but I’m serious.) I can’t believe so much time has passed since my last post. As predicted, that full week of chemo did catch up with Addi. She was pretty sick for about a week and then bounced back quite nicely. She has been a bundle of joy lately and we are ever so thankful. Life actually seems kind of normal. Well, our crazy, hectic, stressful, new normal anyway. Addi’s last day of radiation will be on Tuesday! I’m starting to see the light at the end of this tunnel. It is still just a tiny spec in the distance, but it’s visible. She’ll get a couple weeks break and then she is scheduled to start her next big, bad chemo round on Nov. 19th. She will be admitted to the hospital for 8 full days of poison. I would rather stick a needle in my eye than do this to her again, but what can I do? Anyway, we’re doing everything we can to enjoy our time together. Please keep praying for her complete healing. He’s listening! Here’s a quick story to emphasize my point. The other day at radiation the machines broke down before Addi got in. I spent 2 and a half hours wandering around trying to keep a hungry, thirsty Addi entertained while my mind raced with all the reasons she had to get this treatment today. Worry, stress, and frustration overwhelmed me. Then, I decided to speak with the person in charge. I closed my eyes, bowed my head and asked God for help. Not 20 seconds into my prayer and I felt a tap on my shoulder, “Are you ready?” the tech asks. Some people might call that a coincidence. Others think it’s simply participating in the recently popular “The Secret”. I’m here to tell you that it’s God plain and simple. It’s Him reminding me in a very concrete way that he is here and he is listening and all we have to do is ask. So ask away!

32 November 02, 2007 at 08:48 PM CDT
Boy, did I speak to soon. I’m now sitting back at Memorial Hermann at the same computer where I entered my first update. Yesterday, Tony and I had to relive the very worst day of our lives and face our darkest fears. It all began this Monday with Addi vomiting and by Tuesday morning there was clearly something wrong. She could not stay awake, couldn’t open her eyes or focus, and was obviously in pain. This was her last day of radiation and instead of celebrating we ended up in the ER. We decided to keep her in the hospital overnight because there was obviously something wrong although we were not sure what it was. Wednesday, we went home and then had an MRI first thing on Thurs. What we saw were 2 new “spots”. One is a large hematoma (blood clot) and the other is a tumor. We do not know why her brain is/was bleeding or what the tumor is. Addi has been in pain and “out of it” since Tuesday and this was due to hydrocephlus (build up of fluid in the brain). So today Addi had her 9th surgery. They took out her ommya (where she once got her chemo injections in the brain) and replaced it with an external shunt that drains the excess CSF into a bag. I can already tell that this is going to be a challange. How do you keep a toddler still while her head is connected to a bag on a pole beside her bed? She is now wide awake for the first time all week. Obviously, her brain was under extreme pressure and she needed this shunt. So we are planning on another craniotomy on Monday morning and we’ll go from there. Needless to say, Tony and I are devastated. This is very bad news. Just when we were starting to see the finish line we’ve been placed back at the start. However, we both have our faith in The Lord. We trust and believe in Him. We’ve been asking for a miracle all along and we are still asking for the same miracle, for Addi to be healed. We know that nothing is too big for God and anything is possible. So Tony and I will just hold onto that. We thank you for your prayers and help. We need both now more than ever.

33 November 05, 2007 at 11:12 PM CST
AddiSick4_300x185Dear Friends, I am posting this update for Tony and Amber. I (Traci) wanted to let you know that Addi is out of surgery and in recovery back in her ICU room. She was awake and cranky when I left at 8:00. Her sugery did not start until 2:00 so it was a long day. The surgeon tried his best to remove the tumor but unfortunatley it is too intwined with her optic nerves. He would have had to take her vision in order to remove it. Dr. Wolf met with them and discussed other treatment options. The pathology report is not finished but, the surgeon felt is was similar to her last one. This is most likely more cancer and fast growing. The doctors spent a long time discussing all their options. The future is very uncertain. They are in need of your support and prayer. Tony and Amber are two amazing people who love their children more than anything else in the world. Their love for each other, for family, friends, and God is so inspiring. They need our help and I want to tell you a way that we can. We are having a Benefit for Addi on November 17th at the Barrington Manor House. There will be food, wine, beer, and fun. It is $100 a couple and $50 a single. The money raised will be put in a bank account for medical bills. The cost of medicines and copays alone are expensive. Last week, Addi had to go to the ER and be hospitalized. That will cost them 1100! The copays for the MANY doctors they see is $30. They may see 6-8 different doctors in one week. They probably spend $60 a week on parking. Tony and Amber are not worried about money right now….just Addi. They will have to face it sooner or later so lets give them our support by coming to a party in Addi’s honor. If you can’t come but would like to donate to her fund, you can go to any Compass Bank and ask to put money in Addison Bender’s account. Any money not needed, will go to Addi’s Faith Foundation. This foundation will raise money for pediatric cancer. If you would like more information about the benefit, please call any of these people: Traci Ferris 281-361-6840 or 832-724-4433 Tee Bender 832-445-7683 Niki Dixon 281-744-2906 Two years ago Amber wrote this for my family : Always remember that God is right beside you every step of the way. He may not give us the gift of understanding the ultimate question “why?” but he has given us a far greater gift….himself. He truly is our Shepherd. You and Tony have always been there for us….Let us be here for you. We love you!!

34 November 07, 2007 at 10:50 PM CST
Hey….it’s Traci again, I wanted to add to my last post. The time for Addi’s Benefit is 7:30-11:00pm November 17th. If you need directions or infromation about this event please feel free to call me at 281-361-6840. Also, there are many of you out there reading this from other places than Houston. If you would like to make a donation to Addi, big or small, you can send me a check written out to Addison Bender and I will add it to the fundraiser money. Send it to 3118 Silverberry Trail Kingwood, Tx. 77345 If everyone sent just a little…..wow would that make a difference! I talked to Amber today and she sounded okay. The surgeon is going to be putting in Addi’s internal shunt tomorrow!! The shunt allows the fluid to drain properly. This is a good thing because if all goes well she could be going home as soon as Friday evening!! She has been awake and watching her Baby Einstien. She has some swelling and bruising from her surgery but doing pretty good. Typical Addi….sweet as an angel. Pray for the Benders to get home soon so they can ALL be together under one roof. It’s Amazing how much we take for granted in our busy lives. We should all be so lucky to have the love and devotion that this family has for each other. Traci Ferris

AddiSick5_300x20635 November 08, 2007 at 07:44 PM CST
Surprise, surprise…we’re home. I can’t believe that Addi had major brain surgery on Monday, looks like she got hit by a train and yet is sitting in our living room. Our doctor decided that a shunt was not necessary at this time and wanted to get us home ASAP. He understands that our time with Addi is both limited and valuable. Our oncologist has given Addi a zero percent chance of making it and offers very little hope with future chemo treatments. Tony and I are not quite ready to throw in the towel and have opted to begin another agressive chemo schedule starting on Monday. All I can say is that we believe in miracles and know that ‘anything is possible for Him who believes’. So we will continue to fight and continue to pray for Addi to be healed. And we will cherish every second we get to spend in the presence of this living angel. Thanks again to everyone for their love and support. And a very special thank you to all of you working on the benefit for us. It is appreciated more than you’ll ever know.

36 November 14, 2007 at 06:13 PM CST
Surprise, surprise…we’re back in the hospital. Our cherished time at home was very short lived. Over the weekend Addi was leaking CSF (cerebrospinal fluid) from her incisions on her head. On Sunday she had a fever and started vomiting. We knew this was the beginning of an infection and immediately took her to the ER at Memorial Hermann. She had another CT scan which indicated that the hydrocephalus was back. So bright and early on Monday morning Addi had her 11th surgery. We put the external shunt back in to drain the excess fluid off her brain. Cultures show that indeed she has an infection in her CSF. As if brain cancer is not enough, Addi has to add a little meningitis into the mix. So we are stuck in the hospital until this infection clears. Then, we will do another surgery to put in an internal shunt. We are unsure what we will do from there. Each day that passes the tumor is growing and we honestly don’t know how much time we have left. We are just going to listen to what Addi (and God) tell us over the next week. We may opt to do another aggressive chemo cycle, we may try a chemo cycle that can be done at home (Tony and I are now honorary MDs), or we may do nothing. I feel like we will know when the time is right. Now…let me just say that I am blown away by the love that is completely surrounding us. I thought that Addi had a lot of prayers before and I feel like that has doubled within the last week. I am simply in awe of God’s power. Tony and I have a peace that can only come from God and I know that has everything to do with all of your prayers for our family. Thank you and keep them coming. All along God has told me, “Trust me!” and that is exactly what I plan to do. God bless you all for everything you’ve done for my family!

37 November 17, 2007 at 08:05 PM CST
I’m standing at a computer in the hall outside of Addison’s room and I’m thinking of so many of you who at this very moment are gathered together in honor of our family. Words cannot express our gratitude. It has been about a week and despite the top gun antibiotics, motrin, and tylenol she still continues to spike fevers of 103.5. We’ve tested the CSF yet again and find that the infection is not only still there, but getting worse. We are going to have an MRI on Monday and hopefully get some answers. Answers that we might not want to hear. When we found out about the new tumor we were crushed for we knew exactly what that meant. When we had the last craniotomy and they were unable to remove any of the tumor we were left without hope. Hope in the medical world that is. One of my first and most recurring thoughts was how am I suppose to go on? How do I even begin to breathe without my little girl? As soon as I stopped thinking about this world and the medicine of today and turned to God, I began to feel that I would indeed be ok. Here is where ya’ll come in. Over the last 3 weeks an awful situation has turned into a (insert any word that means more than awful!) situation and the news seems to be gettin worse daily. However, my spirits have been on the opposite trend. I started out feeling utterly hopeless that day of the surgery and have gained more hope each and every day since. That is directly because of you. From all of your love and support, your constant prayers, and your tremendous kindness I feel uplifted. I feel hopeful in a completely hopeless situation. So thanks to you all and thank you God for carrying me through the “sand”.

38 November 19, 2007 at 11:52 AM CST
What an awesome, inspiring, wonderful night! I wish I could have been there but we needed to be with Addi. I’m sure I would not have been able to stop crying long enough to speak with anyone anyway. I cannot believe how successful the benefit was. It’s certainly a God thing! I’ve always thought that the English language should have more than one word for love. I love pizza. I love my children. Obviously two very different kinds of love. Well, now I think we should have another word for thank you as well. You say thank you to someone who holds the door open for you. And, you say thank you to the people who raised over $47,000 in your daughter’s name. Obviously two very different kinds of thank you. Tony and I are extremly excited and can’t wait to “pay it forward”. We have so many plans for this foundation and we are thrilled to have such an awesome beginning. Thank you all! addisfaithfoundation.org Check it out!

39 November 22, 2007 at 07:02 PM CST
Hello everyone, this is Tony. Many of you may have been wondering if I was ever going to script an update on this carepage. Writing is usually not my favorite thing to do, probably because I am in sales, and I usually get paid to talk and not to write. I also hesitate to post an update many times, simply because I, like many of you, have been so truly inspired, enlightened, uplifted, and brought closer to God through the writings of my lovely wife, Amber. I cannot even begin to count the number of nurses, doctors, friends, family, and many other care page followers that have made statements such as “Reading your wife’s journal entries has changed my outlook on life, and made me a better person,” or “helped bring me closer to my family,” or “inspired me to reestablish my relationship with God.” Well, I am writing today to thank you for all of those compliments toward Amber’s inspirations and thank you for ALL that you have done as members of our extended family. Before I continue my message to everyone, I need to update you on Addi’s condition. Monday night, she had a MRI, which confirmed that she has additional tumors in her spine, and the tumor on her optic nerve has grown to about 2 centimeters in diameter. The first spinal tumor is just behind the neck, and is the reason why she was not able to get rid of the menengitis bug. The tumor was acting as a cork and not allowing any of the antibiotic to penetrate to the lower part of the spinal fluid, therefor the infection was not being penetrated. The MRI also showed two additional tumors at the bottom of her spine. Hard to believe that all of this could have grown while she was going through chemo and radiation. So, in total there are four tumors, none of which are able to be resected. In order to help clear up her infection, our neurosurgeon removed as much of the top spinal tumor to allow the spinal fluid to flow through, but he said the tumor was not only wrapped around the cord, but also penetrating inside. This surgery was done late Tuesday night, which is also the day that we realized that Addi is not able to see, due to the tumor on the optic nerve. She has also been spiking fevers as high as 103.8 as soon as her ibuprofen wears off. Movement in her fingers and also her right leg seems to be fading. It has really been a difficult week for all of us. We are working with our team of doctors to try and keep her comfortable and pain free. Amber and I take turns lying next to her, as we know she can hear and feel our presence. Wow, I feel like I am writing about somebody else. We ask that you pray for her comfort and our peace and understanding. It is currently 10:30 am on Thanksgiving morning as Amber and I lay with Addi in her hospital room waiting for the rest of our family to arrive at the hospital, so we can share Thanksgiving together. The wonderful volunteers with the Ronald McDonal House are cooking Thanksgiving dinner for all of the families here. For no, it doesn’t matter where, just how we spend it, and that how is together with Addi. Over the last two weeks her condition has really worsened and we have had to start making some very difficult decisions that will forever push on our hearts. I don’t want you to think that we are giving up, but we truly understand that Addi’s time here on this Earth is completely out of our control and we need to give thanks for what we have had so far. Yesterday, all of Addi’s grandparents sat with her, while Amber and I took Trent and Riley across the street to the zoo. For this, I am thankful, first, for her to be able to feel the love from her PaPa, Grandma, and Nana Neech, and second, for a wonderful much needed time with our boys. My shoulders are sore from carrying the two of them all over. The boys really do give us therapy, as they make sure we are giving them our full undivided attention. ** ‘I have run out of space, so I need to post a second update’

40 November 22, 2007 at 07:32 PM CST
continued from first post. This time has also been extremely difficult for the boys, this was very apparent as Riley asked why he wasn’t as special as Addi, and why do we always pray for her and not for him. We know he is only four, but he has been affected, so we ask that you pray for our boys to understand and feel the love that we have for them, and that it burns inside us to be apart from them. This morning a child life specialist brought Addi a Thanksgiving balloon. The message attached to the balloon said, “May you find peace this Thanksgiving season.” At times during each day we struggle tremendously, but it is our faith in the Lord that continues to give us strength for this journey. At the bottom of the message card was another statement that said, “We give thanks for unknown blessings already on their way.” I would have to say that these two statements pretty much sum up where we are and where we are heading. Although this experience has been undeniably horrible, we WILL find peace, and we WILL still look forward to the many blessings in our future, knowing all along that God is in control. It is not just coincidence that Addi’s middle name is Faith, I feel that Addi has given people reason to grow, rekindle, or establish Faith in their lives because of her presence. What a blessing she is to all of us!! With Love and Many Thanks, Tony

AddiSick6_250x18741 November 30, 2007 at 04:17 PM CST
For a long time now, but especially over the last couple weeks Tony and I have been standing at the edge of a very high cliff knowing that we have to jump off. We’ve watched Addi suffer more than anyone should ever have to and her condition has progressivly gotten worse with each passing day. We held her hand as she has lost her vision, her abitlity to move, her mental capacity, and most importantly her smile. We step up to the edge of the cliff and say let’s jump on the count of three. Just as soon as our toes touch the edge we quickly retreat. Not yet. What if? Maybe? How can we? Then we look at her pain as say yes, we need to jump. We step up to the edge of the cliff…one, two, wait..wait…wait.. We again quickly step back. This is what has been going on. This is what we’ve been doing ovr the last few weeks. Well, a few hours ago we jumped. We have decided that we just can’t put her through even one more thing. So instead of yet another surgery to put in a shunt that will eventually fail, we decided to clamp off the one that she has now. The CSF in her brain will increase and she will drift off in a peaceful sleep. We have lots of pain medication on board to make sure that she suffers no longer. So Tony and I are now falling, falling, falling off the cliff. We’ve jumped together, hand and hand, and for him I am so truly thankful. I know that God will cushion our fall. It happens to be cushioned with pine trees that we are thumping and bumping all the way down causing us both tremendous pain, but it is cushioned never-the-less. Cushioned enough to leave us both standing at the bottom. We will be bruised and bloody, but because of God’s love our wounds will heal. Only through God’s love, our love for each other, and love from ya’ll will we actually survive the fall. One other thought. I’ve been praying for a miracle all along, not fully realizing that I had already been given that miracle…Addi. I fully understand that every child is a gift from God, but Addi truly is a miracle. Tony and I have been through 6 miscarriages. We have had to say goodbye to 6 children before we even got to say hello. I’ve never discussed Addi’s genetic condition on the care pages mostly because it is just too difficult to explain, unless of course you are fluent in martian. But, she has a genetic deletion and several doctors have told me that it is amazing that she is here. She very well could have been another one of my miscarriages. God had other, special plans for her and I’m so glad that he did. As much pain as I’m in, I am so happy to have met her and loved her. I’m so proud to be her mom.

42 December 03, 2007 at 08:40 PM CST
Update from Tony: Well, it has been four days since our neurosurgeon removed Addi’s shunt, at that time he told us that she would probably be able to last 24-48 hours before the pressure on her brain would eventually become too much to endure. She continues to hang on, showing us, yet once again, how remarkable she really is. It is very apparent to us that she is ready to move on to the next chapter in her eternal life. Addi is on constant morphine and sleeps the entire day. We spend every waking second next to her in bed, letting her know how much we love her, and that we will never stop loving her. We also tell her daily how many wonderful people have been praying for her and how she has impacted so many lives, many of which she has never even had the opportunity to meet face to face. I want to share a couple of proud mom and dad moments with everyone. First, on Friday, three of our main PICU doctors, from the summer, took time out of their day to come to our pod and visit us. One of them told us something that I will never forget. He said, “Addi has helped him to become a better dad and doctor, and every time he treats a new child in the ICU he feels that a little bit of Addi will be right there with him.” The same day, we had many other nurses and residents from the hospital just wanting to stop by and see how she was doing. Many of them would spend their entire lunch break just sitting in the room with us, watching her sleep. What a wonderful testament to the outstanding doctors and staff that we have been blessed to have here at Memorial Hermann. Secondly, our oncologist from MD Anderson actually had to walk out of the room today, as he has become very attached to his little “sweetie”. He had a hard time seeing her condition today, and said that she is almost home. I think it is just amazing to witness the commitment that our doctors and nurses have given to us throughout this journey, and we love them all. It is important to give praise to God for giving us the family, friends, faith, and love to allow all of us to make it through this trying time. Tonight, Amber and I ask that you say a special prayer of comfort and peace for our wonderful little girl, as we do not want her to feel any pain or suffering when she chooses to go. God Bless all of you, Tony, Amber, Trent, Riley, and Addison Faith

43 December 04, 2007 at 08:47 PM CST
Today at about 3:00 Addi left this world to go home to her heavenly Father. We are sad beyond belief, but happy that she no longer has to suffer. The funeral will be this Friday. I’ll give full details tomorrow.

44 December 05, 2007 at 07:02 PM CST
Here are the details for Addi Faith’s services. Tony and Amber welcome all of you to come and honor the life of their Angel. In leiu of flowers the family request that you make a donation to Addi’s Faith Foundation. www.addisfaithfoundation.org Visitation will be Thursday night, Dec. 6 from 6:00 – 8:00pm at Kingwood Funeral Home 22800 Hay 59N 281-358-9005 Memorial Services will be Friday, Dec. 7 at 1:00 at Christ the King Lutheran Church 3803 W. Lake Houston Parkway 281-360-7936 Everyone is welcome to follow the procession to the burial site immediately following the service. Rosewood Cemetery 2602 South Houston Ave. Humble, TX 281-441-2171

45 December 09, 2007 at 09:47 PM CST
We all miss our little Addi girl more than words can say. God has been with us all along and He is still right here beside us helping us to get through each day. He is the one who gives us strength for there is absolutly no way we could possibly do this on our own. We thank you all tremendously for your outpouring of love. Flowers, food, and gifts poured in and we cannot thank you enough for thinking of us. It means so much. I also wanted to let ya’ll know that we are heading to Mexico for a little quality family time and some much needed R & R. I think it is just what the doctor ordered! We wish you all a very Merry Christmas and a happy New Year!

46 January 01, 2008 at 07:55 PM CST
lands_end_350x266Happy New Year! We made it back yesterday after our 21 day “tour de Mexico”. We had a fantastic time playing on the beach, touring Mexico City, climbing pyramids, chasing millions of butterflies in the mountains, and spending every second of every day TOGETHER. It was just what our family needed. We thought of Addi constantly and shed many tears but also had many laughs as well. I guess that’s life. Not black or white, happy or sad, but always a combination. As long as you have your eyes fixed on God you will be ok no matter what side of the fence you happen to be on. So the Bender family is OK. Very, very sad, but ok. Once again I thank you for the many cards and gifts and donations to Addi’s Faith Foundation. I’m astounded by the love you’ve all given us. Thank you. And thank you very much to “Santa” this year. Gifts were wrapped and ready under the tree upon our return and the boys were thrilled. Trent exclaimed, “This is way more than Santa brought us last year!” So thank you for providing my boys with a very happy Christmas. Love to you all.

47 January 02, 2008 at 09:44 PM CST
Happy Birthday Addison! It’s amazing how quickly things change. Last year at this time we were celebrating life instead of agonizing over death. I’ll tell ya, I’ve cried so much, especially in the last few days. We just miss our baby so, so much. I have no gifts for Addi this year so I thought I’d share with you a few of the many gifts that Addi gave to us. 1~LISTENING Addi never did learn to speak but she listened intently. She loved to listen to story after story and song after song. You could talk to her for hours and she would just listen. ADDI’S GIFT: Be still and listen. God is speaking all the time, but if we are doing all the talking we will never hear what he (or anyone else) has to say. 2~LAUGHTER Addi laughed…a lot. She was such a happy little girl and rarely (and I mean hardly ever,ever) cried. And let me assure you, if she did cry she had a darn good reason! ADDI’S GIFT: Laugh often. She proved, quite literaly, that laughter really is the best medicine. 3~LOVE Addi loved with her whole heart. And let me tell you that she loved everyone. She did not pick and choose who she was willing to love. She gave her love freely and without conditions. She loved her mom and dad, and a woman in the elevator. She loved her brothers, and a man at the store. She loved her grandparents, and a child in the park. She loved her doctors and nurses, friends and family, her dog, EVERYONE! I think that is one of the many reasons that everyone loved her so much. ADDI’S GIFT: Love unconditionally. Let your love shine through for everyone. It’s what God calls us to do…Love our neighbor as ourselves. My little girl sure was smart!

48 January 12, 2008 at 10:51 PM CST
Hello everyone. I hope you are all doing well and enjoying life exactly where you are right now. I’m not quite ready to give up these carepages yet and say goodbye. Just like I’m not quite ready to “clean out” her room. I’m sure someday I’ll get there, but not yet. We miss her dearly. My brother, along with other friends and family members, are holding a benefit on Addi’s behalf. I know that there has been a tremendous amount of work that has been put forth to make this happen and I thank all those involved. People from all over have supported our family and Addi’s Faith Foundation and we are soooooooo greatful. We’ve now collected enough to cover our medical expenses, as well as get Addi’s Faith Foundation up and running. All I can say is that the money that has been raised, and will continue to be raised, will be put to very good use. Tony and I promise to make this foundation something special…just like Addison! Our 2 major goals are to support cancer research and to provide support to families similiar to our own. I cannot express to you how devestating this situation can be. Our family was one of the lucky ones. We have a supportive employer and wonderful friends and family. Our goal is to help those who are not as lucky as us and of course to CURE THIS AWFUL DISEASE! So I’m adding on the note from my brother which has the information about the upcoming fundraising event in Rock Island. I pray that God will use your money for good. Thank you, thank you, thank you. Oh yeah, I forgot, THANK YOU! Amby & Tony, Glad to hear the fondation might get a chance to help already! Keep up the good work. If you decide to mention the benefit on the care page here are all the particulars: Addi’s Faith Foundation & Fundraiser will be January 20th 4pm till 8pm at the Plumbers & Pipefitters Local 25, 4600 Blackhawk Road Rock Island. There will be a taco dinner for $6.00 and baked goods for additional cost. Donations for soft drinks, wine and beer that will be available are greatly appreciated. We will have a 50/50, drawn hourly when Addi’s favorite song Twinkle Twinkle Little Star is played. Tickets will be sold to be placed with items of ticket holder’s choice, then each item will have a winner drawn. There will be a silent auction and a live auction starting at 6pm. We will be selling raffle tickets for a 42” HDTV at $1.00 each or 6 for $5.00. Addi’s Faith Foundation T-Shirts will also be available for $10.00. Football fans need not worry about missing the big game. We will have a HDTV set up showing the game. Anyone needing additional information or would like to donate an item can contact Eric Bopes at (309) 781-8979. Eric

49 January 22, 2008 at 02:00 PM CST
Thank you again! The fundraiser back home in Rock Island was a huge success. Thank you so much to my brother for getting it going and working so hard. I know there were lots of people who came together to make it the success that it was and I thank you all. Thank you everyone who attended and thank you everyone who donated and thank you, thank you, thank you. Tony and I are off and running with another fundraiser already. This one will be on Friday, February 1st @ 7:00 @ the Kingwood High School basketball game. Texas is doing a coaches vs. cancer night and Kingwood is using Addi’s Faith Foundation as its cancer cause–awesome! That is also the night that we will be handing out our first foundation checks. One to a special family whose 3 yr. old is fighting the same disease as Addi and one to MD Anderson Cancer Center to aid research in pediatric brain tumors. How exciting is that?! We are selling raffle tickets $5 for one or $10 for three. Prizes are: $10,000 half-court shoot out sponsered by Trey Guidry at State Farm, a 4 wheel ATV from K’s Motorsports, 4 Houston Rockets tickets, a Seiko Quartz Watch from Delton Hayes Jewelers, and a 1 year unlimited tanning membership from Mercury Tan. Winners need not be present to win except for the half-court shoot out. If you’d like tickets you can e-mail me @ amberbender@embarqmail.com or call 281-361-4730 or even respond with a message on the care page. There is a huge hole in our hearts and our family just isn’t the same without Addison. I can’t begin to tell you how much we miss her. This foundation has really given us something positive to focus on and we are really excited about the great things that it’s starting to produce. I thank you all tremendously for your support.

50 February 03, 2008 at 02:29 PM CST
Wow! Friday night’s fundraiser was bittersweet in the truest sense of the word. On one hand, it was absolutely amazing to hand over two very important checks. One for $20,000 to fund research efforts and one for $3,500 to a wonderful family fighting to save their son’s life. On the other hand, it breaks my heart knowing what our family’s had to endure to ignite this fantastic organization. It was amazing to see Addi’s beautiful face smiling from the backs of so many t-shirts, yet gut-wrentching that she is no longer with us. Like I said…bittersweet. But really, I’m writing to thank everyone. My dear friends and family came through for me once again. It is so completly awesome to have such wonderful people dedicated to our foundation. I am truly honored to have so many of you pour your hearts and souls into making Addi’s Faith Foundation successful. Thank you! And the community…wow! Once again you have given so generously. Thank you so much to the Kingwood High School basketball team for letting us have this event. Thanks to the coaches and players who sold raffle tickets and supported us. Thanks to the Club 45 kids, Riverwood basketball players, the girls basketball. All the local businesses who gave so generously. I know I’m missing people, but please know that I thank you too! I feel like I’m giving an Oscar speech and the music is starting to play because I’ve talked to long. Anyway, thanks for a wonderful evening and another $6,500 for Addi’s Faith Foundation. I’m telling ya…this FAITH foundation is gonna move mountains!

51 February 28, 2008 at 05:34 PM CST
Hi ya’ll! Hope you are doing well. We have settled into our new normal. It’s difficult to live with a huge hole in your heart, but it is possible. Amazing, but true. One of Addi’s favorite nurses from Memorial Hermann brought a new fundraising opportunity to my attention. I might as well inform you upfront that you will be hearing from me a lot about fundraising. You have all been tremedously generous and I am truly appreciative. Please know that I’m simply presenting opportunities for you to help. In no way, do I expect you to give all the time. Just pick and choose what events you’d like to help with. Like I said, I’m just saying this because ya’ll have given so much and I feel bad asking for more. OK SO HERE’S THE LATEST. Run for the rose is a 5K & 1K Family Fun Run/Walk held on Sunday, April 6th. This is a foundation that also funds brain tumor research. It was created in memory of Dr. Marnie Rose who was diagnosed with brain cancer at the age of 27. They have named a wing of MH in honor of her. It is called the Rose Pod and ironically, that is where Addi stayed and where she took her final breaths. I have created an “Addi Faith” team for this race. I really hope that you will join my family and I on that morning. You can go to http://runfortherose.kintera.org/teamaddifaith to register for the run and be a part of our team. You can make and on-line donation on the previous site or at http://runfortherose.kintera.org/addifaith Visit www.runfortherose.com for more info on Dr. Marnie Rose and her legacy. I hope to see you out there! God bless.

52 March 03, 2008 at 04:55 PM CST
The last few days have been tough on me. I’m not sure why. Maybe because tomorrow is the 3 month anniversary of Addi’s death. Who knows though because the strangest things seem to choke me up. Last night was especially painful. I was just missing my baby so, so much and I simply had to see her. I reached for the video camera and couldn’t find it right away. I almost had a panic attack thinking that I may have lost one of the few things that I have left of Addi. Thankfully, I found it. I rewound a little ways and pressed play. I came unglued! There was Addi, beautiful and full of life. She was sitting in her high chair eating goldfish crackers and watching Spongebob. She would look at me, point to Spongebob, and laugh. She was so happy and oh so adorable. Ironically, she was wearing a shirt that said “Angel” across the front. That was the first time I’d watched any videos and boy was it hard. I had forgotten just how vibrant she really was. This video was taken not too long from when she was admitted to the hospital for the last time. That final month I watched Addi lay in bed 24 hours a day sick and miserable. Her in a hospital bed, her final breaths, her funeral…those are the movies that have been playing over and over in my mind. So, as painful as it was, I guess it was good to see. I need to start playing those happier movies in my head instead of all the sad ones. That’s hard too, though, because those happy movies don’t quite fit with her being buried in the ground. Oh well, grieving is a process and I’m still working through it. Some days are just better than others. On another note, and honestly I don’t have the energy to defend myself right now so it will be brief. There is only one thing in this world that Tony and I want more than our daughter back in our arms. And that is for no other family to have to go through the same horrific experience that we did. That is why we established the Addi Faith Foundation. We are going to do everything we can to help find a cure so that someday when a child has to endure surgery after surgery and sickening rounds of chemo and doctors and needles and hospitals and things that nobody should ever have to go through, it will not have to be for nothing. So that someday they will live to tell the story themselves instead of their parents telling it for them. All of the money has, is, and will be used for that. Anyone who knows Tony and I knows that our hearts are true and our intentions are exactly what I just stated. PERIOD!

53 March 31, 2008 at 09:36 PM CDT
I’m sorry I left you all for so long on such a sour note. I’ve been meaning to update for quite some time now. I actually posted before, but it somehow never went through. The responses I received after my last update were very encouraging and I thank you for that. Your kind words and continued prayers really help me. I wanted to tell ya’ll about my Easter. It was different from any other Easter I’ve had before. On one hand, it was very difficult and sad. There was one very special, very girly Easter basket left in the attic. And rather than experience, I had to imagine what Addi would look like collecting her Easter eggs. On the other hand, it was joyous and full of meaning. I’ve always been a believer. I have always known that Jesus died on the cross and then rose on the third day. I’ve always known that because of this I was given grace and was going to Heaven. You see, I’ve always known this truth, but it wasn’t until this year that I actually appreciated it. The one thing that is “getting me through” Addi’s death is knowing that she is currently alive in Heaven and that one glorious day I’ll see her there. What greater gift is there? To say that I appreciate this gift is an understatement. As a mother, I would gladly lay down my life for my children. Thankfully, Our Heavenly Father was willing to do the same. Happy late Easter everyone. May you truly find peace and joy in His resurrection. p.s. I know that some of you are planning on walking with us this Sunday, April 6th. Although you can still register the day of the walk it is best to do it ASAP. That way you won’t have to get up as early! Go to www.runfortherose.kintera.org/teamaddifaith and click on Join My Team.

54 April 30, 2008 at 08:58 AM CDT
Hi all. Hope you are all doing well. We are moving along, as life seems to do. Sometimes I wonder why the world didn’t stop on Dec. 4th, but everything just keeps moving along, and so do we. We’re doing well, even though everything seems to be bittersweet. Life is still so wonderful and full of sweetness, but there is a definate “aftertaste”! I wanted to share a couple things with you. First, Andrew, is a little boy who is currently battling ATRT. His family could use your prayers and support. They have asked people to pass on their care page info so that as many people as possible will know Andrew and what an amazing child he is. Check him out at www.carepages.com page name AndrewPadfieldCarePage Leave a message of encouragement and tell them your friends of Addi’s! Also, the Run For The Rose was a huge success. Team Addi Faith had 74 people and raised $2,000 for the Marnie Rose Foundation! Way to go! Thank you so, so much for everyone who participated. Finally, the next Addi Faith Foundation event is coming up. Croppn’ For Kids With Cancer! It’s a scrapbooking event that will be held at Christ The King church in Kingwood on Friday, June 6th from 6:00 pm to midnight. The cost is $25 to scrapbook for the evening. We’ll have prizes and snacks and lots of fun. I’ll pass on more info soon. I just wanted you to mark down the date if you’re interested. God bless you all! Amber

55 May 05, 2008 at 10:55 AM CDT
I just wanted to give more info on our upcoming scrapbook event for Addi’s Faith Foundation. Come and scrap the night away or just come and socialize with your friends. Friday, June 6th from 6:00 pm – Midnight At Christ the King Lutheran Church 3803 W. Lake Houston Parkway Cost: $25.00 includes snacks, drinks, and 5 raffle tickets (Cost at the door is $30.00) Make checks payable to Addi’s Faith Foundation Mail checks to: Chrissy Bryant 8127 Cross Country Dr. Humble, TX 77346 ***Checks need to be received by June 2nd. There will be a Creative Memories consultant on hand with some supplies and all profits from any orders that evening will go directly to Addi’s Foundation. Thanks Megan Ferris! I hope to see many of you there! Questions? Contact Chrissy Bryant at scbryant@comcast.net 281-852-7371 or Amber Bender amberbender@embarqmail.com 281-361-4730

56 May 15, 2008 at 09:31 PM CDT
Today I’m also going to post regarding some childhood cancer info. Please take a moment to continue reading the story that follows…… That’s AJ, forever my 14 year old son – always smiling, happy, healthy, athletic and a joy to be around. Horribly, AJ left us on January 5th, 2008 after an 8 month long battle with childhood cancer. We are doing this for AJ and the hundreds of other kids we have come to know through this experience. Again – childhood cancer is the #1 killer disease of our children, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. One in 300 children will be diagnosed with cancer before age 20. Each year 3,000 children die, and 35-40,000 are in treatment. It is estimated that only 3% of all cancer research money goes towards childhood cancer. There is a bill being “debated” in Congress right now to fund research specifically for childhood cancer. The bill will provide $30 million per year for childhood cancer research. And, unless your child is 1 of the 300, you probably aren’t even aware of the magnitude of the problem, just like we weren’t. Please log on to http://www.thepetitionsite.com/1/CureChildhoodCancer to read the rest of the story as well as to sign the petition. I just know that given time and money we can find a cure for cancer. You’ve all walked this journey with us and know how truly awful childhood cancer is. If we could save even one life…well you just can’t even put a price tag on that. For I would give anything to have my Addi girl back in my arms. Please take a minute and sign this petition. God bless you all! Missing my baby girl, Amber

57 June 08, 2008 at 03:54 PM CDT
I want to say thanks to everyone involved in our latest Addi’s Faith Foundation event. We raised another $710 dollars to help find a cure! A very special thanks to Chrissy Bryant and Judy Forshee for coming up with the idea and then seeing it through. And to Megan Ferris who donated her time and profits. And to all of the “scrappers” who took time from their busy schedules to support this worthy cause. And to Art Stemmermann and Christ the King Church for being such gracious and generous hosts. Thank you all! I hope you all have a blessed summer. And to those of you with children off of school and home with you ALL THE TIME… when they begin to get on your last nerve and push you to the limit–take a step back and thank God that they are still here with you. Love to you all. Amber

58 June 14, 2008 at 11:00 PM CDT
Hello everyone, this is Tony, I thought it was only fitting that on the eve of Father’s Day, I post a message on the care page, to wish all of the Dads, especially mine, a Happy Father’s Day. I want all of you to cherish the day, and every day that you have with your children. They are a special gift from God that have been given to you for a reason. Tomorrow is a time of joy and sadness for me, as I am caught in the middle of my emotions. One side says to rejoice and enjoy the fact that I have two astounding little boys that I love so much, and the fact that I have a Dad, that I love, and am able to spend Father’s Day with. But the sad, or shall we say “greedy” side wants to be able to say that I can spend the day with Trent, Riley, Amber, Grandma, PaPa, and ADDI. Even though we cannot spend the day with her physically, you can bet that she will be with us spiritually all day long, as she is each and every day for the rest of our lives. I know that many of you have followed us through this journey, and have helped in numerous ways, whether it be by praying, providing meals, helping out financially, or just being there to talk. For all of these actions, we are extremely grateful. However, as I think about what I would like for Father’s Day, aside from having my little girl back, I think of a few things that, yes, once again I am going to have to ask for your support. I ask for everyone that reads this message to think and act upon any ideas or opportunities that you may encounter or come up with, that can help to put an end to cancer, and more specifically, childhood cancers. Over the past few weeks, there has been a lot of publicity about research and how more money and research needs to go toward children’s cancers. Now, I am not asking anyone to write a check, or even to act immediately. For my Father’s Day present, I am simply asking that you make yourself more aware of the research and treatments of childhood cancer. There are many fine groups trying to make noise in the general public to raise awareness. One statement that I read said that there is more money spent in one day on the war, than there is spent in an entire year on research for childhood cancers. So, where am I going with this? If you hear of a restaurant giving part of their proceeds to our cause, GO EAT THERE. Chili’s has been a great supporter of St. Judes. If you see Christmas cards, made by children with terminal illness, BUY SOME. MD Anderson, St. Judes, and Texas Children’s Hospital all have these cards. If you have a few hours a month to go visit children in the hospital, VISIT THEM, and make them laugh. If you hear of a fundraiser or benefit that is even remotely related to childhood cancer, PARTICIPATE IN IT. I just know that the squeeky wheel gets the grease, and if we join our Addi’s Faith Foundation supporters with other people and groups trying to accomplish similar goals, I am confident that someday a family, put in the same situation that we were in, will be able to have a happy ending to their story. Imagine how special of a present that would be. Thank you to everyone, Tony

January 18, 2012
Since the last CarePage entry in “Addi’s Story” is dated June 14, 2008, I thought it was time for a little update. Especially since Addi’s Story has not at all ended! Although her life here on earth came to an end, her spirit is very much alive and well! I see her daily in the beauty that surrounds us. I hear her echoed in the laughter of my other children. And I most definitely feel her in my heart. I’m thrilled that Addi’s Faith Foundation is beginning its 5th year of service! Because of so many wonderful & generous individuals, AFF has accomplished so much in its short little life…just like Addi herself! We are growing bigger and stronger with each passing year and we look for 2012 to be the best year yet.

As for the Bender Family…we’re good. Although we all miss our Addi Girl tremendously, I feel fortunate to say that we are all happy. After Addi died, I wondered how we would survive. There was such an overwhelming sense of sadness that I questioned how we would ever be happy again. I say this particularly for those who find themselves in the same shoes as us. It does get better…forever painful, yet there is still happiness to be found. I’m so proud of my boys, Trent and Riley, who had to deal with so much at such a young age. They have grown in so many ways and do a terrific job helping with the foundation. I’m proud of Tony and I for turning toward each other instead of away. Many marriages don’t survive this. I’m also proud to say that we have another baby girl! Olivia Hope is now 2 years old and she has brought us more joy than she’ll ever know. We’ve clung tightly to God throughout our lives, but especially now. He never left our sides and gave us the peace and strength necessary. So…that’s the latest. Life does go on and God is good!

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God bless!