Addison’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. Jus