Scan Results

Monday went well for Alyssa, other than the girl that did her IV had a really hard time and she had to poke her three times and it felt like it took an eternity for her to finish. Her hand has three pretty good bruises on it. At clinic on Tuesday our Doctor gave us her results. Her AFP (tumor marker) came back normal again. Her MRI is showing that the enlarged lymphnodes have not change since last time and they think they may just be large because of scar tissue and they may never go down in size. The size of her uterus is enlarged from last time. The Doctors are not sure why, but they are going to adjust her road map for the time being. Instead of rescanning in another 3 months they will rescan her in six weeks. Her blood draws will be every 3 weeks instead of once a month. Her Doctor wants to watch her a little closer to make sure that the tumor is not coming back.

It's Time Again

On Monday we will be heading up to the Children's Hospital for another round of Scans and Xrays. I think I am more excited this time and less anxious than the last time we went up for her scans. She seems to be doing really great! She is gaining weight, growing hair and getting attitude. She is starting to babble a lot more. I think at times when she doesn't get her way she even tries to let me have it, although it ends up sounding more like a turkey gobbling than her talking (she is quite partial to her "l" sounds right now). I sometimes look at her and wonder when she got so big? She seems like she has gone from my little baby to my almost toddler just over night. I had an opportunity to visit with a woman in my ward that has cancer as well. I don't know a lot about her story as I have been quite involved in my own daughters cancer lately, but I was so impressed when I spoke with her and her husband. She unlike my little one is still fighting for her life. As I listened to her tell me a little about her situation and her future treatments I felt such a peace come from her. Now, I know that sounds weird, but let me explain why I felt that way. She told me that she is nervous for what she has to go through over the months ahead as she begins her treatments again, but I don't know exactly what she is feeling emotionally - physically - and spiritually. Despite the things that I don't know, I still have to say that my heart was touched by her cheerful disposition and positive remarks. I could tell that this woman is one that is facing her challenge head on. She has a wonderful support system and cheering section. She is relying on Jesus Christ to carry her during the times that she cannot physically and emotionally do it herself. Her face and eyes looked peaceful despite her challenges. Talking to her and her husband reminded me a little bit of how my husband and I felt when dealing with our daughters diagnosis and treatment. It is interesting to look at this woman and then to look at others that I have come in contact with that feel life has given them lemons and that they are not able to go on, that their trial isn't fair, that they lose sight of the positive and only sink deeper into despair everyday. Life has challenges for all of us. For some it is illness, for some it is finances, for some it is relationships and for others it is spirituality and the list could go on and on. I am convinced that no matter the degree of difficulty when we take our challenges head on, with a positive attitude (as hard as it may be) putting forth as much effort as we can possibly muster and then turn the rest to the Lord we will be able to turn those challenges into areas of strength. That we will be able to find happiness amidst the struggles. We will prevail. With that said, I was completely touched in the few minutes spent with my neighbor and her husband to the point that I was in tears as I drove away from her house. My testimony of the help our Savior gives to us through our toughest times was renewed and strengthened. I know that this is an amazing family that no matter what is thrown their way, they will be steadfast and strong. They will be able to get through all that happens in the months and years to come.

Everything Is New Again

We finally took our little one out in public with a big group of people (all of whom were family). She has just about hit the three month (post chemotherapy) six month (total) mark. Her bodies immune system is back up to a healthy level and we have been cleared to start taking her out. My parents have been out of the country since her diagnosis and beginning of treatment and they were able to come and visit for a week. We decided it would be a good time to let her get out and see the world again. I wasn't expecting her to react to things the way she did. Everything was new again, it was a first all over again. I suppose she was and still is little so she may not remember everything, but it has been so much fun to watch her. When we went to the restaurant to eat dinner she couldn't keep her eyes off of the lights on the ceiling and the fabric hanging and the paintings on the walls. I would feed her a bit of dinner and then she would point up at the ceiling and watch the fabric hanging under the lights blowing from the heater that was on the ceiling as well then she would point to the walls and so on and so on. She loved it. She kept saying "ooooh, ooooh, ooooh". She also discovered people, watching them and trying to talk to them. We went bowling and I wasn't quite ready to let her roam free at any of these public places, but I put her in the stroller and for an hour and a half she sat in there mesmerized by all of the people walking around her (most of which were family/kids that she hadn't seen for almost 6 months). I did give her things to do in the stroller, but she didn't really need any of it, she was completely excited to just be out! Another discovery she made was her hair. She has been rubbing her hair since the moment it started growing back, but the other morning I was blow drying the hair on both of her sisters when she walked over to me. I turned the blow dryer on her and she ran away and then froze and started grabbing at her head. Then she came back and put her head in front of the blow dryer again and just started giggling the moment the wind blew her hair. She loved it, she kept standing by the blow dryer and then running away giggling only to come back for more. She did it almost the entire time the blow dryer was turned on. It is so fun to watch her rediscover her world. I think I am just about as excited about it all as she is!

Another Blood Draw Down!

We made our way back up to the Children's Hospital for another blood draw. Her ANC is still down. It is actually up a point from last time, but it is normal for it to bob up and down a little. She is still within normal range. My blogs have become quite spread out and I am afraid I have been enjoying the fact that there is not much to report on our little girl. She is running around the house right now pushing her baby doll in her stroller and playing with big brother and big sisters. I can't help but feel so blessed that she is feeling so well. I have even noticed that she is putting on a little bit of weight. She never did loose too much, but she is starting to look more like an 18 month old with dimples in her elbows and chubbier cheeks. I decided to do a little bit of clearance shopping for my kids clothing for next year and ended up coming home with very few clothes for the other kids and tons for my baby to wear right now. I put up all of her cutesy clothing while she was sick and pulled out all of the comfortable jammies, I know when I don't feel good the only thing I want to wear is my comfortable clothes. Since we missed out on the 12-18 month stage of cute clothing all I can say is: I'm ready to go crazy with the darling baby girl clothes and accessories. We are nearing the end of our house arrest and can hardly wait to get back to running to the store when we need to rather than waiting for dad to get home or relying on wonderful friends and neighbors to do our shopping for us, or having to get a baby sitter just to spend time as a family with both mom and dad present. It is going to also be fabulous to get to pick up and leave at moments notice to run to spend time with extended family not leaving one of us home with her. I am not sure how she will respond to it all, but we have been easing her back into it, and I think she will be just fine. So.............Watch out world cause here we come!

It Is Still Painful for Me as a Mother

Our little one is doing great. Her hair is coming in quickly and it is so exciting to see. I thought her bald head was so much fun to kiss, but we really enjoying her soft new hair too. It is really fun to rub with our hands and our faces. Even my son the artist has put down his markers and loves to rub her hair. We used to walk around the house endearingly calling our little one baldy. Her new name is now fuzzy. Her energy level is great, her appetite is great, and her lungs must be doing equally as good because she walks around the house yelling, "Mom, Mom, Mom" all day long. We feel so blessed to have her doing so well. We have her scheduled to have her next blood draw the second week in March and then will rescan and test everything in April. She is such a sweet little girl and we have enjoyed watching her get back to a more normal life style (we will continue to be careful with taking her out a lot until cold and flu season is over, we don't want her to end up with anything just yet!)
I was talking with one of my daughters tumbling coaches the other day. She was apologizing for missing a lesson the week before. She said that she had been up at the hospital with her son. I asked if everything was alright and she told me no. She then began to describe some of the symptoms her son was having and some of the testing he had been through at the children's hospital, and that they still didn't know what was wrong. I sat there listening to her and could only say that I was so sorry and that we would be thinking about her and her son and hoping (praying) for the best. I got back out to my car and was overcome with emotion. I guess it all still hits too close to home for me. I can't help but get emotional as I hear about these sick children. It brings back so many feelings that I have had over the last five months that I don't think I have completely come to grips with. I found a journal that I started writing in shortly after getting our daughters diagnosis and thought I would pick it up only to read the first couple of pages and find myself shutting the book. I physically get sick, my stomach hurts, I get a lump in my throat and I find myself in tears. I find that as long as I focus on the place she is in now I don't end up completely overcome with emotion, but at some point I will need to allow myself to think about it all and process everything that we have gone through. I guess there is a time and a place for everything and right now may just be too soon for me.
My mind keeps coming back to the same thing, "Why do children have to get sick and suffer?" I come back to the same conclusion every time. We are on this earth to learn and to grow. I know that this life isn't always easy. I know that my family and I have learned lessons during this trying time that may have taken us years to learn otherwise. I know that our trials and struggles have touched others that have prayed for our daughter, helped our family and have followed our unfamiliar path with us. I don't believe that I will completely understand why children must suffer as they do while I am in this life, but I have had several experience where my mind has been put at ease concerning this with the help of my Heavenly Father and Jesus Christ through the Holy Ghost. I also know that there will come a time in the next life that I will be able to look at all that my family and I have gone through in this life and will have a full understanding (I am so thankful for that knowledge). I imagine that the pain that is brought to the surface of my mind/body/being when I learn of other children with life threatening illnesses is one that may take years to get over and may never completely go away. But, as painful as these feelings and emotions are they are a reminder of a very difficult, spiritual, emotional and tender time in our lives. A time that I would never change...I feel my family has grown so much... and yet a time that I would never want to do again.

Monthly Blood Draw

We took our little one up to the Children's Hospital for her monthly blood draw. The lab work done was testing her tumor marker, AFP or hormone put off by her tumor. We were pleased to see that her AFP went down again. This is a good sign. If the AFP was increasing then her tumor may be growing again. We are continuing to feel so blessed with her progress! I mentioned a while back that we took her to a photographer to get her pictures taken before her hair started growing back....I have those pictures back and absolutely love them. I thought it would be fun to show some of those darling pictures to everyone. Thanks to Wendy Carter - you did a great job, the pictures are beautiful!

As Requested......

So I had a few people request that I put a few pictures of my little ones head being used for the enjoyment of the other kids. So I hope that you enjoy these and don't think that I never watch my kids. It always surprises me that I can step out of the room for only a couple of minutes to start the laundry, make lunch, etc. and can come back to some pretty crazy things. Kids are so creative and messy!!!!

Notice how my son is hiding in the background of the picture completely elated looking at his beautiful creation!!!!!


It is hard to tell in this photo, but she has deodorant all over her head.


Yes even big sister got in on this one.


It is a good thing she is as mellow as she is, I think I would get upset if someone did that to me.

I wanted to put a few more pictures as well. This is her getting completely excited over cheesecake with raspberry's. We had celebration cheesecake the night before she went in for surgery to remove her Broviac Tube. We have a lot of little celebrations these days - like the day she had her first bath. The whole family joined and took part in her bath, either by helping get pj's, towel, lotion or just plain cheering her on.

We have found new reasons to celebrate, I never thought we could celebrate so many small things. I guess when you go through something like this your perspective changes.....life takes on a whole new meaning.....life is precious.....we want to enjoy every moment!