Tuesday, December 29, 2009

She is One Year Post Chemotherapy!!

It has officially been one year since our little girl finished her final round of Chemotherapy. She has been quite the little trooper over the last year and a half! The last two weeks consisted of five scheduled trips to the Childrens Hospital which only three she ended up making it to. She had her routine MRI, Chest X-ray, Lab Work and Clinic visit. She also did a Kidney test (GFR) which was one that we have never done before. Her first day at the hospital was for Blood Work, MRI, and chest X-ray. She did really good with all of these during the day, but two hours after getting home her oncologist called and told me that her MRI had not worked properly (she had something in her colon that was creating a brightness on the image that made it impossible to see her uterus, this is most often times seen when excessive amounts of iron are eatten, although we went over her diet and nothing she had really had much iron at all....so we don't really know what caused it, but it was nothing to worry about), so if you have to have an MRI of your abdomen don't eat excessive amounts of iron rich foods or your MRI will not be clear. They had to reschedule her a week later for another MRI. For an MRI on a child they will usually sedate or do general anesthesia so that they will hold still. She is in the MRI machine for 45 min to an hour and she can't move during that time. When the sedation drug that is used on her is in her system they have her sleep for at least two hours before waking her. She then is woken up and given juice and crackers to see how well her body will react to the sedation drug. She is usually a bear when she wakes up and has no control of her body she is really floppy. The nurses have told us sometimes it can take a couple of weeks for the effects of it to leave her system completely (that means angry/tantrum city). Concidering she had to have it twice with in a week of each other she came home the second time more of a bear than usual. It took me back to the beginning of her chemo treatments when they gave her benadryl....."We were hoping that she would get really sleepy but with our luck the benadryl did not make her sleepy, it made her very angry, and irritated and hyper. She was yelling and screaming, throwing things and hitting us. Our little one has always been a very mellow happy baby so to see this was very different than anything we were used to. I described it as: she would do the alligator death roll almost continuously with the screaming, throwing things and hitting us. It was to say at the very least, insane!" (quoted from one of my first posts on this blog). That pretty much sums up what she was like the day I brought her back from her second MRI early this week. I just hope that it doesn't last for the next two weeks. She also went up and had her kidney test done. The local Children's hospital doesn't do a GFR test, but we went to the clinic first had her physical done and met with one of Oncologists then she had two IV's placed one in each hand. Then we had to go to the University Hospital and have the test done. When they do a GFR test they insert a small amount of radioactive chemical into her system through one of the IV's and then wait one hour to draw blood out of the other IV and then wait another two hours and do the same thing at which time they are able to test both blood samples and see how well her Kidney's are filtering. Once we got there they tried drawing blood back from both IV's and after 10 min of trying decided that they were unable to use the IV's to draw back the blood. They insterted the chemical into one of the IV's and then removed that IV and then sent me back to the Children's hospital to have a new IV placed with a bigger line. They said to either come back for them to draw the blood, or to stay and have the children's hospital draw at both times and then take the blood samples back to them immediately following the testing. Once we were back at the Children's hospital we decided to remain there until both samples were drawn (Children's Hospitals are so fabulous they had activities for us to do, treats, drinks and movies to watch.....I don't know what we would have done at the University Hospital in the waiting room for 3 hours...what a nightmare). When it was time to draw the first sample they tried her initial IV but it didn't seem to want to draw back blood, so the IV team removed the IV in her hand and did a draw from her arm (poke number 3 for the day). When it came time for her final draw the guy that gave her the IV poked her in the opposite arm and couldn't get the vain to work for him, so he called another guy to come and try, when he got there he repoked the first arm and was able to only draw back only a small amount and wiggled it around for awhile to see if her could get the vain to draw more, when he decided that the blood in the tube was clotting and wouldn't be able to use that sample he tried again on the other arm (yes, poke number six). This time he spent what felt like three minutes wiggling the needle around afraid he had blown the vain when he finally got it to draw back and got the final sample. Well, as far as my daughters history goes with blood draws, she doesn't complain to much about them they are usually over fairly quickly and she is a real trooper. For the first four pokes she held true to her history, but by poke number 5 and 6, she was freaking out (and so was I for that matter, only no one knew I was freaking out because I was doing all of the yelling at them in my head and not out loud). As I hoped in the car I realized that I had missed several calls while I was in there and decided to call the most recent one back. It was my mom and when she answered the phone and started talking to me I finally lost it on the phone. I think I had been building up some anxiety over all of her testing and it finally manifested itself while I was talking to her in the form of tears. I am really good and keeping my composure when needed and when I can finally break down I do it with a good hard cry and then I seem to feel fine again. Well to make this long story longer, her results came back and her Uterus looks good, her X-ray's came back fine, her AFP labs came back at 2.3 and all of that is great. Her kidney test came back low. Her results for her age should have come back at 100 or higher and she is at 90. Her Oncologist said for now that it is nothing to send her to a kidney specialist yet and that we needed to always keep her well hydrated and we will keep watching her kidneys to make sure nothing more happends with them. I still need to do some research about Kidney's and Kidney testing in Children to fully understand the information that she gave us. As far as her road map she will have her next round of testing in May (6 months from now.....Yeah!) and then again in December at which time they will also include the Kidney test and probably another hearing test. So, again wonderful news and we will continue to be grateful for the many blessings that have been poured out to our family and our sweet little daughter over the past year and a half.

Sunday, October 4, 2009

Still Looking Good

We went to the Hospital for her scans again. Everything still looks "clean" as the Doctors put it. She is still doing really well. We have been so blessed. We came upon our year mark to the day that we found out she had cancer, and look back at the past year and are truly amazed at what we have all been through and the growth we have seen in each of us. We held her a little tighter and gave her a few more kisses and hugs realizing that not everyone diagnosed with cancer is as lucky as she has been.

Tuesday, June 16, 2009

Many Thanks

Our family feels it is appropriate at this time to thank everyone for the many thoughts prayers, acts of kindness and tears shed for our sweet daughter. I suppose at this point we can say that her cancer is not present in her body. She does have some abnormalities at her cancer site and 4 enlarged lymph nodes, but for now they are thinking it is scare tissue. We feel so blessed. Our path continues with consistent blood draws, scans and check ups to make sure that her cancer stays at bay. As I have reflected over the last 9 months my heart is full of emotion. I can honestly say that this has been the most difficult thing I have ever had to go through. I know that in this life we all have our challenges, and even as difficult as this has been I wouldn't trade my trials for anyone else! I truly believe that we are faced with specific trials for specific reasons. In the beginning, before the diagnosis was given to us I was praying and praying that there would be nothing wrong with her. I really thought that I couldn't handle anything major coming into our lives at the time. Now I don't believe that my prayers were completely for not, but I do believe that my Heavenly Father had a bigger plan for my husband and me, our daughter and our family. After this experience I know that I have learned things that I couldn't have learned without an experience similar to this. I am so much stronger than I ever knew. I am more knowledgeable in terms of medical procedures, language and can say that I quickly became a professional at broviac line care and giving shots. My resolve to help others in their times of need has been strengthen. My testimony in my Savior Jesus Christ and in my Heavenly Father has grown tremendously. Even in the darkest hardest times I was lifted up and given strength and comfort that were not from any earthly power, but were from a higher power. My family has been brought closer, I have a renewed compassion for my children and the difficulties associated with growing up, learning and changing. My relationship with my husband has been taken to a new level. I love him so much and through this process have seen a side to him and to me that we never new existed. We have learned better communication with one another, we have learned how to listen to one another and to buoy each other up when we are sinking from the weight of our trials. We learned to turn to our Savior to carry us when we have done all that we can. We have been touched by the love and support of others, even people we barely know and those we don't know at all. We have had a shift in our perspective. Instead of focusing on the daily monotony of tasks to be done, our focus is on an eternal perspective. There are so many things that seem so important now and when we look at the whole picture we realize that what is important is not the things that come and go in this life, but the things that remain with us forever. I have learned to "dance in the rain". When life comes at you you're given a choice, that choice is to moan and complain or to look for the good that is somewhere within all things (even as little as it may be at times). I know that when we are able to focus on the blessings we have, the love that we share, the small steps in progression we can be lifted up even in the toughest of times. I know our unfamiliar path has not come to an end, but it has taken a small turn and as we continue down this path with many unknowns in the future I know one thing for sure....We are not in this alone. Our daughter, our children and my husband and I will always have the comfort of the Spirit with us and the strength and love of our Savior Jesus Christ and our Heavenly Father!

Wednesday, June 3, 2009

Unchanged.....Good News

We were up at the Oncology Clinic on Tuesday. I have been nervous for this appointment for a while now. As I started my day I planned everything out to the minute. I got my babysitter early so I could run my errands and make it up to the clinic just in time. Like always I got off a little late, had to fill the car up with gas and make an unexpected stop. I was amazed with myself when I got to my last stop with plenty of time to spare.........the only thing is that I was 30 minutes off of the time I really needed it to be. I quickly left for the hospital and realized that I had no idea how to get to the hospital from where I was. I called my Sister In-Law for directions only to have to get the same directions from her three times. As I was driving I had a dizzy spell and barely made it down the road (the dizziness only lasted about 30 seconds). I was really out of it all day. I think that I was having some serious anxiety about what we would find out from her scans. Well after my crazy morning I am happy to report that we did make it to our appointment. Dr. Wright, our daughters oncologist met with us and informed us that her scans were unchanged from her scans 6 weeks ago. She said that the thickening of her uterus is probably from scar tissue. Her AFP (tumor marker) is back down to 2.3. So the next step from here is to continue post chemo checks. She will have her next MRI, Chest X-ray, blood work and Audiogram 3 months from now and she will only have one blood draw 6 weeks from now in between scans. This is great news. We are sooooooooo relieved. Thank you again to everyone for your support, love and prayers.

Sunday, May 31, 2009


We went to the Children's Hospital on Friday and had another MRI done. Unfortunately we don't have any results. The hospital usually has two Doctors doing the MRI's and we are able to have one of the Dr. come out and tell us what the results are, but there was only one Dr. working on Friday. Our Oncology Clinic visit isn't until Tuesday of this week, so we won't know anything until we meet with our Oncology Doctor. It is crazy how long a few days can feel when you are waiting to hear what the next couple of months will be like for your daughter!!! Without knowing what is going on inside her little body she looks great. She has a spunky little attitude and a beautiful smile. I love being with her. You would never know that she had had anything wrong with her. Her hair is coming in so thick, it is great. I finally decided to put a little clip and a little gel in her hair. So this is what it turned out like (sorry I am not a photographer and they are not the best pictures):

Sunday, May 3, 2009

It Is Time For Another Blood Draw....... Again

I have been wanting to put this picture on my blog for awhile now and finally it is on. We were given the name of a very talented man that has decided to put on an art exhibit displaying his works of pastel. His theme is children that have either passed away from or are battling with a life threatening illness (he is donating the portraits to the families, WOW). His show will run from the end of December to the Middle of January (I believe). I was completely amazed with his work. We have the portrait hanging in our home until the art exhibit. I love it! Every time I look at it I am reminded of how strong she is, lessons learned, difficulties overcome and the sweet spirit she and her illness has brought to our family. I feel so blessed to have come in contact with such a wonderful human being that has taken his amazing talent and is using it to bless the lives of others. We will be forever grateful to him for allowing us to have such a wonderful keepsake in our home.
This week we we took our little one up to the Children's Hospital again for blood work. We were anxious to see the results of her Tumor Marker. Her count is up from 2.6 to 3.1 but still within normal range. I think that I will be anxious again until the next three weeks pass and we head back up for her scans. I never would have thought that I would actually look forward to her Scans, but I really like knowing what everything looks like with an actual visual picture rather than a number from her blood draws.

Monday, April 20, 2009

New Hair

I thought it would be fun to put on some pictures of her new head of hair. I get asked often how her hair has changed. It is a lot thicker, but when she lost it she had just turned one and it was still baby fine hair. I think the color has changed to a little less strawberry blonde to more of a sandier blonde (neither of the colors were very dark, but just a real subtle change). We haven't noticed any curl yet but it isn't very long so I guess we will still see. I will take some more over the next couple of days and also add them to the blog.

Wednesday, April 15, 2009

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.

Friday, April 10, 2009

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.

Thursday, March 26, 2009

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!

Tuesday, March 17, 2009

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!

Tuesday, March 3, 2009

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.

Friday, February 20, 2009

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!

Monday, February 9, 2009

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!

Tuesday, February 3, 2009

Why We Will Miss Her Little Bald Head

Our little one is starting to grow a tiny little bit of hair on her head. You really can only see the peach fuzz if the light is shining just right on her, but never the less it is starting to grow. I have to admit that during this process there have been many very hard and emotional things we have gone through. One of the hardest was watching her loose her hair to the point that it was everywhere including in her mouth and she would end up choking on it and then deciding it would be best to shave it off. This was extremely emotional for me. Now that we have had our little baldy (as the kids endearingly call her) for almost four months, we are definitely attached to it. She as I have said before is the cutest little bald baby out there. I love to look at her. Her bald head represents what she has gone through, and how tough she really is. So as we start saying good bye to her cute bald head I thought I would make a list of why our family will miss her little bald head.

That her big eyes look even bigger, because they are the first thing that you see instead of her hair.

When she decides to dump her dinner on her head, clean up is quick and easy. We don't even have to put her in the bath tub.

That her head is a blank canvas for my 3 year old the little artist. I can't tell you how many times I stepped out of the room and came back in to see a beautiful drawing on the top of her little bald head.

Actually her brother has put many things on her head including her dads deodorant. he loves to squish it too with his hands, really he is just completely fascinated by it.

A place for the kids to see how much lotion you can put on your skin before it won't soak into your skin and it then creates a white wig for baby sister.

Never having to worry about brushing out hair first thing in the morning (her hair is easier to do than her brothers!)

The ability to see exactly where she bumped her head and how severe the bump is.

A place for soft kisses. We all love to give her little bald head kisses it is so soft and smooth.

The constant reminder of what she has been through and just how tough she really is.

This whole experience has been a time in our families life that has been one of the most difficult, precious, emotional, tender, and faith promoting experience we have been through. We are so grateful to be moving on to the next phase of her journey.

Thursday, January 22, 2009

We Have Been Blessed

We came home last night from surgery and she is doing great. I can't help but feel a bit of relief after having her Broviac Tube removed and seeing her running around and feeling good. I have been in tears off and on since last night. I feel so blessed! We are not in the clear, but we are well on our way.
I have a good friend that lives here in my neighborhood that I have found as such a comfort while my family has been going through this difficult time. She used to work up at the Children's Hospital in the oncology ICS unit. I have been able to get some wonderful tips and ideas from her, Thank You! She gave me the idea of having my daughters pictures taken before her hair starts to grow back. She gave me the name of a very good photographer that is a part of "The Littlest Heroes Project". You should look up their website to see what they do, people are so wonderful: (http://www.littlestheroesproject.org/Littlest_Heroes_Project/Home.html)
I called up the photographer and she graciously squeezed us into her schedule very quickly. So on Monday I headed up to her studio for a photo shoot of my little hero. You can look at a couple of her photos on her blog, the pictures are absolutely darling: (http://www.vizionphotography.blogspot.com) I am compelled to again thank all of our many angels that we have encounter during this journey we have been on. I have felt the spirit so strongly over the last couple of days realizing how much love my Heavenly Father has for me and my family. No matter how difficult life has gotten we have always been blessed with the ability to recognize the spirit giving us strength during this time. We are all sons and daughters of our Heavenly Father and I know that his love for us is constant. No matter what stage of life we are in, no matter what struggles we are going through, no matter what mistakes we have made, no matter the challenges we encounter, his love is always there for us! I wish I could give everyone the opportunity to feel what I am feeling in my heart, and understand what I am understanding right now. But, there is no way for me to do that other than writing it down and having you read it. I pray that you will feel the spirit of love that I am at this time and know how much our Heavenly Father loves each one of us, regardless! I know what I have written is true and I am so grateful for that understanding........ My family and I are so blessed.

Sunday, January 18, 2009

We've Decided....

So.... we along with our Oncologist decided the best thing for our daughter, considering all of the options, would be to just watch her lymph nodes that are enlarged. So here is a brief look into the next couple of years for us. This Wednesday we will be taking her back up to the Children's Hospital for same day surgery to have her Broviac Tube removed. We are so glad that she had this line in place during all of her blood draws and treatments. It has saved her from getting poked several times a week. We are also glad to have it removed because, this means no more bandage changes, cap changes or line flushes (I am very good at it though and would be more than willing to walk anyone through the process if they ever needed to care for a line). It also means that we will be able to resume regular bathing, I think she will be just as excited about that as we will be. She begs to get in the tub whenever one of her siblings is taking a bath. For the next year, we will take her in for blood draws monthly and every three months she will have another MRI and chest X-ray along with an Oncology Exam. The second year she will resume blood draws every three months and MRI and chest X-rays every six months. Following the second year she will continue to have Oncology exam regularly. Everything the Oncologist said after the two year mark gets a little hard to remember, we were just trying remember what the next two years holds! I do remember her saying that once she passes the two year mark they stop worrying so much about the cancer itself, and start focusing on the damage done to her body from the cancer treatment process instead. Let me first say that I am so thankful for the medicine that was used to treat her cancer and its effectiveness on the shrinking of her tumor, however I pray that in the near future they will be able to find a different type of treatment that is just as effective or more effective and will not be as harmful to the patients being treated. Again, thank you everyone for your constant words of comfort and prayers for our family. We will continue to give updates on her progress!

Tuesday, January 13, 2009

Wonderful News

I apologize that it took so long to put an update on our blog. We were waiting for a call back from the Oncologist today to get a few question and miss understandings cleared up before we spread the word. We have wonderful news: We have all been anticipating the past couple of days, waiting to find out what the last three months of chemotherapy has done to the tumor in our babies body. Well the MRI scan has shown that there are no visible signs of the tumor in her uterus. That means that with the MRI they were not able to see any of the tumor itself. It also means that without any further actual testing of her uterus where the tumor was they are unable to tell whether all of the living cancer cells are completely gone or not. At this point it is not in her best interest to test the uterus because of her age and size. The Oncologist told us that she was concerned with two abnormal lymph nodes detected by the MRI. Because of the size and location she is fairly confident that the abnormality in the lymph nodes is caused by cancer cells, but she's not sure whether the tissue inside the lymph nodes is living cancer cells or dead cancer cells. The good news is that her AFP levels (hormone secreted by her cancer) are at a healthy level right now. The Oncologist seems to think that the lymph nodes should have shrunk just like the tumor did, so they are perplexed with the differing results. With lymph nodes the best way to tell whether there is living cancerous tissue inside is by surgically removing it and looking at the tissue under a microscope. The Oncologist feels that this would be an extreme measure at this time. Her Lymph nodes in question are sitting near her back and are underneath a lot of her internal organs, the less they mess with internally the better. Although, at the same time it could be beneficial as it would provide definite results fairly quickly. A second option is have a PET scan which can detect some cancerous lymph nodes. Unfortunately germ cell tumors have not been study enough with a PET scanner to know whether or not the results are accurate with that type of cancer. PET scan also exposes her to more radiation (and we all know the least amount of radiation possible is best). So there are pros and cons to having the scan. Another way to monitor the change in cancerous tumors is by checking the tumor marker or hormone secreted by her type of cancer. When her blood draw is done a test of the AFP level can tell whether the germ cell tumor hormone is decreasing, rising, or staying level. This is a good way to monitor whether her tumor is coming back or not (it would do the same for the two lymph nodes as well). We have a few nights to think about what we would like to do and then we will call the Oncologist and together we will decide what to do with the enlarged lymph nodes. Thankfully we will have time to do a little research of our own and study it out in our minds and then pray for guidance concerning this decision. We can also back up our feelings with the medical knowledge and expertise of our Oncologist. Thank you all for the many thoughts and prayers in her behalf, we feel very blessed and fortunate with the results of the MRI scan and are thankful to be able to move on to the next stage of our daughters cancer treatment. I think we will celebrate this weekend the wonderful progress our daughters cancer has made this far!

Friday, January 9, 2009

We're All Excited!

We are all excited for this next week to come. On Monday we will be heading up to the Children's Hospital for our daughters MRI and CT scan. We made it through the first block of treatments! The tests done on Monday will tell us what the past three months of treatments has done to her tumor. We are very anxious to see how her tumor has responded to the Chemotherapy. On Tuesday we will have an Audiogram done on her ears and then we will head to the Oncology Clinic to have a consultation with her Oncologists. We know that she is in your thoughts and prayers, but an extra prayer or two would be wonderful. The results on Monday and Tuesday will determine what happens next for her. We are hopeful that her tumor has responded well and that we might be able to start a new phase in her treatment.

Tuesday, January 6, 2009

Just A Small Update

Our little one is doing well. She has finally stopped throwing up. It seems that this time post-treatment she threw up more than before. I don't know why, but I wonder if it has something to do with the fact that she started her last round of Chemotherapy with a cold and her system was already run down. She has had her blood drawn three times since we came home. Her levels should be at their low right now, but they are actually pretty good. They're a little low, but not enough to need a blood transfusion. Her ANC is up high enough that we were able to give her her last Neupogen shot last night, HOORAY! She will be glad to be done with her shots, I think she has finally caught on to what happens when we take the syringe and needle out of the package. She starts to wiggle, hold her legs and fuss. Hopefully this won't have lasting effects on her for shots she will need in the future. We have noticed that her appetite is coming back. Not back to normal, but she is eating three small meals a day. This is good since she usually will eat only one good meal a day and pick at her food the other two meals. It also takes her almost two and a half weeks before she actually eats three meals again. Her energy level seems to be back as well. We feel really good about her progress. Our other children keep asking us when their sister is going to be better, since we don't know for sure, we just keep telling them that when her Broviac tube is removed then she will be better. Now every time they say their prayers we hear, "Please bless Alyssa to get her tube out so she can be better." I guess we need to explain it a little different so they don't think that the tube is the thing that is making her sick. Our oldest daughter understands but I am not so sure about the middle two children. Speaking of prayers, we are so thankful for all of the prayers being said for our family. We know that we are being very blessed because of the faith and prayers of all of our friends and family, Thank You!