"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."

She is One Year Post Chemotherapy!!

2009-12-29T20:17:00.000-08:00

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.

Still Looking Good

2009-10-04T07:56:00.000-07:00

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.

Many Thanks

2009-06-16T14:34:00.000-07:00

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!

Unchanged.....Good News

2009-06-03T21:25:00.000-07:00

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.

Update

2009-05-31T08:35:00.000-07:00

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):

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

2009-05-03T12:26:00.000-07:00

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.

New Hair

2009-04-20T11:36:00.000-07:00

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.

Scan Results

2009-04-15T13:30:00.000-07:00

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

2009-04-10T12:49:00.000-07:00

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

2009-03-26T11:16:00.000-07:00

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!

2009-03-17T15:06:00.000-07:00

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

2009-03-03T22:13:00.000-08:00

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

2009-02-20T10:09:00.000-08:00

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......

2009-02-09T15:35:00.000-08:00

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!

Why We Will Miss Her Little Bald Head

2009-02-03T07:32:00.001-08:00

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.

We Have Been Blessed

2009-01-22T09:39:00.000-08:00

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.

We've Decided....

2009-01-18T15:53:00.000-08:00

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!

Wonderful News

2009-01-13T15:56:00.000-08:00

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!

We're All Excited!

2009-01-09T07:32:00.000-08:00

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.

Just A Small Update

2009-01-06T09:00:00.000-08:00

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!

These Kids Know

2008-12-29T12:19:00.000-08:00

I was downloading all of our Christmas pictures from our camera onto our computer and came across some pictures we took of our little girl the last time we were up at the hospital. I know this picture isn't very clear, but it is the only one that I had that didn't show this little boys face. I didn't get permission to put pictures of this little boy on my blog so I didn't want his face to be showing.
We had been sitting in our room when we heard a knock on our door. My husband answered the door and told me to bring our daughter to the door because she had a visitor. When I set her down she saw the little boy standing at the door and went running up to him and they both immediately gave each other a big hug. I just watched thinking they must know that the other is going through the same things. They aren't even old enough to speak to each other and yet they know what the other is going through and can still communicate comfort and love to one another. It was really quite touching to watch. They stayed in the door way for awhile playing catch with one another and then one of the nurses brought us a gymnastics mat for the two of them to run around and play on. The other little boys mother was gone and the nurses were watching him while he received a blood transfusion. They thought he might like to see another little person his size. It made me so grateful for my husband and his work that is so willing to let him be at the hospital with us. I don't know how parents do it when they are the only one with their sick child (at least at our babies age it would be nearly impossible). She demands so much time while we are there, that it is physically, emotionally and mentally draining. It is is so wonderful to have another person there to pass the responsibility back and forth with. Our daughter seems to always be drawn to the other cancer patients. They all have a special bond that exists regardless of cancer type, age, gender or progression of cancer. These are very special children who have the abiblity to comfort one another in way only they can.

Merry Christmas!

2008-12-25T12:42:00.000-08:00

We are home and Christmas Morning has been wonderful. The kids are all enjoying their new presents and having a good time together. On our way home from the hospital yesterday we had a few errands to run (ie. the post office, gas station, few last minute groceries and the pharmacy) So my husband and I took turns running in to the different places while the other stayed in the car with our daughter. I had gone to Costco pharmacy to pick up her Zofran (anti-nausea medicine) on Tuesday while heading back up to the hospital, from a good nights rest at home. The Pharmacist told me that he didn't have it in, but that he would get it in by the next day. So we stopped at Costco (our last stop before getting home) and I ran in to get the prescription. When I got there they told me it didn't come in. I was sick to my stomach all we had left was enough for two more doses not even enough to get us through to Christmas Morning. The Pharmacist told me that he had called around to all the local Costco's and the Jolley Pharmacy's and none of them had it in stock. The supervisor came out to assure me that he would have it in by Friday (the day after Christmas). I told him that that would be too late I had to have it today. They then told me that they had called and left a message on our home phone that morning telling me that they couldn't get it in today. That is great, but I failed to give them my cell phone number and we were staying up at the hospital and didn't get the message. He told me that I would have to go back up the the children's hospital to get the medication. We live about 40 min. from the hospital (sometimes longer with traffic)and the last thing I wanted to do is head all the way back up. I asked if there was any other pharmacy (ie. walgreens) that would have it and he quickly let me know that this was a Children's Oncology drug and it would have to be delivered to any of the pharmacies since it is not used that often. He told me there was one other hospital that we could go to about 20 min away if we wanted him to transfer the prescription. I told him that would be great! We got in the car and I was telling my husband that we had to turn around and go to another hospital to get the Zofran. He reminded me that the Oncologist let us go home early (8 hours early)with the agreement that we would heavily hydrate our daughter with clear liquids at home and we had already been in the car an hour and a half with all of the running around, so we needed to get her back home to start her hydration period. She was a little upset and didn't want to drink anything while we were in the car, I think she wanted to be home. Just as we pulled out of the Costco parking lot she started throwing up. It got everywhere including down her shirt and all over her dressing (bandage covering her central line). When it gets really wet you have to change it to prevent infection entering her body through her line. My husband pulled over and got out of the car and I jumped from the front seat to the back all in about five seconds and we started clean up mode. I yelled at my husband to get back in the car and get us home (yes, these trips to the hospital take all of our energy out of us, even the energy that makes us nice!?!) I tried to clean her up the best I could with wipe ups and get the chemo throw up off of her, and her soiled clothing in a bag. Once we got home dad bathed her and I headed back up to the other hospital to get her prescription and then down south about 45 min. to pick up our other kids just in time to turn around and head home so that we could have a little bit of Christmas Eve together before bedtime. Once I got to the hospital I walked up to the main entrance doors (automatic doors) only to nearly run right into the glass. Apparently the doors had been having trouble opening. Luckily about one minute after getting to the doors (and trying to jump and wave around the door to make the sensor detect me) a man walked up and said "Oh, are the doors not working again? Let me get my badge and I will let you in." I finally made it to the pharmacy counter (sorry this story is getting pretty long, I have never been good at telling the short version of a story, just ask my parents!!!). When the guy checked me out I got slightly teary eyed. Silly, I know, but I have never been so excited to receive a prescription before in my life. There is nothing worse than watching your child throw up time after time after time. Zofran is my #1 favorite medicine ever! I think that the build up of tiredness, stress, etc. over the past four days of being up at the hospital did me in. I almost started crying to my Brother In-law on the phone when I let him know I would be on my way to pick up my other kids. I was so grateful to finally pull into my own garage and walk into my house knowing that all that was left was fun and relaxation for the next couple of days! What a wonderful Christmas this is!

We'll be home for Christmas

2008-12-24T09:20:00.000-08:00

Last night we finished our fourth and possibly her last round of chemotherapy (tests mid January will let us know for sure). Hurray!!!! Usually it is annoying to hear the alarms of her IV drip pump go off but this time when the alarm sounded indicating the cisplatin infusion was complete we jumped for joy, let out a couple a screams, took pictures, and breathed a sigh of relief.

The Dr. came in this morning, reviewed the charts, checked her out and indicated that things are looking good. We just have to wait for her fluid levels to come up some and then we get to go home. She is doing well, a little nauseated and aggitated, but over all good.

Our little one had a special visitor this time. PCMC is so good to have fun things for these kids while staying at the hospital. The therapy dog came all dressed for Christmas. She loved having him in the room. She also had Santa visit, only she fell asleep and wasn't awake to actually see him.

It Is What It Is

2008-12-21T11:23:00.000-08:00

We made it to the hospital. Our little girl didn't end up having a fever with her cold, so they let us in a few days early so that we should be home for Christmas.... YEA!!!! This is our Fourth Chemo round and our last one in this group of treatments. Mid January we will come back up to do her rescanning and see how her tumor has responded to her chemotherapy. We will then have a new plan for the next couple of months (hopefully her new treatment will include regular check-ups and lab work and not more chemotherapy.....but we will see). We will have to post again to let you know how she responds to her chemo drugs this time.
So, my sister-in law called me the other day to see how we were all doing. After I was done telling her that we were doing fine she said "How come you have to be so tough all of the time?". This is for all of you that aren't with us at night after our children have gone to bed, or at church, or when we are alone driving in the car. We have our breakdowns just like everyone does when going through something like this. This has been by far the hardest thing I have ever had to go through in my life time. I have found the best way for me to deal with the stresses and pressures put on me during this time is to focus on the positive things happening during this trial. It seems when I focus on the difficulties of cancer being apart of our lives that I am brought down to a low that is very difficult for me to come out of on my own. So for me to deal with this situation I have found that if I think and dwell on the positives then I truly feel good with the way things are turning out and progressing with her cancer and its effects on our whole family. I have said this before, that her tumor/cancer "is what it is" and no matter how much I cry (and I do occasionally) and no matter how much I wish this wasn't happening and no matter how much I want it all to just go away, nothing is going to change where we are right now. I have a daughter with a cancerous tumor. I have three other children that are at home suffering in their own way with the changes that have been brought into their lives. I have a wonderful marriage with a husband that struggles occasionally with what we are facing, just like I do. What keeps us going and doing the things we need to is the acceptance of our circumstances, our faith in our Heavenly Father's watchful and caring hand, and our positive outlook on all that is given to us. We are so grateful to everyone that has been supporting us through this unfamiliar path we are on. THANK YOU SO MUCH!

Cross Your Fingers

2008-12-19T11:53:00.000-08:00

We took our daughter up to the Children's Hospital today for her audiology testing and blood work. Her hearing came back within the normal range. Her really high pitch and really low pitch is down from last time it is on the border for the lowest of normal ranges, but those pitches are ones that we don't usually hear anyway so not a big deal. The audiologist was very impressed with her. She couldn't believe how well she did with her testing for how old she is, our little girl was very patient and only pulled the ear bud out twice! Way to go baby! Her blood work came back and her counts look really good (good enough to head in for her 4th chemo round this Sunday). So, we are planning to go in Sunday morning (unless her cold she has turned into a secondary infection before then and she fevers). So everyone.....cross your fingers or say a prayer. Her cold is still lingering and doesn't seem to be getting better, but she isn't fevering, which is great. It looks like we will be home for Christmas, Hooray!!! While we were in clinic waiting, the nurse brought us in a Christmas stocking full of small toys and goodies for her. The stockings were donated by one of the construction crews working on the hospital. People never cease to amaze me with their generosity. Our daughter was excited to play with the little baby doll that was in the stocking. The nurses had all those that received a stocking sign a thank you card to give back to the construction crew and as a I was thinking about what to write on the card I read some of the other comments. The kids that wrote their own thank yous touched my heart. They go through such difficult stuff while at the hospital and it is nice for them to have generous people bring a smile to their faces. There are so many good people in the world. I hope that in the future I will be able to return the favor to many others that go through similar trials/sickness in their lives.

Tis the Season

2008-12-16T09:52:00.000-08:00

Our baby has come down with a cold! It is just that right now and hasn't turned into a secondary infection.....yet. Her dad and I both said last night that we didn't have a good feeling about this cold. Hopefully that is just us worrying and that it is not a hunch. She hasn't fevered yet, but she did sound worse last night (stuffier) I have never watched a cold so closely before. I worry about every sneeze, cough, sniffle, etc. Her appetite is down even from her after chemotherapy normal, but she seems to be alright in spite of these symptoms. She is one tough cookie. We will have to keep watching for any other signs that her cold has turned into something else. We hope she will follow her past trend and dodge another bullet. We will keep you posted if anything else develops.

Another Visit to the Hospital

2008-12-12T16:46:00.000-08:00

We spent the day up at the hospital. When our daughters blood counts came back yesterday her hematicrit was down to 20 which means she needed to get a blood transfusion. Today we took her to have her transfusion. She did just fine with the blood she recieved and she should have more energy and feel better tomorrow (actually she looked quite good shortly after she was done with the transfusion). She has had two transfusions prior to this one. Both of the others were done while we were in the hospital for her treatments. It is nice to have it done when we are already up at the hospital, instead of coming back up a separate time. She was also visited by Kyle Korvor from the Utah Jazz and he signed a little Jazz basketball for her (I think her brother will like the basketball better than her though). I think it would have been more exciting for her if she was older. She just couldn't figure out why all of those people were staring at her. She didn't even want to touch the basketball until long after they left. Oh, well it was a nice thought (and good PR for the Jazz). I was surprised to see how long it took to have her transfusion done today. I think part of the reason it took so long, was that her baroviac line is not wanting to draw back blood again. The nurse tried to draw back blood for twenty minutes (which really wasn't that long considering our home healthcare nurse and I tried for one hour yesterday. Everyone that tries to flush the line (push fluids through it) says that her line flushes beautifully, and then when they try to draw back they can't figure out what is wrong with it. The nurse TPAed her line which is putting a declotting agent in her line, then it sat in her line for 1 hour and 45 min. Then she tried to draw back a clot, but nothing came back (There was No Clot). Her Oncologists decided it isn't worth trying to replace it right now. So we will fight with her broviac for a little longer. If it continues to have problems drawing back they will start doing blood draws with a needle. I hope the line decides to work for us again.We are so grateful for all of the many people who are able and willing to give blood for those who need it.

Miracles

2008-12-10T21:27:00.000-08:00

We have been thinking for awhile about all of the many little miracles we have seen during the last couple of months. We didn't want to type about this until we had received some concrete news about our daughters tumor, but we have decided that whatever the out come of this cancer diagnosis we can't discount all of the small miracles we have seen throughout this process this far. We wouldn't want to forget these wonderful miracles and the best way to remember them is by writing it down. The tumor was caught before it had spread to other areas. The outpouring of support, compassion and encouragement we have received from family, friends, associates, neighbors and those we have never met. Our daughter has not had any fevers while in between treatments. She has dodged sickness that other family members have had (it is so hard to not spread sickness in a house full of kids). She has seemed to feel quite well during the weeks in between treatments. She hasn't had mouth sores. Her hearing is still normal. She hasn't lost much weight. She hasn't had any urgent visits to the children's hospital. Our nurse came in at the right time when she was having an allergic reaction to the etoposide. I say all of these things with the knowledge that we are not in the clear and anything can happen. We are so grateful for all of these little miracles that our family and our little girl has received. We know that she is being blessed because of the faith and prayers of everyone that hears about her. We have heard from friends and family that have run into people they don't know or only know a little that know about our little girl and her cancer. They will say, " I know about that little girl, I have heard her story, we are praying for her and her family". We are so grateful to everyone that is concerned for her, thinks about her and hopes for her full recovery, and those who pray for her. We know that she is being watched over and helped during this trying time in her life. We can't thank you all enough!!!!

We Made It

2008-12-04T21:37:00.000-08:00

We made it through treatment number three. We are so happy to be home with our whole family again. She did really pretty good with the rest of her treatments. The new Chemo Med Etopophos seemed to agree with her system and she didn't react negatively (other than those that are common - low blood pressure, nausea). She was so cute at the hospital. She wins the hearts of every nurse, doctor, tech, house keeping, everyone that meets her. We decided to get her out of her room today before we went home, so we put on her darling little hat matching bracelet and little slippers and left the room. As we were walking she kept saying hi and waving to everyone that she saw in the ICS unit. She thought she was just the cutest little thing and it was hard to disagree with her. Everyone in the halls new she was coming because they could hear the other staffers gooing over her. We could hear the nurses saying "oh, Alyssa must be coming down the hall". She really is darling. This picture is a recreation, but you get the idea. She is very smart too. One of the nurses was changing the tubing for her IV line and the end cap on her Boroviac tube was exposed. She took one of the empty saline syringes and tried to attach it to the cap on her line. It shouldn't surprise me, that she knows what is going on. This is her life right now, she sees it all of the time. I guess I just didn't realize that she was paying such close attention. Another thing she did while we were at the hospital was that she got a hold of her throw up bowl and put it up to her mouth and started making throwing up noises into it (smart, but pretty sad that she knows what the pink kidney bean shaped bowl is for). All in all, she really seems to be doing quite well with her treatments (other than our few set backs). We found out that we may be up at the Children's hospital over Christmas if she has any set backs or if her blood counts are not up, so we are praying that she does remarkable over the next couple of weeks so that we don't have to spend Christmas at the hospital!

A Little Scare

2008-12-02T09:51:00.000-08:00

Our babies counts were up, and we made it to the hospital on Monday. We found out that our daughter is allergic to one of the chemo drugs that they have been giving her. The Doctor said that it isn't uncommon for people to build up an allergy over time. We noticed that when she has been given Etoposide (VP-16) that she gets really itchy. Her tongue starts to bother her and her eyes and face itch. Last time they noticed an increase in her heart rate as well. This time, after about 15minutes of having Etoposide she started rubbing her eyes and rolling her tongue like she usually does, but then she started to throw up. The lights were dim, and I was in clean up mode and my husband had throw up on him, so he was holding our baby with a blue chuck (to protect him from getting more throw up on him). I got her cleaned up the Tech came in and said I am going to get the nurse to tell her she is throwing up. Apparently it is not very common to throw up so soon after starting chemo (it usually happens a little later on). While she was out getting the nurse our baby began to get sleepy and she fell asleep. When the nurse came in she touched our daughter and said get her up on the table we have to get oxygen in her right now. My husband took her over to her bed and we realized that she was white and that her mouth was blue. The nurse got some oxygen on her and immediately turn off and disconnected the drip line full of etopiside. The tech went and brought in the nurse practicioner and the charge nurse for the night. Once everyone was in the room and the bright lights were on she started crying pretty hard and got some good oxygen in her system. She began to be more responsive and she started to pink up. She didn't need to be revived, she started breathing again on her own once we moved her over to her bed. What my husband and I didn't recognize in the dim lights of our room, was that she was not falling asleep, but that she had stopped breathing. The nurse wondered if we hadn't noticed the temperature of her skin was cold and that she was unresponsive and limp. In our defense: It is not uncommon to have her fall asleep when they give her the etoposide, The room was dim and she had a pacifier in her mouth, there was also a plastic protective cover between her and her dad. The nurses put the fear in you about getting cleaned up if you get the chemo on you (one nurse said they treat it like a hazardous waste spill), so when her diaper leaks or she throws up they make us clean her off a 2-3 times and anything she is wearing needs to be changed. We have to do the same if it gets on us, so we were focused on getting her, the room and us cleaned up. When we thought she was falling asleep it didn't seem to out of the ordinary. Now, we know what to look for if this happens again, and we will be watching more closely. All of this happened quite quickly within a total of 5 min or less. She is doing fine. Her rounds of Bleomycin and Cisplatin chemo went just fine last night. The Oncologist decided to give her a different drug called Etopophos instead. This drug does the same thing in her therapy that the etoposide does, but less people have a reaction to it. They will give it to her over several hours rather than the usual 1-1/2 hours and we will all watch her very closely to make sure that she doesn't have an allergic reaction to it. Again, thank you to everyone that keeps her in your thoughts and prayers.

Minor Set Back

2008-11-29T08:12:00.000-08:00

We had our first minor set back. We were scheduled to go into the hospital on Friday, but our daughters blood counts came back too low. We are going to have home health come out and draw her blood again on Sunday and then on Monday morning the children's hospital will call us to let us know whether we will be admitted on Monday or not. It takes a bit of mental preparation to gear up to go in for the chemotherapy treatments, and I have to say that I was ready to go. Oh well, I guess we will have to gear ourselves up again for Monday. Our baby acts just fine, and our Care Manager at the hospital with the oncology department wasn't sure why her ANC count was low. When you go in for chemotherapy all of your blood counts take a dive from healthy levels, then they come back up, but they don't usually bob up and down. When her different counts are low you notice different signs such as easy bruising, weakness, pale skin, etc., but she acts and looks just fine. Her ANC or absolute neutrophil count is what is down. That is the part of your blood that helps to fight off infection. We usually give her neupogen shots daily to help boost her ANC, but this time shortly after starting her on neupogen shots her counts went, up so our Oncology Doctor decided to take her off of the neupogen. It is common after coming off of the neupogen to have your ANC drop a little bit before it bounces back to normal. We had been off of the neupogen for about a week and a half and her blood counts had been rising and then all of the sudden the ANC dropped again. Her Platelets were above the healthy normal range. WEIRD (well at least to me, I guess maybe this happens and it isn't as weird as I think it is, but I wonder what causes this?) I did call up to the oncology clinic to find out why this would happen, but they said we don't know why her blood count has changed. So I guess I will have to talk to the Doctor on Monday while we are inpatient at the hospital. We will be crossing our fingers that we will be admitted on Monday. We are definitely ready to mark off our third treatment and look forward to finishing our fourth so that we can finally do our scans again and see what is happening with her tumor.

Things To Be Grateful For...

2008-11-23T16:08:00.000-08:00

I have been thinking a lot lately about the many things that my family has to be grateful for. I've decided to list a few of them, in no particular order. I am doing this partly because of the upcoming Thanksgiving Holiday, and partly because of the talks shared during Sacrament Meeting today. It is so important that we recognize all of the blessing that we have in our lives. I believe that positive thinking is powerful and if we dwell on the positives that we can be given renewed strength during our trials. So here we go:

1. We found our babies cancer at the time that we did, and that it had not spread.

2. We have a smart Family Doctor who was prompted to send us up to the Children's Hospital for further testing right away, rather than waiting to see what would happen with her bleeding.

3. Her type of cancer is quite treatable.

4. Insurance, where would we be without our insurance??? I am so glad that my husbands work has such a good insurance policy.

5. My husbands work (they have been so great and so supportive!!!!!) THANK YOU

6. Anti nausea medicine, I am so glad that there is modern medicine to help ease our pain and discomfort (our daughters to be specific).

7. Family support, both our immediate and extended families have been willing to drop almost anything to help us out when we need it. It is wonderful to know that we have such a great support system of people who love us and care about us.

8. Freezer meals, my family has appreciated all of the freezer meals that have been brought in to us. It is so nice to be able to pull an already prepared meal out of the freezer on those days that it has been to difficult to get a meal prepared. It is also wonderful to have meals for people to pull out of our freezer on the days that we have Doctor appointments or hospital stays (planned and unexpected).

9. Great friends and neighbors, our hearts have been touched by the out pouring of love that we have felt from our wonderful neighbors and friends (both old and new).

10. Hats, I love them! I can't get enough of them our little girl looks darling in them, and ....they keep her cute bald head warm.

11. Helpful Doctors and Nurses. The staff at the children's hospital have been wonderful to work with (most of them). We are so grateful for their knowledge in the medical field.

12. Home Health Care (what a blessing). Our nurse has been great, I have even found myself chatting with her on occasion about some of my concerns with my baby (not necessarily medical related), so I am thankful for her.

13. Medical Technology (scans, tubes, medicine etc.)Yes even Chemotherapy!

14. Prayer, we know that she is being prayed for all over the US and also in other countries in the world. She is a very lucky girl to have so many people concerned for her well being.

15. Our knowledge of our Heavenly Fathers love for us always, and under every circumstance we find ourselves in.

16. Pacifiers, our baby never wanted a pacifier the first year of her life. From the day her testing began she has decided that she loved pacifiers. I brought it more for a toy than anything, but I have appreciated her taking it during some of her restless/irritable times.

17. Pictures there is nothing in the world that can capture a moment in time better than a photograph. Not even our memory can hang on to an image and keep it like a photograph can. It seems as though each picture captures a time, a place, a thought, a feeling and occasionally even a smell that brings back to our conscious mind a memory from our past.

18. The internet/Skype, it enables us to keep in contact with our family that lives out of the country and they are able to see our children at that moment, live through our computer.

19. Broviac Tubes, I would be a wreck having to watch her get poked every time they had to draw labs or give medication. Her (almost) daily shots in her thigh are enough for me.

20. My house, there is nothing better than having our family together in our home.

21. Not having to stay at the hospital for longer than four days at a time. I am so grateful to be able to bring my daughter home after her treatment sessions. As grateful as we are to have the constant watch and care for our daughter that we do in the hospital, we would much rather be in our own home, living in our (somewhat) normal circumstances.

22. My other children and their love and support they show for their baby sister. I am so proud of how well each one of them has dealt with this new change in their lives.

23. That our bed is big enough to accommodate our baby and her new dislike for sleeping in her own crib (well really her dislike for sleeping at all)

24. People that donate blood

25. Cancer survivors, and their stories

26. That our baby is only one and won't remember a lot of what is happening to her.

27. That our baby is only one and her body is so resilient, I can't believe how well her body can bounce back from all that is happening to it right now.

28. That she dodged a bullet this last week (our son got strep throat and she drank from the same cup as him and ate off of a treat that he had eaten off and then left on the ground all during the time he was fevering and before we know what he had).

29. My relationship with my husband and the strength this trial has given to us. I loved him before, but I have watch our love and respect for one another grow during the last couple of months. I am so grateful for the strength his is to our family. He is a wonderful Husband and Father!!!
30. That my baby is alive and relatively well, despite any lasting side effects of chemotherapy and possible surgeries.

This list could go on, but I will spare my hands from getting to tired of typing and leave my list at that for now. In spite of the hardships associated with having cancer be apart of our lives, we really are very blessed. We thank our Father in Heaven for giving us the ability to see the many blessing that are being poured out to our whole family during this time.

Anticancer: A New Way of Life

2008-11-17T19:18:00.000-08:00

A friend of mine told me about this book, and let me borrow a copy, it is called "Anticancer: A new Way of Life." by Dr. David Servan-Schreiber. I wasn't sure what I would think about this book, but decided to open it up and read it anyway. I haven't finished it yet, and normally I don't recommend books without finishing reading them, but I think this is one of those books that everyone should read. The Dr. that wrote the book was diagnosed with a brain tumor and through his experience and research he tells of the life style changes he made to help with his cancer. One thing that I like about this book is that he never tells you that you should avoid modern medicine, instead he encourages following the Doctors medical advice, but also improving your odds by having a lifestyle change. What he recommends are common sense changes really. For example: Exercise 30 min six days a week, Expose yourself to sunlight 20 minutes each day (vitamin D), Practice a method of relaxation (manage your stress/anger/depression), Acceptance of yourself/resolve past issues, Share your emotions with others (don't deal with everything alone/have a good support system), Enjoy life (laugh), Eat a healthy balanced diet (we all know what this means), Live in a clean environment (no smoke or other harmful pollutants). His first few sentences in his book say," Cancer lies dormant in all of us. Like all living organisms, our bodies are making defective cells all the time. That's how tumors are born. but our bodies are also equipped with a number of mechanisms that detect and keep such cells in check." He says that some peoples immune fighting systems don't work as well as others and that is where he begins to talk about other things we can do to improve our odds when fighting these defective cells. As I have been reading this book I have decided that why not try to do everything within my power to help our baby get better, and to keep her healthy (along with the rest of my family). He backs up his findings with different research studies that have been done all over the world. He also talks about his personal experiences in dealing with the prognosis of a serious illness and dealing with all aspects of it. This part is probably more interesting to those people who have gone or who are going through this type of experience. The idea of a new way of life, a healthier way of life is something that everyone can benefit from.

Life Is Good

2008-11-14T13:50:00.000-08:00

Our baby is doing good. I was expecting this first week being home from the hospital to be the same as last time. Someone needed to be right with her or she would tip right over, she was also out of it and more fussy than normal. This time was much better. She has hardly been groggy at all. I think that she had a lot less medication in her this time when we brought her home. She seems to be doing really well. Her blood counts are all up and looking great, in fact her ANC (absolute neutrophil count- which helps to fight off infection) are high enough that for now we can stop giving her the neupogen shots that we usually give her every night, YEA!!! Her levels will probably drop over the next week though and we may need to give them to her again before her next treatment, but that is okay. Her Broviac Line is still causing some problems when we try to draw back blood, but our home health care nurse is getting pretty good at figuring out what to do to get it to work. We have found that it works much quicker if we have her laying down either on her back or stomach, but even with that it is no guarantee that it will draw blood right away. It is always interesting especially those mornings when she comes and I haven't had the chance to brush my teeth yet and I end up needing to sing over and over again, "Itsy Bitsy Spider" with actions all while holding my daughters arms and being only about a foot away from the nurses face. Maybe on those days I should get up a few minutes earlier to brush my teeth, so that the home health care nurse doesn't pass out on me! My little girl is quite the trooper, I wonder if her body will just continue to get more adjusted to its new normal and the changes in her will have less effect on her. She is still struggling with finding foods that taste good to her, but when we find something we let her eat it until she is full. We also just follow her around with a sippy cup offering her drinks throughout the day, our hope is that she will get enough to drink this way. She loves spending time with her brother and sisters and they can always make her smile and laugh. Sometimes I listen to her playing with her siblings and forget that she has cancer, and has just undergone chemotherapy... until I look over and see her darling little bald head, then I remember! I guess my point is, she is doing much better than I had expected coming home this time, WHAT A BLESSING. I will keep everyone updated with her blood counts over the next few weeks, and if things continue to go as well as they are we won't need to go the hospital until her next round of treatment, which will happen after Thanksgiving.

We Get To Come Home

2008-11-09T13:34:00.000-08:00

So we finally get to come home. She did fairly well considering all that happens at the hospital. Her hematicrit had been dropping since starting the chemo on Thursday (and will continue to drop for a couple of weeks), so they gave her a blood transfusion again before going home. That way we won't have to turn right around and come back up when her hematicrit gets too low. She only threw up 4 times this go around. That was quite the improvement over last times every 15 minutes for three hours straight. She seemed to be in a better mood this time as well. She obviously wasn't her normal self, but she only threw a few hitting, pinching, and biting fits this time. She also was able to have a little bit of fun in between her chemo treatments. She found that she really enjoys playing in her crib and throwing her toys out over the top of the railing. Normally this would not be a very fun game for Mom and Dad, but in this situation anything that entertains her and makes her happy is worth it! A neighbor in our ward brought us some little slippers for our baby. What a great idea. We were able to let her walk around with us holding her hands throughout the ICS unit. She loved being able to walk on the ground. She was groggy from some of the medication she was on, but as long as we held her hands she did great. I am sure every time we come we will discover new ways to make life at the hospital a little easier. Yesterday my husband brought our three other children up to the hospital. We gave them a tour of our daughters room, the ICS until, the fourth floor of the hospital (where we go for monitoring and some testing in between chemo treatments) and we even found the outpatient surgery floor where our son was earlier this year during a lymph node removal (which thankfully came back negative for cancer). Then we headed down to the cafeteria where they each picked out their lunch and we brought it back up to sisters room and ate lunch and watched a movie with her. The kids enjoyed coming to visit their baby and getting to see what sister does here at the hospital. I think they weren't as impressed as they thought they would be, but they did enjoy lunch and a movie together! I was able to sleep at home last night while dad stayed at the hospital. There is nothing like your own bed! I told my other kids that they had to come into my bed first thing in the morning to snuggle with me, they were so excited (I am always telling them to go back to their own beds when they come into our room). I was in heaven snuggling with my kids in my own home. My Mother-In-Laws sister came to stay in our home with our big kids while we were in the hospital. I just keep thinking how wonderful her sisters all are (they remind me of my sisters) They are willing to jump in to fill in where she can't (she is out of the country for the next 14 months). My mother in law is very lucky to have such a wonderful relationship with her sisters. Like I said before, they remind me a lot of my sisters and I feel so blessed to have the ones that I have. I came back to the hospital after helping get my kids ready for church. I made it back just in time to attend the LDS meeting that they hold here in the hospital every Sunday. They only do a Sacrament meeting, which consists of; an opening song, prayer, song, Sacrament, one talk and a closing prayer. I came in about 5 min. late, and sat down and immediately I started to look around. I saw several little kids with their parents, some attached to monitors, some with tubes coming from their noses, others with pic lines or central lines, and I couldn't help myself. . . the tears just came. I tried to fight back the tears, but I couldn't. I wasn't crying about my baby in particular, but about all of these little sick children here in the hospital. I had a hard time trying to make sense of all of it. Why does our Father in Heaven allow little children to get so sick, and sometimes allows them to pass on way before they have had the opportunity to experience life. Now let me say, that I know that our Father in Heaven has a plan for all of us, and no two people have the same path in this life. I know that we all have to go through trials and struggles of all kinds while we are here on this earth. I also know that the only way to truly learn something is through experiencing it ourselves. We must be perfected in order to live Eternally with our Father in Heaven and without opposition we wouldn't be able to grow and become more like Him. That doesn't mean that we will all have the exact same struggles, there is more than one experience we can go through and still learn the same lesson. With that said, then I might ask again, why does our Father in Heaven allow bad things to happen to little children? I know that I have just answered this question, but I still am conflicted about it. I do know that there is a reason and I don't doubt anything that my Heavenly Father does, but I don't always understand it, which is why I must find out for myself through scripture study, fasting and ultimately getting down on my knees and praying for comfort and peace concerning this. What I can say is that I have felt that our family including our baby agreed to go through this trial before we came to earth (to what extent, I don't know) but, I know that we are being refined because of this experience. I know that I will at one point in my life be able to look back and say, "I understand. Look at what we learned from that experience. Look how our family grew because of that struggle." I don't know when that day will come, I don't know if it will be in this life, but I know I will be a better more humble person because of this experience.

We Are Back Again

2008-11-06T16:31:00.000-08:00

We are back at the children's hospital for our daughters second round of chemotherapy. Once we checked in and got our new room for the next four days we started settling in. We set our daughter in the crib to let her run around for a minute while we put our things up, she was all smiles. The nurses and her Dr. all came in to check on us and she kept playing peek-a-boo with them and giggling. Yes, this is yet another blessing of finding out about her cancer when she was so little. I really don't think she remembers what happened to her the last time she was hear (too bad... I do remember). I put off packing and getting ready to come until right before we had to leave. Whenever I have to do something I really don't want to I dread it, and think about it, and put it off until I have no other choice but to get it done. I suppose that I would save myself some agony by getting in and getting it done early so that I don't have to keep thinking about it. Her first day of chemo actually didn't start until 10:00pm so we did it throughout the night. I almost think this may be a good thing. She slept through most of it. Mom and Dad didn't sleep much though. Her heart rate got up pretty high and her blood pressure was low, so they monitored her closely for awhile. By morning everything was back to normal. Today she has only thrown up once and so we are hoping that this will be the end of her throwing up! She started day two the same as last time, she isn't quite as irritated, but she is so tired she doesn't know what to do with herself. She is having a hard time eating anything, she tries it, puts it in her mouth and then she spits it right back out. She will drink a few swallow of water here and there, but not much of anything else. It is a good thing she is on the IV treatments. She started with a fever early this morning about 4:00am and she keeps getting gradually hotter. Now that her labs are done they will be giving her Tylenol to try to get her fever down. The Bleomycin they give her can cause her to fever, but they are going to check to make sure she isn't coming down with anything. We are grateful to know what to expect this time, it is much easier to handle some of the tougher things knowing that we have done it before. We are still trying to figure out what works best for her, but we are eliminating a lot of things that don't work for her, so it can only get better from her on out, right?!?! Thank you for your continued thoughts and prayers, we definitely can tell that we are being blessed from them.

Hawaii Bound, Or Not.......

2008-11-03T07:42:00.000-08:00

My husband and I were supposed to be in Hawaii right now, laying on the beach and eating fresh pineapple. We have been planning a trip to Kauai for our 10th anniversary, the plane tickets were bought, the hotel reservations were booked and we even had our itinerary planned. I guess nothing is ever for sure. We are both a little bummed, but luckily we were able to get a flight voucher for the amount of our tickets to use anytime within the next year. As far as the rest of the plans my husbands two brothers and their wives were going too and yes, they are there right now. They promised to have a great time, eat some fresh pineapple, and get some good old sunshine while relaxing on the beach for us. My husband taught me a great lesson during the first few years of our marriage. We used to live about three and a half hours south of where we grew up (and where our families still lived), so we would travel back and forth often. The road in between was often times bogged down with traffic and since it was out in the middle of no where there was no other way to get home unless we stayed on the freeway. I used to get extremely irritated with getting stuck on the freeway with no possibility to get off for miles and no other roads to take to get around. My husband would ask me, why are you so upset? Is there anything you can do about the traffic? Can you change the situation in anyway? Of course my answer was no, so he would then say, don't get so worked up about it, it will only make you more miserable, just make the best of the situation. It took me some practice, but I finally figured out ways to pass the time that we were stuck on the freeway. It made the situation more bearable. Now, we could be pretty upset about missing out on our trip, but instead this is what we have decided to do to make the best of this situation: my husband bought everything he needed to make us special tropical smoothies (including a slice of fresh pineapple hanging of the top of the cup), this week we are having pulled pork for dinner and we are trying to talk our kids into performing the "hooki lau" (Hawaiian song and dance) for us after we eat, and I think we might even pull out the tanning lotion just so we can fake the suntan at the beach. We would rather be in Hawaii than at the hospital doing our next round of chemo, but....... We will make the best of it. We promised each other that once we are through all of this with our baby and her treatments we are going to take our trip to Hawaii.

The Cutest Little Bald Baby Ever

2008-10-31T12:21:00.000-07:00

Some of you that have had the chance to talk with me over the last 4 days have heard me fretting over the fact that every time I would touch my babies hair I would end up with a handful of it hanging from my fingers. I have worried about her loosing her hair from day one of finding out that she would be undergoing chemotherapy. I decided that whenever I think of a cancer patients I think of their bald head. Loosing your hair solidifies that you are sick. She has seemed so okay lately and I wasn't ready for her to look sick yet. Well ,four days ago I was doing some work on my computer and my daughter was sitting on the floor next to me playing when I realized that her hand was full of hair. At first I thought "ouch that had to hurt, why isn't she crying" then I started running my fingers through her hair and realized that she hadn't pulled it out, it had just come out on its own. It made me sick to my stomach to watch her pull hair out every time she touched her hair. My husband and I had talked about her loosing her hair and I decided that I was going to let her keep it as long as it still looked okay and he decided that we would shave it before it started looking gross. So we agreed that she could hang on to it for a little while. The next day when she woke up she had hair everywhere including a chunk in her crib. Throughout the day it became easier and easier to see the hair all over her and all over everything she played with. That night I kept having bad dreams about me loosing all of my hair and her loosing all of her hair and I just didn't sleep well. In fact in the middle of the night (I don't think that I was completely awake) I began praying that when we woke up she would have a large bald spot on her head and I would really have no choice but to shave it. The next morning I woke up to her choking on her own hair. Her hair was everywhere. She was in our bed and that meant that the hair was all over me and my husband, our baby and her big brother. Her dad got the vacuum out and we all got vacuumed. Her hair much to my disappointment didn't have a large bald spot, but was falling out very quickly. I still wasn't completely convinced that I was ready to shave it yet though. All day long I found big clumps of hair on the floor, in her crib, on her toys and even in her food and mouth (yuck). At about 3:00pm I called my husband and told him it was time to shave her head. I can't even imagine having an older child or an adult loosing their hair, it is amazing to she how much hair she actually had on our head. I got a little bit of hair on the top/back of her head and put it in an elastic and was going to cut it so that we could save some of her hair to see how her hair changed after chemo. When I was finishing wrapping the elastic around her hair she leaned forward and the whole clump just came out. By the time her dad came home from work her hair had started looking like an old balding man. I was so worried about actually shaving it off, but when it came down to it, I think it was harder to watch it fall out than it was to shave it. Everyone wanted to be a part of her head shaving, so my husband and I took turns shaving it and the kids watched and giggled. She looks darling even when she is bald. Once she was done we gave her a sponge bath and got her dolled up for her first bald baby photo shoot. It was late and we decided it was time for the other kids to go to bed while I vacuumed the carpet to clean up all of the hair she lost during the day. My three year old came running down the stairs and he said "Mom I want my hair cut like sisters" I said you do? Go and tell you dad, so he did, he said "Dad I want my hair all gone like sisters". We didn't shave it that night, but he still wanted it in the morning so we decided that we would shave his too. What a special show of support from our little three year old! Our other kids all think it is quite funny to run up to her and rub her bald head and then run off again. I have to agree it is fun to touch and kiss! I think that I am a lot stronger with all of these things than I give myself credit for.

Dancing In The Rain

2008-10-26T09:30:00.001-07:00

We have appreciated so much all of the love and concern we have had from so many different people. We are really being blessed with angels all around us. " Indeed heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind. " Elder Jeffery R. Holland. We have had so many people help with our children, bring in food, offer up relief during the times that we need a break, and lend a shoulder to cry on. We can't say thank you enough times for the wonderful support system we have around us. We have gained much strength from reading the comments on this blog (so thank you for your love and words of wisdom). We have been given lots of quotes that have boosted us, but there is one in particular that stands out to me and I just can't stop thinking about it. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." There have been so many times in my life where a trial has been thrown at me and I always seem to think "why me, why now, when is this going to be over!" I think I could have benefited from this quote long ago. I have a tendency to wish my life away (things will be better when, I will be happier if , etc. etc.) I think about the road we have ahead of us and realize that I can't ever fully say,"when things are back to normal, back to the way they were". Things will never be back to how they were and we now have a new normal to our life, but if I keep waiting for things to be different or things to be better, I am going to miss out on a whole lot of things happening now that I can never get back! This quote gives me a drive to find that good in now, and also look for hope in the future. This past week we truly have been dancing in the rain. It is funny how life changes when you are thrown into something like this. What used to be important is not important anymore. Our focus is our family. Enjoying our time together, creating happy and fun memories for all of our kids. It is on each other (my husband and I) there isn't time to get upset over things not important, it is about forgetting what I want right now and working together to accomplish what we want. Now that doesn't mean that I don't get a break when I need it, or that my husband doesn't get a break when he needs it, but it means that we are on the same track. We ultimately want to do what is best for each other and our kids. I guess we are taking a look at things in a more selfless way. We are enjoying the kids laughter and confusion more than before. We are finding excitement in the progress our children are making at school and in their extra curricular activities and for the younger two their developmental strides they are making. I am putting this quote at the top of my blog in the hope that I will always remember it, even during the times that I feel so consumed by the storm of our trials that we are facing. By the way this is a two for one day. We posted two blogs today (one that I started yesterday and one today), so don't miss the one below this all about Blood Count (sounds exciting I know)!

Almost Everything You Ever Wanted to Know About Blood Counts

2008-10-25T20:31:00.000-07:00

We got our daughters first blood tests results back since coming home after her chemo. There are four different specific Blood counts that they track, the Red Blood Cells (Hematocrit and Hemoglobin), the White Blood Cells (Lymphocytes, Neutrophils, Eosinophils, Basophils and Monocytes), the ANC (Absolute Neutrophil Count) and the Platelets (clotting agent). Now the three that I most worry about are her Hematocrit (the amount of red blood cells in the blood, a lack of these can make her anemic or look pale, feel tired, dizzy, headache, racing heart or shortness of breath. Healthy Hematocrit levels are 32-42% if she gets down to 20% she will need a blood transfusion. Her hematocrit came back at 33.2% (great). Platelets are the cells in the body that make blood clots (she will have easy bruising, bleeding from the gums or nose, or tiny pink/purple freckle-like spots on her skin called petechia). Healthy platelet levels are 150,000 hers are at 94,000, so they are low, but you don't need a platelet transfusion until you hit 10,000 or lower (so she is still good). ANC (white blood cell) is the last that I worry most about. Her absolute neutrophil count shows her ability to fight infections. A healthy ANC is 3000-5000, her is at 0 that is nothing (very bad). She is extremely vulnerable to infections right now. We (her dad) gives her a Neupogen shot every night to help her body produce white blood cells. We have to be very careful to keep her in the cleanest environment possible right now, when we are around her we keep our hands very clean and don't allow anyone that it sick or has been exposed to sickness get around her until her levels go back up. We also need to be very careful with her temperature. If we notice her feeling warm at all we need to take her temperature. If her temperature is at 100.3 for longer than 1 hour or if her temperature gets to 101.3 for any amount of time we have to call the oncologist and they will have us head to the childrens hospital to be admitted and she will be given medicine and watched very closely so that she will be able to fight of the infection in her body. The oncologist told us that once a chemo patient goes home their blood counts will drop and continue dropping until they hit their low point (which will differ each time), then they will swoop back up again at which point she will be healthy enough to begin chemo again. Our little girl will continue having her blood drawn (through her broviac tube) every Monday and Thursday to track her progress. Now everyone can be experts concerning their blood counts!

A Glimmer of Sunshine During the Storm

2008-10-20T21:13:00.000-07:00

Today was a good day. We are home from the hospital. Our little girl was so excited to come home. She was squealing and smiling from ear to ear. I took her upstairs so I could change my clothes and she took me for a little walk down the hall into each of her siblings rooms looking for them. They had been with there grandparents and weren't quite at our house yet. When they came home she was more smiles and more squeals and it definitely was such a boost of positive energy to see her acting more like her normal self. All day today she has had more energy than she has had in the past four days. It seems like when we are given a trial there are times during that trial when we seem to be drowning in the storm, times we can't seem to get enough air and we are being pulled deeper and deeper. It is at those times when our Savior steps in and allows us a chance to breath, a break in the storm or a glimmer of hope, just enough to help keep us a float. We will cherish her sweet smiles we saw today.

My mom and my sister and I just spent the day sanitizing our house. We went from room to room wiping down walls and using either clorox wipes or bleach and water to kill as many germs as possible. I am hoping to not have to do this again any time soon, (other than the toys and books that the kids use on a regular basis). My hope is that I can stop the germs at the door before they come into the house (even though I know it isn't completely possible, but I am willing to try anything for my baby). My handy husband installed a coat rack in the garage just before you come into the house for the kids to keep their backpacks and coats outside. Once the kids come in they know the routine (they take their clothes off, wash and sanitize their hands and then put on a new outfit. Each time they want to play with their baby sister they use the hand sanitizer first. Hopefully we can prevent as many trips to the children's hospital as possible. The nurses and doctors have let us know of the seriousness of trying to prevent infection and viruses in our little girl. If she runs a fever of 100.3 for longer than an hour we will have to call the oncologist and they will give us instructions for what to do (which will likely be a trip back to the hospital) , and if her fever gets to 101 for any amount of time we are to call and they will always admit us to the hospital for antibiotic and fluid treatments for at least 48hours. It is amazing how when you have an interest in learning something you can retain lots of information in a small amount of time. Ask us almost anything about treatment of yolksac tumors and we can probably tell you about it. My husband and I will hopefully have our nursing degrees by the time we are finished with all of this. We were able to practice giving an orange a shot as well as each other. I have to say that the shot was definitely not the most painful part of the whole ordeal, I feel like I have bruises on my arm where my husband pinched up the fatty area of skin to poke the needle in. I didn't pinch him very hard, but I forgot to draw any of the saline up into the needle and almost gave him a shot with only air in it. By the time we were finished practicing all three of us (my husband and I and the nurse) were all laughing really hard. We are happy to say that one block of treatment is down and three more are left to go before we get to check to see how the tumor is responding to the chemotherapy. We know there is still a lot to come, but like I said before we are so grateful for the small things such as our daughters squeals that help to push us along in our journey.

Read Only With Parental Supervision

2008-10-18T21:26:00.000-07:00

We finished our three rounds of chemo today. I am at home and trying to get a little sleep tonight and my husband is sleeping at the hospital with our baby. I spent the last two nights at the hospital and finally decided I needed a break from everything and a chance to get a little sleep (I think I will be more effective at the hospital and at home with my other kids if I have a few hours of sleep under my belt). Day one of Chemo. My daughter was given an anti nausea drug (Anzemet). We noticed that our little girl was very sleep during all three treatments. Following her treatments our night nurse was getting ready to give her an anti nausea buffer drug (ativan) when it all began. She threw up about every 15 minutes for 3 hours. Now in case you never thought this through (and I hadn't) the chemo drugs are basically poison. When it is removed from her system either by throwing up or urinating you cannot touch it with your bare skin..... So, her first throw up went all over her dad and the floor and her. We (meaning the nurse and I) had to get gloves on and get her clothing removed and then her dad and I gave her a bath (and no not a regular bath because, with a broviac line you cannot get the dressing that covers the tube and entry site wet) with no rinse cleansing sponges that the hospital had. Once we bathed her twice we then redressed her and the nurse cleaned the floor up (I tried to help, but he told me that I needed to let him do it because there are certain precautions that you must take to clean up chemo meds) and my husband had to change into a lovely pair of hospital sweats and a t-shirt that were brought up to our room. He also had to clean his skin twice. Once everything was cleaned up all of the laundry was taken out of the room and washed not once, but yes, twice. After three hours of our sweet little girl throwing up we were able to get some of the anti nausea medicine into her system to help out. They gave her the ativan and 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! While all of the chemo meds were being given she developed a fever (which the dr.'s don't think was related to the chemotherapy) Her fever gradually got higher and higher through out the night until it peaked at 103.3, when her fever finally broke she was soaked her hair and body looked like she had gotten out of the tub. Luckily we had her sleeping on a blue absorbent pad that kept the bedding dry so that we didn't have to change the sheets. Oh, I forgot to mention, but since you don't want chemo on your skin we had to wake her up every two hours and change her diaper, wiping it twice and then apply a barrier cream/diaper rash cream to her bottom. Once in the middle of the night she woke up and was wide awake screaming and hitting us again. I finally told her dad I had had enough and he offered to take her. He said that it took him an hour of bouncing and walking to get her back to sleep. Day two of chemo: We woke up early and very tired only to find that our baby was still very agitated. We tried to feed her several times to no avail. She must have lost her appetite (the cisplatin makes you have a metallic taste in your mouth) I don't know if it was still effecting her or if she just didn't feel hungry because she had a continuous IV in her. She was still very inconsolable and acted very tired from the time she woke up until 1:00pm when she finally cried herself to sleep in her dad's arms. We had both tried so hard to calm her and I was at a loss for what to do with her so I finally just fell to the ground on my knees and prayed. I prayed and cried until she finally fell asleep. There is really something wrong with putting something in your body that makes you so sick in so many different ways just to be healed. I pray that someone will find a better way to cure cancer!!!!!! After she fell asleep I fell asleep and her dad enjoyed the peace and quiet. She woke up feeling much better we even got a small smile or two out of her. Her second round of chemo the nurses began with a different anti nausea drug called Zofran. Then they followed it up with a smaller dose of benadryl and a full dose of ativan. What a huge difference that made. She was still agitated, but not to the extent that she was the night before. She even slept almost all night long (of course we still had to change her diaper and take vitals, but she would fall right back to sleep). It was such a nice break. Day 3 Chemo: We decided to cut the benadryl out completely. It seems to have done the trick with the agitation. She still had some of the irritation, but I would be irritated to if I had been stuck in the hospital for three days and was hooked up to a machine and etc, etc. etc. Over all the chemo was not to terrible today. The down falls today were that her hematicrit levels are low and they will need to do a blood transfusion and the outer portion of her broviac tube broke and they will need to use a repair kit to fix it. I will have to write another blog about how that all went. I am allowed to be really upset and say that this SUCKS. This is not right for anyone to have to go through. I got a really good cry out with my sister in-law and we just bawled and bawled together and I am feeling much better about things. I think that I can go back up tomorrow morning and be the supportive and loving mother that my baby needs me to be. (I found myself at times today where I felt very sick to my stomach and very weak and also very light headed and dizzy) I decide it was time for me to finally take a break from it all, my husband is such a wonderful husband that is willing to carry the load himself for awhile and I can't tell him what a blessing that is. I don't think you can go through something like this and not get a break you will be spent way to early in the game. I think that I will not be so descriptive in my next blogs about her treatments, but will be more informative and short. It seems to be very draining to relive it all over again in my thoughts. This is one of the most (if not the most) difficult things that I have ever had to do in my life. And, We are just getting started..................................

Does Tomorrow Have to Come?

2008-10-15T15:53:00.000-07:00

We got a call the other night from a friend of ours. She had cancer a few years ago and regretfully I never took the chance to find out a lot about it. You hear the word cancer and it seems so scary and unknown. I think to some extent I clumped all cancers into one category and didn't think too much about the different types of cancers there are, so I didn't ask too much about it. My husband and I were both glad that she did so well with her treatments and seemed to be healthy. Like I said before I am so sorry that I never took the time to ask her much about it.... When she called she said that she had just read the blog and realized that her cancer was the same as our daughters and that she would be going through the same chemotherapy treatments. I have to admit that when my husband got off of the phone with her and told me some of the side effects our daughter would experience with the chemo drugs she would be taking I was upset and in tears. I wondered if it wouldn't have been better to just not know what we had coming. Now I have had a few days to think this over and a some documents to read (thanks to our friend) and I have decided that it is so much better to know ahead of time than to not. My reasons are: first, I have less fear about the process than before, because I am informed and don't have the fear of the unknown ahead of me. Second, I will definitely be able to be a strength for my daughter as she is experiencing her pain and discomfort. I think if I had realized what she was in for at the same time that it was happening I would have fallen apart right when she needed me the most. (It seems with all of the knew changes in our daughters health, that I am falling apart for moments and then find strength once I have gotten the tears out of my system and then I can move on to deal with it.) Third, I am so grateful to have someone close to us that I can call and ask for help in easing my daughters burden, someone that has experienced it first hand. So THANK YOU, THANK YOU, THANK YOU, for your willingness to share with me your very personal experiences with going through this type of cancer and also for your knowledge of this type of cancer. I am sure that you will be a wonderful source for us to draw strength from during our little ones fight towards her cure. Now as the title of this blog says "Does tomorrow have to come?" I usually enjoy the idea of a new day coming and the possibilities that it provides. I just can't get myself to feel or find any joy in the idea of our new day tomorrow. Tomorrow we start Chemotherapy and will be inpatient for a few days at the Chilren's Hospital. It is hard to comprehend that there is anything wrong with my daughter. She seems so fine, she runs (if you call it running when they have just learned how to walk) around the house giggling and playing peek-a-boo, cuddling with her baby dolls and climbing up and down the stairs and up and down again. The thought of taking her into the hospital to make her feel so horrible just doesn't seem right. I have a knot in my stomach that just won't go away. I know that this is the only way to get rid of the cancer that plagues her insides, but like I said before it just doesn't seem right! We are so grateful for the peace and comfort we find in knowing that this process will give her a long and healthy life. My other children are enjoying a special vacation with their Grandparents and I couldn't be more happy than to know that they are receiving some special attention during this confusing time and I have had the opportunity to spend a few days alone with my baby, to enjoy her sweet little personality and prep myself for the days to come. I know that we will be able to handle this with all of the love and support we are receiving from everyone. We are so thankful for such a strong support system!

Ready or Not Here We Go

2008-10-10T19:32:00.000-07:00

The oncologist called today and let us know that the Pathology report was in: the type of Germ Cell Tumor is called a Yolk Sac Tumor. Now I don't know a whole lot about it (so I am sure my computer will get much use over the next couple of days). The oncologist answered a few questions that I had and said don't worry too much you will have plenty of time to get all of your questions answered and become an expert on Yolk Sac Tumors. Our little girls medical plan is as follows: She will go in next Thursday and will spend 3-5 days in the hospital as she begins her Chemo treatments. The oncologist listed three different types of chemo medicine that they will be using. The first is cisplatin (this is the one they will be using the most of) the oncologist informed me that some of the side effects are problems with her kidneys and also some loss of hearing. She assured me that not everyone has problems with these but that they are the side effects they are most concerned with for our daughter. The second medicine is etoposide, the side effect of this one is problems with blood pressure and the last one (I am not sure if I am spelling this one correctly the oncologist was difficult to hear when I asked her to spell this one and she did it twice and so I didn't dare ask again) bleomycin this drug can effect her lungs (they said they are not to worried about this one because they will not be using very much of this drug). Of course with all chemo medications there will be the nausea, vomiting and possible blood transfusions. After her stay in the hospital she will spend 3 weeks at home and then repeat the process 3 more times ( a total of 4 rounds of this treatment process). It feels nice to finally know the plan and what we have ahead of us for the next while. I said to my mom the other day "I am tired of get bad news every time we get answers it seems like it is more bad news." I think I keep hoping that they will call and say it is not cancer and wow what a miracle, but that doesn't seem to happen. Although now that I think about it there are some good things we have heard: she will not need any radiation (we hope), she may not need surgery (we hope), her bone scan and bone marrow draws are clear (hooray), her CT scan looks clear and it looks like we caught it early on. So, I do know that there are some things we have heard that are GOOD news! I guess whether we are ready or not we will start into her treatments next week. We still feel hopeful that things will go well for her during her treatments.

Sorry a Little Correction

2008-10-10T08:15:00.000-07:00

So in my last blog I typed that the treatment might effect her vision, but I meant hearing so I went back and corrected it. Her vision should be fine, it is her hearing they want to track. I guess that is all part of having too much information all at the same time. Funny thing is I was typing my information up from the paper that I took notes on while the Oncologist was talking with me, and yes my notes say hearing!!!!!

More Information?!?!?!

2008-10-09T16:39:00.000-07:00

So we had the opportunity to meet with our Home Health Care Nurse. She seems to be very knowledgeable. I was surprised when she brought in a box full of medical items all for our little girl. I couldn't believe everything that she pulled out of it (it reminded me of Mary Poppins bag) she just kept bringing more and more out of it and I couldn't believe that all of it fit inside that box. So we are headed for an extreme lifestyle change. I am not one to stay at home very many days of the week. As our little one begins her treatments we will be spending all of our time at home with her (either her dad or I will have to be here)or at the hospital. We enjoy a clean house, but were told that there is more that we must do to protect or baby from being introduced to other types of germs that could put her life at risk. I am about to look online and see if I can purchase any of the hospital's moisturizing hand sanitizer (it must be better than regular store bought brand). I was told to keep some at every sink in my house as well as in every car and in her diaper bag. My other children must come in and wash their hands then sanitize and change their clothing after coming home from school and church. We are to post a sign outside our house similar to the ones you see at the hospital or on the nursery doors at church warning people that have been coughing, sneezing, had a cold, diarrhea, vomiting, sore throat or been exposed to any communicable diseases within the past month to please call us instead of knocking on our door. The Nurse also explained that all those that will come in contact with her must have had a flu shot as well. Does this all seem like too much? Well I guess that I must ask myself to what extremes will I go to prevent any other types of harm to come to my daughter that might further risk her life. I was also prepped on proper care of her Broviak line and emergency care of it also. I will be making emergency kits to put in her diaper bag, the car, upstairs in our house and also on the main floor. Basically anywhere she is there must be an emergency kit handy. The nurse kept insisting that you can never be too prepared or too cautious. (has your mouth dropped open yet?) We have her cell phone number and the oncologist number handy at all times (yes that means in the cell phone and also memorized) She also made sure that we knew when we would need to forgo calling either of those and call 911 directly. (have I scared you yet?) and the list goes on and on but I won't spend anymore time on that. I also recieved a call from the oncologist so let me update you on what we know. Our little girl has a Germ Cell Tumor (now they are running further testing to determine what type of Germ Cell Tumor it is). She will be going up to the hospital to have her hearing tested so that the oncologists can have a base line of her hearing because they said that the type of treatments they will be using on her tumor could effect her hearing. The dr. thought that maybe she had a form of cancer called Rhabdomyosarcoma or the Germ cell my husband and I asked which of the two would be worse to have and she had simply stated both of them have things that are better and worse than the other. With that said today when the oncologist called she said that the good news is that this type of cancer may not need radiation treatment, but that the bad news is that she will have to undergo a more severe chemotherapy treatment and it will be very harsh on her little body. So we start our chemotherapy treatments one week from today and will most likely spend 5 days at the hospital. I am not sure what to expect when we come home, but am very nervous and distraught at the thought of having to watch my little angel go through these types of treatments. More than anything I wish that I could do it for her myself. No parents want their children to suffer. I hope and pray that her burden will be lifted even a little and that she might be spared some of the pain and discomfort that is coming her way. Please keep our little one in your thoughts and prayers......Please!

Our Unfamiliar Path

2008-10-09T11:24:00.001-07:00

In life we plan out what path we will take any given day, week, or month. We decide our futures. But, sometimes our life is thrusted down a path we never planned on taking, a very unfamiliar path. We had a plan. We knew where we were headed, until two weeks ago when our plan was changed. Our sweet one year old baby girl has been diagnosed with cancer. Instead of planning our next family vacation, date night, shopping trip or even story time with the kids, we are lost in a rush of doctor's visits, tests, hospital stays and numerous nights up on the computer searching for medical answers and sobbing in between it all.Now most of you want to know how this all happened. Well, two weeks ago our little girl was running around playing and having fun with her siblings and a few of her cousins when she needed a diaper change. To our surprise when we took off her diaper there was blood in her diaper and her bottom had blood dripping from it. We rushed her to the doctors and she was examined. Our Dr. was confused by what he saw and knew that he needed to get a second opinion from the local children's hospital. He sent us home for the night and had us come back in the following day. After bringing her in to the Dr. again he said that he thought maybe it was a hormone reaction from being weened from breast milk, but that he wanted to be sure and set up an appointment for us to have a pelvic ultrasound at the children's hospital. The appointment was set up for the following week. When we took her up the Dr. reading the ultra sound informed us that she had a mass in her uterus and that he would need her to come back the following day for a MRI to get a better look. He said that he thought it was either a tumor or a cluster of blood vessels. The MRI confirmed our fears that there was indeed a tumor in her uterus. The testing continued on over the next few days including a bone scan, CT scan and Eco of her heart. We also met with a team of oncologists there at the hospital. Following our meeting our daughter was scheduled for a biopsy the next day. Contingent upon the surgeons findings concerning the tumor they would also put a Broviak tube in place for future cancer treatments and blood draws and do double bone marrow draws. Today we took her in for surgery. We were lucky that the surgeon was able to get her biopsy without an incision through her stomach (hooray!). They took the bone marrow from the front of her pelvis on both sides and her Broviak tube was also put in place . She seems to have done well. The Oncologist ordered 3 more tests to be done with her blood work as well today. They were able to use her tube for that so that she did not need to be poked with a needle again. She does seem to be in a bit of pain from the bone marrow draw since she refuses to do anything but keep her legs very straight and very still.We have had many people ask us how we are doing with all of this and to be completely honest with you we are very overwhelmed. I don't think we have even had much time to completely register all of the information that has come at us so quickly. We both have times where we have felt upset and other times when we have felt alright, luckily we have fallen apart at different times and we have been able to rely on each other for comfort during those times. We both decided that we would like to keep a journal with our thoughts on and a sister in-law of ours suggested typing it on a blog so this will be our journal of the process for our family to treat our daughters cancer. Now before we started this blog we did write down a few of our thoughts that we have had over the last week. As we listen to LDS General Conference this past Saturday and Sunday we turned to each other and commented that most of the talks that were given had a reoccurring theme: Life has challenges but don't despair, our Heavenly Father and his son Jesus Christ will always be here for us to help us through. We have been surprised to find that we both feel so at peace as we have found out about her cancerous tumor. We have had a few blessings and many many prayers of neighbors, friends and loved ones and we couldn't be more grateful. It is amazing the love that has come to our family during this time, our Heavenly Father has sent us many angels in the form of those people who have been willing to drop by or call and send their love as well as offer their help in anyway that they can. We can't help but feel our Saviors love with us at this time. I found a quote that we have found comfort in "When faith replaces doubt, when selfless service eliminates selfish striving, the power of God brings to pass His purposes." Thomas S. Monson. Now we don't know why our little girl has to go through cancer at this time in her life, but we do know that our Father in Heaven does have a hand in all things, and that there is a purpose for all things that we go through in this life.Now in no particular order I am going to make a list of the thoughts I have written down in my note book as they have come to me. I am concerned for my other children and how this process will effect them: I must still be there for my other children physically, emotionally and spiritually. I can't become so consumed by negative thoughts and discouragement that I cannot function and still provide strength and help to my other children. I must be willing to share my feelings with my husband and those who are willing and want to listen. I must be available to my husband for whatever his needs maybe so that we will stay close and strengthen each other during this difficult time. I will focus on the things happening now and not be consumed by the might happens of the future. I will find out what is the next step and accomplish it and then move to the next (baby steps). I want to be strong around our other children to make it less scary and confusing for them. I will be available to talk with them, to answer questions, give my time and lots of extra loves to them (they need reassurance that things will be okay and that they are important too). I am strong and our daughter is too. We will get through this, I CAN DO THIS! Just as a side note when I found out that my daughter might have something wrong with her, before the tumor was ever discovered I was very upset and kept praying saying she has to be just fine, because I am not that type of mother. I can't make it if my children are sick, I can't do it. Our daughter and both my husband and I have had some priesthood blessings and I know that because of these blessings and the comfort given to me by the Holy Ghost that I have a new strength with me one that I didn't think I was capable of having. I am so grateful to be a part of the LDS church and have a knowledge of the gospel. I would be so lost during this difficult time without my faith in my Heavenly Father and in His Son Jesus Christ. They want us to draw strength from them during our trials and I am finding much comfort and strength at this time. They stand ready to help me, being just as close to me as I will let them be. I am sure before this is all through my knees we will have callouses and I will know my Heavenly Father and Savior Jesus Christ very well.