Tuesday, December 29, 2009

She is One Year Post Chemotherapy!!

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

Sunday, October 4, 2009

Still Looking Good

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

Tuesday, June 16, 2009

Many Thanks

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

Wednesday, June 3, 2009

Unchanged.....Good News

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

Sunday, May 31, 2009


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

Sunday, May 3, 2009

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

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

Monday, April 20, 2009

New Hair

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