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.

12 comments:

Nickie said...

Great news! Although an ugly day for you both. You are all an example to us all. Hang in there!!

Carter Clan said...

yay! that is the best news ever! What a great start to a new year!

clove said...

We are thrilled that all the results came back good! All the best to you and your family in 2010!

Amy Marble said...

Glad to hear that things are looking good for your little one. She's sure cute!! Loved your Christmas card - you have a beautiful family!!

Jennifer said...

RE: printing blog

I've used Blurb before for my one and only blog book. It took me a while to get the photos arranged how I wanted them. I think it's a great choice for blogs because the software pulls all the blog text and photos together for you. You can change the layouts to suite your style. It caters a bit more to text blogs than photo blogs. There was a time that it wasn't servicing blogger accounts, but I think the software has been updated and should work fine.

Hope that helps. jennifer

Emily said...

Such great news to hear. She is such a cutie! I feel bad she has to go through all of that. Those pokings are no fun!

Janae B said...

That is the greatest ever! We always keep you in our daily prayers. You have the sweetest family ever! Love em' to peices!

Greg and Lisa said...

I was happy to get up-dated on your little sweetie and see that things are still looking good! She is adorable! We hope you are all well and that another year will pass with just as good of news! Love ya! Lisa

Dennis and Maridee said...

I am slow in looking at blogs, but when I saw yours I was happy to see that she is doing well. It was fun seeing your cute family at Easter time. We are grateful for Alyssa's reports and hope that she will continue to pass her TESTS with flying colors!!!

Jennifer and Jason Young said...

so happy for your beautiful family!

The Nelson's said...

Happy 2 year mark! Hope things are still going well for you guys and that she's doing great.

Warrior Mom said...

Please email me at janetcaswell@Hotmail.com if you are still checking messages. I fear my daughter is about to receive this same diagnosis and I am looking to connect with ANYONE!! Please ... you blog is so beautiful.