Thursday, December 15, 2011
Sometimes I think that we are normal. I am use to not being able to go to the grocery store with all my kids, at it is so nice to not have to take them all, and not going all that many places. At times we start to feel normal. We forget about what Aubree went through, we still think cancer everyday, but its normal because we have been thinking cancer everyday for a year. I do think we do go some days without thinking it, but with still having to give Aubree medication everyday, we still think about it a lot. We were getting causal of where we would take her and we enjoyed going out as a family.
It wasnt till Aundrea's recital for Kindergarten that I realized that we are not normal at all. My sister needed help at her house, and so my mom wanst able to come up at watch Aubree, so my husband and I decided that we would just take Aubree with us. I walked in and was a little uneasy, but it was all grownups and very few children. Then the school started to file in, and I started to panic. I know that some of those kids were sick, and I didnt want Aubree around them. I had a mask in my purse out of habit and I put it on fast and got up and went to the back of the room. I was disappointed to be at the back of the room because all of our pictures an video of Aundrea are not good. Aubree got a runny nose the next day and I know its because of being in the school with all those kids. So we are not feeling normal again, and are more careful of where she goes.
Monday, December 5, 2011
Tonight I learned of another child that has relapsed. I dont know them personally, but they did end treatment a month before Aubree was diagnosed. It makes me scared, my heart hurts for these people, but there is also fear for Aubree. But not only Aubree, there are so many other children that I have got to know that I think what if. I know that she will be ok, what else can I tell myself? But the what if's always sneak in, I dont know that I could do it again. I am just glad that I have so much to do, that I dont have a ton of time to think about it, but I still do.....
Thursday, November 10, 2011
Most days are starting to feel normal. Aubree is doing just what she should do for her age. Nelson and Aubree fight all the time, but then are best of friends. She is starting to climb everything, I found her on my desk one day, and gets really excited when bubble guppies come on. But then things happen and I remember just how not normal she is. For the past 6 months I have had to give her medication around the clock. This last couple of weeks it has only been twice a day. I have only forgotten to give her medications to her I think three times. That is huge for me, but the one drug that if forgotten to be given is no more. Aubree took her last dose of Cyclosporine, (her rejection drug for her bone marrow transplant), on Tuesday this week. She is still on two medications for another three months, but we can handle that.
This last week we found out that one of the families that we went through treatment with has relapsed. This has really affected me, she had a sibling bone marrow transplant, and will have to have another transplant. When you go through transplant you think its a cure for the cancer, but this has made me realize that its not. That we could be going through it all over again, and I cant even imagine that. To know what we were in for and how long and the emotional toll it took on all of us. I would be devastated. So pray for sweet Brielle, she is the sweetest 8 year old.
Monday, October 31, 2011
Friday, October 7, 2011
Aubree is doing so good, the Doctors even moved her weekly visits to every three weeks! Its nice not to have to go every week. She also has only 5 more weeks left on her rejection drug and then her immune system can try to get back to normal and then we can get back to being more normal. But our life is really getting back to normal, Aubree can go outside and play and she loves it. She is walking now and so she is every where! A couple of weeks ago she decided to follow Nelson to the bathroom, but he didnt want her in there with him, so he slammed the door, never a good thing! It cut into her finger, so we got to go and visit the ER. I was at my friends house without Nelson, and so she watched Nelson and Aundrea while one of her friends rushed me and Aubree over to Primaries. We stayed there most of the night, but we didnt have to stay over! Her thumb looks really good now, she may get a nail back someday, but she can use it. It was a weird knowledge to know that the blood that was coming out of her fingers was Nelson's. The body is amazing! Aubree is amazing, she wasnt given any pain medication for her thumb for over 4 hours, and during that time she did so good, she would even laugh at me sometimes! She also had to get an IV in the other had so she couldnt use either of them for awhile, but they had to give her a big dose of IV antibiotics right away so she didnt get a huge infection. Here is a video of her after it was all done and she was just feeling good, I just laugh at her every time I see her so "high".
Wednesday, September 7, 2011
I found this picture of the first time she had her line replaced and I couldnt believe the difference! It was a week after she got out of the hospital for her transplant at end of May, so a little over 4 months ago. It was before she was diagnosed with Graft vs Host and I remember checking in for this and having her throw up while I signed papers for the surgery. I had her on my lap holding the emasis basin with one hand up to her mouth and the other hand with a pen signing the papers. The girl checking her in was so impressed that I was doing it all. She looks so sick here, I cant believe that I never saw how sick she was while she was so sick! I am just so thankful that she is so much better and it happened so quickly!
Thursday, September 1, 2011
Monday, August 22, 2011
My emotions are always just right under the surface and are always there and I seem to cry all the time at anything. I always cry when reading others blogs, I cried when I read about my friend receiving a bed! But my heart is broken today as I heard the news of another child loosing her battle. I was talking to my mom today and she asked what was going on and told her I couldn't read his blog because it is to hard. It is such a reality and a possibility for me. But my thoughts are with this family. I met them only once and their story has touched me. The parents were married at Primary Childrens so that their son could attend and he was inpatient. She is pregnant and he will never meet his sister. He had only weeks to live after finding out on a routine MRI that he had relapsed. He was 7, and he was loved!
Sunday, August 14, 2011
Friday, August 5, 2011
The second big thing yesterday was that Aubree gained two pounds in a week! That means that she is eating way more calories than I have been thinking. So after talking to the Doctors we decided to pull her NG tube out and see how she does. She has never been allowed to truly be hungry and have that relationship with food that we all have. (She has it with her little red backpack that houses her feeding pump!) When she woke up yesterday from her Anastasia, she was so mad because she was really hungry. I showed her a bag of Doritos, her favorite and she stopped crying and started eating them. She was hungry! This morning she woke up at 6 am hungry and drank two ounces of milk. She has never drank that much at one time before. So I really think it will work. As the days go on she will be able to drink just a little more and eat a little more and she will be ok without her tube! I cant believe that its coming more to a close! I thought this day would never come! It has been such a long road with her eating. Now if only we can get her to have normal blood tests and get her central line out. That will be the day!
Thursday, July 28, 2011
I got a call from them today and was told that we needed to stop her steroid, she still had one week left on it. We were also told that her rejection drug level was low but they wanted it to stay there. They want all this because they want to retest her bone marrow. Her last biopsy showed some questionable cells and they want to see what will happen when they take her off some of these medications that are suppressing her immune system. The hope is that Nelson's bone marrow will take care of all these questionable cells and she will get a clean bill of health.
Its a little unnerving because when we talked to them about the results they said if they were worried they would push her to get off her drugs a little faster, isnt that what they are doing now? So we are hope that her tests will come back clean this next time and we wont have anything to worry about!
Sunday, July 17, 2011
Here is what I think if whenever I think of Aubree. My sweet bald little girl. This picture was taken maybe 3 months ago. So it's hard to believe how much hair she now has. The rejection drug that she is taking is making her hairy! Since she is a baby she is even more hairy than most. These pictures of her hairy back just crack me up. I did spear her the embarrassment of having a picture of her butt, its just as hairy. I'm not sure if its the chemo or the rejection drug that has made her skin darker. But she really is another little girl now. She looks so different.
Wednesday, June 29, 2011
For the most part they were all good. Her bone marrow showed that it was all Nelsons! YEA! Her blood under the microscope was clear of the Leukemia. They also did an even more sensitive test and that showed 0.02% that might be blasts. Since she is on her rejection drug and the steroids they are not sure if they are AML cells or not. They will probably repeat the test later on when she is off her rejection drug for a couple of months to see if these increase and if they can tell for sure what they are. She will not be off her rejection drug for another 4 months though so no use in stewing over the .02. They arent worried enough to try to hurry and get her off of her drugs to see so that is good.
The other thing that we found out is that she will probably be on her rejection drugs for at least another 4 months. That means no problems at all, and that just hasnt been the case for us, so probably longer. She will need her central line till she is off them also, because her body isnt very effective in absorbing magnesium because of the rejection drug, so she gets magnesium every night through her line.
They did start her taper again on her steroids so that is good. Also her red blood counts are normal and her hemoglobin is in normal range finally. We are still waiting for the platelets to be in normal range but they seem to go up every week. Her white count is "normal" but its not really, the steroids kind of screw it up and make it look high when its not. So that is all really good news!
We are so excited that she is doing so good. We are so happy with her results, and kind of bumbed that she has to have another bone marrow biopsy later, but we will take all the good news that we can get!
Wednesday, June 22, 2011
She is doing really good at home. She gets into everything around here. She is right on track for her age. Opening cupboards and pulling everything out, putting everything in her mouth. She keeps us busy. We are concentrated on getting her walking so that her hands arent all over the dirty floor. She still is not eating at all, she was drinking out of a sippy for a couple of days but that excitement as worn off and she is back to getting most everything through her feeding tube. It could be a very long road before she eats again, she just is not interested at all. But talking to people who have gone through chemo say that it messes with your taste buds and nothing sounds or tastes good and it takes awhile to wear off. So maybe when that does things will start to taste good and she will want more.
I was reading somewhere about childhood cancer statistics and here are some. 35 children per DAY are diagnosed with cancer, 1 out of 4 will not survive, 4 out of 5 that do survive will experience late effects from their treatment. Its hard to believe that on the same day that Aubree was diagnosed that 34 other families went through it with us. That was a horrible day for us, but so many others had a horrible day with that news also. If you look at my blog list I have I think 6 blogs linked there, two of those Angles did not make it, this is why I want to start to contribute to the fight to get help with research. There are things that can be done, and people are trying to find a cure, or just better treatment with better odds. But they need money to do it. This is why I am walking on July 9th with Curesearch. That organization gives 95% of what they make to the research of childhood cancer! Please join or donate to team Aubree! http://curesearchwalk.org/saltlakecity/aubreesfight
Thursday, June 9, 2011
Here is a video that Erin's Mom made for Cure Search. If you look to the side her blog is on the my blog list as Little Air Bear. She was diagnosed the same day that Aubree was born. We were in treatment at the same time. Erin is in remission, but her family still lives with the fear of relapse. If we could find a cure for childhood cancer then families wouldnt have to go through this!
Wednesday, June 8, 2011
Sunday, June 5, 2011
Here is a video of Children HERE in Salt Lake City who are going through treatment at this time. Help us find a cure. Come walk on July 9th at Liberty Park. If you cant come then help us by donating any amount, Or become a virtual walker. Join team Aubree. http://curesearchwalk.org/saltlakecity/aubreesfight
Friday, June 3, 2011
Cure Search is having a walk July 9th, they give 100% to childhood cancer research. Please join Aubree's team and we do not want children to go through what she has. Remeber that this vidoe was made before her transplant. There are many more months of pain that she has gone through since. Please help, donate anything. Be a virtual walker if you cant come, support Aubree! http://curesearchwalk.org/saltlakecity/aubreesfight
Aubree's blood cultures came back with no more bacteria in it. Taking out the line was what needed to happen. She will get her THIRD central line tomorrow. I am not sure when she will be able to come home but hopefully soon.
Wednesday, June 1, 2011
Tuesday, May 31, 2011
Aubree had another fever today. That is not a good sign for her and her central line. Her blood cultures have all come back positive the last couple of days. They are waiting for her blood cultures to come back today to see if they grow bactieria or not. If they do they will pull her central line and replace it. She will have a regular old IV for a couple of days till they decide that the bacterial infection is gone, then they will decide what kind of line to put back in her. She will need a line for months to come, and we still use it, even at home, a few times a day and all night. If her cultures come back with no growth she will still be in the hospital for a couple of days because of the fever today. This means that she will be there for her birthday tomorrow. If she needs her line pulled, they will do it tomorrow. I am so sad that she will be there on her birthday and even more sad to think that she might go into surgery. But the only holiday she has spent out of the hospital is Easter so I guess its just one more "holiday" in the hospital!
Sunday, May 29, 2011
Saturday, May 28, 2011
I was reading somewhere that ranked Primary Children's Oncology as 38th in the nation. But I sure dont feel like they are when I go in. The one good thing about having to go in, is the staff. They are AMAZING! They are so warm in welcoming and I know when we go that Aubree is going to get great care.
My mom was suppose to have this weekend off, she was going to go to a wedding, she got my message this morning that Aubree was back in and came right up to relieve me so that I could go home and sleep. She knew that I hadnt had much sleep. My Dad didnt complain about going to the wedding alone, and freely let her come. I have the best parents in the world. They are so supportive and I would never have made it through this without them.
Thursday, May 19, 2011
Saturday, May 14, 2011
I am just glad that she is home and doing so good. I fell so blessed to have her on the mend. My heart goes out to Tanner and his family, I cant imagine what you are going through. My prayers are with you, and my heart breaks for you!
Saturday, May 7, 2011
They have done a number of tests, including 18 biopsy's from her intestinal tract. Everything has come back normal. The only thing that didnt was a little bit of inflamation in her stomach. With her not being able to move anything in her stomach to her small intestines, with her cell counts dropping and with everything else that is going on they have decided that she must have graft vs host in her stomach. They have started her on steriods to help with this and put her on an IV version of her rejection drug. (she also is not absorbing her medication in her stomach well) These two things should help her to be able to start processing things in her stomach. The steriods make her very aggitated and she is not very happy. It could be a long couple of weeks for all of us!
Sunday, May 1, 2011
Thursday, April 28, 2011
Other than that she is doing good, she is starting to really crawl and I am sure by this time next week she will be really fast. We have her feeds up to where she is only on them for 14 hours a day. She is making progress. They only thing that really has me worried is she refuses to eat anything by mouth. I have to shove things in to get her to eat. I know that I need to be patient, but I really want some normalcy, like the feeding tube out and her eating and not always connected to a back pack that we have to lug around all the time. I also hate calling clinic everyday with something new that has happened. I really struggle with when to call them and let them know when something has happened. I dont want to be the mother that is always calling for every little thing, but I dont want to be the mother that doesnt call and she gets really sick. Hopefully she stops having things that I feel the need to call and let the Doc's know that something happened. That we can go a couple of days with out having to be in clinic or at the hospital. Ugh..... I will stop my ranting there! :)
Sunday, April 24, 2011
Aubree is doing good, we have been able to up her feeds to 20 mils an hour, she does not throw up during the day to much anymore, if she does its usually just mucus from her cold. During the night she is still throwing up quit a bit, and last night I dont think she kept any food down. I am convinced that its the TPN and lipids. I think her body can only handle one type of nutrition at once. Two nights ago I did not give her the TPN and lipids and it was night and day. She threw up once, but it was hardly anything. I didnt give her TPN because she had a line break. It was her first line break and I thought that we were going to be able to make it without one. But no such luck. We went in to have it fixed and it wasnt working really well. It had clotted off, so they put TPA in her line, a product to help declot her line. She had to keep it in over night and we went in yesterday to see what was going on. If her line didnt unclot we were looking at surgery to replace her line if it didnt declot. But we were able to go in and they did another repair on the line and one side was working, I am waiting for home health to come and declot her other line. I dont think that they will take her to surgery if she at least has one line working. The bad thing is that the line that works in the line they can not draw a certain lab out of, so she would have to be stuck every time we went into clinic so they could get an accurate level of the drug in her body. Horrible if you ask me, its the one advatage of having the line in the first place. Other than that she is doing so good, she loves being home, she loves being with Aundrea and Nelson. She is starting to crawl to try to keep up with them, but she is very slow. They have to be really close for her to try or she has to really want something to crawl to get it. I feel as though I am rambling, it could be lack of sleep, so I am going to end here.
The bell that is rung at the end of treatment. It says, "Ring this bell three times real well, the toll to clearly say, this treatments done, this course is run, now I'm on my way."
When you are done with your treatment the staff comes and sings to you, your chemo is over song, to the tune of happy birthday, Aubree loved it!