tag:blogger.com,1999:blog-61034356335007011442024-03-13T22:40:57.575-07:00Together for TaleahStevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.comBlogger173125tag:blogger.com,1999:blog-6103435633500701144.post-25569010055543097912015-05-10T21:25:00.003-07:002015-05-10T21:25:38.960-07:00Mother's Day 2015<div style="text-align: center;">
Mother's Day seemed fitting to update on Taleah and life back home.</div>
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There is no way to catch up on everything that has happened in the last 7 months that we have been home. It has been more than wonderful in so many ways. She was able to start back in cheer, dance and gymnastics in November. She started kindergarten in the middle of March. Taleah has LOVED being a part of normal life stuff. She has caught every sickness there is (it feels that way), but we knew that was expected. That doesn't mean that I didn't freak out every time she had a fever.. I did and much more.. has to be some sort of PTSD or something. She has the attitude back in full force and amazes me with the strength she has. </div>
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It hasn't all been easy... like the kids in stores that ask if she is a boy because of her hair. Or when kids she knows treat her as if she is contagious (they would whisper or just ask me) and keep their distance. Many things that I would have to help her understand and explain that they are kids and are either curious or just don't know any better. I will say that the good has outweighed the bad by one million though!</div>
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Medically... things have been pretty good. Not perfect... but good. We have had a few scares with labs, tests, ect. It was so heart-wrenching in the moment that I could barely talk about it and for some reason I couldn't write about it.</div>
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Basically, she has labs and a visit with the Bone Marrow Team every 4 weeks. We tested the her bone marrow before day 100 and her chimerism was at 100% donor. I can't remember why they decided to test the blood chimerism, but they did and I got a call the day after Christmas. They told me that they didn't want to ruin Christmas but her labs were concerning. Her blood chimerism was at 85% (you want 100%) and obviously we don't want that 15% of her blood because her blood makes cancer cells. I was FREAKING out and they wanted us up there in the next few days to do another bone marrow aspiration to see where she was at. Typically, the bone marrow (where the blood is made) is a little lower than the blood. I was in a panic because this would mean that her bone marrow is making a comeback and killing of Tait's. I was sick, heartbroken and could hardly function. We made it up there without letting her know what was happening and I was basically told not to panic until we received the results (yeah right). I talked to many cancer moms and not many had this similar experience. The results were in and they were a little stumped but optimistic. Her bone marrow was still 100% donor. Her blood was 85% and breaking that down even more was due to her T cells (the ones that fight cancer). She still had 15% of her own T cells circulating in her blood. The plan was to test every 2-4 weeks and see if it was rising or declining. If it were declining, we would worry because her T cells obviously sucked at fighting cancer. IF the cancer were to come back she would only have 85% of the army to fight it off. I was still super nervous but felt a little better that her bone marrow was still in a good place. The explanation for the marrow to be 100% but not the blood was due to some of the cells in the blood never being killed off before the transplant. Tait's T cells are just taking a little time to kill off Taleah's T cells.</div>
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Long story short, we did lots of tests and trips to SLC but as of last week her T cells are up to 96%. Yay! That is a big step and we feel really blessed and we need it to keep rising. </div>
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We are close the the one year post transplant so we will be doing another bone marrow aspiration and lots of other testing within the next 6 weeks. I am already starting to feel a little anxious about it but I need to remember that God has a plan for us. </div>
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Honestly, today (Mother's Day) didn't go exactly how I thought I was wishing it would. Scott ended up having to work all day, the kids fought, tantrums galore, crying, time outs, extra amount of poopy diapers, disobedient moments, ect. BUT there were also Mother's Day songs, hugs, kisses, homemade gifts, yummy food, time with family, a hard working husband, and cute funny moments. It was a perfect reminder of the Mother's Day I wished for last year as we were preparing for the transplant... a day with all of my happy, healthy kids under one roof. That was just what I had and I am SO grateful. Life can be chaotic and crazy but I feel very blessed to have spent the day with my 4 littles. </div>
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I had to write about it, update our friends and family and ask for good vibes and prayer on her behalf over the next little bit. Staying positive and trying to eliminate the anxiety.</div>
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Happy Mother's Day to all of the wonderful mothers out there. </div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com3tag:blogger.com,1999:blog-6103435633500701144.post-78404039787195495522014-10-09T16:13:00.001-07:002014-10-09T16:13:06.970-07:00Home<div class="separator" style="clear: both; text-align: center;">
The weekend of waiting was slightly torture. I just wanted to hear that she was 100% donor and all would be well. We tried to make the most of our week before we would hear the results .Scott and Slade surprised us and spent Sun- Wed with us anxiously awaiting the news. We visited Gardner Village to celebrate the good news (so far) with the Schanz family. We adore them and are forever grateful to them. Taleah was happy and I tried to soak up the time as a family. I mean hearing that she was technically cancer free is kind of a big deal.</div>
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I couldn't stand the waiting and I knew there was a chance that they would have the results Tuesday night, which was the day before our big appointment. I was "that mom" and called begging for results. They sent me to the nurse practioner and she didn't know yet. She pulled up the results and repeated the information that we had already heard and my heart was pounding. She then informed me that she was 100% donor and all of the tests looked great. Tears filled my eyes, it felt like my heart stopped beating and I didn't even know what to say. The big moment we had been waiting for. Words cannot describe the emotions running through my body at that point. </div>
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We met with the docs the next day and we were cleared to go home anytime. We were on Day 93 and being sent home. I couldn't believe it. Of course we had a ton of packing to do and knew that it wouldn't happen until the next day. I was ready to stay up all night so we could head home the next morning. </div>
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Let's not forget the trouble we were having with her line. It was falling out... so what a better way to the end the day then letting it "fall out" at clinic. I will say it was traumatic but we got it done and avoided a trip to the OR. Yay!</div>
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My mom mentioned that we needed to wait until 4pm to pull into town. So we stopped in Provo to see Tavia and have lunch. She then informed me that I needed to be pulling in at a certain point. I didn't know why and there was no way that we would be home at that time. She said she would figure it out. I had no idea what that meant. </div>
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Driving into our neighborhood, lined with people we love and decorations galore.... it was surreal. I was low on sleep, excited, anxious and then felt an enormous amount of love. The pictures don't do it justice. Saint George is amazing. The people are amazing. I will never know how many people helped, how many people donated money, and all of the work that went into this wonderful homecoming. But I do know it as amazing and we all loved it. </div>
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The basement and the playroom is another story. We had started the process before she relapsed.We knew we wanted a playroom, but now a playroom would mean that much more. There were SO many people that spent countless hours, money, time and their talents to make the basement something great to come home to. It isn't all the way finished, but pretty dang close. And that playroom is a dream. The kids love it. I love it. I can't believe all that happened in the months we were gone. I wish we could adequately thank the people that helped. Again, we are so grateful!!</div>
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We had a great celebration in our favorite place... Lake Powell. We spent time with family and friends and LOVED every second. Taleah was in heaven.</div>
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We even made a special dance video....</div>
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The plan....</div>
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We will visit PCMC every 4 weeks. We still have to visit the hospital every time she has a fever (it's already happened) for a CBC, cultures and check up. It still freaks me out and my head automatically goes to the worst place possible. She cannot go to school because she isn't immunized anymore. It is comparable to a newborn immune system. We can't do immunizations for a year. We need to stay away from sick people but she can start extra curricular activities (but of course no sick people).</div>
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I want to enjoy life and live like it will last forever. However, you never know and that about kills me. I try not to let it get to my head, but it does. Fear is no way to live so we will do our best. </div>
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We are just so happy to be home and under one roof. It feels like a dream. </div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com3tag:blogger.com,1999:blog-6103435633500701144.post-76090989682822339032014-09-15T22:24:00.001-07:002014-09-15T22:24:29.267-07:00Day 79-91<div align="center">
Well, to say that we are anxious to hear the results would be an understatement. The waiting game is intense. They told us 5-7 days. We have heard some of the preliminary results which included the great news of clean/cancer free bone marrow and cellularity of 90% (active cells in the bone marrow-average at this point is 30%). That was really great to hear, but the big tests take longer and will determine our departure. More importantly than our departure, it determines the success of the bone marrow transplant. The hard work, sweat and tears of the last 6 months. Kind of a big deal!</div>
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Taleah has been feeling pretty great. I feel like the fatigue has improved a lot and she is really hard to keep entertained. She is constantly wanting to help with the twins and is pretty much bored of me and everything about our life right now. </div>
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Sadly, cancer has made her think that she has to have someone with her all of the time and be pretty much entertained 24/7. That is not real life, but in her mind it is because it has been that way over the last 6 months. Slade has experienced similar things because he is constantly passed around to be cared for and I think everyone feels bad for his "not normal" life (I totally do).... so he gets a way with a little more... or just gets all of the attention.... either way he hasn't had to portray much patience, sharing, entertaining himself. </div>
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I am documenting this because we are experiencing this firsthand as Scott brought Slade up to surprise us for this (hopefully) last week up here. Taleah had been asking for Slade and I had been missing them like crazy. It has been great to be together, but we are realizing that they haven't had to share with each other. Schedules are a little messed up. We are just not our "normal selves", which is understandable. And things just need some work, routine and normalcy. </div>
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It makes us even more anxious to be home as a family, practice patience, routines, love, ect. It has been so long since we have had our family under one roof. I realize that I sound really desperate, but I am. I have just about had it with all of this and want to have my little family home. I want Taleah to be able to put this all behind her and move on with her life. She is SO ready. </div>
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The endless amounts of people that are bending over backwards for us is so humbling. I can't even begin to name them all for fear of forgetting someone. I receive text messages all of the time of people letting us know of special prayers and fasts on behalf of Taleah and our family. It means the world and I seriously want to cry almost every time I read one. </div>
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Wednesday can't come soon enough. </div>
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Praying for good news. </div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com1tag:blogger.com,1999:blog-6103435633500701144.post-49258322689692689242014-09-04T12:28:00.002-07:002014-09-04T12:28:31.342-07:00Day 66-78<div class="separator" style="clear: both; text-align: center;">
Time seems to moving faster and it probably has to do with the fact that she is feeling a little bit better. She has been such a good help with the twins and constantly asking what she can to do help. </div>
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I was able to take a 48 hour trip to Saint George to see Scott and Slade because it had been a few weeks. It is hard not being together and not being "home". It was much needed. We have sweet friends that bought me a buddy pass to St. George so I was able to fly with one of the twins (I'm not brave enough to take both). Tait is a little less maintenance so she won the ticket home (sounds horrible but it's true).</div>
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Scott and Slade were able to drive us back up to SLC and spend some time as a family. That was the most needed and came in perfect timing. Honestly, when Taleah isn't feeling well she only handles Slade in small doses. This time she was feeling so much better and they got along so well. Such a simple thing, but it made me tear up every time I saw them playing, hugging or any kind of interaction. Cancer will do that to ya!</div>
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We have been "apart" for almost 6 months. It has been a giant challenge on top of cancer, stress, financials, ect. To say that it's been easy, we get along perfectly and love the lessons we are learning about marriage and life.... would not be true. To say that we have grown, learned communication, built a stronger foundation for this family would be accurate. I have learned that I am pretty lucky to have a husband that loves me, loves our kids and wants to learn and grow from this. I have learned to do a lot without him, but when he is here I realize how much I really need him and want him all of the time. </div>
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The family time was amazing. I loved every second of it (even the high maintenance twins). Taleah said multiple times, "I like it so much better when our whole family is here". Amen sister. </div>
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I feel like Taleah is almost back to normal. I was able to bring her cheer uniform back up and she was in heaven. She hasn't wanted to dance much and definitely not tumble. When she put the uniform on, it was like it all came back to her! It was hilarious and awesome. </div>
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Taleah had clinic and was determined to climb the stairs instead of ride the elevator. This is four flights of stairs. I didn't think she could do it. You would have to know that this is only our second visit without the stroller. A lot of our appointments have consisted of the stroller only and carrying her to the bathroom, ect. This was huge and I got teary eyed watching her climb those stairs with determination. (I am normally not super emotional but this dang cancer may have changed me a bit)</div>
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It was seriously a reunion at clinic that day. We saw so many friends, visited a lot and felt really comfortable being there. The nurses even brought out pics from her first Halloween as a cancer patient there (almost 3 years ago). Kind of odd how that happens and you end up knowing more people than not. Odd... but great!</div>
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Her line is working and holding strong. We have her bone marrow aspiration on September 10. We will not have the specific, most important results until the following week. It will be a long, painful week of waiting but nothing I can do about that. Her labs are looking good so far. Her marrow appears to be growing at a steady rate. IF everything looks good and she is 100% donor then we can come home!! We will still be going up for monthly (possibly bi-weekly) visits, she still won't be able to attend school and we will still be cautious with the immune system but we would be HOME!! I don't want to get our hopes up, but I really hope everything is working and we can be here as a family. This experience has really opened my eyes to what is important and really matters. Life is a crazy thing but we are ready to live it!</div>
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Taleah is a rockstar along with all of the other kids. I wish I could convey the love I have for these kids and what they go through. September is Childhood Cancer Awareness month and I wish Gold was as popular as pink is for breast cancer. I plan to give back and bring awareness when I have a little more energy and within me. I want to serve people and help others because let's be honest, that is all people have done for me and my family for 3 years. </div>
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Please pray for Taleah and that aspiration next week. </div>
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We feel the love and prayers. </div>
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We really do.</div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com1tag:blogger.com,1999:blog-6103435633500701144.post-3069816600652567162014-08-19T23:02:00.000-07:002014-08-19T23:06:34.328-07:00Lately (Day 47-65)<div class="separator" style="clear: both; text-align: center;">
The first few pics were supposed to go with the last post… just the amazing friends, hospital staff and family that we have.</div>
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These next few pics were taken right before the transplant. They are some of the most treasured pictures that I have. Taleah loved every minute of it. I love seeing that bald head and it brings an overwhelming amount of emotions. </div>
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It has been a roller coaster as usual. Scott was able to spend a little over a week up here with us and it was wonderful to be a family. It is always more stressful when Taleah doesn't feel well. She started feeling better the night before he left and it made the week without someone staying with me much more bearable. She was almost back to herself at times and I was more than thrilled. She was taking selfies, dancing, making up cheer routines… which are things she used to do. I can't even describe how happy I was to see some of her spunk coming back. I mean this happened about 4-6 hours of the day which was a huge improvement.</div>
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The labs are continuing to look pretty good. It seems as though things are on track. She doesn't love going to clinic except for the crafts that pass by the time. Her broviac line has been giving us some trouble. It doesn't always want to draw blood, which is a problem. It seems like we have been trying everything to get it to draw. We just need it to cooperate. </div>
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Taleah also had her first lumbar puncture post transplant. She handled it pretty well. They found some white cells in her CSF, tested it for leukemia cells and luckily they were not. They explained to me that it was inflammation in the spinal column and it was very common. They also told me that we would not be continuing these LP's due to the white cells. I am not sure how I feel about that, but apparently it will do more harm than good. When I told Taleah that she didn't have to have any more, she replied, "They really don't bother me, but I just hate the bandaids." Good for her and sad that they don't even phase her anymore. </div>
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I left to Saint George for the weekend while she stayed with my aunt and then my mom. She was thrilled to spend one on one time with them and informed me that she needed a break from all of us. Ha. I needed to move Slade back so that he could start pre-school and soccer and feel "normal".</div>
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It felt so good to be in STG. I loved being at my own home. I miss it so much. It didn't feel right because Taleah wasn't there, but it was a great reminder of how much I want to be home with my little family. All 6 of us. Soon enough.</div>
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I must say that Taleah was a little heartbroken when she saw all of her friends going to kindergarten. She asked me why she had to get cancer. I hate when I don't have an answer for those kinds of questions. I decided that we would have "kindergarten" at our apartment. I have a few supplies and I can play pretend. She enjoyed getting "ready" and came ready to learn. It lasted about 20 minutes because her energy level has been going back down. It was a moment I will never forget as a mom. I want her to feel normal but I am not sure if that helped or made it worse. </div>
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She is such a sweet girl and it totally sucks that she can't be like the other kids. Just a little slap in the face that cancer has total control of our lives. Ugh. Not for long though… that's what I keep telling myself. We talk about the things she will do once we get back and the activities that she wants to be a part of. I keep trying to give her things to look forward to. </div>
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The past few days have been rough. Slade started preschool and I was SO sad that I couldn't be there to take him. I feel like that is my job and I can't do it. Scott was able to take him and I know Slade loved that so it is really nothing that I should worry about. Aside from why I was having a rough time, Taleah is really having a rough time. She has been fatigued, nauseous, and throwing up. I feel like we can't get caught up on the fluids and eating and we have fallen too far behind. Luckily, we have clinic tomorrow and hoping some fluids will do her some good. She is losing weight and it is hard to see her just skin and bones. I miss her little chunk. She can hardly even get up to go to the bathroom. It seemed as though we were headed in the right direction and now it feels like we have taken 5 steps back. </div>
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We do dressing changes at home once a week… and I pointed out at clinic last week that her line has been slowly sliding out of her chest (it's not supposed to do that). As I was changing her dressing, I noticed it had slipped even more. Well, when I turned to grab the new dressing to place on… I looked back and her line is slowly coming out. I immediately stopped it, but didn't know what to do other than put the dressing back on. This is something we will definitely address at clinic. I don't even know if it is in the right place anymore. Ugh just one more thing to stress about. </div>
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Today has been rough so I am feeling a little down about things. We still have a good 40 days up here. We will be doing her bone marrow aspiration on September 10 (day 85) and it will take about a week to get those results. Those results are key in telling us if the transplant is working/as worked. We would love for it to be 100% donor, but only time will tell. If things look good, then we can come home. I am trying to focus on getting us there. I miss Slade. I miss Scott. I miss my jobs. I miss being a family. But this is all worth it if we can cure Taleah and have our happy, healthy girl back. </div>
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Positive thinking.</div>
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Rely on Miracles.</div>
<br />Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com3tag:blogger.com,1999:blog-6103435633500701144.post-71972001128586425152014-08-04T21:49:00.001-07:002014-08-04T21:51:52.350-07:00Surviving- up to Day 47<div align="center">
This rollercoaster ride sure has some good moments. The concert in the hospital was definitely one of those moments. It was extremely humbling and touching. These kids were all confined to their rooms and making the best of their night. They opened their doors and shared their talents. Kids ranging from 2-17. I wish I had all of it on video. Here is a link to a small part of it and it is pretty obvious that these kids are special.<br />
<a href="http://www.youtube.com/watch?v=sqVRUChSM9g">http://www.youtube.com/watch?v=sqVRUChSM9g</a><br />
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There is just something about PCMC. You never want to be there when you are trapped there, but at the same time it is a really special place... and has a really special feeling about it. The people that work there are all angels and make it so much better. Taleah had her "favorites" but never really had any that she disliked. I had my favorites as well and those nurses will forever hold a special place in my heart! I mean, we practically lived with them for 4 months. You can never get away... when you are sleeping, when you have to use the bathroom in the middle of the night and make the long walk down the hall, when you are brushing your teeth or taking make-up off, ect. There is always someone. They see the good and the bad, the happy and the sad, the pretty and the ugly. They know way too much, but still make ya feel like they aren't even judging. It's great. They really are great. Taleah wanted to make a music video of the nurses to a song she loves (don't judge me for the song she chose). They were such great sports and played right along. I had to share the video so everyone can see how awesome they really are (I really wish I wasn't in it... the things we do for our kids).<br />
<a href="http://www.youtube.com/watch?v=ZzDQLq8nXng&list=UUDhfin5GWGN87JUX3al5IRA">http://www.youtube.com/watch?v=ZzDQLq8nXng&list=UUDhfin5GWGN87JUX3al5IRA</a><br />
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As for Taleah... it has been a rough week. I guess not has rough as weeks before, but you just hope and assume that she is going to be better now that we aren't in the hospital. It is a long road ahead and I have to remember that this is a marathon not a sprint. Ugh.. that patience again. I think the poor girl feels like she will never be normal again. She keeps asking me questions about when and how long. I think she is trying to grasp how long life will be like this.<br />
Some days are better than others. I would say, on average, she has about 3-5 hours a day that she feels pretty good. Pretty good meaning that she will sit up, on the ground or at the table and do something (play game, color, craft). The rest of the day she prefers to lay on the couch or in the bed and "watch something" (she doesn't really watch). They are encouraging her to get up and move but it is really hard to do. We are also encouraging eating/drinking and that is a task in itself. We have her on fluid at night this week because of the cold she caught and I think it has made a difference. No food sounds good to her and she would prefer to eat 1 or 2 bites and I have to force an additional 6-8 bites. It is a constant battle. Her temp has been a little higher than her norm and it gives me anxiety. Fevers are not taken lightly so sleep has been limited because I felt the need to take her temp all night long. I am hoping it is her body fighting the cold, but ya never know.<br />
The pills... oh man. It is a battle every morning and every night. She takes between 8-12 every morning and night. I wrap them in starbursts every Sunday (takes me about 1-2 hours to prepare the pills for the week) to make it easier for her so I can't imagine what it would be like to do it without... which I am threatening at this point because I am sick of the battle. I know she hates it and so sick of it but it goes back to the concept that we are doing all of these crappy/hard things to try and save her life. That is hard to fully explain to a 5 year old, but I think she gets more than we give her credit for. She is a smart girl. <br />
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We will go to clinic for our weekly appointments and we will check labs again. They say that her labs are looking great so far and even better than average at this point. That is great to hear, but I am not sure that I will ever rest easy again. Again, that is no way to live so maybe once we get to Day 100 and know that she is 100% donor and then I can feel a little better. She will receive 4 more Lumbar Punctures with intrathecal chemo (which is routine) over the next 8 weeks. I really really really wish that they would let us return to STG a little sooner than 100 days. This living apart thing is not very fun at all. It seems very rare that just the 6 of us are under one roof. I miss that. I miss being a family. I know the time will come, but I still miss it and yearn for that day. <br />
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We are super grateful for the people in this world. The amazing family and friends. The amazing strangers that are so willing to give. There is NO way that any of this would be possible. Especially the days when I have a bad attitude and pity our lives. It's so lame that I get that way, but those amazing people always change that around in no time at all. <br />
Taleah is lucky to have so many that love her and support/pray for her. <br />
We always talk about that day that we can give back and help others. <br />
That will be the day! Can't wait!<br />
(my dumb computer won't let me upload pictures... next time because I have some good ones)<br />
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com0tag:blogger.com,1999:blog-6103435633500701144.post-26806158166860816562014-07-25T17:21:00.005-07:002014-07-25T17:21:40.690-07:00Adjusting- up to day 39 post transplant<div class="separator" style="clear: both; text-align: center;">
I guess you could say I am a homebody. I've never loved vacationing too long with kids because they don't sleep as well, we are out of the "norm" and it is exhausting. Ironic because that is what we are doing and have been doing since March. I love my routine, I love STG and I love being around people that I love and feel comfortable with. This is all pushing me past my limit and challenging me in so many ways. I am learning to make the best of our situation and "be happy" with what I have been given. People keep saying that home is where you make it. Oh I am trying. To say that I am happy all of the time would be a lie. I wish I could say that I am doing everything I can and am super happy but I don't and am not. There are times that I feel sorry for myself, there are times that I cry watching Taleah suffer, my anxiety is through the roof (I prob need meds), Taleah struggling with pills and seeing her throw up over and over, being without Scott and the kids crying because they miss their dad and the stress of it all... it gets the best of me sometimes. Luckily, we have the best support system ever! They make it possible, they lift us up and pick me up over and over again. I guess I just want to document the realness of this all. It totally sucks and is super hard, but we are learning and growing. Taleah is seriously a rockstar and pushing through and getting stronger, Makes me proud. </div>
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Being with all of my kiddos makes me happy and keeps me going. It is totally exhausting and kicking my trash, but is worth it to be under the same roof. I had a day and a half by myself with no help and I was up for the challenge, It felt good that I did it and survived (it sounds so dumb that I was able to care for my 4 children by myself...slightly pathetic but an accomplishment). </div>
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We aren't able to do a lot, but we can spend time on iPads, play games, play on the grass, have dance parties and craft. </div>
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We have had weekly clinic appointments and labs are still looking good. Very grateful for that and glad that it appears that her bone marrow is working and growing.</div>
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Unfortunately, Taleah caught the cold that has been going through our family. She started with a runny nose and a dry cough. We did a nose swab for a viral panel at clinic and tested positive for Rhinovirus (common cold) but they said to keep a close eye on her. She had a temp that had been hovering around 99-99.5 for 2 days. I had a feeling that a fever was coming. She ended up slightly fevering so I had to call and give the information, and that resulted in an automatic admit for at least 2 days.</div>
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Just when we were getting cozy at home and adjusting to a new routine... bam! Freakin cancer. It does that. It ruins all plans, catches you off gaurd and kicks ya in the gut. Poor girl. She was loving her life outside of the hospital and back we go. However, we were bummed at first but then we walked in and it felt like home. Weird right?? I was a little confused that I felt that way, but I did and thought that we better embrace it. Taleah is a great example of that. I seriously keep thinking that I am not cut out for this and then I look at her it reminds me that we can do this. I know that this is not my journey and I am not suffering half as much as she is, but it really does have an impact on all of us. She is doing the hard parts, she is enduring all of the pain, and she is rocking it. I mean she struggles with the pills and we battle it for about 20-45 min every day (twice a day) and she has moments where she feels like crap but she is making the best of it. I am a proud mommy and learning from her every day. </div>
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We are really hoping that the fever is a result of the cold and that we can get out of here at 48 hours. We are where we need to be to keep her safe... just in case. It feels alright to be at our second home away from home. </div>
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We can do hard things (my attempt at a pump me up, positive saying, positive thinking... I think it is working)!</div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com1tag:blogger.com,1999:blog-6103435633500701144.post-15528409037287322282014-07-20T22:03:00.001-07:002014-07-20T22:03:22.294-07:00The last little bit... (Day 23-34)<div class="separator" style="clear: both; text-align: center;">
Needless to say... things have been a bit crazy. </div>
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The week after her ANC hit 500 was an emotional rollercoaster. Her bone marrow seemed to be working but her ANC was not cooperating. Everything else pointed to the fact that her ANC would be well over 500 but it was not showing that. Taleah still felt decent part of the day and pretty crappy too. She still threw up a couple of times a day. She LOVED getting out and socializing with everyone. </div>
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We even had playdates with some other cancer kids. A late night meeting to "bling" their masks. </div>
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I was still a bit of a mess because everyone was convinced that day 21 was going to be engraftment day. I am a planner so when it didn't go as everyone thought... I was a disaster. </div>
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Because they thought it was happening... we started lowering her morphine dose, taking pills orally and all of the steps to be released from the hospital.</div>
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Engraftment day ended up being day 25. Yay! We were so happy. We had pretty much completed all of the steps to be released so they let us go on her "engraftment day". Apparently, we did things a little backwards. Regardless, we were busting out!</div>
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Taleah was able to ring the bell before we left. Everyone was cheering and sang a song. The second she started walking to the bell, I could barely hold it together. It was so emotional. They told her to ring the bell once they were done singing the song, but she rang the bell to the song. It was awesome!</div>
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We had plans to move to a basement apartment in Highland. Some things happened and it fell through the night before we were being discharged. I was devastated and stressed. The planner in me was upset that my plan had been changed yet again. However, it was because of something personal and serious so I was understanding.</div>
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Now we were on the hunt for something quick... and I felt "homeless".</div>
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Luckily, we have some awesome friends that we have been staying with for the last 3 months. They graciously offered their place until we found something else. We were totally packed up and living out of boxes but at least I felt like we had a home for a minute. We absolutely adore their family and know that we will never be able to repay them. Pretty awesome peeps if ya ask me.</div>
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We have an awesome support group and social media was a huge help in our search for a temporary home. A lot of really great people pulled together and found us something that has turned out to be great. I am constantly in awe of the gracious people in this world. It feels good to have a "home" for the next couple of months. </div>
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Let's just say that I was a little nervous to leave the hospital. I would be required to be a mom, nurse, caretaker, cleaner, ect. Kind of a lot. Leaving the hospital was bittersweet because we had lived there for so long and the nurses took such great care of her! The knew it all, did it all and then I was all of a sudden responsible. Talk about pressure. </div>
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The meds alone are a giant responsibility. I spent about 2 hours on our first night home getting everything ready and prepping meds for the week. She also went home on TPN because she wasn't eating yet so that added another thing to be responsible for.</div>
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We had to keep the babies separated from Taleah for a little bit longer due to their constant runny nose. I hated the fact that we still couldn't be a family. We had a family reunion that was very accommodating for Taleah and what she could and couldn't do. She wanted to go but felt like crap the entire time. There were a few good moments that made it worth it, but also broke my heart at the same time because she couldn't be like all of the other kids. Sadly enough, she didn't even care.</div>
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She has been having more hours of feeling pretty good every day. There have been evenings that she has wanted to ride a tricycle and walk around the yard with the kids. She has been wanting to sit up and craft, play games and paint nails. This is huge. It doesn't last all day, but some is better than nothing. </div>
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Taleah does a lot of hanging out. I think this is because of the way she has grown up, being surrounded by adults and teenagers because she hasn't been able to play with kids. She has come to adore Nathan and Sadie. She would always sneak upstairs to chat with Sadie about who knows what. Again, this family has been a blessing in more ways than one. They have been more than a house to live in. They were a huge part of Taleah's recovery.</div>
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I am enjoying the fact that she is wanting to do stuff and be a part of things (some of the time). </div>
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She still throws up at least once a day, she waddles a little bit, has a hard time smelling foods and is hardly eating at all. </div>
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It feels so good to be out of the hospital. It feels so good to have my littles under one roof, but it is SO exhausting. I feel like I am running low but I know that I can't run out. It is not an option. I am independent so it has been very difficult to accept endless help from everyone. I so badly want things to be "normal" again but I know that will come in time. I just want to be on my own, be my own mom and be able to take care of my kids by myself. I know that it will be hard. I know that it is much easier with extra hands around, but it is something that I am longing for. I am not saying that I do not appreciate the help. I know that it is a huge sacrifice for everyone that is taking time away from their lives to come up here and help me. I am forever grateful! I am not even sure how to explain what I am feeling. </div>
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As far as the bone marrow transplant goes... we will continue to do weekly visits with lots of blood work. It is looking like it is working but we really won't know until we do the bone marrow aspiration around day 100. That will be able to tell us how much of her marrow is her donor (which we hope is 100%) but it doesn't always work that quickly or efficiently. Right now we are trying to keep the meds just right, keep her healthy and wait. We will keep waiting for something that is essentially out of our control. I can give the meds and do my best to keep her healthy and build her strength, but that's it. That is all I can do. The rest is not up to me. I guess I am a control freak so it is hard for me. Patience. Still trying to master that one. </div>
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I would say that she is doing pretty darn good. She is so tough and pushes through when I know I would give up. I am sort of a mess but trying to get it together.</div>
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Organization and routine are going to get me through the next few months. </div>
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I need to remember.. to Rely on Miracles. </div>
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<br />Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com3tag:blogger.com,1999:blog-6103435633500701144.post-58835883731199645582014-07-08T12:11:00.003-07:002014-07-08T12:22:57.243-07:00Day 22- minor setback<div class="separator" style="clear: both; text-align: center;">
The past couple of days have been a little rough. She has struggled with nausea, diarrhea and pain. We have been slowly lowering the pain pump and taking out nausea meds. She has also started taking a few things orally. Watching her suffer some more is still heartbreaking. It doesn't get easier. </div>
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The plan was to start shots that help boost the immune system by day 21 if she wasn't an ANC of 500. I was so excited when we woke up and received the news that she was 500. YAY!! They would consider it engraftment (accepting Tait's marrow and building an immune system) day as long as the following day was 500 as well. Everyone was so excited! </div>
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She was allowed to leave the room for the first time in 24 days. She was so excited to ride the bike and actually felt good enough to do it. She was going pretty strong for 45 minutes. </div>
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She was excited to give a matching elephant to a little friend a few doors down. They are close in age and I think she was just excited to see another kid. Made me happy. </div>
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We went to bed really hoping that the next day would bring good numbers. She even prayed that she would stop throwing up and have a good ANC. It made me so happy to hear her pray for that but also a little nervous because of the what ifs. I think she is excited to be discharged and be a little normal. </div>
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It is also difficult and I have mixed emotions about the fact that my other kids are sick. Runny nose, cough, ect. It sounds like no big deal but it is a HUGE deal for Taleah. I want to be a family so bad but I have to try and be level headed and do what is best for all of us. </div>
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I wasn't thrilled when they came in and said her ANC and WBC had dropped. The ANC is 400 and it needed to be 500!!! Dang! However, the platelets had risen on their own and the monocytes had stayed the same (I wouldn't know what any of this meant if I wasn't a cancer mom). It is good that everything didn't drop but I was crushed. I wanted everything to keep going in the right direction. She is still having more diarrhea than they would like. Something we will be watching for is Graft Vs Host Disease (GVHD). I really hope that is not the case, but we will just wait and see. </div>
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If her ANC is 400 again tomorrow, they will most likely do the shots to boost the immune system. I hear it is fairly common but I just wanted her to do it on her own SO bad. </div>
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This is all a reminder that this is all out of my hands. It is so hard to watch her suffer. It is so hard when things don't go the way you have planned. It is tough to miss my other kiddos and not be there for them when they are sick. Ugh. Feeling a little discouraged and I am sick of her suffering. Again, it is out of my hands and I need to accept it and have faith. Easier said than done BUT it has gotten us this far so I need to trust. </div>
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Please keep her in your prayers. </div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com1tag:blogger.com,1999:blog-6103435633500701144.post-66382025368983392192014-07-04T22:49:00.001-07:002014-07-04T22:49:23.647-07:00Day +14 to Day +18<div class="separator" style="clear: both; text-align: center;">
It has been quite the rollercoaster. I really thought that Taleah would engraft by day 15 or 16. I feel like the doctors thought so too… she had such a high cell dose and it was from an infant… boy have we proved them wrong. </div>
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Tait and Sloan have showed their support this week. We were hoping it would bring good luck. </div>
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She has been up and down and it has been painful to watch and be a part of. She has some serious moods and I am really struggling with it. She has some happy moments but she treats most people like crap. I try not to let her get away with a lot but it is really hard. I am not sure where to draw the line. </div>
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She had a WBC of 0.1 from day 13-15. It went up to 0.2 on Day 16 and then stayed there on Day 17. </div>
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Day 18 showed a WBC of 0.5 and an ANC of 100. That is a big improvement and I am hoping that it will continue to rise. They said things can fluctuate for a few days but I am really praying that we are on the upward climb. We are slowly trying to get her to drink water and start slowly prepping for oral meds. Her morphine pump was also lowered. She will have to be on all oral meds, be eating and drinking a little and off the pain pump before we can go home. </div>
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Scott was able to come up for the part of the week and weekend. We were able to spend part of the holiday as a "normal" family (even though it felt wrong without Taleah). I hadn't been with Slade for 2 1/2 weeks and it was so great to be able to take him to do something fun. It was a fun filled day!</div>
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I hated going there without her but needed Slade to feel normal. We continued on with the night time festivities and had a lot of fun. But again, it just felt off without her. I couldn't help but worry and think about her most of the time. Even though she hasn't been liking me for the past couple of days, I still missed her. She spent the day with aunt grammy and played and played. She spent the evening with Tabes and crafted away. I felt better leaving her with people that she loves and adores. </div>
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I think she is taking her frustrations out on me and that is ok. I am pretty sure she is over all of this and just wants to feel noromal. I don't blame her but I know we have a long way to go.</div>
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It is so hard to explain the emotions that you experience during a trial like this. It is hard to watch life go on as normal for everyone else. I love seeing others having a good time, but sometimes it makes me miss the life we used to have. However, I hate when people don't want to talk to me about the great things happening in their lives because they don't want to make me feel bad. I know all of the other cancer moms understad how I feel. It's hard to put into words. Mostly, you just want to feel as normal as possible amongst all that is happening. And it is difficult for someone to be "normal" to us for fear of saying something wrong when we are in such a sensitve state. I guess it basically goes back to wanting things to be how they used to be… and that will never happen. This entire cancer journey has changed me, it has changed us and we will be forever a part of this cancer world. We have learned so much and grown a lot and I know there are things that I would have never learned any other way. It's a crazy ride, but I am grateful for the people that are taking it with us. We wouldn't survive any other way!</div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com0tag:blogger.com,1999:blog-6103435633500701144.post-44959260123986887382014-06-29T23:23:00.000-07:002014-06-29T23:23:00.664-07:00Day +12-+13<div class="separator" style="clear: both; text-align: center;">
Suzie (the doll) has had many procedures done. When Taleah feels well enough, it is the one thing that she has wanted to do. It is interesting to hear her talk and watch her "help Suzie". It gives me a little insight on how she feels. </div>
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She has been sleeping in until 11 or 12. She usually takes a small nap around 7 and then we are up until 11:30-12 every night. It seems to be when she feels the best.. after the bath and I feel bad making her sleep when she feels good enough to play. Ha. Totally against my rules!! I will say that I enjoy our little talks, prayers and songs before bed. Her prayers are very sweet and sincere and often times make me want to cry. I am usually up 5-6 time throughout the night, silencing alarms, changing her pull-ups (we have regressed in that area) and calling in the nurses in. Now that she is on oxygen, I am constantly making sure it is right by here so she doesn't drop into the 80's again. The vitals, weigh in and rounds with docs start at about 7am, but she usually sleeps through it all. It is slightly draining but worth it. You would think that I would get bored in the room all day, but somehow it is extremely busy and exhausting. </div>
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She has been throwing up a lot over the last 2 days and it may have to do with the fact that we eliminated Ativan so I think we will be adding that back in. I just hate the way it makes her act but I think that will be better than throwing up a lot. The oxygen is being used most of the day, we are trying the Lasix twice a day to help with high blood pressure and swelling. The suction has been extremely helpful with the thick mucous in her throat and she has been swallowing the pill much easier . </div>
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Her WBC is still 0.1. We have made no progress on the labs that are drawn every morning. It is staying the same which is better than it getting worse. I was hoping that we would have a faster than normal engraftment, but it looks like we might be lucky to have the average which is day +19. And then there are a bunch of other things to worry and wait for. One thing at a time, right?!</div>
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I was able to attend church at PCMC today. Let's be sure and mention that it was 30 minutes long and full of good stuff! (my kind of church.. is that bad to say??... oh and I went in my sweats) It was hard to hold it together (surprise). The spirit there was very strong. I wish I could say that I got a feeling that everything is going to be perfect and painless, but I didn't. BUT I did feel a sense of peace and love. I felt God's love for every person there. It is very hard to describe the different emotions I felt but I do know that I felt an overwhelming amount of love. </div>
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I also attended my nephew's baptism. It was great to be surrounded by family, but I couldn't help but long for my little family to be together again. I wished that Taleah could have been there singing the musical number with her cousins, and wished that Slade could play with his buddy Jett and wished that I didn't have to keep the babies away from the little kids. The night was not about me and my family or what I was wishing for... and there were so many great things that happened there tonight. I am just an emotional rollercoaster and those were all things I felt while there. </div>
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On the bright side, it is 12:30am and Taleah is happy and acting like herself!! We got to facetime Slade and the two of them were acting like they usually do (saying, "goodnight corndog" and coming up with one million things to say to each other). I was able to spend extra time with the babies and talk to Scott on the phone while I was driving (which is more than I usually can when I am here). Focusing on the positive is all we can do at this point. It is not always the easiest but probably the healthiest thing to do. </div>
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Hoping and praying that things will move along quickly and Taleah can get healthy. I am aching for a "normal life" and a happy one for Taleah. She continues to ask about all of the things she can do when she is better. Disneyland is one of them. Not to wish away time, but I am ready for it to be the fall/winter and know that Taleah is 100% donor (Tait). I am getting ahead of myself. </div>
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Patience is key. Rely on Miracles. </div>
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<br />Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com1tag:blogger.com,1999:blog-6103435633500701144.post-54281336788945661622014-06-27T19:31:00.002-07:002014-06-27T19:38:19.965-07:00Day +8 to +11<div class="separator" style="clear: both; text-align: center;">
Day 8 was a hard one. She had a hard time keeping anything down. We couldn't figure out how to keep her comfortable. I think part of the problem was the fact that she was in a lot of pain and her body was reacting by throwing up. It was so sad. She was crafting with Susan and would stop to throw up and then continue on. She wanted to play so bad but it was a challenge. It's really too bad that she doesn't like to watch movies because she could easily do that in bed without exerting too much energy. She slept almost the entire day because we added in Ativan for the nausea. However, due to the amount of sleep during the day we were up until 1:00am. I didn't want to make her go to bed because she was having such a "good time".</div>
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Day 9 was a lot better. The energy was much better but she was quite emotional. It is hard for me to discipline the emotion she is showing. It is quite a rollercoaster for her and I feel bad for the people she is taking it out on. I am trying to be patient but I think the lack of sleep is getting the best of me. Cami was also able to stop by for a minute and Taleah loved it. Even though she is not herself, she enjoyed it more than most people understand. </div>
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Day 10 was a play date with Cami. Taleah was very excited! Every time she woke up in the middle of the night, she continued to ask me how much longer until she could see Cami. I think the fact that Cami understands and has been through it, means a lot to Taleah. I don't fully understand so I think it is very therapeutic for her to have someone to relate to. Even at 5 years old. </div>
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Taleah has a doll that she is able to do procedures on. She decided that she needed a bone marrow transplant as well and she wanted to wait for Cami to help her. </div>
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Despite the way she felt, she was still able to have a good time and didn't want them to leave. Cami was a great sport because she is 3 years older but is still able to make Taleah feel special. We played some tricks, painted and had some fun. </div>
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Cami's (and Chelsea) compassion and kindness means more than she will ever know. </div>
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Slade was sick the week of transplant. I haven't seen him for SO long and I miss him like crazy. As if only seeing him for an hour day was bad enough... now I haven't seen him at all for 12 days. He is being well taken care of and a little spoiled. I have to keep him away for a bit longer. And even though it kills me, it is better to keep him from the twins and Taleah to prevent horrible things from happening. </div>
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Day 11 has been rough. She slept until 12, woke up for a bit and experienced some pain. She slept again from 1:30-3:30. We have put oxygen by her because she is having a hard time keeping her O2 saturation up. I guess this is expected but it is hard to watch her sleep and need assistance to breathe adequately. She is SO swollen and puffy. Her eyelashes have fallen out this time and she just looks so sick. I kept hearing that 11 days out was hard and I can now confirm that is totally is. She has slept most of the day (fit in time to do crafts with Susan) and complained of feeling crappy. One of her lines has a clot and we are working to get rid of that to prevent further complications. Her temp is also reading a little higher than usual, but not a fever. </div>
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It has been wonderful to have family care for the twins so that I can continue to nurse them. It has also been wonderful for Taleah. She usually lights up when they come in the room. It's beneficial for all of us. I know it is a major sacrifice for our families and we appreciate it SO much. I feel like I can kind of be a mom to these munchkins.</div>
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These babies love her and she loves them. I am sure some of these tender moments are some that we will cherish forever. </div>
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Her WBC went up to 0.2 on Day 10 and then back down to 0.1 on Day 11. We were hoping that it was a good sign but now I am not sure. I wait for those labs every morning and pray that something is happening. Something good.</div>
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We will keep moving forward and hope for some miracles. She is working so hard and I am hoping that it will pay off.</div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com0tag:blogger.com,1999:blog-6103435633500701144.post-80973491266067968662014-06-23T23:09:00.002-07:002014-06-23T23:09:31.556-07:00Day +5 to +7<div class="separator" style="clear: both; text-align: center;">
I had been feeling "sorry" for myself that I couldn't be with all of my kiddos. Taleah seemed to be getting worse and I figured I would be at this hospital for the next month or so without seeing the rest of my family. Of course I want to be here for Taleah, but I need my other kids too. Constant battle right?! </div>
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Treena saved the day by coming to the hospital ALL day on Saturday while I attended a wedding. Taleah actually didn't want me to come back. She cried when I walked in the door. The fact that she was playing with Treena all day and not laying in bed and staring into space made me so happy. </div>
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And I got to spend time with these 2 babes all day. If only Slade had been in SLC... but I'll take what I can get. </div>
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Day +6 and +7 were up and down. She has suction available because it is difficult to swallow her own spit. Swallowing the 1 pill morning and night is torture. She usually ends up grabbing her ears (referred pain) and then throwing up thick secretions/blood (TMI ?). She is hooked up to a lot of pumps and meds are CONSTANTLY running. The pain pump has helped to stay on top of the pain but it seems to have its own side effects. Her mood swings are definitely there and at times I have had to get after her for a poor attitude. It is hard because it is way crappy what she is going through, but I have to be careful what I let her get away with. It is fairly difficult to know what is the right thing to do. I basically HATE when she treats other people like crap, but then again she has to feel HORRIBLE! Ugh this mom business is hard. Especially the cancer mom business. Can you tell that this is a struggle for me??</div>
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Susan (art specialist) has been more than a lifesaver for Taleah. Well, for all of us actually. She was the first person to make Taleah smile since the relapse and continues to make her smile. They plan days to wear matching camo pants, make matching necklaces, and just have a good time together. She will spend over an hour with Taleah and it really lifts her spirits. I don't think she knows what an impact she has had on us throughout this relapse. </div>
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Taleah will be happy with me for a bit and then the next second she is angry with me for something. It is really hard to keep her happy and I am not sure if she is just taking out her frustrations on me, but all I want to do is be there for her. I have to make her do the hard things, but I also try and do a lot of things to make her more comfortable and happy while she is here. I start to get frustrated and a little short with her and then I feel bad about it. Again, another balance that I am struggling with. </div>
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Taleah's labs look like they are supposed to. She has no immune system and switching off between needing blood and platelet transfusions. I am pretty sure that her entire inside lining is covered with sores. Her lips are also starting to peel and crack. She is retaining some extra fluid so she is receiving a medication to help release some of the fluid. However, she is still pretty puffy and swollen. I keep hearing that it is going to continue to get worse. Talk about anxiety. Only time will tell. </div>
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We were facetimeing (is that a word?) Slade and Scott tonight and I was reminded of the love I have for the both of them. When Slade started crying and asked me when I was coming home, it was all I could do to keep from breaking down. I want to be home so bad. I wish that this was all a dream and had never happened. I can't imagine how difficult it must be for him to understand why I am never there for him anymore. We are living out of suitcases, in a hospital, at someone else's house and he is being juggled with many different people (that love him). I had to remind him that I would see him in SLC soon and he just kept asking me why. I need to keep reminding myself that we are learning from this. We are growing and something good has got to come of it. </div>
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I don't want this blog to be only sad and negative. BUT I do want it to be real. This is childhood cancer and we are not the only ones suffering from it. There are so many kids/families and watching them all battle is almost more than I can handle. I can't wait until I am in a place where I can give back, bring awareness and mostly help those that need it. </div>
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Thank you for all of the support. I am constantly receiving texts, emails and phone calls and it really means a lot. </div>
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It makes the battle that much easier. </div>
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Thank you!</div>
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I have learned a lot</div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com3tag:blogger.com,1999:blog-6103435633500701144.post-74849930260946282702014-06-21T00:02:00.001-07:002014-06-21T00:10:09.101-07:00Transplant<div class="separator" style="clear: both; text-align: center;">
The days leading up to the transplant were quite eventful. Taleah felt great and only wanted to party. I kept thinking that this might possibly not be too bad...</div>
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We had dance parties, visits from princesses, tricks on nurses, photoshoots and so much more. I think she was actually happy to be there. The only downside was her "diet". She has a very restricted diet and the food has to be prepared a certain way. </div>
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The night before the transplant was extremely nerve wracking. I almost made myself sick. I kept Tait at the hospital with me because I had to check in at 5:45am. I just wanted everything to go right. And then your mind wanders... what if the person taking Tait's marrow gets in a car accident, what if the surgeon messes up, what if there isn't enough marrow... so many things.</div>
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I kept thinking that Tait had no idea what was coming, but I am pretty sure she did. She was so good and handled all of the pre-op stuff well. When the anesthesiologist took her back to the OR, she went happily and I wanted to cry. Such a big moment was about to happen and it needed to go smoothly.</div>
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The waiting was torture. It seemed like forever. </div>
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She recovered pretty well but was pretty sad. She wouldn't smile, nurse and pretty much slept. </div>
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Tait recovered for about 2 hours and then they let us go back upstairs while they prepared the bone marrow for the transplant. It was pretty amazing that the second we walked into the room, Tait looked right at Taleah and smiled. It was almost like she was saying, "I did it!" They laid in the pack and play together and the moment that I captured on camera was one that I will cherish forever. They looked right at each other, Tait grabbed Taleah's face and they just hugged. It was beyond special.</div>
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Tait slept most of the day. We waited for the estimated time of arrival for that special gold. Taleah requested that her face/head be painted. Susan (Taleah absolutely adores her) saved the day and worked really hard to make it happen and it looked great!!</div>
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The crew showed up. We sang a song and celebrated this wonderful miracle. She was a little overwhelmed but tried to soak it all in. </div>
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We had preliminary results on the bone marrow. They ended up taking the max amount from Tait which was 150 mls of bone marrow. They want the CD-34 cells to be in a range of 2-5 million to have successful results (it would take a day to get the exact count). They were thinking that Tait would be about 2 million and anything over 1 million would not require the use of the cord. It was a little difficult because of the different blood type and it took a while to remove as many red cells as possible without removing too many white cells that she will need. The BMT team was worried about having too many red cells for the transplant so they decided to divide it into 2 bags and pre-medicate before each. Apparently, that is not the norm so it freaked me out a little. It took about 7 hours to infuse it all through her line and had to be done SO carefully!! </div>
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At the end of the first bag, Dr. Pulsipher came in and informed us that the actual CD-34 cells for Tait's marrow was 10.6 million! We were beyond thrilled with that rich marrow. Way to go Tait!</div>
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Taleah still felt pretty great and even so the next morning. The fam was together for a quick minute and probably will not be for quite some time.</div>
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Now we wait. We endure things that I hear horror stories about. We wait for her body to accept Tait's marrow. It could take 15-40 days... no one knows. We will know when her ANC reaches 500 for 2 consecutive days. She has no immune system and is at risk to catch pretty much anything. I have limited visitors and trying to be extra clean. </div>
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Day 0 is the transplant and for Day 1 & 2 she has felt pretty good. Still wanting to play, joke with the nurses and have a great time. I loved every minute of it!!</div>
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<strong><span style="font-size: large;">Day 3 & 4</span></strong></div>
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It is getting harder. She is struggling. She has mouth sores, in her throat and the lining of her insides. It seems extremely painful. She has stopped eating and drinking so she is being fed intravenously. She doesn't even want to play in her rainbow playroom. We have upped the pain meds and trying to stay on top of the nausea. The throwing up was a little out of hand on day 3 so I think we have a system figured out to help that issue. I sat and caught her throw up and watched her struggle to catch a breath and I wanted to cry. It seems like she kind of shuts down when she starts feeling crappy. She won't look at me or really even talk to me. She just stares into space and cries or whines. It makes me wonder why she has to go through this. I wish so bad that I could take it all away. When she is doubled over in pain, I want to hold her and switch places. It is really hard to watch your child suffer (as many people experience in so many other ways). </div>
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All while Taleah is struggling, Tait was still sore and needing some extra attention. Also, I sent Slade back to STG and he ended up fevering as well. It more than broke my heart that I could not be there for Taleah, Tait and Slade at the same time. I HATED that I couldn't be a mommy to all of them. I hated that Slade possibly didn't even want me because he has gotten use to the fact that mommy won't be there for him. It sucks pretty bad when you feel like you can't do your job and you feel like your 3 yr old is slowly slipping away from you.</div>
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It's a funny thing as a mom of young children... it's like you can never have a break and alone time sounds like heaven... yet I want them to need me because I need them. </div>
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I have also met a lot of moms that are pretty amazing. They all have their own story and it really is heart warming and heart wrenching all at the same time. I can't begin to explain the strength I gain from listening to them as well as the anguish I feel for them. This cancer world is something else. </div>
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I keep hearing that things will get worse before they get better. Makes me physically sick to think about it. However, it is expected and we will do our best to keep her comfortable. We will get through this. She is so tough and such a fighter. Praying for a speedy engraftment and very few bumps along the way. </div>
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*Rely on Miracles*</div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com5tag:blogger.com,1999:blog-6103435633500701144.post-54181912986119364422014-06-13T11:13:00.002-07:002014-06-13T11:13:53.324-07:00Pre-Transplant<div class="separator" style="clear: both; text-align: center;">
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We started the week with meetings. Lots of meetings. So naturally we played Doc Mcstuffins at home. Taleah was a great doctor. </div>
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The broviac surgery went pretty good. It was heartbreaking sending her off. She was terrified and crying. Of course I cried as well. She recovered fairly quickly and had to head home to prep for the cranial radiation the following 3 days. </div>
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She had a little panic attack before the first treatment. It wasn't on perfectly so it was really tight and it freaked her out. It took some reasoning and she pulled it together and rocked it!</div>
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Scott brought the boys up and we decided to have a few days in SLC as a family and do as many fun things as we could without getting too many germs. We went to the Hogle Zoo and the kids loved it.</div>
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With the setback, it made it possible for us to attend the Millie Princess race in STG for Taleah. I was so excited that we were going to be there and see the hard work, love and support that was shown to our family. Angel Flight was kind of enough to fly the kids and I home. Scott had a few work things to do and drove the van home. It was much quicker and great to get home for about 2 days. Oh I love STG. </div>
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I can't even put into words the love we felt being at the race. It was amazing. We loved every minute of it!! Taleah thought it was pretty great and I am so glad that she was able to be a part of it. I wish there was a way to thank every single person.</div>
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I packed the kids for a good 4 months. It was giving me some major anxiety. I have always been someone who likes short vacations because I miss my bed, I miss the kids being on a schedule and I just miss my house. So…. this is a big adjustment and something that will take some adjusting. </div>
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Taleah had 4 days of total body radiation twice a day. I had heard horrible things and I was very nervous. It was busy, exhausting and she did pretty well. She had one day where she threw up a lot no matter what meds I had given her. It broke my heart (Seems to be happening a lot). Overall, it wasn't horrible (minus the machine breaking and the other one overheating). </div>
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(Tait doensn't cuddle with anyone… except Taleah)</div>
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I must say that I am a nervous wreck. Taleah has been handling things so well and I can't seem to get it together. I am stressed about the transplant, Tait going into surgery, Taleah's body accepting Tait's marrow, the side effects, my twins forgetting me, not being able to put them to sleep, missing their milestones, Slade acting out, missing my other kids. </div>
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It is really starting to take a toll on Slade in so many ways. He needs the interaction with kids and is missing out. I wanted to cuddle with Slade before bed the last night before being admitted to the hospital… and after a few minutes he told me he was done cuddling with me and wanted Grammy. Exaclty what I have been afriad of…. my kids not wanting me anymore and not even needing me. I am glad that they are being cared for and loved so much, but it is my job and I hate that I can't do it. Scott was all alone on his birthday and we won't get to see him a lot for the next few months and that is hard. Cancer is taking so much from Taleah, but also my entire family. I am not trying to get sympathy but I want to be real and document this entire process. The good and the bad. </div>
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We were told to check in on Friday at 8am. She has 2 days of high dose chemo and then Sunday will be her day of rest. Monday morning will be the transplant. Tait will go into the OR around 7am, they will extract bone marrow from her posterior ilac crests and then send to the lab to process because of the blood type difference. It will take appx 4-6 hours to process and get ready for Taleahs body. We are thinking afternoon will be the transplant which will consist of the marrow hanging and then infusing like a bag of blood. The days to follow will be extremely important and exhausting. She probably won't feel well, I will be the germ police and she will be monitored VERY closely. They say that the average person engrafts between day 15-25. I hope it is fast because I keep hearing that the days leading up to engraftment are pretty awful. </div>
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She was acutally pretty excited to come here. I am hoping we get moved to a bigger room. She keeps saying that she just wants to get this over with! I am not sure that she understands what it entails but I don't want to freak her out.</div>
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I need to look to her for strength. Mama needs to pull it together! These next few months are going to be long, hard and exhausting but hopefully WORTH IT! </div>
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I just need to remember our motto….</div>
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Rely on Miracles</div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com6tag:blogger.com,1999:blog-6103435633500701144.post-37179635636362565932014-06-01T10:16:00.001-07:002014-06-01T10:16:21.256-07:00Setback<div class="separator" style="clear: both; text-align: center;">
I wish I could accept that fact that cancer never goes as planned. We came home to have our "break". We planned a few fun things that wouldn't put us around many people. Lunch on the grass, carousel ride (after bleaching the horse),blood transfusion, platelet transfusion, and horse rides at the Wades. She was loving it and we were just happy to be home as a family. </div>
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She started with the mouth sores again.. so eating wasn't her favorite thing to do. It didn't stop us from having fun though. </div>
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(we were waiting for the pink cowboy boots... and Grammy came to the rescue)</div>
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Unfortunately, she came down with a fever on Thur night. We rushed to the hospital and they started a series of tests. Her ANC was 0 and she was close to needing more blood. </div>
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It ended up that we stayed from Thur night- Mon evening. It was a long weekend and I think we were all a little bitter that we had to spend our "break" in the hospital. Luckily, we enjoyed the nurses and entertainment and made the best of it. We made more music videos, flipagrams and pretty much anything to keep her happy. </div>
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She wasn't herself for most of it and it broke my heart. I won't lie and say that I wasn't a little bit sad when I would see pics of everyone else "beginning their summer" and we were stuck in the hospital AGAIN. But that is no way to live!</div>
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We eventually figured out that she had C-Diff(again), rhinovirus and Cellulitis in her genital/pelvic area. That was the source of the fever. The cellulitis is extremely painful and she was miserable. </div>
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We needed to be in SLC on Tuesday for the start of many bone marrow transplant appointments. We were released on Monday evening with just enough time to enjoy some time as a family in the backyard. It felt normal for a minute. </div>
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We were sent home on a lot of different antibiotics. I had to put them in my calendar with alarms so I wouldn't forget.</div>
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We left bright and early to begin the long days of appointments. My phone was ringing off the hook from every doctors office, hospital, home health, ect. It was exhausting. </div>
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We are so lucky to be staying with some friends that continually bend over backwards for us. Taleah requested roasting marshmallows and of course they delivered. She was in heaven. </div>
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A combination of the unplanned cranial radiation (due to the leukemia cells found in her CSF), the cellulitis infection and the fever are resulting in the transplant date being moved to June 16. It will all happen on my birthday and I am choosing to believe that it is a good day because it is a start to a new, healthy life. </div>
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The cranial radiation planning session was heartbreaking. They said she is on the border of whether she needs sedation or not. I knew if I talked with her then she would be able to do it. I was on the verge of tears the entire time. She had tears rolling down her face but she held very still. I was so proud. </div>
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We also did the total body radiation planning session and she did great with that as well. As we talked about the side effects, I wanted to crawl in hole. It is all a little overwhelming and a lot to take in. However, she did way better than me and rocked it.</div>
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She also had a bone marrow aspiration and lumbar puncture. The broviac (central line) placement was delayed until the following week. The results from the BMA are KEY to moving forward. I am trying to be positive and believe that they will be great so we can keep going. </div>
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Her neuropsych test was awesome as well. She spent almost 3 hours testing and talking with Dr. Paul. They were amazed at her social skills and ability to communicate with adults. Sadly, I think she does better with adults than children and I attribute that to cancer. Her reading and math tested to be about the end of kindergarten level (That made me feel a little better). </div>
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We had to fit in a little Treena time as well. She never disappoints. Dinner and a special ball.... the dresses..the dates... the dancing... it was magical.</div>
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I am so proud of her. I feel like I am lacking energy and a positive attitude and then I watch/listen to her and remind myself that I need to step it up. What a great example of courage and faith. </div>
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We knew we got to come home for the weekend and we were SO excited. We wanted to do things that made us feel a little normal. Swimming wasn't an option, but she could put her toes in while sitting in the shade. We made compromises and had some fun. We felt kind of "normal".</div>
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The anxiety is creeping up as the transplant date is getting closer. As I signed consent for Tait's portion, I seriously wanted to throw up. It is becoming more real. It is an amazing thing and I am SO grateful that we have a sibling match but I am nervous for my baby. She is so little and she is my baby. We also discovered that they have different blood types and Taleah cannot receive Tait's blood type so it will make the transplant a little more difficult, but doable. They will have the cord blood ready too. It's a lot but we are ready. We are ready to move forward. I keep looking at the pictures that I have of the two girls, and I am reminded of the special bond they have. I know that Tait understands the bigger picture and she willingly signed up for this in Heaven. What a special bond. </div>
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There is a lot to come. A lot more prep before the actual day. Please pray for my babies. </div>
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Rely on miracles.</div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com4tag:blogger.com,1999:blog-6103435633500701144.post-57278804675194714492014-05-20T21:19:00.000-07:002014-05-20T21:19:01.605-07:00Round 2... Done<div class="separator" style="clear: both; text-align: center;">
We headed back up for the high dose methotrexate portion. We didn't know how long we would be up there. She would have clinic, get an LP and then start a 36 hour infusion of the methotrexate once her urine reached a certain pH level. </div>
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She was so sick going up there. Her stomach was hurting and she was really low energy. We found out that she had C-diff and that was the cause of the extreme pain. She started the antibiotics and started feeling a lot better. They had her on very high amounts of fluid in hopes to protect her bladder. We were going pee at least every 2 hours, if not more. And that was around the clock. It was exhausting! We had to wait until the methotrexate cleared her blood and then we were free to go. I was really hoping it was in time for the wedding. We wanted to be there SO bad. </div>
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I must say that cancer is taking a toll on this cute boy. Slade has endured a lot and it has completely turned his life upside down. He is handling it well, but I can definitely tell a difference. I talked with social work and they have suggested a routine. He needs to know what is expected and not be babied because his sister has cancer. Easier said than done, but I agree. He keeps asking me when cancer will be over and repeatedly says how much he dislikes cancer. I completely agree.</div>
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Taleah cleared the chemo on Thur morning so we were able to leave Thur afternoon. She had a slight fever on Wed night so I wasn't sure that we would be able to come home. Prayers were answered and off we went. She had counts that were decent and given a thumbs up for the wedding. YAY!! We were all SO excited. She wanted to be a part of it so much!</div>
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It felt amazing to be home. It felt amazing to be a part of the wedding. We also got to a part of my nephews baby blessing and best of all.. be home with my kiddos on Mother's Day. However, the mouth sores started coming and Taleah was miserable. She was also in need of a blood transfusion. She felt pretty crappy and it made for an exhausting/emotional Mother's Day. I was so drained by that night, but we had to get ready for our next inpatient stay which was the next day.</div>
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We flew up and my inlaws brought the rest of the kids up on Tuesday evening. This stay was going to be Mon-Fri with 2 chemos every day and an LP on Friday (with the triple dose chemo). I was nervous and she was miserable because she needed blood again. Once she received that blood, she was a new girl. Color came back into her cheeks and she was ready to dance. I wish I would've started donating blood a long time ago. That blood is saving lives.</div>
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We also started getting prepped with info about the bone marrow transplant. That included a few tests. She had an echo, EKG and hearing test. We are doing a bunch of baseline testing to see if/how much damage will be done from the upcoming chemo and radiation. I must say that I started getting a little overwhelmed about the information. Taleah was listening as well and asking a lot of questions. It is going to be hard... so hard. Emotionally and physically exhausting. I am terrified. Anxious to get it done.</div>
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We received a calendar of testing that will be done next week. IF her counts come up enough to do another bone marrow aspiration then we will be on track to have the transplant on June 10. I am praying that things stay on track so we can get this going and done. But we all know that we have no control and this cancer business is on its own agenda. </div>
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Another thing that Taleah was sad about missing was her preschool graduation. They were so sweet to include her and let us facetime to be a part of it. We were waiting for a procedure so it worked out perfectly. I won't lie and say I wasn't emotional... I had tears streaming down my face the entire time. It seemed wrong that we were waiting for another LP while her friends were graduating. Taleah held it together just fine and enjoyed it. I had a little pity party and then got over it. She loves that preschool and everyone in it. Again... grateful for amazing people!</div>
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We were more than thrilled to go home because we knew we would be home for 10 days! Yay. The kids were excited, getting along and anxious to get home. Of course there was a delay on the freeway so it took us 6 hours, but the kids didn't even seem to mind. </div>
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I keep thinking that I want to make her time at home so great, but she isn't feeling well. She is developing mouth sores again and in need of blood. </div>
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Honestly, she is anxious and wants it over with. She keeps reminding of that and also doing a pretty good job of explaining what is to come. I haven't had the heart to tell her how much pain she will be in for this next part. And I don't think I will. I am proud of her and the way she is handling things. She never ceases to amaze me.</div>
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Me on the other hand... I feel like I am a wreck. I can hold it together most times, but I am tired. I am feeling exhausted on so many levels. It is probably a combination of life but I don't have time to fall apart. I don't have time to be weak. This is all happening and my kids need me, my husband needs me and Taleah needs me. </div>
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Cancer is no joke.</div>
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I know that and that is why I am grateful for amazing people in our lives. There have been so many little things that have happened, small acts of service, big acts of service and it makes a giant difference. It gives me hope and "pick me ups" when I need them. I know this is <strong><u>not</u></strong> about me but I feel like I have a big part in it. I am the main person that is supposed to get her through this. I am supposed to be strong, support her and get her to the finish line. I am her mom and it is my job. And I am going to do it the best I can. Balancing life right now is my biggest struggle. I think it's adrenaline at this point, but whatever works and gets us through.</div>
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I know it is hard for Scott because he has to work to provide for us, to keep our insurance and keep his job alive. I know he would want to be her person too, but he is doing what he needs to do right now. Working together to make this work.</div>
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I feel like cancer is taking a lot from our lives, but we are also gaining some things too. It's been a crazy ride, we are learning a lot. It's only going to get "crazier", but we will continue to learn. I am praying for a better attitude and the strength to finish full force. </div>
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Heavenly Father knows us and what we can handle. I need to remember that. </div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com2tag:blogger.com,1999:blog-6103435633500701144.post-49017577875374659112014-05-04T21:52:00.002-07:002014-05-04T21:52:53.546-07:00Results<div class="separator" style="clear: both; text-align: center;">
The dreaded/wanted bone marrow aspiration happened Monday. She had to fast until 2:30 and that was torture. I felt so bad for her. She handled it pretty well. The drive home was long and I am pretty much sick of that drive. The poor girl hates to travel... especially when she isn't feeling well. Breaks my heart.</div>
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We started "Round 2", which includes 5 days of steroids and Vincristine (chemo through her PICC). Oh the steroids... I hate them. I think she hates them too. She is older and understands that they make her ornery, hurt and really hungry. It was a long week. I really wanted to enjoy our week at home. I did enjoy it, but that doesn't mean that it wasn't hard. I wanted to be a normal family and enjoy each other's company. That wasn't an option when the steroids started taking effect. I didn't want to depend on anyone, I didn't want to ask for help, I didn't want to feel incapable or mentally/physically exhausted. But I did. </div>
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Don't get me wrong, she loved being home. Steroids at home are way better than steroids at the hospital. </div>
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She is still loving her new room. She loved having some freedom because she had good counts all week. It was nice to be able to go out with little restrictions and feel "normal".</div>
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Waiting until Thursday for the results was torture. I tried not to focus on it, but I couldn't. When my phone rang, I had the biggest knot in my stomach. I was trying to gauge the "results" by the way my doc sounded on the phone. It felt like 10 minutes before he broke the news, but it was probably more like 3 minutes. He let us know that the bone marrow aspiration showed 0% leukemia cells. Nothing... hallelujah! The overwhelming feeling was more than I could handle. They have decided that we will finish round 2 and then prepare for the bone marrow transplant. I guess that means potentially 4 more weeks and then the transplant process begins. We will also do another bone marrow aspiration at the end of this round to make sure she is still in remission. Wow. I am sure the testing for Tait will begin as well. I am hoping she has gained a little weight so that MAYBE we would be able to get enough marrow from her body. So much to think about.</div>
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Having my babies under one roof, was a feeling that I hope I never forget. Even though it's been extremely difficult because I feel like I can't do it all, there were still some sweet moments that I hope to remember forever. I know the next 5 months..ish will not be this way so I hope to keep those moments dear to my heart. The next little while is going to be a giant struggle and challenge. I hope I can do it... I hope we can do it. We have the greatest support system ever. Seriously. Family, friends, neighbors and strangers that have already done so much for us. It is very humbling and reminds me that there is so much good in this world. </div>
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We are headed up tomorrow for a 3-5 day stay in the hospital (if things go well). It will start out with clinic and an LP (that she has to fast until 2pm for). I am hoping and praying that they do because my brother is getting married and we would love to be a part of it all. We should have the weekend off and then head back up to be checked in for another 5 day stay with an LP at the end. </div>
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Taleah hasn't been feeling well coming off of the steroids. She usually doesn't. But this time she has said that her belly hurts a lot and that she needs to throw up. Well, today she did throw up. She hasn't wanted to sit up at all and has no energy. Her counts don't show that she needs blood yet so I am attributing it to the steroids. Watching her suffer and be in pain is so difficult. I know there is worse to come, but I just really hate cancer. Hate is such a strong word, but I really do HATE cancer. I don't like what it does to these kids, I don't like what it does to families, actually I don't like anything about it. Yes, some really great things have happened because of our "cancer journey" but it is hard to remember those sometimes. Tonight I just want to be mad and sad for little Taleah. It seems so unfair that she can't be a normal kid and have a carefree life. Instead, she is stressed about the bone marrow transplant and what is to come (yet, she really has no idea). It's going to be fine. She is tough. We will get through. Today.. I am just a little mad. </div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com3tag:blogger.com,1999:blog-6103435633500701144.post-27941117914342525352014-05-02T15:30:00.001-07:002014-05-02T15:30:29.598-07:00Millie's Princess Foundation RunIt all started with Miss Millie. We just wanted her family to focus on their fight with childhood cancer… not the financial fall-out from medical and peripheral expenses.<br />
Therefore our sole purpose is to raise millions of dollars to help families who have children just like Millie… royal children who need to know that the fairytale is still alive. Millie battled leukemia for half of her life and during that time she made every effort to make sure those around her knew that she loved them. At 7 yrs old sweet Millie took her last breath and we promised that we would always look to her as our example of service, and bringing hope to her cancer fighting friends. In Millie's honor we present to you the First St. George Millie's Princess Run.
You can read more about Millie and the foundation <a href="http://www.milliesprincessfoundation.org/" target="_blank">here</a><br />
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Millie's Princess Foundation would like to introduce the star of this years St. George run, Princess Taleah Stevenson.<br />
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Taleah was diagnosed with ALL Leukemia at the age of 2. She underwent chemo, and many other treatments at Primary Children's Hospital in Salt Lake City. After two years of treatment she celebrated and looked forward to the life of being cancer free. Being only four years old she was excited to become a little girl again and do all the things little girls do that she had been missing out on. After only five short months of her body being free of chemo she was told the cancer was back. Telling a five year old they had cancer usually wouldn't crush them because they have no idea what cancer is and no idea what is coming. Taleah knows!!! She been there done that. Now, not only does she have to do all the chemo again, but this time around it's a lot more aggressive. She will not be spending much time at home. She is confined to the small little hospital room at Primary Children's for 28 days at a time with small week or so breaks in between. She also has to undergo radiation and have a bone marrow transplant. Both of which are very hard on her little body. Knowing all this, she was devastated when driving in the car to Salt Lake her parents broke the news to her. A little girl shouldn't have to have cancer once, let alone twice. She was silent the rest of the 5 hour drive.<br />
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Taleah has finished her first round of chemo and is gearing up for the next step in her treatment. She has had good days and bad days. She is still one amazing little princess and she will beat this cancer again. She is a fighter with one spunky little personality.<br />
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Taleah's family is right there with her fighting. This may be Taleah's physical battle but cancer affects everyone around Taleah. Her family is absolutely amazing! Taleah has a little brother who is 3 yrs old and full of energy. She also has 5 month old twin brother and sister (little sister is Taleah's bone marrow match). So you can imagine what a strain this has put on their little family. Once Taleah has her bone marrow transplant she will recover in the hospital for a bit, but then they will release her with the instructions that she is not to leave Salt Lake for 100 days. And the quality of housing she has to find has to be up to par with a bone marrow patient. (super clean) Again, another situation that will take lots of adjustment. If you know of anywhere for this family to stay let me know. You can read more about Taleah on her blog <a href="http://www.togetherfortaleah.blogspot.com/" target="_blank">Together for Taleah</a><br />
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We want the Stevenson's, like Millie's family, to focus on their fight with childhood cancer… not the <br />
financial fall-out from medical and peripheral expenses. In doing this Millie's Princess Foundation will be hosting their first <a href="http://www.active.com/st-george-ut/running/races/together-for-taleah-millie-s-princess-run-st-george-2014" target="_blank"><span style="color: #cc0000;"><b>St. George run at Desert Hills High School on June 7th starting at 8:00 am</b></span></a>. You can register <a href="http://www.active.com/st-george-ut/running/races/together-for-taleah-millie-s-princess-run-st-george-2014" target="_blank">here.</a><br />
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Dress up in your princess/prince attire and come show your support by running/walking in a 5K event. There will be activities for the whole family, food, prizes, and lots of fun. There are also shorter distances for the kids races which will be held after the 5K.<br />
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If you can not come, spread the word! If you still want to help you can donate to the family by linking to their <a href="http://www.togetherfortaleah.blogspot.com/" target="_blank">blog</a> and clicking on the donation button.<b> </b>You can like the <a href="https://www.facebook.com/milliesprincessrunsaintgeorge" target="_blank">facebook page</a>, and share the event on your facebook page. So there are lots of ways to help if you are not local or can not make it to the run. There is an offer from now until Friday, May 2 at midnight for<b> $5 off your registration if you will share</b> the info about the run with all your friends. Just enter "share" at checkout. So jump in and help anyway you can. Taleah needs your help, but most of all keep her and her family in your prayers!!! <br />
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com0tag:blogger.com,1999:blog-6103435633500701144.post-33361126154559573762014-04-27T08:49:00.002-07:002014-04-27T08:49:29.639-07:00End of Round 1<div style="text-align: center;">
I'm so glad that the steroids have come to an end. They are always a real joy. I always feel like I'll never get my girl back, but then she always comes around.</div>
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Her hair was continuing to fall out and make a mess everywhere. I had big plans to make the "buzz party" a success, but the steroids and chaos of my sweet little family made that near impossible. She was on edge... And I may have been too. We ended up rushing it and just getting it over with. She didn't really act like she cared that much. It would have made it much harder to do it had she been devastated to cut it, but her hair was everywhere and she was sick of it being all over everything. Slade was a trooper and went along with the idea. It was his idea to be like Taleah. Pretty sweet. </div>
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We were so excited to get the last chemo day of round 1 done. She did great with the LP and came out of sedation pretty fast. The spinal fluid was clear again which I was very grateful for. Now... we wait. We wait for counts to come up enough to go home and then wait some more for them to come up enough to do the bone marrow aspiration. The aspiration that this entire first round has been for. I am a nervous wreck about it. Again, it is out of my control. When am I going to accept that?!</div>
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Luckily, she is loving the bald head. She says it is great because she doesn't have to wash it and now the babies can't pull it. </div>
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I will admit that we were a little sad to be missing all of the Easter festivities. Of course I didn't show it because I didn't want Taleah to feel bad. However, we made it pretty fun ourselves at the hospital. She wasn't supposed to leave her room when a lot of people were in the halls so we waited until evening to do an Easter egg hunt in the halls. They loved it. We were able to have one of their cousins up to be a part and I think that really made her feel "normal".</div>
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My mom went to a lot of trouble to make Easter Sunday feel "normal". We took the kids down to the 3rd floor for church and I cannot even describe the spirit that I felt. There were all sorts of people with their own trials. The sweetest kids and I couldn't hold back the tears. We were not the only ones feeling overwhelmed, burdened and experiencing trials. There are so many and we were all in a room and it was a giant confirmation that God loves us and is watching over us. It really was such an amazing 30 min of undeniable feelings of love. We had an Easter egg hunt on the patio of the 4th floor, opened presents from Grammy and tried to enjoy each others company. I won't lie... it was still stressful at times... imagine all of us in one hospital room. And let's not forget that 3 of them were babies. I still loved that we were able to be together because it hasn't much in the last month. </div>
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(this sums up a lot of the day)</div>
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Visitors at the hospital are tough. We love having them but it's a lot of trouble for them to come. And they have to be healthy and follow good handwashing to try and prevent the spread of germs. Taleah has LOVED when some of her closest friends have come to play. It really does make her day! </div>
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There is one girl in particular that Taleah has loved getting to know. Her name is Cami and she has been through the same thing as Taleah. She is 6 months post bone marrow transplant and has been a huge resource to us. Her family gets is, Cami gets it and knows how/where to be careful when playing in the hospital room. She has been showing Taleah the ways and what fun things she can do.. as well as playing tricks on the nurses. We look forward to lots of playdates with this cute girl. (I must say I have enjoyed her parents, as well as lots of other parents and they have been a giant resource to me as well).</div>
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The waiting game is rough. We wanted to get home for a break so bad. It was becoming extremely difficult to keep her entertained and I was running out of ideas and she was losing patience. She wanted to make a music video that was similar to the video that Uncle Taylor made for her. ( <a href="https://www.youtube.com/watch?v=R6cYH1XKjKg">https://www.youtube.com/watch?v=R6cYH1XKjKg</a> )</div>
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It was all her idea and I loved it. I felt like she was back!!!</div>
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<a href="https://www.youtube.com/watch?v=aHyoCMzTgqY">https://www.youtube.com/watch?v=aHyoCMzTgqY</a></div>
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We finally got the news we could pack up. (We had a false maybe we could go home so I could hardly believe it) I think we were both ecstatic!! We had lots of people help us get ready to go. It took about 6 hours to get everything in order to leave. I was a little nervous to leave because we had been in constant care of nurses, but I knew we could handle it. </div>
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There was a lot of work happening at home. Friends/family were putting together a new room for Taleah. They had spent a lot of hours preparing. Such good people. I was so excited to see it and Taleah had no idea what was coming. Also, we had awesome friends/neighbors/ward members that cleaned our house to get it ready for her low immune system. </div>
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She pretty much loves it. A lot!!!</div>
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Being home is amazing. I still feel like we are depending on so many people to function, which I don't like but am so grateful for. We have such amazing families that have dedicated their lives to help us. We are SO grateful, but I am an independent person so it has been an adjustment for me. That doesn't mean that I am not grateful... just adjusting. </div>
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Being under to same roof means more than it ever has. Bike rides outside, playing games and just hanging out. I love it all. We are headed up on Monday for the bone marrow aspiration. I am trying not to let it stress me out. It will be fine. Taleah is a rockstar. </div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com2tag:blogger.com,1999:blog-6103435633500701144.post-73525552943448579362014-04-11T14:10:00.002-07:002014-04-11T14:10:21.973-07:00Day 17- Steroids<div class="separator" style="clear: both; text-align: center;">
Seroids full swing. Here we go. Ugh.</div>
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Last night I spent about 2 hours searching for Fritos. Yes, that's all she could think about and all she wanted. We couldn't find them from any floor, vending maching, the U hospital, anywhere!! I had about 2 people helping me for over an hour. I prepared 5 different "dinners" and there weren't any that were good enough. It's only day 3 of these steroids... so a good 3 days before they are out of her system. We can do this. She received another chemo today (PEG). The remainder of this round will consist of another LP, triple dose intrathecal chemo, and Vinc through her PICC. We will wait for counts to come up and then come home for a week break. </div>
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I had an overwhelming amount of gratitude today. We got call from Elder Holland's office saying that he would come and visit us. He was able to come for about 30 minutes and it was very special. There are things that I will keep private and journal for my family to have/read. However, I must note that he is an amazing man. The spirit I felt was undeniable and emotional. He was able to give Taleah and Tait a blessing and it was something that I will never forget. I know that sweet little Tait signed up for this journey and I am so grateful that she did. I am grateful that I had the twins. I am feeling grateful for a lot of things. Amongst an ornery Taleah today, I still feel blessed. I feel an overwhelming sense of peace regarding this bone marrow transplant. </div>
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We have a lot to be grateful for. </div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com6tag:blogger.com,1999:blog-6103435633500701144.post-91612955502345817372014-04-11T13:38:00.003-07:002014-04-11T13:38:45.597-07:00Day 14-16<div class="separator" style="clear: both; text-align: center;">
Taleah has been in pretty good spirits the past few days. I cherish those moments more than ever.</div>
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I had the chance to fly home to STG for 24 hours. Slade was home and I couldn't wait to spend a little bit of time with him. Ryan and Donelle (the owners of the cheer gym I coach for) bought me a ticket to come and be a part of the "team placements". I absolutely love coaching so it meant a lot to be there and be a part of it.</div>
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Slade greeted me at the airport with flowers and lots of hugs and kisses. I LOVED it! Leaving him was difficult and he told me that he wanted me to stay at home with him. Just about broke my heart. </div>
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Taleah was thrilled to end up with a t-shirt from tryouts and wanted to make sure that I put her on the mini team. Ha. She hates to miss out on anything.</div>
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We were talking later that afternoon and she mentioned to me that she needs to get better before May. She said she has her dance recital and a special song to sing for school. She told me it was a song to her family and it was very special. Oh and my brother's wedding.... she said it will be fine if she is bald and she can't wait to see it all happen, Taleah made sure that I knew May was a busy month for her so we needed to make sure that she was better. Ugh... I didn't have the heart to tell her that she probably won't be doing any of that. I wanted to cry... and then scream and it made me feel horrible that she will miss it all. Yes, it is all silly things that really don't "matter" in the end... but she wants to be a part of all of it and I am not sure how to break the news. I wish I had control over it all, but I am continually learning that I don't.</div>
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Her hair is officially falling out. I gave her a bath last night and the hair kept on coming. We have decided to wait for Slade to come up and then we will shave them together. I keep pointing out the good things about being bald and I feel like she is accepting it. However, I couldn't help but think it was probably the last night I will comb her long hair for a while... AGAIN! It is so superficial but she was working so hard to grow it out, but I do love those bald heads. It is something special.</div>
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Taleah received another Lumbar Puncture and a triple dose of intrathecal chemotherapy. Along with vincristine through her PICC line. Oh and we can't forget the 5 day pulse of steroids we have started. And they are full force. We received the news that her CSF is clear. That is 2 in a row so that is great!</div>
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Side note... they needed our room for a different patient so we were moved to a BIGGER room. So this room is no longer.... and I am not sad about it.</div>
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We met with the bone marrow team yesterday. It was a lot of information and very helpful. Here is the tentative plan...</div>
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We are hoping that Taleah will be in remission by the end of this round (about 2 more weeks). Remission meaning that her bone marrow aspirate will show an MRD of less than 0.1%. This will be huge. If that happens, we will hopefully be home for a week or two and then back up for another round (appx 4 weeks). As long as the second round goes well and no complications, we will prepare for transplant (hoping for a week break before transplant). That will consist of high dose chemo and radiation. We will be admitted for transplant and inpt from anywhere between 25-50 days. Then another 3 months of living up here, weekly visits and staying healthy. They will let us go home 100 days post transplant...as long as things go well. There are so many what ifs.. and not a definite plan. It will take about 6 months to a year to get back to normal. </div>
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New news...</div>
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The team would prefer to use Tait's actual bone marrow over the cord blood. The donor has to be at least 6 months of age, which she will be when it comes time for transplant. IF we can't get enough marrow, we will supplement with the cord blood. Talk about nervous... there is a plan and a purpose. Tait will have to pass a lengthy physical and we need to find out if they are the same blood type (they have the same HLA typing). I am slightly a nervous wreck but it will work out. It has to. </div>
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The "plan" for treatment can change so quickly. Everything has to fall into place. They explained that there is always a small percentage that doesn't work out. Yes, we understand that... 8% chance of relapse and here we are. I am trying to be positive. Lots of things to pray for. And lots of things to be grateful for.</div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com1tag:blogger.com,1999:blog-6103435633500701144.post-26479188949142815572014-04-07T16:22:00.000-07:002014-04-07T16:22:08.583-07:00Day 9-13<div style="text-align: center;">
Things have been fairly low key, which is great. She has actually been more herself and had energy. It's amazing what those blood transfusions can do for these kids. I can't even tell you how amazing it is to see her personality coming back. </div>
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I have been struggling with my feelings regarding my other kids. I feel very blessed to have so many people that love us and our family. They are well cared for and it makes a big difference. </div>
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We will continue to do what we are doing and try to feel "normal" and be "together".</div>
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We have been expecting the news about the siblings next week.</div>
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We decided that Tait missed the curtain call initially (miscarriage before twins) because she was talking too much. We are so glad that she decided to join Sloan for the party. It looks like Taleahs "mini me" is a match. They will now test the cord blood to make sure it is a good sample and will work for the transplant. Please pray that the cord blood will be a good sample and that we can move forward towards a transplant.<br /> Don't believe in miracles. Rely on them.</div>
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There have been so many people serving us. Bringing dinners, bringing treats, sending gifts and words of encouragement. We appreciate it more than you know. Treena (aunt grammy) has been very entertaining. Taleah adores her and enjoys her company. Now that she is feeling well enough to party with her, she is requesting a lot of her time. </div>
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One thing that Taleah has wanted to do before her hair falls out... have it "light" like Elsa. I figured it was a valid request and we would make it happen before we shave her head. Treena came to the rescue and made her dreams come true. </div>
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Having Slade here when she is actually feeling pretty good was much better. They were happy to see each other and enjoyed each others company. It made my heart so happy. She could only handle him for a couple of hours... just like they are at home. Some things never change.</div>
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This week she will have an another lumbar puncture, chemo in her spine and through her PICC line. Oh and let's not forget the steroids. We start those on Wednesday. </div>
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We also meet with the bone marrow team to discuss pros and cons, the cord blood and the plan. I am extremely nervous but hoping to get some answers and some peace of mind. </div>
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What a long journey we have, but trying to be positive and take it one day at a time. </div>
Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com2tag:blogger.com,1999:blog-6103435633500701144.post-14032320899763337662014-04-02T22:58:00.001-07:002014-04-02T22:58:12.247-07:00Day 8Taleah has been extremely tired and having a hard time sitting up. She wants to lay down and watch a show, which is not like her at all. The sad part of it is that she doesn't even really watch the show, but just stares. I have tried offering games, coloring, any type of distraction but the noise and energy of it all makes her upset. I miss my spunky girl.<br />
She received another platelet transfusion before her LP today. Her appointment was at 1pm so she had to fast all morning. She did a pretty good job with the procedure and recovered fairly quickly. And I think I have found the right combination of meds that reduces her nausea after sedation by a lot! We were anxiously awaiting the results of the CSF because of the 6 leukemia blasts they found last week. The sample contained 32 cells and they said that none of them were blasts so that is great news. We will test again in 1 week in hopes that it will have the same result. She did receive an extra 2 chemos intrathecally, so we will see how that affects her. She also received some chemo through her PICC line.<br />
Her immune system is officially down. We will need to be very cautious due to her lack of ability to fight any type of infection. She will also receive a blood transfusion tomorrow in hopes that she will gain some energy and lose the headaches.<br />
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We will hopefully find out if the kids are a match in 1 week. The anxiety just might put me over the edge, but I just have to remember that it is out of my control. That is a lesson that apparently I still haven't learned.<br />
I must say that I am grateful for the small things though. We have had the twins at the hospital for 4-6 hours a day. We have laid down a mat and let the babies play. Taleah has loved having them there and I think it has been therapy for her. I have been worried about missing milestones for the babies. Sloan made a point to roll over at the hospital when I was playing with him. Tait had previously showed him up and now I got to see Sloan do it. It sounds silly, but those are the things that I want to be a part of. I am still struggling with how I will find a balance in all my kiddos, but I need to trust that it is going to work out.<br />
We are so lucky to have amazing people behind us. It really makes a difference. We feel very blessed to at least have that much to help us through.Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com2tag:blogger.com,1999:blog-6103435633500701144.post-8473878040730282742014-03-31T21:55:00.001-07:002014-03-31T21:55:37.168-07:00Day 5 & 6Day 5<br />
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These kids have been troopers. It's been a rough week and they've been along for the ride. Playing in masks, hanging in a tiny hospital room and feelin the love. This has been the most interaction Taleah has given anyone in the last 6 days.<span class="text_exposed_hide">...</span><span class="text_exposed_show"> I'm thinking these babies will be a giant blessing through this trial. She is continually asking when they will be here and usually wants them to stay longer (unless they cry for too long). Today has been the best day by far and I can't help but think it's because of the prayers/fasting on our behalf. </span></div>
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Taleah's counts have been dropping, which is what we want. Her platelets were really low today so she had a platelet transfusion. It always reminds me how grateful I am for people that donate platelets and blood. It is truly saving lives. This is her second transfusion this week. We always pre-medicate her with Benadryl before due to the high chance of a reaction. <br />
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<span class="text_exposed_show">Day 6<br />
This is the last day of steroids. The hunger has finally set in. She has made some pretty rude remarks and has very little patience. She seems like she is almost in a daze and just not herself. I have to remember that the steroids have always done that to her. I just hate that she isn't her spunky little self. I keep thinking that I wish I would've embraced and loved her spunky attitude at home, I wish I would've spent some more one on one time with her when she was feeling good, I wish I would've worried less about a clean house and got down and played with my kiddos. I know I can't wish for things in the past, but man this really makes ya think... and wish. <br />
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We have had some visitors and enjoyed the company. She hasn't been very social but has made some comments and answered some questions. This is progress. She is not freaking out when people come in the room and is cooperating for most things. <br />
She is already losing weight and her little muscly body is almost no longer. She is starting to look pale and "sick". I don't know why my stomach sinks every couple of times I look at her and I reminded of the situation. I know what is happening and what to expect, but I still do it. Crazy what can happen in 1 week!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcrn-lYVOywrSN-1Y1pXl9H4iLIG9dPk1GgnUDjR5tbFBLe6V0s4lS3HMvNegfSORZVuNqyNJrKZjgfPT-9u4iJ61XkFfWnDx-DiIt7hz03LJYTeqvGtgreZn4I2Gi-yIdShe5Hk7fJ58/s1600/IMG_7819.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcrn-lYVOywrSN-1Y1pXl9H4iLIG9dPk1GgnUDjR5tbFBLe6V0s4lS3HMvNegfSORZVuNqyNJrKZjgfPT-9u4iJ61XkFfWnDx-DiIt7hz03LJYTeqvGtgreZn4I2Gi-yIdShe5Hk7fJ58/s1600/IMG_7819.JPG" height="320" width="240" /></a></div>
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We are currently awaiting more chemo and procedures, waiting for the results of the kiddos and potential matching, and praying that her body is doing what it is supposed to.</div>
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I am receiving a lot of uplifting quotes. They are very helpful especially when I let my anger/bitter attitude get the best of me. This may sound crazy, but my mind wanders to the worst place at times. It wanders to what could be, what ifs, and lots of other sad/crazy things. I know that it's pointless and not my choice/plan. I still do it, but it's nice because these quotes bring me back.</div>
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<br />❤️ It will be alright in the end, trust in God and believe in good things to come. ❤️</div>
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Stevenson Storieshttp://www.blogger.com/profile/04098692116702868065noreply@blogger.com4