tag:blogger.com,1999:blog-23843375366622643852024-03-12T22:01:38.202-07:00Jordyn's JourneyJessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.comBlogger66125tag:blogger.com,1999:blog-2384337536662264385.post-47453525893153212662014-09-30T11:12:00.001-07:002014-09-30T11:12:54.342-07:00Jordyn is doing really well at the momentI know I owe you all an update... Sorry it has taken so long. Jordyn rang the bell and it was a fantastic day! She had her last lp that day and they gave her a cupcake for finishing up. She loved it! It was a great day and a little emotional too.
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She got her port taken out a week after her last iv chemo. She was pretty nervous... So was I.... I am not sure if you remember, but when she got her port placed two years ago, she screamed and cried and wouldn't let us buckle her up and then she refused to talk to me for a week. I was afraid that might happen again, but of course it didn't (now that she isn't 3 anymore, she understands more, and knows I love her). She has realized that I am not the one causing all the hard things, and that I am just the one there to help her through it all. <br><br>
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She had a really hard time coming out of anesthesia this time around. The breathing tube they had put in caused her to cough a lot, and she was in a lot of pain when she woke up from surgery. They gave her some medicine to help with the pain, and then her oxygen stats were going super low, so they had to keep her on oxygen for a few hours. We eventually were allowed to leave the hospital that evening. She felt much better the next day.
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Jordyn took her last chemo pill on June 11th. We celebrated by inviting some friends over and having a beautifully fabulous cake! Thanks to Icing Smiles and their amazing baker Kristina for the most incredible cake I have seen! It was absolutely PERFECT for her! We cut into it and found the funnest surprise of rainbow cake! The kids loved it and all wanted part of the rainbow to eat. Jordyn carried the ponies she got on top of the cake around for weeks. She loved them.
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We have so far went to one oncology check up appointment. She had to go to lab first, and they did a finger poke to get some blood for the cbc. Jordyn got a small prize for being brave. Then we headed up to clinic. It was the shortest visit ever! I loved how simple it was and how fast it was! Jordyn's counts were fabulous and some of them were almost "NORMAL"! I have never seen her blood counts in "normal" ranges for a "normal" kid. They are always "normal" for a cancer child, but never close to what an average person is. I am hoping her counts are still doing that well when we go in for her next appointment this Thursday. I think her checkups will always make me nervous, because there is always the chance that the counts will show that her cancer has returned and I don't think I could handle that. We are still praying for her to stay in remission. The first six months are the most scary to get through because most relapses happen during that time, but I do have many friends whose children have relapsed after the two year mark, so it is always a concern. Now that she is through her treatment, I have the worries that she may have some latent side effects as she grows up. That is another scary thing to think about...
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Jordyn started Kindergarten this month and she is loving it for the most part, although she has had some run ins with bullies... She has a little friend who was being bullied and she stuck with her and now I think they are targeting her as well. I am hoping that resolves itself soon... She is such a sweetheart and has such love for everyone and hates to see anyone being teased or made fun of in any way.
<br><br>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com1tag:blogger.com,1999:blog-2384337536662264385.post-17730395371313441892014-07-10T12:07:00.000-07:002014-07-10T12:11:08.566-07:00Final chemo is coming up! Jordyn has been doing really well lately. She graduated from preschool and will start Kindergarten in the fall. She has some big things coming up soon! She will have her last chemo infusion on July 21st! And then she will take her last chemo pill on August 16th, just in time to start Kindergarten! It is really exciting and a little bit scary all at the same time. It will be kind of nerve racking knowing she won't have anything in place to keep the cancer from coming back, but good to know that she can live a fairly normal life as long as everything plays out the way we hope it will. The first 6 months off of treatment there is a higher risk of relapse, and that is scary to think about. Even after that there is still risk of the cancer returning or a secondary cancer, or other health issues as a result of her treatments that saved her life. We are just trying to not think about what bad things could happen and enjoy her being able to be a normal kid with normal kid problems. She will continue to go to the oncology clinic to be checked on every month for at least the first six months and then it tapers down after that until she is seeing them just once a year, which she will do until she graduates from high school. It will still be something that will impact her life, no doubt about that, but hopefully the impact continues to lessen as time goes by. She is in a study that will also follow her as she grows up to see what other issues she may develop as a possible result of the treatments. That keeps me confident and it gives me hope for those who come after her that they will know better the long term side effects of cancer treatment in very young children.
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Oh, and I forgot to mention, she lost her first tooth and then two days ago, she lost her second tooth! She is super excited about this!
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<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-euhdVjup-5U/U77h_gMbfCI/AAAAAAAAEDo/yjeT_B1U_rk/s1600/IMG_7798.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-euhdVjup-5U/U77h_gMbfCI/AAAAAAAAEDo/yjeT_B1U_rk/s320/IMG_7798.jpg" /></a></div>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com1tag:blogger.com,1999:blog-2384337536662264385.post-4291265927164758982014-05-08T14:21:00.000-07:002014-05-08T14:21:05.557-07:00Finally a blog update...Sorry it has been awhile since I have updated the blog! Jordyn has been doing really really well lately. She hasn't had to go to the er or be inpatient since December, I believe. That is a long time for us, and we are grateful for the break we have gotten from that part of everything. She did catch a little stomach bug about two weeks ago, but it was nothing like dealing with chemo, so we did okay.
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We went to clinic last Thursday. Jordyn had excellent counts and they are keeping her oral chemo dose that she takes at home the same. We got her paperwork filled out for Kindergarten, which she will start in the fall this year. I can't believe how old she is and how little she was when we started this journey. We are getting excited for August 16th, which will be her last chemo as long as everything falls into place like we hope it does. She had a lumbar puncture that day, so it was a long day with that and her pentamadine that she gets that runs over an hour for her antibiotic. She will get her last iv chemo, lumbar puncture/spinal tap, as well as her port removed at the end of July. That will also be the day that she gets to ring the bell in clinic to signify the end of chemo (even though she will still take meds at home until August 16th).
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We have been able to do more fun things since Jordyn has had good counts. We were able to take her to Wheeler Farm to see the baby animals, and both kids loved it!
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We were also blessed to be a part of the Make a Wish Easter party at the zoo. It was a lot of fun. The kids got their faces painted and had a fun time looking at the animals.
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<br>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-5490186973421533662013-12-18T15:25:00.001-08:002013-12-18T15:25:19.246-08:00Fun Stuff, Clinic, and More Fun Stuff!Jordyn has been wanting to go ice skating for a long time. We took her to the Gallivan Center with Make a Wish a few weeks ago, and she has wanted to go back ever since, even though we only made it around less than one time... Anyway... She really wanted her aunt Ashlee to go with her, so she made a special trip up to come ice skating with us! This time we went to an indoor rink. It was a lot less busy, the ice was smoother, and we had a bunch of fun! We made it around at least twice, maybe more with both of the kids, and then we each took turns skating around while the kids rested on the side and clapped for us.
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Make a Wish invited us along for a ride on the North Pole Express. We were able to take a little ride on the Heber Creeper, and rode it to the "North Pole" to see Santa Clause. It was a fun ride, and I think the kids enjoyed it and getting their tickets punched. The kids were able to sit on Santa's lap, and then they were able to chose a gift for each of them. They had a great time. If I remember, I will try to scan in the pictures that were taken on Santa's lap, and share them on here.
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Hope Kids invited us to go see the Nutcracker dress rehearsal with them. Jordyn loved this both last year and this year. She especially loved dancing in the aisles like the dancers were doing on stage.
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We had clinic on Thursday, and it ended up being a really long day. They have continued her on the new antibiotic that runs over an hour, and it seems to have made a significant difference in her counts. They are usually WAY higher, unless she is sick like over the week of Thanksgiving. Because of that, she is now back at 50% chemo, which is not preferred... They are going to have home health come out in about two weeks from her appointment to check blood counts and hopefully up her chemo again. Her port has been causing problems lately. (her port is what was surgically inserted into her body to make drawing blood and administering chemo, fluids, and other iv meds easier on her) The last time home health was out, she had to get a peripheral iv put in to draw her blood because her port wasn't drawing back, yet again... It still wasn't working when we went to clinic, so they had to order cath flow, which took about 1.5 hours to get up to clinic... Because it took so long, I had to figure out what to do with Jeremy since the wonderful person watching him had plans and I wasn't going to make it on time. Luckily, her son was able to stay with him, and I am sooo grateful for that!
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Thankfully we got some fun out of it! Roxy the therapy dog visited while we were there, and Jordyn absolutely loved it!
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Jordyn was surprised with a Christmas stocking that had some fun surprises in it, including her absolute favorite thing she got, lipstick... She actually does a really good job putting it on by herself without getting it everywhere! Lol!
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We had a church ward Christmas party/breakfast on Saturday. It was yummy and gave the kids another opportunity to see Santa!
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The kids had a dance recital at a retirement center, and both did really well! Jeremy even did a move he hadn't done before!
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We went to Temple Square to see the lights with my little family, my sister, my mom and dad. It was cold, but pretty!
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<br><br><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-5NzE3NvOE0A/UrImBIeh3II/AAAAAAAADvs/u2e78UbhDj8/s1600/IMG_2219-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-5NzE3NvOE0A/UrImBIeh3II/AAAAAAAADvs/u2e78UbhDj8/s320/IMG_2219-2.jpg" /></a></div>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-42507294661405022542013-11-28T10:08:00.000-08:002013-11-28T10:08:45.714-08:00Thanksgiving and feversJordyn spiked a fever on Monday and was admitted to the hospital with low counts<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-uGV0-5mYzi8/UpeFaZbK1EI/AAAAAAAADsE/tTxdi_aV7VY/s1600/KINDLE_CAMERA_1383315442000.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-uGV0-5mYzi8/UpeFaZbK1EI/AAAAAAAADsE/tTxdi_aV7VY/s320/KINDLE_CAMERA_ Today we are finally going home! Happy Thanksgiving! <div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-3yhGPeDz8qk/UpeF7XEtOTI/AAAAAAAADsM/6aDr-JC5700/s1600/KINDLE_CAMERA_1383562584000.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-3yhGPeDz8qk/UpeF7XEtOTI/AAAAAAAADsM/6aDr-JC5700/s320/KINDLE_CAMERA_1383562584000.jpg" /></a></div>61383315442000.jpg" /></a></div>Happy Thanksgiving!!! We are on our way home! Thank you Angel Karen Krause e cute outfit and matching doll outfit! Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-57689778804889719542013-11-15T19:48:00.000-08:002013-11-17T12:44:27.561-08:00A Big Thank You Post and a Little About Jordyn's Make A Wish tripI can't believe I just posted 526 pictures from Jordyn's Make a Wish trip to <a href="https://www.facebook.com/pages/Jordyns-Journey-to-Triumph-over-ALL-Acute-Lymphoblastic-Leukemia/525730070799917">her facebook page</a>! The crazy part is that this is only a small fraction of the pictures... I just posted my favorites! I put some pictures in this post too, but not many compared to how many I have, so if you want to see more go to <a href="https://www.facebook.com/pages/Jordyns-Journey-to-Triumph-over-ALL-Acute-Lymphoblastic-Leukemia/525730070799917">Jordyn's Facebook page</a> <a href="https://www.facebook.com/pages/Jordyns-Journey-to-Triumph-over-ALL-Acute-Lymphoblastic-Leukemia/525730070799917">https://www.facebook.com/pages/Jordyns-Journey-to-Triumph-over-ALL-Acute-Lymphoblastic-Leukemia/525730070799917</a>. I have been meaning to post pictures for quite sometime (our trip was on October 4th) but I have been pretty sick myself and spent some time in the emergency room, bed, and finally in an operating room to try and hopefully fix my problems. I am feeling a little better and mostly recovered from surgery now so I am feeling more up to posting than I have been. The pictures give you a hint of the fun and amazing time we had thanks to Make a Wish and Give Kids the World. It will go down as the best vacation we have ever been on and will ever go on! It was so magical and unbelievably good and healing for our family! It really was amazing and we were so touched by all the people who reached out to us and who played any part in our trip. We are so thankful to all the volunteers and others who served us and the love that they have that made such an experience possible! That is one of the incredible things that has come from this horrible cancer experience. We have been able to see how good people are, and how loving, giving, and how thoughtful, and prayerful people can be. Not just through Make a Wish, but through this whole entire cancer journey we have found these people, and have felt so blessed!!! We really couldn't have made it as far as we have without you all! Thank you so much from the bottom of our hearts for all that you do! You are the glue that holds us together on days that we are falling to pieces! We love you and are so grateful to have had you as part of our lives!
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I want to name a few specific people who have gone above and beyond for our family... Karen Leabo Singletary (has been an amazing angel to Jordyn and occasionally Jeremy for a year, who has sent letters, cards, and gifts to lift our little ones spirits through this trial), Karen Krause (another one of Jordyn's incredible angels who has sent her love in the mail for the last year to brighten her days and spirits), Judy Thomas of Back to Basics School of Dance (Who threw an amazing fundraiser by sharing her time and talents and heart for Jordyn and also worked with her privately when she was too sick and compromised to dance with a normal dance class, and who has been willing to open her heart to other cancer cuties fighting this hard battle and help them out as well), Katrina Endrizzi (who threw a wonderful fundraising event out of her own home, she let her home be overtaken by donations and then on the fundraiser day by hundreds of people who were there to support Jordyn, who also spent lots of time and heart pulling it together to make it what it was)
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I would also like to thank Jeanene Brown (for watching Jeremy on many of Jordyn's chemo days, sometimes for over 6 hours and occasionally watching both kids to help me out for appointments for myself. My children adore her so much! She even did my dishes once, and helped me clean my house when I was completely overwhelmed), Paula Fetzer (for taking the time and effort to watch my children when I need her too, she has been one of a few people who took Jeremy last minute for an unknown amount of time while I took Jordyn to the emergency room or clinic with a fever), Barry and Chris Bennett for your love as well as your generous financial contributions to help us out during this difficult time, our parents for taking Jeremy at the beginning and helping clean our house and being so willing to help and loving to us and our children while we go through all this cancer yuckiness, our siblings for their time help and gifts they gave Jordyn especially at the beginning, those who have donated to fundraisers both financially and with items, services, and time, all those who have brought us food, all of her nurses and Dr. Barnett, her home health nurse Cheryl, Clinic nurse Vanessa, clinic nurse Aubri, and I am sure I am missing someone, so if I miss you I am sooo sorry. The Primary in our church who brought Jordyn a special tree for our front lawn so she could watch the birds eat outside our window when she was too sick to go outside, the girls who brought her candy when she couldn't go trick or treating, the young men and young women for their generosity and hard work, the people who helped cover Jordyn's hospital room at the beginning with butterfly pictures and hanging butterflies, those who have donated crafts to Primary Children's as well as hat to warm her bald head last winter, those who have done CureSearch walks to get a cure for childood cancer, those who have participated in any way with Jordyn's fundraisers, Stacie and Andrea who are Jacob's cousins who brought her some cheer during the really difficult times last year, Kae Larson for also bringing her a bunch of cheer during the most trying and difficult times of treatment, all those who wrote letters to her and sent her packages particularly last year when things were so tough, thank you so much.
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There are many, many others who have done big things to help Jordyn and our family out, and we are so grateful to you all as well! Thank you so much!
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<br><br>We just arrived at clinic.. <br><br><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-r8mhXNaxOHs/UhqsCbodE9I/AAAAAAAADlw/gWtjw3RlMMI/s1600/IMG_6617.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-r8mhXNaxOHs/UhqsCbodE9I/AAAAAAAADlw/gWtjw3RlMMI/s320/IMG_6617.jpg" /></a></div>
Here she is making an egg creature to pass some time while we wait
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Jordyn was able to sit in the stroller to get her blood pressure taken this time. She liked that.
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Getting weighed here, she is staying about the same weight wise, so the doctor is happy about that.
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She is getting taller!
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I am loving her hair and thicker eyelashes!
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She loved to make silly faces at me this time at clinic.
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I had to take a shot of the back of her head to show her gorgeous curls she has!
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Jordyn and her doctor.
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Jordyn and the child life specialist making purple snow
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Here Jordyn is in the elevator playing with her purple snow on the way down to RTU.
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Here we are waiting to go into the sedation room to get her lp done.
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Here Jordyn is with Roxy the therapy dog. We get to see her at clinic occasionally and sometimes she even dances for Jordyn!
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Love that they both have their tongues out! Lol!
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Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-17837966827727968772013-08-25T18:10:00.000-07:002013-08-25T18:10:22.443-07:00July Clinic - Playing blog catch up... This is the most behind I think I have ever been on the blog... My apologies! I have been making sure I get pictures to record what is going on, but I guess I have let life get in the way of posting on the blog... I am going to try to catch up today hopefully...
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The clinic before July they had run a test on Jordyn's blood to see if it had an enzyme that made her extra sensitive to the methotrexate she takes on Thursday's. They have tested for two different things before, I think, and it came back that she didn't have that enzyme that made her sensitive to it, but she still seems to be have her immune system more suppressed than the doctor wants. He would feel better if she was on a little higher dose of her chemo.
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Oh, and to update on Jordyn. She hasn't been feeling well since yesterday. She had a fever and we were in the emergency room last night until around 2 am. They sent us home after a dose of antibiotics. Jordyn ended up being pretty sick in the night and woke up with a fever still. She slept all day pretty much only waking up for about forty five minutes. She woke up at about 5:45 finally. I worry when she throws up because of the other condition she has that can cause severe acidosis in kids like her, which can be very scary and dangerous.Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-32408834676509468782013-07-02T18:14:00.000-07:002013-07-02T18:14:39.060-07:00Clinic and some Fun!I feel like it has been a long time since we have been able to do much fun things, so these last two weeks have been a ton of fun. Jordyn is already tired most of the time, so she has been completely exhausted from all that we have been doing, but loving every second of it. We took her camping over the weekend with our friends and her best friend, and she had the greatest time ever. (I tried to post camping pictures on here, but they wouldn't upload...) The biggest change I think is that she actually takes a nap most days. We took her to clinic on Thursday and her ANC was 600, which is still lower than they would like. The doctors would love to keep it around 1000, but she is continuing her chemo at this point. I personally think they are worried about having her off of the chemo for too long of a period of time because that is what is keeping the cancer away and so they are keeping her on even the chemo even though her immune system is low because she has spent a lot of maintenance off of chemo because of a low immune system and that is kind of scary if you ask me. Anyway... Here are some pictures from clinic.
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Pardon the size of the pictures... Blogger changed the way you do pictures and apparently I don't know what I am doing...
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Here she is about to be accessed. It was not a good poke because I forgot to put the numbing cream on her that morning... She ended up screaming when the needle went in... I can see why though, it is a big needle and it is in her abdomen... I felt so bad...
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Getting blood drawn so we can know what her counts are.
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Doctor listening to her back
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She loves her doctor!
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They play so well together. He really cares about the kiddos!
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Here she is getting her chemo. The vincristine is a fast push over a minute.
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Playing with train tracks at clinic (I wish it wasn't on the floor, but I couldn't convince her to keep using the table...)
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Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-13921030842766858592013-06-22T19:56:00.001-07:002013-06-22T19:56:34.006-07:00ANC 800Jordyn's ANC needed to be at 700 to restart chemo and it was 800 on Friday, so she is now taking her oral chemo again, but is on half the dose because it took her immune system out at the higher doses. Now every week she will have 5 1/2 less pills to take, and we are hoping she will be able to keep her immune system up so that she can live more "normally". (Maybe normal is to strong of a word... Normalcy is a far cry from where we will be, but at least we will be closer to a cancer maintenance "normal".) She will have clinic and iv chemo next week, and we should hopefully know then how her counts are doing, and if she is maintaining like the doctors want her to.Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-13194036349506112402013-06-14T07:28:00.001-07:002013-06-14T07:29:56.943-07:00Jordyn's VideoSorry I am kind of late posting this... I haven't been feeling the greatest so I hadn't worked on it like I had hoped to. Here it is!
<a href="http://youtu.be/2o17dLuLhfc">Jordyn's Video</a>
<iframe width="560" height="315" src="http://www.youtube.com/embed/2o17dLuLhfc" frameborder="0" allowfullscreen></iframe>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com1tag:blogger.com,1999:blog-2384337536662264385.post-16346174442528818692013-06-06T11:28:00.002-07:002013-06-06T11:34:01.320-07:00Sorry I haven't been posting muchI have been doing more updating on the facebook page if you are interested in checking it out. Here is the link again: <a href="https://www.facebook.com/pages/Jordyns-Journey-to-Triumph-over-ALL-Acute-Lymphoblastic-Leukemia/525730070799917"></a> We would love more fans on there as well, so spread the word and get people to like her page! Please, and Thank you!
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Jordyn had an appointment and her counts were still low (ANC 400), so she has been taken off chemo pills for 2 weeks at least until her counts come up. I worry when she is not on chemo, but at the same time, I adore it! She has so much energy, and I swear, I hear her giggle in those times so often it makes my heart happy. She really just isn't as happy when she is on chemo, and she definitely doesn't have as much energy. It is hard though because it gives me little glimpses at my child as an almost normal child that she hasn't been able to be for almost a year.
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Jordyn and little Jeremy both managed to catch a cold this week, and now I am coming down with it as well. We got out more than we probably should have and now we are dealing with it. Hopefully they get better soon. They both sound completely miserable, this is a bad cold... Thankfully Jordyn has yet to spike a fever, so no hospital visits yet. Fingers crossed it stays that way....
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Jordyn made her wish, if you care to see the pics from that, check them out on facebook. They are pretty cute I think!
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This next week is going to be a hard one on me, I think... Jordyn's anniversary of her diagnosis day and her crazy week last year is coming up... I think I am going to be a complete mess this next week... It was exactly a year ago today that I started having a really bad, foreboding, worried feeling about her. She was admitted on the 9th, and she was diagnosed on the 12th.
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I figured a fitting thing for this blog post was to share some of the old pictures from this last year of some good and bad times she went through.
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I am also going to try to finish up her latest video by the 12th to share with everyone on here and on facebook.
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src="http://2.bp.blogspot.com/-bsESyXccqWs/UTpmJ3dlkYI/AAAAAAAADV4/3kaabhwechg/s320/IMG_0297.jpg" /></a><br><br><a href="http://2.bp.blogspot.com/-D_bGBYkcWJ4/UWeIbyJDzLI/AAAAAAAADXY/XJDAKLc-koA/s1600/IMG_1641.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-D_bGBYkcWJ4/UWeIbyJDzLI/AAAAAAAADXY/XJDAKLc-koA/s320/IMG_1641.jpg" /></a><br><br><a href="http://2.bp.blogspot.com/-Vp89NbVPKCQ/UWeIc_w66_I/AAAAAAAADXk/MLlPfVZKd6c/s1600/IMG_1654.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-Vp89NbVPKCQ/UWeIc_w66_I/AAAAAAAADXk/MLlPfVZKd6c/s320/IMG_1654.jpg" /></a><br><br><a href="http://3.bp.blogspot.com/-_tJei6G5Eks/UWeIdJAPftI/AAAAAAAADXs/KshHO2ZMpzA/s1600/IMG_1649.jpg" imageanchor="1" ><img border="0" src="http://3.bp.blogspot.com/-_tJei6G5Eks/UWeIdJAPftI/AAAAAAAADXs/KshHO2ZMpzA/s320/IMG_1649.jpg" /></a<br><br>><a href="http://1.bp.blogspot.com/-LQBxE6zxP0s/UYmiwkOOXGI/AAAAAAAADYk/UabI3WO-N2I/s1600/IMG_2402.jpg" imageanchor="1" ><img border="0" src="http://1.bp.blogspot.com/-LQBxE6zxP0s/UYmiwkOOXGI/AAAAAAAADYk/UabI3WO-N2I/s320/IMG_2402.jpg" /></a><a href="http://2.bp.blogspot.com/-3XhWlFATnPE/UYmiwJ4MAuI/AAAAAAAADYg/KdYW8_rZGss/s1600/IMG_2367.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-3XhWlFATnPE/UYmiwJ4MAuI/AAAAAAAADYg/KdYW8_rZGss/s320/IMG_2367.jpg" /></a><br><br><a href="http://2.bp.blogspot.com/-N3U6N7ptLkw/UYmoK6MSO7I/AAAAAAAADZU/ddLVYve-P5Y/s1600/IMG_2064-3.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-N3U6N7ptLkw/UYmoK6MSO7I/AAAAAAAADZU/ddLVYve-P5Y/s320/IMG_2064-3.jpg" /></a>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-43341076719401606712013-05-07T18:33:00.000-07:002013-05-07T18:33:09.030-07:00Clinic and other thingsIt has been a fun, crazy, busy month since I last posted.
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We took the kids to the dentist. Jordyn got her teeth cleaned, and then she held Jacob's hand and my hand when we got our teeth cleaned and told us it was going to be okay.
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Jordyn was hospitalized because she had a fever. On a Monday, she had a fever, so I took her to clinic. Her counts were okay at anc 800, so we were able to take her home after some iv antibiotics. The next day she still had a fever, so we took her to the er, and her counts had dropped enough that they admitted her to the hospital. It ended up being a three day stay, and we came home with her on iv antibiotics. When she was admitted, they had us put her chemo pills on hold until her counts recovered. It was almost two weeks that she wasn't getting chemo. By the end of that time, she had sooo much energy. I sometimes don't think I always realize how much energy and life the chemo sucks out of my child, and this was a reminder of that.<br><br>
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We had agreed to do Hyundai Hope on Wheels at the Salt Lake City Marathon that Saturday, so I was super nervous taking her out because I knew her counts were low. It ended up being pretty fun, even though it was super rainy. Jordyn got to put her hand print on two art canvases and one of the doctor's lab coats. They tried to get pictures of her and some video, but Jordyn was being really shy and just tucked her head into my shoulder.
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<br><br>We got our little family's picture, and we were also able to talk with a fellow cancer family. It was really nice to chat with another cancer mommy.<br><br>
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Jordyn recently had a dance recital. It was fun, but definitely a bit nerve racking for me with there being so many people there. She was super cute, and she had a lot of fun on the big stage, and I am really proud of her!
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I uploaded a video of it to youtube. The quality didn't stay what it was on my computer, so it is kind of hard to see as well as I would have liked, <a href="http://www.youtube.com/watch?v=AWaG-1fEk9w">but here is the link</a> if you are interested in watching her do her dances.
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Jordyn was pretty excited last week when it snowed and she was able to make a snow man.
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Thursday was clinic. They had her start up on her chemo pills again, and they plan to check her anc with home health in 2 weeks to see where she is at and how her immune system is holding up with the same dose they had her on that made her drop the first time. Jordyn really wanted to wear one of her princess dresses to clinic, and I let her. She got so excited every time someone said something about her dress.
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Jordyn was SUPER brave that day. Usually, Mommy holds her on her lap when she gets accessed (poked with the long needle), but I was able to talk her into letting me hold her hand instead so that I could take a video for her uncle that he had requested of her getting her medical like stuff done. She did so good and was sooo proud of herself and she just knew uncle Jon would be proud of her too.
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She played iwth green snow while we waited for her chemo. She also got the purple crown she is wearing that day in clinic and has worn it pretty much every day since then.
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One of Jordyn's amazing angels sent her some fairy dust, which she was super excited about. (She is always excited to get anything in the mail, especially from her lovely angels) We did a mini photo shoot of her playing with it outside.
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I never thought that maintenance would be as stressful as it has been on me. It is really strange being in this place where we are kind of in between cancer and normal. She is doing pretty well. Since starting her chemo again, she has been pretty tired lately, but is hanging in there. Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com3tag:blogger.com,1999:blog-2384337536662264385.post-27030964602378515492013-04-11T21:31:00.001-07:002013-04-11T21:31:51.754-07:00FINALLY a new blog post!!! (and lots of my rambling thoughts....)Sorry I have been such a slacker on the blog lately... I have just been in kind of a funk lately and haven't really felt like doing it... I don't really have a good excuse, other than not wanting to... Feel free to skip my rambling if you would like and jump to the part that starts "Her last appointment..."
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For some reason, this month has been rough on me. Part of it, I think has to do with Jordyn and her steroid meltdowns which are hard because they turn her into a much different child. When she isn't having a meltdown, she is still a wonderfully amazing child. In fact, today, I asked her if she was my messy little monster, or maybe a messy little monkey, and she responded, "No, I am just your sweet little girl!" and proceeded to give me a big smile and a hug. It was pretty cute. Also, Jordyn's little brother has been having a hard time sleeping lately as well, which adds to the stress. He keeps falling out of his toddler bed, and I trying to decide if we can really afford to get him a larger bed that is harder to fall out of. He often ends up on the floor when he actually goes to sleep. I also think a lot of the stress is from everything we have went through that I haven't really allowed myself to process and it is finally creeping out. I am also realizing now that we are almost in a position that we can do more things, I find that we have missed out on a lot and may be at the point where there isn't anything to do or anyone to do it with. I think that throughout her treatment, I have occasionally reached a point where I just lose track of time and am unable to communicate with people like I should as a result of everything. For example, I get really bad at responding to messages and comments... Sorry if that has happened to any of your messages or comments... Sometimes that just seems like too much to deal with, and gets lost in everything...
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Anyway... I wanted to say thank you again to everyone who has helped us out in any way. I get so caught up in everything that I feel like I am never able to completely express to everyone how incredibly thankful I am, we are for how many blessings and service we have received that has helped us get through this, and sometimes just survive. I want to thank people who have written to Jordyn, sent her packages, prayed for her, helped with fundraisers, told us they were thinking about us, prayed for our family, been amazing angels to her (really really appreciate this one, more than you could ever know! Thank you all!), liked her facebook page, given us hugs when we were at our breaking points, babysitting Jeremy and occasionally Jordyn when I need to get out of the house or when Jordyn has chemo, been a friend and talked with us, brought us meals, sent us cards, volunteered to help, done anything to spread awareness for childhood cancer, my fellow moms who have cuties with cancer (don't know what I would do without them... They are some of my best friends, and most of them I have never even met in real life), people who have fasted for Jordyn and our family, who have given Jordyn and I priesthood blessings, read our blog, and anyone else who has given of your time or resources to help us out and serve us. We are so grateful, and I know there is no way to ever repay all of the kindness we have received. So Thank You All!
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Anyway... On to Jordyn...
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Her last appointment was a bit of fun and a bit of stress. I have been noticing that the way she walks and especially the way she runs has changed and is way more stumbly than it used to be. We had an early physical therapy appointment to go to because of a clinical trial she is in that is supposed to help determine the effects chemo has on children short term as well as long term. The physical therapist says Jordyn is pretty strong and very smart, but noticed the same thing I have been noticing when she had her run. They had her run for 6 minutes and measured her tiredness and how far she was able to go, but also watched how she ran. There were a bunch of times near the end that she just about ran into the wall, and at the very end she stumbled to the floor. It was definitely a big change from how well she did last time she did this test which was sometime before her delayed intensification she had in December which was completely awful chemo. The chemo she gets at clinic now is Vincristine and it is known to cause problems with kids and how they walk. They don't worry about it usually until it gets really bad, and at that point they look at alternatives to the treatment plan. There are some kids who have lost the ability to walk with this chemo... Thankfully I think Jordyn won't get to that point.
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These first few pictures are of part of her physical therapy appointment.
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She was so happy the therapist let her play in this car for a minute, but not so happy to have her pic taken...
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It was one of the longest breaks we have had from clinic before and so Jordyn was pretty anxious and scared about it, especially her poke...
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Here she is getting her chemo. She was so glad they had otter pops this time.
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The next two pictures are of the medicine she took all at the same setting just in different backgrounds... This doesn't include the morning steroid dose, or the iv chemo she got that day...
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Jordyn has gotten to the point where she doesn't even need my help with her daily medicine, just her Thursday meds that there are way to many of. She does pretty amazingly for a 4 year old, if I do say so myself!
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Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com3tag:blogger.com,1999:blog-2384337536662264385.post-18757699001293076582013-03-08T14:58:00.000-08:002013-03-08T14:58:20.029-08:00Maintenance... We are finally in Maintenance! That is wonderful because it means we can do a few more "normal" things. Jordyn won't have to be as isolated, and that will be really nice. The reason for this is because her immune system is supposed to stay in the range where it can fight off infection better, where her last chemo treatments severely dropped her ANC (Immune System)and made her more likely to catch something if she was anywhere near someone with an illness. She will still have to go to Clinic or the Emergency Room every time she gets a fever though, and will still be hospitalized if her counts are low and she has a fever which could happen because of low counts or from an illness.
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I am actually kind of nervous for this phase because even though everyone says it is easier, I don't know what exactly to expect, and it lasts A LOT longer than the other phases, and she has to take WAY more pills, including a daily chemo pill, 5 days a month of steroids, and a super high dose of another chemo once a week, as well as going in once a month for chemo, and every three months for a lumbar puncture. So, I am hopeful that she handles this phase of treatment well.
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I also think it will be a bit nerve racking taking her out in public again because I am now a germaphobic person. Every time someone coughs, sniffles, or sneezes I panic a bit inside because you never know what kind of infection the person may have and certain infections can be deadly to my daughter if not caught soon enough. Hopefully with spring coming up, we will be able to continue to keep her from getting sick and keep her out of the hospital. Fingers crossed.
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Jordyn's first day in maintenance didn't exactly start out very well... She had really wanted to bring a little red purse with her jewelry in it to clinic, and we forgot it. She was way more upset about it than she ever usually would be. I think she has just been kind of down overall lately... I have been noticing that she doesn't smile as much and she gets cranky more often. She is feeling some of the impact of all that she has been through I think. This is the third time in treatment that she has been pretty depressed. The first time she quite talking for 2 weeks, the second time was in Delayed intensification when she couldn't stop throwing up and feeling miserable. She seems to be handling her downs better and better, but it is still so sad to see her so unhappy... She was mad at me for the first time since she was at the start of treatment.
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This is when we first go to our room in clinic yesterday... She was hiding because she was sad and kind of mad too.
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Most of the time she was like this, so I couldn't see any of her face.
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It took some convincing to talk her into taking her jacket and shoes off to get her vitals...
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She took her jacket off...
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And she warmed up a little and started feeling a little better...
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And then she actually looked at me.
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We finished clinic, and then she had to go to the RTU (Rapid Treatment Unit -I think anyway...) and she was kind of upset again. She is really not too fond of hospital naps.
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She was really not happy about her spinal tap she was about to have...
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I was able to get at least one smile out of her though!
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Here she is under general anesthesia.
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Her absolute FAVORITE part of her hospital visits is getting to play on the RTU's Ipad. She really does always wake up sad because it is gone. The child life specialist felt really bad and so she brought it to Jordyn when another kid had finished with it right before we left to go home. Jordyn was sooo happy!
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Just waking up from anesthesia...
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She wanted barbeque potato chips.
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We started some seeds today. The kids loved taking turns pouring the water of the little pellets and watching them grow. I liked it because it helped them learn more how to take turns... ;)
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I figured it may be easier to update smaller things that are going on with Facebook because it is less of a process. I still plan to use the blog as well, but the Facebook page will supplement between the larger posts on the blog. Since she is almost in Maintenance, the blog probably won't be updated as frequently because Jordyn won't have to go in as often to get chemo.
<br><br> Oh, and for those wondering, she is doing wonderfully at the moment. She is a little tired, but feeling okay.Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com1tag:blogger.com,1999:blog-2384337536662264385.post-35981553989451656432013-02-21T15:05:00.003-08:002013-02-24T22:17:34.719-08:00We are getting close...Today was the last chemo in this current phase of treatment... This means, that if counts are good, Jordyn will be starting Maintenance in two weeks!!! This means her chemo regimen will be changing fairly drastically (in a good way!)
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She still gets really scared when we go to clinic. I actually think she may get more scared now than she used to.
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On the way home from clinic, Jordyn told me, "Mommy, I don't like going to the doctor. There are too many scary parts..."
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This is one of the scary parts that she hates. She doesn't like getting poked, and is terrified every time... Here is a picture of her port accessed before the bandage was put on to keep the germs out.
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Toys help her to be brave.
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After those scary parts are over Jordyn is much happier and she told me she was this happy face on the scale. She tends to read it more as an emotion scale than a pain scale.
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She likes to sit in my lap when she is scared. She seems to think that Mommy can make things less scary.
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This is the doctors notes on how her maintenance chemo will work. She will get Vincristine 1x a month, a lumbar puncture only every 3 months with interthecal methotrexate(rather than monthly), 5 days a month every month of steroids, 6MP oral chemo every day till she is through her treatments, continue antibiotics every Monday am and pm and Tuesday am and pm, and 1 oral methotrexate every week.
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Roxy came to visit the clinic today.
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She danced for Jordyn.
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We all thought it was pretty cute that Jordyn and the dog matched!
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Jordyn is still seeming to handle the methotrexate really well. Her body has begun adapting pretty well to it, and the medicine we have her on for nausea has been a huge help in keeping her from being super sick. She is super tired today from chemo and from a busy day we had yesterday, so she is taking a nap. I have my fingers crossed that she does this well in maintenance! Cancer will still be a huge thing in our lives, but we can start gradually doing normal things and will be able to leave the house more often(although, normal as we once knew it will never return or be the same)...
Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com1tag:blogger.com,1999:blog-2384337536662264385.post-34383424778542107362013-02-13T09:04:00.002-08:002013-02-13T09:04:58.030-08:00The Strength of an Egg by Juliet FreitagThe Strength of an Egg by Juliet Freitag
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Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock". Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make. An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even slightly different angle will break . The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.That is where parents of with cancer (or other serious conditions) are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer (or other serious conditions) will pick themselves up and put themselves back together again.Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-51814616534158478282013-02-11T15:57:00.001-08:002013-02-11T15:57:51.029-08:00February ChemoJordyn had chemo today... More vincristine, and more methotrexate... (I think it was a whole 50mg(?) more...) She had clinic and chemo first, and then she had an lp (lumbar puncture aka spinal tap). I was nervous because it usually takes about 3 hours for the extreme nausea to set in, and in the past we have been home usually when that happens, and we didn't bring her reglan with her. Also, I was nervous because she had to go to same day surgery again instead of the rtu... That is never fun, and always more scary, and always seems to take longer. Plus, the waiting room is full of people who are coughing, sneezing, blowing and picking their noses... (All kinds of not fun, could be scary if she caught them germs...) We actually waited in the hallway outside of the waiting room because I could not let her get exposed to all of those people, even if she had her surgical mask on... I was able to take her further than I usually do when she has it done in same day surgery. She was almost to the or when I had to leave. She wasn't scared though... She found a little trike that she LOVED in the hallway, and they let her ride it all the way from the waiting room to her operating room. She was so sad when she woke up and was ready to go only to find out she couldn't ride it out... (She isn't supposed to do anything that takes balance or coordination after her lp's because she is put under general anesthetic, and I also personally know she gets VERY tipsy and wobbly after them and doesn't realize how close she is to falling over. By the time we got to the car, she was starting to look like she felt pretty yucky... (Thankfully I had clinic call down a refill for her on her reglan, so I was able to give it to her in the car before we left) She looked and felt completely miserable the whole way home. She was so nauseous she couldn't talk and was pretty sure she would be sick. Again, THANKFULLY, her medicine kicked in and about 10 minutes after we got home, she was feeling A LOT better and less yucky. I think this dose of chemo might be the kicker though... She is back to being tired and not feeling very well now. She is taking a nap right now, so hopefully she can sleep some of the yuckiness off...
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Getting chemo and reading a book
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Reading an under the flap book
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Jordyn happily riding the trike around in the room right before the OR's.
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The same day surgery waiting room... I was bored....
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A ceiling tile in the same day surgery waiting area
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And Jordyn is out and awake from her lp. This is in the recovery room. She enjoyed watching Mickey and another show.
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She said she felt okay, but she usually doesn't admit she doesn't feel very good until she feels pretty terrible. She was flushed and I don't think she felt well... The look on her face definitely doesn't say happy to me, it says I feel horrible...
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They had left the trike at the end of the bed, so that made it extra sad for her since she saw it but couldn't ride it. (I really don't think she felt good enough to ride it anyway though...)
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All ready to go home!
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<br><br>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-27756989474465060652013-02-11T15:57:00.000-08:002013-02-11T15:57:43.048-08:00January 30 ClinicJordyn's last clinic and chemo went surprisingly well. She didn't even throw up once. I was amazed. She gets zofran about 15 minutes before chemo, and usually that isn't enough. Thankfully when we were inpatient for that, we also got a prescription for reglan. That, paired with benadryl and alternated with the zofran every three hours has been something that I am extremely grateful for. She did so well last week, Jacob wasn't even sure she got chemo! (She did...) Hopefully she holds up so well next time, since in the past the methotrexate tends to do quite a number on her for a few days or so.
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We just arrived to clinic in this picture. She wears a mask to go into the hospital to keep her safe from germs in the air.
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Lately her favorite thing to do in clinic while we wait and get chemo is to have mommy read her books or to look through the pictures on her own.
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This is one of her least favorite things about clinic, believe it or not... She is getting her blood pressure taken here. She has a hard time holding still enough while they do this, and so when she wiggles, the machine squeezes her arm tighter, and it hurts.
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Here she is waiting nervously for the nurse to come in to access her port... She used to do really well, and she still does, but she is a lot more frightened about it than she used to be since that unfortunate asleep poke when she was inpatient.
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I got her this real purple stethoscope off of amazon for $3 or $4 dollars, and she loves it. I cut it to the perfect length for her so it dangles perfectly over her neck. She wanted to bring it with her last time, and it was forgotten and she was so sad, so we made sure to bring it this time. She feels pretty special having her very own in her very favorite color.
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I decided to show a picture of her port before it was accessed so you can see what it looks like most of the time if you were curious. My finger is in the picture so you can kind of get a size comparison of how big it is and how much it sticks out from her body.
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Jordyn and the child life specialist were trying to find her my little pony's or littlest pet shops for her to play with while we were there.
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Here she is waiting for the doctor to come in.
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This is the look she gave when he did come in... (She still gets nervous just about every time we come to clinic)
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Nerves...
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Oh the joys of checking for mouth sores... She also doesn't like this part...
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Even though she gets nervous, she really does love her doctor and he is great with her. They are actually playing with pony's in this picture (you can see the pony's in the bottom of the frame kind of...)
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Sometimes for kids to be comfortable, you have to be willing to be silly sometimes! The best children's doctors know this, and happily comply.
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Ready to go home, but not ready to say goodbye to the pony's...
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A cheesy mom, do you really expect me to look at the camera face. She decided to look, but wasn't up for the smile I asked for at that moment. Oh, and she made a pipe cleaner necklace.
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Getting chemo...
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<br><br>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-29127404308997621312013-02-03T14:41:00.001-08:002013-02-03T14:41:27.934-08:00Happy 4th Birthday Jordyn!!!Jordyn has been really looking forward to this day for a REALLY long time. I can't believe my baby is 4!!! We all love you so much!!! Happy Birthday from Mommy, Daddy, and Jer! I hope we are blessed with many more years and many more birthdays with you sweet girl! You are one of the strongest, bravest, most amazingly sweet and caring people I know. (I am including adults I know in this as well, which makes you an even more incredible kid!)
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Happy Birthday Little One!Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com2tag:blogger.com,1999:blog-2384337536662264385.post-42416756761920990252013-01-23T12:02:00.001-08:002013-01-23T21:48:20.360-08:00January 22, 2012Jordyn said something to me last night as she was picking her nose that I found kind of funny. First she said, "Sorry I am picking my nose, I am trying to get a goober out of it" and then she said, "But it's okay, that's how God made us, with goobers in our noses."
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Jordyn and Jeremy love the dog bed more than our dog does I think. Jordyn thinks it is hilarious to lay in it. She is also wearing one of her favorite dress ups in this picture... We got this costume for Jer, but Jordyn has kind of claimed it even though it is super tight on her. She is Jake from Jake and the Neverland Pirates on Disney Channel. (We don't have that channel, but she saw it in the hospital when she was inpatient once, and now she occasionally watches it on YouTube...)
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Here is Jordyn at her clinic appointment yesterday. You can see the hat tree in the background.
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This is Jordyn on her Daddy's lap. Her wonderful oncology doctor is looking at her port site to make sure all is well. Jacob hasn't been able to come to many of her appointments, so it was good for her to be able to have him there. Usually if he isn't working, he watches Jer so I can take her. I am very grateful he does that.
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Jordyn was so sad in this picture. She asked Jacob the night before if she could bring her "telescope" (stethoscope-I always make sure to use the correct word when I talk to her, but I do find her word for it cute) to clinic and he told her she could. They both forgot to bring it, and so Jordyn was sad when she saw the stethoscope in the office.
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Jordyn was sad, and she pointed to the #10 face and told me that was how she felt at the moment...
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Jordyn being silly. Since she was diagnosed, she has started putting things she shouldn't in her mouth again. One of those regression areas we are working on, especially because we don't want her to put something in her mouth and get sick from germs on it.
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This is in the infusion room while Jordyn is getting her chemo. She got methotrexate and vincristine. The methotrexate takes a bit to kick in with her, but when it does, she is usually pretty miserable for a few days.
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Mommy and Jordyn
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The nurse preparing to administer Jordyn's chemo.
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Jordyn was feeling okay yesterday after the chemo, but it usually takes some time for the yuckiness to kick in. This is after we got home, and before she started feeling sick and everything... These pictures crack me up.
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Jeremy loves his big sister sooo much. He wants to be just like her. (Sorry for the diapered kid... I swear I dress him in clothes, but he takes them off A LOT. I think most of the pics I post of him on here are like this...)
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<br><br>Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-28521021927835733952013-01-23T11:31:00.002-08:002013-01-23T11:31:22.913-08:00Thursday January 10th chemo and LPI am so late in finishing writing about this and actually publishing it, but life gets kind of crazy here in cancer world sometimes... Anyway...
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Jordyn's LP was in outpatient surgery last time, and that means I was unable to carry her back like I usually do until she falls asleep when it is done in the RTU. While we were walking in to the hospital, I explained this to her, and she said to me something to this effect, "It's okay Mommy, if you need me, I will always be in your heart!" She is such a precious little soul. She often says things that show me wisdom beyond her years.
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Jordyn is getting D5 which is an iv fluid with sugar in it. Jordyn has a problem with her sugars dropping and that condition actually makes it so she is not supposed to go longer than 8 hours without food. It has been rough making her fast, and hoping she is okay because for the cancer treatments she has to fast. This was the solution the doctors came up with. She gets d5 before her lp's so that she hopefully doesn't drop her sugars too drastically.<br><br>
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She asks for animals frequently. Those, or if we are in the RTU for her lp, she LOVES to play with the IPad they have. She goes to sleep playing games on it and wakes up sad that it is gone.
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Here is Jordyn after her LP. She is hurting, but still made the nurses and techs laugh. One of them had a phone that played some music, and Jordyn requested that they kept singing to her, and so they sang for her. Everyone told me how adorable she was and one nurse even went out of her way to tell me.
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Jordyn wanted to ride in the wagon up to clinic to get her iv methotrexate chemo. She layed down because her head hurt so bad and her back did too...
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It took her a few days to feel okay after the lp... It was so sad seeing her feeling so terribly... She was throwing up from the methotrexate during those days*/, and of course that made her back hurt worse also because she couldn't just lay flat on her back at those particular times...
Jessicahttp://www.blogger.com/profile/15500102735725435402noreply@blogger.com0tag:blogger.com,1999:blog-2384337536662264385.post-74179442653574002372013-01-14T06:44:00.001-08:002013-01-14T06:45:17.036-08:00LP painsThis morning I awoke to Jessica's alarm, but when I went to tell Jessica to turn it off she wasn't there. After gaining some orientation I went to Jordyn's room. Jessica look uncomfortable as she slept in her room. Jordyn had waken up in the middle of the night again crying because of the pain in her back from the LP. She cried mommy, mommy, mommy. So I tried to help, but she just wanted her mom. I was fine with that, because I wanted to go back to bed. Yesterday we did not give Jordyn any nausea meds, and she only throw up twice in the morning, so I am hoping this is behind us for this dose at least. The kids love all the cards and toys that have been sent. I huge Thank You and a Hug for all the support! Here is Jordyn and Jeremy playing!<br />
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Jacobhttp://www.blogger.com/profile/03837095767481849954noreply@blogger.com2