Jordyn's Journey to Triumph Over ALL (Acute Lymphoblastic Leukemia)

Tuesday, September 30, 2014

Jordyn is doing really well at the moment

I 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.

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.

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.

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.

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...

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.

Thursday, July 10, 2014

Final 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.

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!

Thursday, May 8, 2014

Finally 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.

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).

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!

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.

Wednesday, December 18, 2013

Fun 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.

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.

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.

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!

Thankfully we got some fun out of it! Roxy the therapy dog visited while we were there, and Jordyn absolutely loved it!

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!

We had a church ward Christmas party/breakfast on Saturday. It was yummy and gave the kids another opportunity to see Santa!

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!

We went to Temple Square to see the lights with my little family, my sister, my mom and dad. It was cold, but pretty!