Tuesday, May 20, 2014

Round 2... Done

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.
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.
 
 
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.


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!



 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.
 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.
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.

 
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.
 
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!
 
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.
 
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.
 
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.
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.
Cancer is no joke.
 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 not 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.
  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.
 
 
 
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.
Heavenly Father knows us and what we can handle. I need to remember that.


Sunday, May 4, 2014

Results

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.
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.
Don't get me wrong, she loved being home. Steroids at home are way better than steroids at the hospital.
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".
 

 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.


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.
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.
 
 
 
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.


Friday, May 2, 2014

Millie's Princess Foundation Run

It 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.
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 here

Millie's Princess Foundation would like to introduce the star of this years St. George run, Princess Taleah Stevenson.



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.

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.

video

 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 Together for Taleah


We want the Stevenson's, like Millie's family, to focus on their fight with childhood cancer… not the
financial fall-out from medical and peripheral expenses.  In doing this Millie's Princess Foundation will be hosting their first St. George run at Desert Hills High School on June 7th starting at 8:00 am.  You can register here.

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.

If you can not come, spread the word!  If you still want to help you can donate to the family by linking to their blog and clicking on the donation button.  You can like the facebook page, 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 $5 off your registration if you will share 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!!!