Interim Maintenance- Day 10

I feel very blessed to be able to do some of the chemo treatments in STG. We had the entire thing arranged.. had her CBC drawn at home (w/Grammy cause mommy was at work) on Tue... if counts were good enough (above 750) we would increase the Methotrexate dose by 50 mg. Her labs came back...

ANC 1400

Plts 279,000

WBC 4.1

Hgb 11

Hct 31.3

Wednesday morning we headed to Marsden's office, which Taleah was very excited about. He checked her out and thought she looked great. She even ended with a hug..she loves him.

Then, we headed to 400 E campus for the chemo. They had to do a bilirubin test before we could get the methotrexate. That resulted in a little extra time. Taleah was much more relaxed.

waiting to be accessed...

There were no tears while accessing the port. She was a little apprehensive, but did pretty good. She seemed more concerned about it coming out. She was given supplies to give mommy chemo... Taleah was a great nurse.

She was so brave the whole time we were there. While waiting for the methotrexate, she took a walk with nurse Heather to get some snacks. She didn't need me anywhere near her. That was a huge step. It was a bittersweet moment. It made me pretty happy though. She really is getting used to it all.

It ended up being a 4 hour process. Beats driving to SLC though. I am very grateful!!!

So far, she has only complained of her tummy hurting. I snuck a little zofran in some grape juice. She hasn't eaten a whole lot since the chemo, but she is drinking a lot. Last time it was the day after that was rough, so we will wait and see. Good thing we are done with medicine for the week. YAY!!! I will admit that I am nervous about the increased dose (her vincristine was the same amount she has been getting). I know it is good for her to receive the most possible, but it still makes me nervous. Now... we wait 10 more days to do this same thing again... in STG. The visit after that will be in SLC. It all depends on those dang counts!

I keep hearing of these kids that are relapsing and it breaks my heart. I feel for their families. It makes me even more anxious for my little one. I know it does me no good to worry about the future which I have no control over...but I still do. Life is so unpredictable!! :)

I am constantly amazed at the good people we are surrounded by. People I don't even know are willing to help and they do. So many things, events, fundraisers have happened/are happening in her behalf and it melts my heart. It means a lot and makes this easier. We feel the love every day.

Interim Maintenance- Day 7

This week has been ok so far. There were a few rough days and moments. Slade being sick didn't help matters. I think the sleepless nights, ornery baby and on and off sick Taleah made for an "on edge" mommy. She mostly complains of a headache but I am not sure if that is her only way of saying that her body hurts. It honestly breaks my heart. I hate it. There was one moment when both kids woke up from their naps, not feeling well and wanting me to hold them. It sounds like no big deal, but in the moment I was on the verge of tears. I know it is going to get harder, but watching any kind of suffering sucks. I guess after having a pretty good month, it is hard to go back and watch her suffer. She has had a runny nose but luckily not as bad as her brother. I worry that her immune system is fighting so hard to beat this cold that she won't make counts for this upcoming chemo treatment. We are supposed to get her CBC tomorrow, but I am going to try and shoot for Tue so we can have our home health nurse. We are scheduled for chemo on Wednesday in St. George.
I did have a moment on Saturday night. We headed to a baptism of a niece and had to leave Taleah in St. George with my dad. She loves these cousins and would have LOVED to be there. When we were singing the closing song, I was emotional. I hated that she couldn't be there. I hated that it seemed like she didn't exist.... even though it wasn't like that. I guess I just hoped that she could have gone, but it wasn't worth the risk of being by sick people. Looking back now, she may have been fine but that is the hard thing about those kind of situations. I know it is going to be like this for quite some time and I just need to accept it, but it was still hard. I wanted my entire family to be together, but instead I had to leave her while we enjoyed some good family time. I guess the good thing about it... she doesn't really understand. She was having a great time at my parents. It is good that she isn't old enough to know everything that she is missing out on.

Over the weekend, I was able to meet a few more cancer moms. They are all amazing. It was great to talk to them and see where they are at in treatment. Some cancer free for 2+ years, some still in treatment and some almost done with theirs. One mom was actually talking about planning their "end of treatment" party... I couldn't even imagine what that was like. It was great to be able to talk to moms that really understand. Cancer changes you and they really know what it is like. They have been there and it feels good to relate. However, it was great to see how they did it, have done it and survived. Gave me some hope.
Anxious for this week and how it will turn up.
Life is still coming strong. Staying busy.
Thank you for the prayers. We feel it everyday.

Medicine Sucks

Medicine sucks.

Cancer sucks.

I worked all day after arriving home from SLC the previous day.

While working, I get updates from my mom on Taleah. She is not feeling well. Slept in late. Took a nap. Not much energy. I HATED that I wasn't there to take care of her.

After work, I have both kids. She is pretty needy and so is Slade because he didn't nap much throughout the day.

I did come home to dinner on my front doorstep and I have no idea who it was from. I was so thankful because I had no idea what I was going to do for dinner.

I did my best to keep both kids happy. It was difficult.

After putting Slade to bed, I attempted the medicine routine. It usually takes anywhere from 10 min to 1 hour.

Tonight we set a record.... 2 hrs and 40 minutes. I was on the verge of tears, there was crying and yelling, puking, pinning down, negotiating, stalling, crying and crying. I HATED it. I know she didn't feel the best. I was the "bad guy" and tried to force it. Scott arrived after the first 45 minutes had passed and he tried being the bad guy. Nothing was working. I wish she could know that I was actually trying to help her, but that's not the way it is. It sucked SO bad to look at her and know she doesn't feel good and FORCE her to take this stuff that she knows is going to taste bad. I can't even count the amount of times that she told me it was going to taste bad. And she was right... it does taste bad. I tried explaining that she has to take it no matter what. Not sure she gets that.

After the puking mess, we put her in the shower. I finally got her to take it by threatening to pin her down again. That's horrible. Her sad face and words of fear just about ripped my heart out.

I hate the medicine. I know it is good for her and is saving her life, but it's rough. Exhausting...physically and emotionally.

Instead of unpacking, laundry, dishes, picking up and playing with my kids... I had to fight my daughter for almost 3 hours. It was not one bit of fun and I felt like I was torturing her. Isn't it enought that her body is feeling terrible from the new chemo? Isn't it enough to endure what this Leukemia has already presented.? Other kids were probably playing and enjoying their evening home while we were screaming, yelling and puking at this household.

Medicine can really suck.

So can cancer.

Above all of that, we have been blessed and spoiled by many people. Even on days like today, it doesn't go unappreciated. Thank you everyone for doing what you can to make this easier on us.

Pre-Halloween(this was supposed to be after the Halloween post)

We were trying to enjoy our last little bit before the next phase. There was a cheer Halloween party at Grammy's (outside).... so we went for a minute. She was excited to dress up with Kendall.

They decided to join the kids for dinner...at their tables.

Not shy at all!


We actually got to hang out that night for a minute. Scott's parents kept the kids while we went to dinner. We could eat and talk. Unusual!

Best group shot.. for real. Pretty cute though!

Interim Maintenance- Day 1 (Halloween)

It felt like forever, but it was only 2 weeks since we stayed at Treena's. It never fails.. always a party. She was so excited to wake up and NOT fast AND to see the kids in their costumes. We arrived at 11:00pm Sunday night, woke up at 6:30am, left for clinic at 7:15am and arrived at 8am.

We had our costume change in the lobby. She was very excited!







She walked in without total fear in her eyes. It may be because she knew she didn't have to go to the RTU.

She has been reviewing some pictures of Chase at clinic and I pointed out that he does it all by himself. So she went ahead and did it... pretty much. You could tell it was hard for her but she wanted to do it.

*weight 31 lbs*

(up 1 pound from diagnosis)

Acessing the port, always one of the hardest. She doesn't love it. Well, she doesn't love the cleaning and the bandage that goes over it. Not many tears though. It's getting easier.

They didn't do a CBC because we had one on Friday. They did some kidney and liver function tests and her liver enzymes are a little high so we are going to watch those.

Waiting for the chemo takes the longest. She was enjoying herself though. Matthew was there to play with and she loved it. It was crazy to see her walk around, dance and be herself while we were there. She is usually clinging to my side. I never thought this day would come.

Thumbs up for chemo. Keeping that Leukemia away!

We didn't have an appt in the RTU but she wanted to see Miss Lindsey (child life specialist). She loves her. They even hooked her up with a treat bag.

All done... and thrilled to be going home!

Luckily the drive home was pretty uneventful. We made it home in time for some festivities. I didn't want to take her out and put her hand in the bowls with LOTS of germs. We did our own thing... and I think she liked it!

Someone had mentioned a while back about a fun/less germy way to do Halloween. My mom provided all of the candy/prizes. We invited Chloe over to go trick-or-treating "Taleah style". All of my siblings dressed up and went to different rooms throughout the house, the girls knocked and received a prize and candy. It was so fun and exciting. She LOVED it! She loved taking pictures with the people at each door as well. Chloe was taking it all in (people/noise overload), but I think she secretly loved it too!! Her mommy said that it was all she could talk about when she left. Good thing Taleah has good friends to help her feel normal!

Slade had to try on the Rapunzel hair... he pulled it off after 2 seconds. Scott was proud of that!

(our attempt at a group pic... the kids were done)

I know I say this a lot, but I don't know what I would do without our families. They help us out so much. Scott kept Slade home while we went up to PCMC. I know it's hard on him when we leave because he wishes he could be there with us. We just do what we have to do. The Stevensons are always so great to take care of Slade. He loves being with them and it makes it so much easier on me! My mom is great to drive with us every time. It makes the trip so much easier in EVERY way. I know I could not do it without them. They are all so willing to help at any time.

We are ready for this phase. It is 56 days long, no at home meds (other than the septra 2 days a week), half of our chemo can be done down here, and it is count dependent. It may get tricky if she doesn't make counts every 10 days. Another lesson to just go with the flow..it's out of my control. Trying to keep the anxiety under control...patience.

We have learned a lot from this cancer thing. It does suck, but we are growing. Scott and I have learned a lot. It is hard on our family in so many ways, but we feel blessed to have thing the way they are. Sounds crazy, but we do.

Consolidation- Day 26

It has been so nice to have the week "off" from hospitals (minus Slade's). I have been trying to enjoy the last week of this phase. It has been pretty good. She has been awesome minues the onset of headaches this last week. It freaked me out to be honest. I didn't know what was causing them and they were happening randomly. She was eating, drinking, sleeping and taking the same meds she has been taking the entire month. After speaking the nurse at PCMC, she thought her hematocrit could be low. Some other moms said their kids get them occasionally. The sad thing was the fact that she didn't want ANY extra medicine. She would pretend it was gone to avoid some meds. It broke my heart every time she burst into tears and grabbed her head. It usually lasts about 10 minutes and then she is back to normal. I am still curious and wanting to talk to my oncologist about. Sounds like I am being overly cautious... and maybe I am.

Our week off has consisted of a lot. Texas Roadhouse did a fundraiser (by some co workers). I can't even tell you the love we felt that night. AMAZING! We felt love from friends, co workers, family and complete strangers. I wish there was a way to thank every single person that has helped us out but there is no way. I hope people know that we are extremely appreciative.

I have been more of an emotional rollercoaster this week. I have been having a bad attitude... over a lot of things. One night in particular was rough. Scott was gone (football play offs preparation), Taleah didn't want to take her meds, Slade was extra whiny, my house was a mess, laundry to be done and my body was tired. That says it all... terrible night. I had a lot of emotions that night. Unfair, scary, anxious, mad, sad... I had it all. I just kept thinking, "This just sucks!" Bad attitude... I know. It could be much worse. I am blessed. Just a moment, well really a night.... and kind of this whole week. I feel better now. One day at a time.

Taleah requested Chloe and Ashley to come over for the CBC (blood draw). I was apprehensive at first because (1) I didn't want Chloe to be freaked out if Taleah cried (2) I didn't want Ashley to be freaked out (3) I didn't want to make it harder for Nurse Jeanette. Turned out that it was a good decision. Ashley kept Slade from crawling on top of us. Taleah was pretty brave and hardly cried. We made it "exciting". Ashley distracted Taleah with lots of songs. Hmm... good thing Ash was there or I know we couldn't have done it. Also, Chloe watched intently as her port was accessed. She didn't even flinch. Glad we made it through.

WBC 2.7

RBC 3.47

Hct 31.7

Plts 265,000

ANC 1300

Good enough to start the next phase. Like I have said a million times.. I am really nervous. I hope she handles it well and doesn't have crazy side effects from the new chemo. They will be trying to drive her counts down without making her neutropenic... hoping that doesn't happen or we will be in the hospital some more. It's all part of the process... that's what I keep telling myself. Off to SLC!