Consolidation- Day 23

Well, I was loving life because we didn't have to drive to SLC this weekend. We had Monday "off" of clinic. Don't worry, I still had an appt to go to for Slade. He had his stent removed from his urethra. Let's just say he has been much happier since having that thing removed. So my day "off" wasn't really a day off. Oh well.

Then, Tue morning I leave for work at 7am. Scott texts me by 7:45 saying that both kids woke up screaming. Taleah was complaining of not feeling well and Slade just cried especially when getting his diaper changed. Taleah then threw up (luckily they made it to the sink). I was a nervous wreck reading the text... did she have a fever... was she dehydrated... does she have the flu...? I called to make sure he took her temp and reminded him that she had to have septra this morning. Oh man. Slade calmed down and then Taleah threw up again. I hated not being there and having "control" over the situation. (I am slowly learning that I might be a slight control freak)

It's kind of bad to think, but I kept thinking of every scenario. I just knew we were going to be admitted... and maybe we still will. I just have to be ok with the fact that if we do...we do. Anything to help her. I was running through every place(in my mind) we had taken her this weekend. We were careful and not in very crowded places....it consumed my every thought. We had kind of decided that we were still going to "live life", but be careful about it. This treatment plan is a long time to sit home and wait for things to happen. I began to think that maybe I was wrong. She is much happier and heals much quicker (I feel) when she can be somewhat normal.

She has ended up being ok today. She has eaten a fair amount, drank lots of water and played quite a bit. She has complained a few random times of her head hurting... I am guessing a headache or maybe the flu (but she had the flu shot). She has been herself for the most part and that puts me at ease.. for the most part. No temperature, but I will be watching closely.

We had a great time this weekend. The weather has been amazing so we have been able to get out and enjoy things. Taleah was in heaven with the fun filled weekend. And I must say that Slade was a trooper through it all (minus night time).

She has been playing a lot of doctor lately. Everything she says is something that she has done. I have been asking her a lot if her head feels ok and if she has a fever. I suggested tylenol at one point when she complained of her head hurting and she quickly dismissed the pain and wanted NO medicine. I am afraid she won't tell me when she is hurting for fear of additional medicine. Also, while playing pretend she says, "Aww I have a fever. Take my temperature." I immediately panicked and felt her head. She said, "Mom, I am playing pretend." I asked her nicely to not play that kind of pretend to protect my blood pressure/heart.

I guess I am becoming more anxious of the next phase. I will start reading blogs of other cancer cuties and see what we are in for. Sometimes it helps...sometimes it makes my anxiety worse. One of my biggest fears is Taleah not feeling "normal". I am afraid that she won't get the social interaction that she needs. I need to stop being afraid. I know that Heavenly Father has a plan for her. I know that he knows what she/we can handle. Sometimes it is scary to put all my trust in him, but I still do. I know He knows me and my family. It's crazy because I have this feeling that she is going to be ok. No mother wants to think of the very worst for their child (death), but it is one of the effects of cancer. However, I have never thought of losing her. Maybe it is me being naive, but I have always had a feeling of peace amongst all the crazy feelings I feel. I know that is Heavenly Father giving me the peace I need at this time. It must be what I need to feel... to get through this.

I guess this post turned into an emotional one... again. It is my journal and I want to remember every step of this journey. I want Taleah to look back and see how strong she was.

5 more days of consolidation...

Surgery Again- Slade

As I mentioned before, Taleah was very concerned about Slade's surgery. She continued to ask me a lot of questions. As we were getting ready this morning, she said kept telling him to be brave. When I told her that he would have a bandaid on his weeny (sorry for the terminology but that's what we call it), she got teary eyed. She said, "I don't want my brother to have a bandaid. I don't want him to have surgery." I wanted to say, "Me too!" But I didn't, I assured her that he would be just fine. Talk about ripping my heart out. I became even more anxious. (I guess it appears as though I am an anxious person)

(Side Note...Slade was born with hypospadius-pee hole on the bottom of his weeny vs. the tip. They were "re-routing" him and then finishing with his circumcision...great terminolgy)

I thought that I would be a pro at this, but I am still not. I kept thinking negative thoughts and then tried to push them away with positive ones.

The way that Taleah reacted melted my heart. She knows way too much about this particular world and she didn't want him to suffer. Talk about love. So sweet.

When we arrived at the hospital, I was on the verge of tears. I was by myself because my mom kept Taleah and Scott was at work. Sandee (mother-in-law) came right as I was checked in. I just kept thinking that this was all too familiar and I shouldn't have to put another child through this. I had a lot of negative things going on. I was trying to be positive though. It helped that we knew a lot of the people. When Scott showed up it put me at ease a little because he could get the scoop from everyone. But, I felt like I had to hold it together because we knew a lot of people. I couldn't be the crazy mom that can't get it together.

It's so dumb, but when the surgeon explained that 1 out of 10 ending up having to have an additional step in the procedure... and giving me the rare thing that can happen....I automatically assumed that would be us. I had so many negative things going through my head. I don't know what my problem was. And I was a nervous wreck. Not sure why... I have done this a time or two.

Everything worked out fine. He did great.

He woke up sad/whiny (just like Taleah). I got puked on. I knew the drill.

Looking back on the day, we are lucky that he was able to get the surgery today when I don't have to leave on Sunday for PCMC. I have to go in to Marsden on Monday to get his stent removed (I am usually at PCMC). My work was flexible of when I get my additional 4 hours that I missed today. Some good things came of this.

I took pictures of his bandaid light, blood pressure cuff, IV, and gown for Taleah. She LOVED it. I think it made her feel normal. She recited the terminology of each picture...over and over again. She kept asking how he did. She is VERY concerned about his bandage. She is being extra careful with him... I think she can tell he is in pain.

Good thing I am funding these hospitals :)

Keeping the job security of the IHC workers (including myself).

I feel a little bit better about things. Taleah is going great right now and enjoying the last half of consolidation. Hoping it continues that way because I don't want extra doctor/hospital visits.

Thinking positive!

Consolidation- Day 17

Taleah now has a "boyfriend". Well, she has for a few weeks now. She talks about him quite often... and calls him a lot... blows him kisses... and requests extra bandaids for him every time we leave clinic. She says, " I will put it on Jace's hairy chest!" (and then laughs really loud) He was my lifesaver during "seroid mode". He came home a lot for lunch because it was the only thing that made her happy. Seriously. I owe him big time.

This particular day (below) they put bandaids on their noses... and then she wouldn't take hers off for 5+ hours. Seriously.

She has been able to go to a few of the football games that daddy coaches. They let us sit on the track in lawn chairs (away from everyone). She LOVES it. A LOT. This time she wanted to dance on the field by herself. Hmmm. After half time, she wanted pictures with a lot of the cheerleaders. She had no problem standing down there, posing for pictures... in front of everyone. Pretty cute.

She loves "Maddy Sonj"!!


Cabin Time

It was great to get away. It wasn't too cold (thankfully). Taleah and Slade LOVED riding the rhino. We actually got some naps out of it. She enjoyed a 15 min ride and then trip to the "store" to pick out a treat. She asked Gramps so nicely that he couldn't refuse.

I loved looking at the cabin to see all cars sporting Taleah's sticker. She loves it too.

The second highlight of the trip may have been Tavia's birthday cake. We used it for some bribery... and it worked.

We had some serious posing going on. Again, another one of Taleah's favorite things. I love it too. She has some spunk. Guess she has some good teachers.

She has been receiving some cute hats lately. A lot of homemade ones that are ADORABLE. We appreciate it so much. They are all cute with hair and will be cute without hair.

I must say that these 2 have a cute relationship. She can make Slade laugh like no one else... and she can make him cry better than anyone. It melts my heart when she is so concerned about him. (whether he bonks his head or needs his mommy) There are times that she doesn't want me to help/tend to him, but for the most part she loves that boy.

Slade had his check up this morning and Taleah couldn't come. She said to Slade, "Be brave buddy. It will be ok." I about cried.

She was very concerned when we got home. She kept asking how he did. I told her that he was awesome. She kept telling him, "Good job buddy!"

It's kind of crazy because I am reluctant to say that things are going ok around here lately. (minus the stupid medicine.. she threw it up everywhere last night...can't find a solution) She is much more back to normal. I feel like I am going to jinx myself. I know it is dumb to live like that. I think that way though (sometimes). And then I even think if things are good it means that something bad is going to happen. Again, I know that is dumb. I will still focus on being positive.

Positive things...

I found out that we will most likely be able to do 3 of the 5 visits (in the next phase) down here(as long as she isn't having major side effects from the chemo). I am so happy about that.

Slade's surgery(tomorrow) just happen to fall on the Thur before I DON'T have to go up to SLC. I will be able to be home with him all weekend. I can focus on taking care of him because we don't have any appointments for Taleah until Halloween. Crazy how that all happened. (it was scheduled before Taleah was diagnosed)

Not to go away from the positive... but I am really nervous for his surgery. You would think I would be a pro at this point. I am having some anxiety even thinking about leaving my baby in the OR to go under anesthesia. I know so many brave moms that do it/have done it. I am still nervous. Maybe a few extra prayers his way tonight/tomorrow would be great. I sure ask for a lot!

Keep focusing on the positive.

I think that might be the only way to make it through something like this.

Consolidation- half way

Yep, we did it again. Up and back to SLC in less than 24 hours. Hate to be negative, but it's getting old. My mom mentioned in the car how ironic it is that I am the one who is traveling so much because I have always HATED traveling in the car longer than 1 hour at a time. I guess it must be another lesson for me to learn. I better keep learning. We ended up going to Brianhead for the weekend (pics to come) so the ride up was shortened by an hour. We left Sun night at 8:30 and she slept the entire way. I was concerned that she wouldn't sleep when we arrived, but she did. YAY. She only woke up once during the night for a drink of water and then back to sleep. We had our normal routine for clinic and she was doing so great until they accessed her port. After that, she was extremely emotional. Dr. Barnett came in and she usually LOVES him, but she could barely catch her breath from crying. Broke my heart. That part never gets easier! They decided not to draw labs because we drew them last week and they were great. We will wait until the Friday before the next phase to check them and HOPE that they are good enough to start the next phase!! The RTU was able to get us in early and things went pretty well down there. She was VERY upset to have her little "nap" today. I HATE when they give her the sedation medicine and right before she is "out", she freaks out, tenses her body and claws at me... it must be a crazy feeling for her. I had some serious marks today. However, she did return back to normal quicker today. YAY! The zipper shirt she wore was a hit and she did unzip and open the shirt for nurse Carrie... very impressed.

Side note... when she woke up there was 1 other boy in the recovery area. She was very concerned with him. I told her that he just woke up from his "nap" too and she replied, "But I beat him. I beat the boy waking up." Hmmm.. she might be competitive.

She is almost back to her starting weight. She weighed 30.3 pounds today. They noticed her belly going down but they still think her cheeks are pretty chubby. Her cheeks have gone down...but they are still pretty thick and cute of course!!

What's to come... 2 weeks will hopefully be the start of interim maintenance. It is 56 days long. After talking with Dr. Barnett, he is looking into doing part of it down here. If the hopsital can get the chemo we need in a matter of 24 hour notice and Dr. Marsden feels comfortable having it done here....then we can do 3 out of the 5 visits here. I am PRAYING that we can do that. Each visit is 10 days apart and that could get tricky with my work schedule. I wouldn't have to make arrangements for Slade... I can think of so many great things that would come of a few visits down here. Oh please... that would make my life a little easier. But most importantly... it would make Taleah's life a little easier.

She was loving her 2 bracelets on her ankles and did not want to take them off.

Had to say what a sweet boy he is.. and what a trooper. As much as I focus on Taleah and helping her, he has been a sweetheart. It has to be hard on him too. And he does it.... probably because he has to. But they have the cutest relationship. Taleah said(on the way to PCMC), "I want my brother to come with me. Go pick him up. I miss my brother." So cute.

Grandma Young came to play with Taleah on Friday while Grandpa Young worked on our patio. Taleah LOVED it. I think she wore grandma right out. (yes, she is in the little playroom with Taleah)

That personality of hers is right back where it should be. Some things that I never thought twice of...I cherish every second of. Life has a whole new meaning.

(I selfishly made her sit still while I braided her hair.... I was almost in tears doing it. I have got to let go of this hair thing)

I feel like I should point out some positive things about driving to SLC. I get to spend time with my mom. I get to laugh, joke, and sing with Taleah. We get to spend time with Treena's family. I have time to ponder.

I feel really blessed to have the family we do. Immediate and extended. Everyone has been SO helpful. The Stevensons always take Slade (no questions asked) when we have to be in SLC. It is comforting to know he is so well loved/taken care of. Treena welcomes us with love. My mom gives up time to drive us and be with us during the clinic visits. Family donating time and money for the yard. Neighbors/ward members selflessly giving time,money, food to our family. Friends that send uplifting messages. And so many prayers. I do feel blessed even though I have a bad attitude sometimes. Cancer sucks.... don't get me wrong. Cancer messed with my "plan". BUT cancer teaches a lot of good things. Cancer is still teaching me a lot. So I'll keep learning.

Consolidation- Day 8

(She was wanting to pose for the camera...things we used to do often...yay)

We headed up to SLC again... every Sunday we have our routine. Wake up, clean up the house, pack, leave around nap time (so she will sleep half of the way), get dinner in Draper, go to Treena's, play and play, go to bed around 11:00, wake up around 7:00, drive to PCMC, stay for 5 hours..ish, drive home. Pretty exciting. It's already getting old...bad attitude to have.

Medicine is still a slight struggle. She has been doing better with the 6MP in the watermelon gummy. The septra...not so much. She HATES it in whatever from we use. It is usually a 30-45 min process now. We did try it in strawberry syrup and she seemed to like it a little better.

She gave daddy a gummy while she ate hers... they had to make sour faces.

Her hair... Scott wants to shave it and get it over with. I am still holding on. Everyone keeps saying that she has so much hair still. But it is much thinner. Everytime I brush her hair, a good amount comes out (the pic below). She keeps saying she is ready for a haircut, but I keep ingoring her. I should probably let her do it if she is ready. We are planning a party to do it... all of the boys are going to shave their heads with her. She gets to be the only special girl!!

It has been so nice to have her back to her normal self. She is dancing, singing, and teasing her brother. Yay! It makes things SO much easier. I am trying to implement one behavioral issue a week. This week we are working on using nice words. It's just so hard to follow the "steroid month" because we gave her whatever she wanted.... we had to. Experiencing that is like nothing I have ever had to do. I just keep thinking that we will take it one day at a time and try and get things back to normal.

Things went well at the clinic. She was really emotional this time... not sure why. The port access went ok. She played much better with the child life specialist. We had to wait in the RTU for over an hour... that was a struggle. Fasting until 12pm was not her favorite.

Her labs looked pretty good. We are still waiting on the results from the CSF. I still get nervous every time. There are so many things that can go wrong from all of the different chemos and their bodies going through so much... just trying to think positive.

WBC (normal range 6.0-17.0) 4.8

RBC (normal range 3.9-5.3) 3.48

Hct (normal range 34.0-40.0) 32

Plts (normal range 150-400) 292

ANC (normal range 1.5-8.5) 2.2

She is almost to normal in most of those which is great. I feel like she can have a somewhat normal life while they are good because the next 3 phases (2 months each) will drop her counts.

What a strong girl. Inspiring me every day!

Solution for 6MP

Rob (father-in-law) decided to try having her chew the 6MP(oral chemo) inside a sour watermelon. I wasn't sure on the taste of this pill, but I do know the Spetra is so bitter. She did it though...twice. It only takes about 10 minutes of convincing, but she gags it down. Hey..if it works...great! I am dreading the Septra this week (which is twice a day on Mon and Tue). I can't decide if I should try and let her chew it (it's NASTY) or crush and mix with chocolate... decisions. We have been practicing swallowing mini m&m's and tic tacs. Not very successful. We will keep trying and PRAYING for her to figure it out soon. :)

She has been sleeping much better. Not loving naps, but still trying to get them in here and there. She is acting much more like herself and I LOVE it. She is full of attitude!!! Not always good, but better than sick and tired.

Anxiety... I can't help but be anxious of the unknown and the phases that are to come. Talking to people that have been through it helps, but I know every kid is different. I have got to figure out a way to not live my life like this... it's not fair to my family and it just might make me crazy!

Side note... a cute cancer friend (Brinley 5 yr old) came by to meet Taleah. It was SO great to meet someone and talk to them about their experience. She has almost been done with treatment for 1 year. What an inspiration. Taleah hasn't stopped talking about her. She keeps saying ," Brinley came to my house. I love her!"

Medicine...and... Sleep

I am pretty sure that this whole medicine thing could put me right over the edge. I have been crushing the pills, putting them in a syringe and mixing it with chocolate syrup. Some days are harder than others with her, but she prefers it any day over the berry medicine (Spetra in luquid form). Last night was particularly difficult. It took about an hour to get her to take it and when she did.. she ended up gagging and spitting some of it on her shirt/chest. Yes, it's a chemo pill and shouldn't be touching her skin. Also, I have NO idea how much of the pill she actually swallowed and how much was spit out. There was no way to know how much more to give/not give her. I wanted to cry at that point due to the fact that it had been a long/difficult day of whiny kids. I know how crucial the medicine is and I didn't know what to do. I ended up just leaving it at that because other kids SURELY spit their medicine out from time to time... I hope. I just didn't want to give her too much. It probably doens' t sound that stressful, but these medicines are supposed to be saving her life. Kind of a big deal. :)

She has been sleeping much better the past week. Now if only her brother would follow her lead. Man, just when I thought sleep could help me out...he has terrible nights and I don't sleep much. Sleep is overrated...that's what I keep trying to tell myself (but it's not working anymore). It is pretty cute though because Scott has been sleeping on her floor every night (per her request). I still keep the baby monitor on. He seems to sleep just fine (says he didn't hear Slade screaming for 1 hour straight last night). I then kept waking up because I "thought" I heard kids crying... so I would get up and ran to the other side of the house and check on both...and neither were crying. My heart would be pounding and I would feel some anxiety. Not sure why. Anxiety is my new best friend... probably not healthy. That could be part of my problem lately... hmmm.

Side Note...

Yesterday, she saw some hair that was shedding and told Taylor, " Silly kemia is making my hair come out!"

Scott told me that Taleah woke up this morning and told him, " I want a haircut." She has been listening as I have been encouraging her new buzz haircut like the other cancer kids and how fun it will be when all of the boys do it too.... and she can be the "only special girl".

(snapped it this morning before I left for work)

It is still comforting to hear/talk to people that are so concerned for her and our family. It means so much. Can you imagine what I would be like without it... a COMPLETE wreck!

Consolidation- Day 1

We headed back up for another clinic visit, chemo, and an LP. Her counts from nurse Jeanette coming to our house to access her on Sunday morning...

ANC 2000

Platelets 379,000

Hct 30.3

We left on Sunday at 4pm. She slept 3 of the 4 hours. It was a rough ride due to the sore legs/body (from the marathon).

We stopped at Sizzler to eat for dinner. She loved it. Only had 1 or 2 meltdowns.

Arriving at Treena's is the highlight of her entire trip. She played and played. They are so nice to let us invade time and time again. She played until 11:30pm and then we headed to bed. She did realize that going to bed made her that much closer to PCMC. At one point she didn't want to sleep in the bed because that meant leaving in the morning. It took some convincing, but we did it. She slept until 7:30am and we left around 8. Arriving was bitter sweet. I knew what was to come, but had a little less anxiety than before.

We made HUGE progress this time. I think it was because we met cute Daphne and saw her getting ready for her chemo. We also saw a little girl weigh by herself and get her vitals taken. That's all Taleah needed to pump her up for her first time "solo".

Yep, she weighed by herself, had her height measured, the nurse did her temp and she let the nurse put the BP and "bandaid light" on. Serious progress!!

(weight 32 pounds...still up 2.5-3 pounds)

She even played with the child life people. That is also a first. She was slightly distracted by them while I spoke with the doctor. She still listened to most of what was said because she likes to be very informed.

She woke up groggy/mean from the anesthesia. I hate that part. So much. And we have to do it for the next 3 weeks in a row. dang.

She slept the entire ride home. Makes for a faster... quieter ride home. Also makes for a late night at home.

We are officially on to the next phase. It is 28 days long. Consists of 2 chemos... one of which she takes every day at home (6mp). She received one today (vinc) and will receive the other (methotrexate) with every LP for the next 2 weeks. They say this phase isn't horrible and her counts shouldn't get too low.. but I don't know. I am not really sure what to expect. They also say that if she hasn't lost her hair yet, she may not until the next phase. It is shedding a lot. More and more every day. I should probably just buzz it and get it over with, but I don't want to. I am not sure why I am holding on... probably because I don't know how she will take it. Sometime soon.. we will decide.

I am feeling really worn down. Emotionally and physically exhausted. I feel like I have been trying to hold everything together so we could complete this marathon, and now that it is over I just want to let it all go. Sounds terrible. Again, I know some have it so much worse. I don't know if I am letting it all sink in now or if this is all part of the process. I can still function and take care of the kids. I just can't get on top of things. Constantly packing and then unpacking, driving in the car, and my emotions are all over the place. I will get used to it..I hope.

I really am grateful and she is doing awesome. It seems like her personality is back, but still having meltdowns a lot. She is very sensitive. It's great to see her sassy self dancing around. She is amazing.

Marathon- TFT

We had been training for the STG marathon prior to her diagnosis. We stuck to the training schedule pretty well. After she was diagnosed, we maybe ran 5 times in 1 month (no more than 8 miles). Probably not the best thing....but it is what it is. During the past month I knew that I was still going to do it no matter what. I wanted to do it for her. We said all along, "If she can fight cancer, we can fight through the marathon."

And that's just what we did.

We did it with our matching shirts that said (on the back), "I can't give up because Taleah won't!"

Everything leading up to the night before was quite comical. We had no idea what we were doing. Taylor decided to run 1 hour before we were heading to Pine Valley to stay the night. (he had not trained for the past 3 months) We were running around like crazy people. Seriously hilarious.

We didn't go to bed until 11:30 but woke up at 5:30. Didn't sleep too great due to the anxiety.

Being at the start line was awesome. So fun. I ran into so many people that I knew were running... which seemed crazy when there were so many people. Again, we had no idea what we were doing. Still so fun.

The race started off great. We walked through all of the drink stations(every 3 miles) and were making good enough time. Taylor and I went ahead at mile 10. We attempted staying with the 4:30 pacer, but didn't last too long. We ended up separating at mile 16. I was then alone...bad choice. I struggled once I reached mile 19. I honestly didn't think that I could go any further.

I can't even remember how many people asked who Taleah was. Everytime I repeated the shortened version of her story, the person had tears in their eyes or started running faster "for her". I can't believe I didn't break down every time. I did get tears a number of times.. a few inspirational ones (from other people), few painful tears and some tears of completion.

I was THRILLED to see my family. I needed to see someone I knew and loved. Really bad. I wanted to quit at that point (3 miles left).

When I saw these 2... it gave me that much more motivation. What a strong little girl. I knew I could finish.

Luckily Scott stayed with me for the last 2 miles. Oh man, it was tough. The heat about killed me.

The running crew. We did it... for Taleah. I am pretty sure that is how we survived. Had a deeper meaning/power. What a neat experience.

Looking back, (deep down) I am so sad about my time (5 hrs 15 min). I wanted to get under 5 hrs. I just couldn't do it. The black spots, pukey feeling....just wasn't happening. I know I should be happy that I finished, but that's the competitive side of me. Now I have to do another to get a better time. However, Taleah has been and still is one of the most important things that I am devoting my time to right now. That is really what matters.

A completion of the marathon in her honor is one thing I will NEVER forget.

The News

It had been a slightly rough day and then night leading up to the day of the "news". I was very anxious. After a long night, we woke up and received a phone call from Dr. Barnett. He started with asking how she had been, appetite, ect.. I just wanted the news. He said with all of the new specialized testing... the MRD number that was 90% on Day 1, 0.01& on Day 8 and now 0%!!!! I couldn't believe it! So awesome. Apparently this testing is fairly new and specific so it is GREAT that there is NO MORE leukemia in her body. She is techncially in "remission" (which she is supposed to be). We are now able to continue with treatment(mon) and start phase 2 (consolidation) which is 28 days long. She will be taking the regular Septra on Mon and Tue, an oral chemo (6mp) for 28 days, receive Vincristine on Day 1 through her port, & MT intrathecally with the lumbar puncture on Days 1, 8, & 15. I hear it's not horrible, but we will see. Every kid is different. Yay for a new phase. That much closer to the end.