Friday, March 30, 2012

Recap of the last 10 days- IM2

This was a few days after treatment in SLC. She was sick and throwing up, but still able to smile and communicate a little bit. I had no idea how miserable it was going to be.

Slade Man always representing his sissy.. Together for Taleah.
We even had a day of playing outside for a short while. She felt good enough with the sores on her lips to enjoy a little fresh air.

Then, I got sick and we all heard me whine about that. It was terrible, but she was throwing up too so we layed around together.The sores got worse and she stopped eating and drinking. She was miserable and I wanted to prevent dehydration so we took her in for some fluids. It took forever and she was miserable, but we were able to get the magic mouthwash and some pain meds. Oh and she won't swish the mouthwash.. only rub it on her lips.
Her only motivation was some cousin time outside at the Stevenson's. She LOVED it and I loved it. She had a little tiny smile and enjoyed focusing on something other than her sores.

Slade was in heaven too. He wasn't cooped up in our house laying around. He loves his cousins.

But then she was miserable again and again. I already wrote about it and I know it could have been worse, but in the moment it seemed awful.She woke up every morning crying/in pain. On Monday (1 week after treatment), she woke up a little happier and requested pancakes. I couldn't wait to make them because she hadn't eaten for days. I was just praying she would keep them down because there hadn't been a day without throwing up.

And then the excitement... the girls having a picnick for lunch. She drank some smoothie and ate a fwe bites of soup, but then it was obvious she wasn't feeling well at all. Right in the middle of our barbie play... came the throwing up. I was so bummed because I thought this was it. Side note.. she is so good at throwing up. Sounds terrible right?! But seriously, she knows when it is coming so we can always make it to a bowl, sink or toilet... she rarely misses.... the toilet is her least favorite place. Kind of princess when it comes to throwing up.

Scott and I ended up taking her to Marsden that day because PCMC told me I should. He checked her out and looked at her sores. That was the first time we saw the ones in her mouth. OH MAN! There was a huge cluster of them under her tongue. And then some on the sides of her mouth. Talk about painful. They say if they are visible on the lip and in their mouths, then they are most likely in the esoph and GI tract.

I knew going to work was going to be a challenge on Tuesday. I bribed her with watching the mini team that night if she could behave with Grammy. She did a pretty good job (it was rough for a while with my mom and it broke my heart). She got to go and she loved sitting right in front with the coaches and helping out.

She hadn't thrown up for 24 hours and she requested Cafe Rio for dinner and her wish was granted. Anything to get her to eat. Then, we headed to Target so she could pick out a present for Chase (another cancer cutie). She had a blast and wanted to buy lots of candy... again anything to get some calories in that girl. Oh and the smile did it for me.

She has lost 3 pounds. That is a lot for a girl that weighed 32 lbs to start. Everyone notices how thin she is. I want those chubby cheeks and thighs back.

We spent a little time at the park and then lunch w/ grammy and daddy at PF (her favorite place). We had a few meltdowns because she is not feeling 100%. She still cries when eating certain things that scrape the sores in her mouth.

She had labs drawn and we waited for the final verdict.

WBC 2.6

ANC 1400

HCt 29

Plts 86 (75 is the min # for chemo)

Looked like chemo it was. I was SO nervous about the dosage. Luckily, they decided to keep it the same as last time. I was actually hoping (but not hoping) for a lower dose so she didn't have to suffer again. It's bittersweet. Let's just say I didn't sleep the night before. Well, for a few reasons.

I had to work while she was getting chemo (in the same hospital), my mom ended up getting sick and she was my babysitter, and Slade would be coming to chemo. Sandee ended up helping out with Slade and picking up the Glutamine powder (something I read that could help prevent mouthsores) she also stayed at the hospital to help during fluids before chemo started. Scott was able to spend some time at the hospital and my patients were quick so I only worked for 2 hours. The chemo took a little longer than usual and I was on edge. I am pretty sure everyone could tell. I still kind of am... waiting for the unknown.

I know that it does NO good to sit and wait for something bad to happen. I should just enjoy what we have and then deal with whatever is thrown our way. Obviously, I just don't work that way. But I am trying. She was able to drink and eat that day. I tried to stay ahead on her meds and I think it has helped. So far, no sores on her lips (which showed up the day after last time) I am PRAYING that they won't appear this time and we can be done with this phase and move on. It was the LAST dose in the phase and then maintenance is next!!! YAY!
That brings on an entire different anxiety. Waiting for the results of which arm of the study she is randomized to.... ahhh. Again, out of my hands and all we can do is wait.

Patience... a lesson I am still working on. Time will tell. Lots of prayers/fasting coming so that we can make the right decision. (we can opt to pull out of the study if we feel is not a good fit for her) Talk about pressure.

Heavenly Father has a plan and I know if we turn to Him and trust in Him it will all be ok.

Sunday, March 25, 2012

My Heart is Breaking

She has finally fallen asleep for the night. My heart is aching. She did have some good moments today. A little glimpse of her personality shining through. It made me smile and gave me hope for a minute. Honestly, it had more to do with her being able to keep the pain meds down. You could tell when they would kick in and when they would wear off. I HATE giving her the strong pain meds that we do (we can't give tyelonal). There is such a fine line of giving the strong meds or watching her suffer. I hate them both, but have decided that she really needs these meds. She only threw up once this morning and it was about 1 hour after the meds... so I am hoping they were able to take effect. A few of the moms that have experience with mouth sores explained that their older children said that mouth sores are the most pain they have ever been in.
She is looking really thin and not too great. I know it has a lot to do with 8 days of not eating much. It is scaring me. I know the alternative... a feeding tube. I am hoping it does not get to that. I need her to be healthy though. I guess I am having a hard time because this was not something we were entirely planning on. We knew it was a side effect, but she never had problems before. Just doesn't seem right on top of everything else. I know a lot of other kids have worse problems so I feel bad even complaining. BUT the bottom line being her suffering/dealing with pain. No mother wants to see that. She keeps asking me why she has these sores and when they will go away. I don't want to coorelate them with the chemo so I just answer, "I don't know." She accepts the answer and moves on. She is SO tough. She has thrown up over 30 times in the last week and not once has she cried. She just wipes her mouth and says, "I'm done." I can tell she is trying so hard with these sores. She doesn't really cry... just whines and wants me to hold her. She will just stare into space and occasionally say a word or two. So not like my baby girl.
Tonight, she received a blessing. It was beautiful and I was emotional. She sat so still, closed her eyes and listened to every word. Words of healing, chemo and strong girl were in the blessing. When the blessing was over, I could tell she was thinking intently. She took a few dry swallows and then said, "Mom, why aren't my sores gone? The blessing said to be gone." I was shocked and wasn't sure how to respond. A tear rolled down my face as I tried to explain to my 3 year old why her sores were still there. I tried to tell her that the blessing was to help them heal quicker. I honestly wasn't even sure what to say.
She is tough. Much tougher than me. I just want her to be able to enjoy life. This beautiful weather and fun things happening... and she is stuck inside... throwing up from the pain. Praying that she heals quickly. I want my bubbly, full of personality baby girl back.

Saturday, March 24, 2012

Miserable Baby- IM2 (Day I lost count)

This poor baby. I am feeling terrible for her. I am not sure I can handle watching her suffer much more. Ever since treatment she has thrown up eat least once a day. Thursday consisted of me getting the flu bug and puking all night long. Perfect timing when my baby needed me. The Stevensons came and got the kids so that they could keep away from me and be taken care of. If we were in the same house, they both wanted me. Let's just say that poor Slade has not had much "mommy time" this week. Taleah has only wanted me which is unusual. She is usually happier at either grandparents house. I had to leave work a few times because she only cried for me. It feels like the horrible weekend has never ended.
We had a getaway night planned as a Christmas present from my mom's siblings. It has been planned for a while so we decided to go ahead and go. Scott's parents watched the kids and I was feeling almost back to normal. We were excited for a night away. I thought about the kids the whole time and I was hoping that they would be ok. Taleah had thrown up a few times that day so I was nervous. The night was great. The food was AMAZING! The cabin was so cute. I need to post about that soon. Turns out... the night was horrible. Slade woke up 4 times and Taleah didn't sleep great. She woke up and was in a lot of pain. She cried for mommy and I wasn't there. The mouth sores are all over her lips and she won't even open her mouth very big. She doesn't want to eat because she can't seem to keep much down. I can tell she is in so much pain. I ended up taking her in to get some fluids to prevent dehydration. Her numbers ended up looking good and not needing any transfusions or anything. The pain on her face is horrible though. Almost more than I can bare at times.
I am also feeling guilty because I haven't been able to spend a lot of time with Slade this week. It honestly breaks my heart when I hear him cry for me, see the sadness on his face when I leave or he is taken away. Taleah wants nothing to do with him when she is pain so he has to be out of sight. I feel like I am neglecting him because I can' t spend as much time as I usually do with him because she wants me with her 100% of the time. Poor boy. I wish I could be 2 people or be 2 places at once.
Honestly, it is exhausting. Maybe more so emotionally. I can't handle it. I have had a few breakdowns this week and I can't seem to hold it together. These mouth sores are bad and I feel like they are the source of a lot the pain/throwing up. Tonight, she couldn't even keep any of her pain meds down. The one thing that I CAN do, which is give her pain meds to help with her suffering... she can't even keep down. I feel helpless and terrible that she is suffering.
I realize that this is extremely negative and not uplifting/grateful. I just want to be mad/angry for right now. I just want her to feel better.

Tuesday, March 20, 2012

Salt Lake Trip= Nightmare

We had one day at home and then it was back in the car. AHHH! I was dreading it as much as the kids. We had a fun weekend planned so it was ok. We were going to go the Hogle Zoo, spend the night at the hotel with RCC for Nationals, spend the day there (Sat), visit family on Sunday, spend the night at Treenas, and head to clinic on Monday. Jam packed weekend.
The kids were pretty good in the car. We arrived to rain so the zoo was out. We headed to Gateway instead. Bad choice. Crazy kids. Running around, screaming and crying, ripping clothes off and hiding under things.
Taleah came to practice with me on Friday night. She loved every second of it. She was so cute and getting a lot of attention. We were in bed by 10:00 and the fun began at 10:30. She began throwing up everywhere. She woke up Slade and they were both screaming. I ran her over to my moms room in hopes of Slade going back to sleep. That was not an option for him. He was awake screaming, I was bathing Taleah and Scott was trying to get the sheets/clothes/blankets off and washed. My mom ended up getting Slade and bringing him in our room. I was hoping it was food poisoning and that was it, but NOPE. She threw up every 30 minutes on the dot. It was so so sad. She was miserable. She did that until 5:30am. Scott kept Slade in the other room while I handled Taleah in my moms room. She helped me for a few hours. We called down for 3 sets of sheets and literally 20 towels. I stayed awake all night because I was afraid she would aspirate beacause she was throwing up on her back. There was one time I dozed off and it was everywhere... my mistake but I was so tired. She stopped puking at 5:30 and slept soundly until 10:45. She was supposed to perform with the special needs group at 11:15, but when I tried to leave and watch she told me, "Mom, I just can't dance right now." She was so excited but knew she was too sick move. She wouldn't let me leave her side so I wasn't able to attend the 1st half of the competition. That's when the low grade fever began. I watched it for 2 hours and then it finally spiked the magic number (101) so we headed to the ER. As we were leaving, Taleah said ,"
Mom, I don't want to miss Teeny's performance. Teeny, don't perform without me." I cried a little because I didn't know if we would be sent inpatient. It was a quick trip (3 hours) and luckily the labs came back high enough to skip a "sleepover". I was SO glad. She fell asleep on the way back so I was able to go to the comp to be with my team. I am SO glad my mom was there to help with Slade. (In the meantime, we found out her little cousin whom we were going to visit was sick). She woke up very upset that I wasn't there. Scott brought her to the comp to watch my team (her aunt Teeny).
My team was great. We had 2 hours to kill before awards so we headed to Olive Garden. Again, quite the challenge with the kids but still fun. Taleah wanted to lay on my lap so I knew that was not a good sign. Scott took Slade back to the hotel and then Taleah informed me that she peed her pants. Turns out, she pooped her pants (due to the diarrhea form bein sick). Awesome. I had no phone in there and no change of clothes. I am getting her situated on the toilet when she says she has to throw up, but won't do it in the toilet. I run out to the sink (she is naked) while she pukes while people are trying to wash their hands and go back to their food. I leave her on the counter to run out and get my mom and notice there is poop on my leg from when she was throwing up. Awesome again. I wrapped her jacket around her and ran out of Olive Garden.
The one good thing was the team taking 1st place at Nationals!! Yay! Something positive. Much needed!!
I am so thankful for my momma. She goes above and beyond. As do Scott's parents. We came home both times to clean yard, house and folded laundry. WOW!

Sunday we waited to go down to Treena's house. She was beyond excited. We ate lunch at Cheesecake... well we attempted. Taleah decided to eat some of soup and throw up yet again. At the table... all over . Box up food, ask for check and leave. It was becoming all too familiar.
Treena's house was heaven. She LOVED it! As always. She played and played, without having a nap which led to a rough day at clinic the next day.
Grammy took this boy home for us. We missed him lots. They kept us updated with lots of pictures.
Clinic was early as always. We were excited to take daddy because he had never been. Daphne saved the day but showing up at just the right time.
It is so crazy because she wants nothing to do with Scott and Slade when she is sick. She only wants me and that is probably because I am her momma. It was hard for Scott because she didn't want him and he was so happy to there. She did cry for him one time when she woke up from sedation. It was a rough day because of her recovering from being sick. It was hard and I was emotionally and physically exhausted.
Weight 31.4 lbs
ANC 5100
Plts 134000
Hct 32.4
The numbers were good enough to increase the methotrexate dose. This dose was the highest she has ever received.
We were missing this boy like crazy. Even Taleah couldn't wait to see him!
I think she always has a hard time with the LP/sedation. I had them keep her flat for longer this time to try and prevent the spinal headache, but I don't think it made a difference. Poor thing was miserable on the way home. She woke up at Beaver and was screaming in pain. I tried to get her to drink her special juice but she didn't want to. I could tell that she was on the verge of puking, but then she would scream in pain. I didn't know what to do. She needed the meds. It resulted in her puking in the car. I was able to catch it though. So sad.

I was more than ready to be home. And so was she. She did great but needed to be home in her own bed. She was miserable all night long. Daddy slept with her that night. I worked the next day and ended up leaving work (in tears) because she had been crying for me all day. I can't quite do it all. Need to unpack, do laundry, grocery shop, fill out tax forms, write a story for Taleah, clean house, pay bills and go through mail. Instead, I am holding Taleah and documenting our last week. She isn't feeling great at all and I am ready for this phase to be over. I am praying that she gets no mouthsores and can feel better soon. I am pretty much done with this. I am over it. Good thing she is a rockstar!


We were so glad to get the chemo done on Saturday. I was nervous about her getting sick while traveling down, but she did great. We kept on the meds for about 12 hours and then she seemed to handle it like a rockstar.
I was having major anxiety about going to Cali just in case something happened to her. We were out of our "comfort zone" and didn't know how things would be handled. I prayed and prayed. Luckily, she did great.
The drive down.... LONG! We were in the car for about 9 hours. That lovely Sunday traffic to Cali... never again!
Grateful for Elmo and snacks.

It wasn't until we were 1 1/2 hours away that they fell asleep. Mission accomplished... 7 hours later. Why didn't they fall asleep earlier?

We arrived at about 9pm and headed to dinner. It was the only night that we had Trevy and Kate. We headed to the Old Spaghetti Factory. It was a challenge with the kids.. as always.

The second night of dinner was with Steve Cook. He showed us the healthy way to dine.. at True Foods. It was pretty good. It was a new experience for us all!!
The beach was a hit. The kids loved it. Taleah and Slade were in heaven. Lots of sand castles, swimming, chasing waves and laying out (not for Scott and I). The weather was about 62 degrees and windy. Goosebumps and jackets for me, but not the people who wanted a tan.

The park was a blast. We spent a lot of time there. Big kids and little kids. I was paranoid about the germs. I am pretty much always paranoid. New life right?

Yep, that is his tantrum. We were waiting for the bikes, which turned out to be some serious biking. So fun.

Cheesecake factory=an all time favorite
It wasn't so great for me. The kids were more than we could handle. Scott and I spent the majority of the time handling the kids. Taleah cried the entire time and Slade threw 1 million tantrums. A walking circus... yes, that's us.

Her BFF for the trip. Kenna was a great sport. Taleah spent 50% of her time with her.

I am so glad that we were able to go. I am so glad that she didn't get sick. The sleeping was always hard because Slade slept like crap. The last night we were there was a nightmare. I have got to train Slade again.
It was nice because it was almost like we were in a different world. It was almost like cancer didn't exist for a minute. Minus the fact that she is bald and we wiped everything down. She didn't wear a mask very much. I just loved that for 3 days we pretended as if the cancer wasn't a part of our lives. I loved it. Don't worry, I didn't forget all the way. There were always those little reminders. I am just glad that we were able to have a good time and be "normal".
Thanks mom and dad for the fun trip!