Monday, November 28, 2011

Long Night

I was somewhat excited to come home and post about the trip to Salt Lake(that post to come) and how well she did, but instead the night turned to crap.

Instead, I need to vent. I need to write my feelings down (1) for therapy (2) to remember the crappy parts.

It started with attempting to swallow pills. We have been practicing and she was doing great with mini m&ms and cut up pedialax. I just knew tonight was the night. We tried and grandmas and grandpas for 15-20 minutes. No luck. Came home with a tired boy... and a tired girl. Attempted the pill swallowing for another 10 minutes. No luck. Crushed it up in the syringe as normal... and talked....argued.... got mad....sad....understanding....mad. Ended up being a full battle for 3 hours. She was literally falling asleep as she was pushing our hands away, crying and refusing. We were both extremely frustrated. Nothing was working. Being soft, kind, patient, mad, yelling, crying...nothing. I just kept looking at her and thinking that it was not right. And it's not. I should not be battling my 2 yr old with this crap. I should be battling bed time, stories, movies. Instead I am battling her taking medicine that will save her life. She HAS to have it. I am responsible for giving it to her and she WON'T take it. We tried pinning her down, shoving it down the back of her throat and then she just throws it up. It started running in her eyes and ALL over her. How is the right?! Broke my heart. We are the bad guys, but we are only trying to help her. In the background, Slade is screaming in his crib because he can hear everyone else in the house screaming. I wanted to cry... I did cry. How did we choose is this really happening? I know things could be worse and it's just medicine. But it is rough. I have learned to hate Mondays and Tuesdays for the reason of it being "Septra days". Probably not the right attitude but it's how I feel. I literally get anxiety thinking of the battle to come. There are so many more medicine days to come and it just about rips my heart out. I don't know what to do. She probably only got 1/2 dose tonight. There has to be a better way but I swear I have tried everything! It just sucks. She is such a trooper and endures so much already. Why do we have to do the crappy medicine too? Glad we have it to save her life, but it really does suck sometimes.

Saturday, November 26, 2011

Interim Maintenance- Day 27

Thanksgiving Weekend

We were slightly apprehensive to join the family for the weekend. We have no idea what Taleah's counts are and have to assume that they are pretty low. We won't know until Sunday afternoon. We found out the day before that one of the baby cousins had croup. We knew our answer, we would not be joining them. However, we did decide to join them for dinner BUT we sat by ourselves outside while everyone else ate inside.(Grandpa Stevenson did join us for a bit)We wanted it that way because we wanted to be in the open air away from anyone that could have been exposed to the sick baby. It broke my heart when Taleah asked to sit at the kid table with the other kids... and it broke my heart when they wanted to come by her and we had to guard her and tell them to stay away... it broke my heart when one of her cousins felt bad when we told her to nicely "go away". We cloroxed a toy for her to use to play with the girls, but only lasted a short amount of time because they were getting too close. It was SO nice to still feel a part of the "festivities" for a minute, but was hard at the same time. Almost as if we made the kids feel like they were getting in trouble for wanting to be by Taleah... and made Taleah feel like she was in trouble and couldn't play with everyone. Try explaining that to an almost 3 yr old. She did great and wore a mask when we asked. Everyone else was so nice to accomodate us.

Since we only ended up staying for about 30 minutes, we headed home and finished Thanksgiving dinner on a blanket in our front yard. Thank goodness for warm weather!!!

Some of "daddy's boys" came to our house for the first haircut. They were growing it for Locks of Love, but had to cut it for basketball. They wanted Taleah to be the one to cut it in honor of her haircut soon to come.

One nice thing about having to stay home all weekend was getting all of the Christmas decor out. We had a blast playing in the yard(w/ Chloe and Ash) while the boys (meaning Anthony came to the rescue) and helped Scott put the lights up. Next....the tree!

They are the cutest little buddies. I love it. They just laughed and laughed. It made my day after a weekend of feeling "left out" (not because anyone made us feel that way.. just having to keep our distance for Taleah).

We were able to go for 2 hours to spend time with Scott's siblings/cousins for some fun games and treats. It was great to feel normal for a minute and spend time with family. They were all so sweet AGAIN to keep their distance and wipe everything down before we came (Grandpa Stevenson and Lydia).

The kids stayed at my parents and played. It lasted until about 10:30pm... Slade was delirious and laughed the whole way home. Taleah convinced me that she was having a sleepover because she didn't get to have one at the Stevensons with her cousins. So.... I let her stay.

She was busy while I was gone. She decorated gingerbread houses at Grammy's (she missed those at the Stevenson's that day but was able to do her own the next day at the Stevenson's outside so she was able to have one like the cousins and even had brand new candy for it so that no one else had touched it yet). She also dressed up with Tabes and practiced modeling poses.

Seriously funny...

Apparently Tabes was helping her with her "vogue" face. Nice.

Thankfully, we have just had the headaches this time. There hasn't been any throwing up and maybe it was because we stayed on top of the medicine for a few days after. I can tell that most days she is not 100%. I can see it in her eyes when she starts feeling sick. There hasn't been anything too unusual. She has rolled her ankle a few times, but I can't tell if she is just a clumsy 3 year old or an effect from the vincristine.

We will have her port accessed in the morning and have her labs checked. We will then know if her ANC is high enough to go up to PCMC. Our next visit will be there with a lumbar puncture. Then the last chemo/visit will be in STG (if all keeps going well). The time off (2 1/2 weeks) from driving up there has been great. So great. The next phase will consist of more driving up there... yay... my favorite drive.

I am trying to be positive about the upcoming holidays. It's hard some days. Mostly, I feel bad when she realizes about the things she is missing out on. I think she really misses going out and about. Now that there will be so much going on... I will have to do my best to keep it quiet. She is such a sweetheart and is handling things so well. She doesn't really know any different. She thinks this a normal life. It's not. Well, it is for us now. I am accepting it. I just need to be positive and remember that there are MANY more years of holidays to come. Anything to save her life!!

Sunday, November 20, 2011

Family Pictures w/ the Orrs

Family Pictures with the Orrs. Had to document these. I was excited to have some taken when Taleah is more herself. Her cheeks had gone down and she actually had a personality. I am so glad to have these different pictures to document where she is at in her treatment.

I do have to say that we feel pretty lucky to have such great families. Both of our families do SO much for us. We rely on them for so much and they keep giving and giving.

Family is what it's all about.

Interim Matintenance- Day 21

I was really wanting to switch her chemo until Monday for a few reasons...
1- I wanted to give her body more time to recover before the next dose

2- Then we would be able to get back on track for Mon visits at PCMC

3- Scott was coaching the championship game and I wanted to go

It turned out that we couldn't switch and needed to keep it on Friday.

It was then a HUGE rush to get Jeanette to my house to access her port to check labs. (I was working) My mom took her there, accessed the port, and got things moving.

I was bummed because we had it all planned out to leave the kids with my inlaws, enjoy the game and enjoy a night away and a little bit of time with Scott.

Nurse Heather informed me that we could actually do the chemo as early as 7:30 am and then I could get on the road with my fam. I was nervous because I didn't want to leave her right after chemo. I was nervous (as usual) because her ANC was only 756 and it needed to be 750 to increase her dose... I thought that maybe they wouldn't increase... but they did. I am not sure she will make counts for the next visit. Time will tell.
She did great during the chemo. We were there for a total of 2 hours. It was quick and she loved the attention from nurse Heather.

I felt like a terrible mother to even think of leaving, but I would only be gone for 24-36 hours. It usually doesn't hit her until at least 24-48 hours after. I knew she would be in good hands (Stevensons). I was still nervous, but went ahead and left. Maybe I am a bad mom for leaving, but she did great while I was gone. I had them stay on top of the zofran insead of waiting until she was sick. They also gave a dose or two of the oxy when she complained of a headache.

She had a blast at their house as always. Slade was the normal crazy boy that he is. They kept me updated on her progress. She LOVES sleepovers at their house. They were so nice to keep them especially right after chemo. They knew it meant a lot to me to go and support Scott (after such a long football season). We came home to happy kids and our laundry done. Wow. Maybe I should leave more often... kidding.

She has been acting pretty good. I think staying on top of the medicine has helped. We play at home most days. We make occasional trips to famlies' houses and a few close friends. As long as people are healthy. We will have to be much more careful for the next 5 months. No more slacking!

We did go to the Jubilee of Trees on Sunday morning. We were told that it was a time that there were few people there, and they were right. We still had her wear a mask for most of the time and some gloves just in case she wanted to touch stuff. She did great though and behaved.

Her little buddy Chloe was so great and not even phased by the gloves and mask. She still wanted to hold her hang and look at the trees. That's a true friend right there :)

Taleah LOVED looking at the trees. She just wandered staring at all of the trees.

We LOVED hanging out with daddy. Now that football is over we get to spend much more time with him. We are so glad!

Santa was not an option. This was as close as we could get. I thought one more year and she would be over it. Nope.

I am EXTREMELY nervous about the holidays. All of her cousins are coming down for Thanksgiving. She LOVES playing with them. It is hard because she can't be around sick people. We hate being a burden/downer on events. I don't want people to feel like they can't do stuff because of us.

We will make the best of it. Praying for good health so we can be a part of the festivities.