Interim Maintenance, Days 22-31

Liv has continued to do GREAT on this round of treatment! Everything is pretty much normal, other than her appetite isn’t all that big. This round she hasn’t had to have any meds at home, the only thing we give her is Miralax daily to help her with her constipation. She already has had a history of constipation, and the Vincristine chemo she is on right now also has constipation as a side effect, so we have to stay on top of that. It has been SO nice to not have to worry about multiple meds a day like we did in the other rounds!

We did a lot of playing over the last ten days! We have been outside a lot and have also gotten to play with our cousins a lot 🙂

At Grandpa P’s house, swinging on the swings with cousins
Swinging at her other cousin’s house. Its always so nice when we go to someones house that has a swingset because she cant go to public playgrounds

We actually weren’t sure if Liv would make counts this week to be able to get her chemo. Last week her ANC was down to 600 and anything lower than 500, you can’t get chemo. She had significantly dropped with each chemo dose this round so it was likely that she wouldn’t make counts. 

Wednesday morning Liv’s Home Health nurse came and accessed Liv’s port and drew her labs. Later  that day we got the call from her nurse at primary children’s and her ANC had jumped to 2100! Last week she was at 600!

On Wednesday night the Mascot Miracle Foundation hosted a free event for Primary Children’s patients and their families at the Aquarium! I am so glad that her counts weren’t really low and I didn’t have to wrestle with wondering if I should take her out or not. It was SO much fun! 

Before we left, I told Liv that there would be a lot of people like her there. That she would see some cancer kids with little bald heads like hers, and kids that have other medical problems as well. My kids absolutely loved seeing all the animals, dancing, meeting the mascots and getting their faces painted; but I think my favorite thing was that there were so many kids there that looked different or walked different or made strange noises, and not once did my kids act like it was weird. As hard as Liv’s cancer has been on our family, I can already see the impact for good it has had on them. I hope they learn compassion and empathy and kindness from this hard situation.

Another one of my favorite things from that night was when we walked out of the shark exhibit and there was a big dance party going on in the main lobby. Liv jumped right on in there, without and any encouragement from us, and danced her heart out. For a split second I remembered exactly what she used to be like! She was so happy and carefree! It was the first time since she was diagnosed that I didn’t feel her holding back while she was in public. I can usually feel her nervousness and self consciousness when we are around other people. She didn’t worry about what people thought and just had a blast like a normal little four year old should! I don’t know whether it was because she was around so many other kids that had problems like she did or not, but it made me happy to see her so happy 🙂 

The kids also got  to meet Ariel! They were star struck 🙂 She was so unbelievably sweet to Liv. She got down on her knees and looked her in the eyes and told her she was beautiful. She gave her a big hug and a lipstick kiss on her forehead 🙂 Liv felt so special.  We found out later that Liv was actually on the news with Ariel and we had no clue they were even filming. Haha! 

It was such a fun night! We are so grateful for foundations like this that can bring smiles to kids like Liv!

The next morning Liv had clinic. She was really happy walking in and even greeted he receptionist and answered the nurses while she was getting her vitals taken! That was nice to see. She was pretty happy the whole time, but for some reason was talking in this little baby voice that was kind of driving rick and me crazy. Haha. Her doctor is so nice, but she has an accent and it makes liv nervous. She actually responded in a really quiet voice to her every once in a while too 🙂

Dad gets to come with us a lot. We are lucky that he can come and work while we wait 🙂

 After we had our appointment and got her chemo, she had to go down for a Lumbar Puncture. There is only one LP this round and it is on day 31, which was this week. She always gets really upset when I set her up on the table to get sedated. She cries hard and says “mommy! Mommy!” I hold her tight in a bear hug and she pulls her blankie and kitty in close. As the propyphol goes in her port, I can feel it take hold of her body. Her tense little shoulders start to droop and then her body goes limp. Almost every time as I’m laying her back she jolts and tries to fight the drug. She hates to feel that out of control and fights it as hard as she can. This part never gets easier for me. It absolutely breaks my heart 😦 I’m so grateful that she has her blankie and Honey kitty that have brought her comfort since she was a baby, and mean even more to her now, to be with her as she falls asleep and are there right when she wakes up. 

They came and got us about 30 mins later. The nurse said, “She is so funny!” I was like, “Say, what?!” Haha! She never talks when we are there so it was surprising to hear. We got back there and she was wide awake and had even let the nurse deaccess her port before we even got there! That was so nice. She immediately wanted to climb out of bed and into my lap and eat the cheese stick she had picked out. She had been fasting all day, so she was excited to eat 🙂 We only had to wait a few minutes and then she was able to get in her wagon and pulled to the car. It was a pretty good clinic day!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s