Interim Maintenance Days 42-51, Start of Delayed Intensification

We got a two week break from clinic and it was so nice! It also went by way too fast 😉 We had a lot of fun over these two weeks and Liv felt great!

For the 4th of July, we had two celebrations with our families! We spent the morning at Rick’s parents house. We had a delicious brunch and played in the backyard. We flew airplanes, played baseball, and chased the chickens and the alpacas around. It was a great morning! We went home and rested for a few hours, and then headed over the my grandparents house to have dinner and do pop its and sparklers.

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Liv and her Yia Yia
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Playing Mastermind with her Papou

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The girls with grandma!

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The kids ate dinner on a blanket with Grandma and my Aunt

One night Street and Daci went on an overnight date with their Yia Yia and Papou and Liv stayed home with me. She chose to have a girly spa night. She got dressed in a nice dress, we put makeup on her, and I painted her nails. She felt so beautiful!

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The next morning she spent lots of big sister time with her baby brother:IMG_2949

and then had some nice alone time and loved not having to share the iPad 😉IMG_2955

The other night we went to visit a cute little boy that we have met over the course of our treatment. He is two weeks ahead of Liv, and has already started Delayed Intensification. He is really struggling and not feeling well on the new meds. My kids wanted to draw him pictures and we made him cookies and took them out to him.

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Lately Liv has been craving Costa Vida, but not the kids meals. She wants the grown up salads all the time.  Lol.

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Her hair has been growing back in the last few weeks. Its cute a fuzzy right now, but this next round it will all fall out again.

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Yesterday Livvi’s nurse came to get  a CBC (Complete Blood Count) to see if she could receive her chemo today. I didn’t expect her counts to be too low for chemo because she has been doing so great, but I was actually really surprised by how great her numbers were!

ANC: 4400

Platelets: 307,000

Hematocrit: 11.3

Hemoglobin: 34.8

WBC: 6.4

I was so grateful to hear that her ANC was so high entering into this next phase!

We headed into clinic this morning and Liv was so happy today! She did a great job with her nurses and doctor. It was a very long day. We left the house at 6:30am and didn’t get back until 2:30pm. We first had our doctor appointment, then we headed to the CPC for her Lumbar Puncture (LP). While we waited for the LP, Liv and I played Memory and Playdoh. Playdoh is her favorite part of the CPC 🙂 When we went to the procedure room she was all smiles, and only whimpered once before the propophyl knocked her out. She was so brave! Her LP went great and after she woke up she wanted a red slushy. We headed straight over to the outpatient building for an echocardiogram. One of the new chemos that she is starting can affect the heart muscle, so they had to get a baseline of her heart before they start it. She did great and just laid and watched Despicable Me the whole time. After the echo we headed back to clinic for her to get her chemo. She couldn’t get the chemo until her echo results were read. That took two hours! Luckily, Liv’s very favorite volunteer was there and played with her. They painted little wood pieces (flowers, cars, and trucks) the whole time. There were also two adorable little girls there that were going through chemo too. One was seven and one was six and they were so adorable. Liv was so happy and talked a lot. That made me happy!

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This next round is called Delayed Intensification and it is the one I have been dreading since Induction ended. It is a 60 day cycle. The first 29 days look like this: LP with intrathecal Methotrexate (chemo) on Day 1. Dexamethasone (steroids) 7 days on, 7 days off, 7 days on, 7 days off. Vincristine (chemo) and Doxorubicin (new chemo that she hasn’t ever had) once a week. Pegasparagase (she had this once, during the first week) once, on Day 4 of this cycle.

The next 30 days look like this: LP with intrathecal Methotrexate on day 29, Cyclophosphamide (new chemo) on day 29, Thioguanine (new chemo) on days 29-42, Cytarabine (new chemo) on days 29-32 and 36-39.

All of these new chemos can significantly drop her counts, like her ANC will probably drop all the way to zero. This means she basically has  no immune system so we have to be careful not to expose her to too much. Her doctor told us that we can still let her have a little fun and play with her cousins if they are healthy and go to family dinners, but to not take her out to crowded areas with lots of germs. The steroids are going to have all the same effects that she had all the way back in Induction. The extreme hunger, the extreme moodiness, and the insomnia. Honestly, I think this is what I’m most scared of. The dosage is much higher than it was in Induction. She does get seven days off in between them, but steroids take a while to leave their system so I feel like the effects will finally start wearing off, and then we will just have to start the next week of them again. She was so so hard on steroids. The poor girl was miserable, and she cried and moaned and ate 24/7 the first time around, I’m praying that it doesn’t happen as severely this time. I’m extremely nervous for what lies ahead, but I also know that it doesn’t do any good to worry about it when nothing has even happened yet. We will just take it one day at a time and hope that it all works out. We just have to have faith! 🙂

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