The last ten days of IM had a lot of ups, and a few downs 🙂
I was doing my hair upstairs and I heard a crash followed by Liv’s loud screams. She came running upstairs and there was blood streaming from her nose. Her shirt was covered so I hurried and pulled it off. I guess she had been sitting on the couch with her arms inside her shirt and she fell off the couch and couldn’t break her fall with her hands. Luckily her platelets were in a normal range and her nose stopped bleeding shortly after. My rug and carpet had to be scrubbed and scrubbed to get all of the blood out.
Liv got to go to Sacrament meeting because her counts had been high enough. Yay! It was fun to be there as a family. I took her home after sacrament and we hung out together.
That night, however, Liv started acting a little funny. She had an accident (which she never does), and after her shower when she went potty she cried about it burning. Over the next hour after her shower she was running to the bathroom every five minutes. I told Rick I thought that she may be getting a UTI. We put her to bed and then I called the hospital. The on call doctor is supposed to call back within 20 minutes of getting a call. We didn’t hear back, so I tried again an hour later. Still no call back. So an hour after that I tried again. She finally called back right when Liv woke up screaming her head off. She was burning so bad and when she went to the bathroom it really hurt. The doctor could hear her screams and told us to go into the local ER and get her urine tested and get her on a 24 hour antibiotic through her port. My friend from down the street ran up to be at my house with my kids while we went to the hospital. The ER was really great with Liv. Only one nurse there even knew how to access her port. I’m so grateful she was there when we came in! We sat with Liv for two hours. She wanted to watch Food Network 🙂 This girl loves cooking and baking! They gave her some pain meds and antibiotics while we waited for the culture to come back. Sure enough it was a UTI. They sent us home and we put her to bed.
She slept great the rest of the night. I was shocked. I thought for sure she would wake up in pain in the middle of the night, needing to go to the bathroom. She woke up at 7:30am and I watched her from my bed run into the bathroom. I thought for sure I would her a scream but I didn’t hear anything. She flushed and came running down the hall with a big smile on her face, “It didn’t hurt mama! Can I go to school and dance today!?” Haha! Thank goodness for modern medicine and strong antibiotics that were delivered straight through her port. I picked up her oral antibiotics and she was on them for 10 days and did great.
Rick’s birthday was on the 10th. She was so excited to help me make French Toast for him!
Our last clinic before Maintenance went really well! She was really happy. Her counts came back great and she was in a good mood. Yay!
We got there a little bit early that day so she wanted to throw a coin in the fountain and stop at the cafeteria to pick out a treat 🙂
I had been kind of worried about Liv for a while. Daci is involved in a lot of things and is really talented at what she does. Street loves sports and is really athletic. I wanted to find something that Liv had that was all her own and that she could really love and excel in and gain some confidence. I didn’t think sports was a great fit right now. She’s so tall that she is really clumsy, which makes me nervous that she will hurt herself right now while she is in treatment. She loves her song and dance class that she does with Daci but its not really her own thing. I decided to give piano a try and she absolutely loved it! Her teacher is so fabulous with her. I warned her teacher that she may be really shy and standoffish the first few lessons, but when I came back to get her she was so happy and giddy and silly. Her teacher said she did great and wasn’t shy at all!
We had our 6 month check up at the dentist. Liv laid back all on her own this time. I could tell she was a little nervous, but she was brave as long as she had Honey close by 😉
On Thanksgiving we made thankful trees in the morning. They each told me what they were thankful for and I put them on leaves for them and then they glued them on their trees. It was our year with The Roberts’ so we went to Yia Yia and Papou’s house with all our cousins. The food was delicious and we made our traditional ginger bread houses afterward to kick off the holiday season! Then the kids had a sleepover that night with their cousins at Yia Yia’s house. Penny said the next morning she proudly brought in her gingerbread house and asked her to take a picture of it 🙂
That night we went to Temple Square to see the lights! We had a lot of mishaps happen along the way, which made for a crazy night, but I’m glad we could still go and see the beauty and feel the spirit.
On Saturday we set up the tree! The kids had fun decorating while we watched The Grinch and then we read Christmas Stories afterward 🙂
The next day was Sunday and Liv’s first time back to Primary since she was diagnosed! Almost nine months! She was beyond excited to go! She made sure to sanitize every once in a while during class. I had a lot of people tell me their kids came home and excitedly told them that Liv was back in Primary 🙂
The next morning her nurse came. It didn’t go so well 😦 The start of Maintenance is count dependent so they had to draw her labs to see if her counts were high enough. The port access went great and Liv was really tough, but then her port wouldn’t draw. The nurse had to keep moving the needle around to see if she could get blood to come, but nothing worked. We ended up having to do a finger poke on her, which she absolutely HATES. Its not the poke that she hates, its the squeezing the finger for 10 minutes afterward so they can get enough blood test. The nurse has to squeeze so hard and its difficult to get it out. Liv screamed the whole time 😦 Luckily her counts came back great!
The next day was our first day of Maintenance! We went in to the clinic. We had a big storm the night before so I made sure to leave 45 minutes earlier than it normally takes us to get to clinic. We were still so late! It took us 2 hours to get there when it normally takes about 50 mins. Liv had to fast because she was having an LP that day. The long commute and the fasting made for a grumpy girl and by the time we got there.
I was really stressed because I knew her port was clogged and I knew she also need Pentamadine, which takes an hour and 15 minutes to give her. Then she needed her chemo. I really wanted all of that done before we went down for her LP because if it wasn’t we would have to come back upstairs to get the meds and that makes for a super long day and Liv hates to go back up after she’s been put to sleep. They got us right back when we got there and the gave her a med called TPA that sits in her line for 30 mins. Once the 30 minutes were over they came in to check it and it was drawing! Yay! They got the Pentam hooked up immediately and then we went to the infusion area in the back.
Only a few minutes after we got back there Liv started complaining of a sick tummy and kept saying her throat felt weird. I asked her if she thought she needed to throw up and she said “yes” so I got her a bag.
I gave her her iPad but she couldn’t focus, she just kept saying she didn’t feel well. She said she wanted to play a game with me. I went to the game closet and found her favorite game…Mastermind! We played the rest of the hour and a half and I was able to keep her pretty happy.
When she finished with her infusions we went down to the CPC for her LP. The child care specialist down there knows her so well now that she doesn’t even have to ask her what she wants to do while she waits. She just brought her the play doh right away and Liv was so happy 🙂
Every few minutes though she would grab her throat and her tummy and say she didn’t feel well 😦 When the anesthesiologist came in to go over the procedure I told him I thought she was nauseous and asked if he could give her some zofran.
When it was time to go back to the procedure room Liv panicked. She hates going to sleep so bad. I had her on my lap on the table and they started flushing the zofran through her port. Liv started screaming and saying “I’m going to throw up!!” We got a bucket out for her and she started dry heaving and gagging. Then all of a sudden her body went limp. They had put the propyphol in and Liv was out. While she was having her procedure done I went to the pharmacy to get her new meds. 20 minutes later she was done and I went back to see her. As soon as she saw me she said, “cheese stick”. Haha! She always picks a snack before we go on LP days and she always wants it the second she wakes up. The nurses always laugh over that 🙂
Once we were released and got out to the car Liv started panicking and said “Mom, I’m gonna throw up!” I hurried and grabbed her bag and she threw up multiple times into it. Luckily she didn’t have much on her stomach. It was just a lot of clear liquid and cheese stick. Once she threw up she said she felt better and that she wanted Chick Fil A for lunch. I pulled into the drive thru, ordered the food, and as we were in line to get to the window to get it, Liv started throwing up again 😦 It was so sad. Poor thing just did not feel well. On the ride home she wore sunglasses and dozed off.
When we got home she wasn’t really up to eating her chick fil a. She just wanted to lay on the couch. About an hour later though she really perked up and was feeling a lot better. It was a good thing because we were planning to have The Roberts’ cousins over for a little Christmas Party that my kids planned. They had been working for two straight days on musical numbers and setting up the basement in little activity stations 🙂 Yia Yia even brought little present for each of them. They had a blast and I’m so glad she was feeling better by that point!
So for the next year and a half she is in the Maintenance phase. YAY! Maintenance is so much better because her counts are at a place where she can pretty much do normal things! She can go to school and church and restaurants and parks and movies, etc. We also only have to go to clinic once a month versus the once a week we have been doing. We do a lot of meds at home, however. They gave me a whole plan to follow. They told me that the statistic is if you do less than 95% compliance with what pills and when they should be given, the risk of relapse is 2.5 times higher! No pressure there!
The plan is:
The first day of every month we go in to clinic for Vincristine and her Pentamidine.
The first five days of every month she is on 11 steroid pills, 6 in the morning and 5 at night. While she is on steroids she is also on an antacid
She takes the 6MP Chemo pill every single day for the full year and a half
Every Thursday, except of the weeks that she gets her intrathecal Methotrexate, she takes 8 Methotrexate pills
Every three months she gets an LP with intrathecal Methotrexate
Its a lot to remember and a lot of pills to swallow, but luckily she is an absolute champ at swallowing pills. She can swallow multiple at a time with just a small bite of applesauce. The hardest part about the pills is that the 6MP has to be taken on an empty stomach, so we just have to be really mindful about when she ate last and giving her her pill each day. We can do this though, and I am SO grateful that we have made it to this point! I honestly can’t even believe we are here. When she was first diagnosed it felt like 9 months was an eternity away and that we could never get there. But we are here and I know its because of the support of our sweet family and friends that has gotten us here! Thank you and love you all!