Oct 6-Oct 30
10/9: For about two weeks before the wish trip, all during the trip. and then ever since she got back , Liv had been complaining of tummy and back pain. She was saying that it hurt right in the center of her lower back. The first few weeks it was just like an annoyance to her and she would complain about once or twice a day. During the trip it got a little more frequent and then after her clinic on Oct 5th she was crying hard about it and coming to me multiple times a day saying that it hurt so bad. I had forgotten to mention it at clinic because she hadn’t really been crying about it, but the few days after clinic were when it was at its worst and I got concerned. I started researching back pain in Leukemia patients. I was thinking it could be a side effect of the meds, but everything I read pointed to it being a symptom of relapse. I was a nervous wreck.
I called our nurse at Primary’s and she suggested we go into our pediatrician to have him look her over. He looked her over and said he wanted an MRI to look at her spine and make sure there weren’t any stress fractures in there. He told me Utah Valley Hospital would contact me soon and told me to have Liv fast for the rest of the day. She definitely wasn’t happy about that, especially since she was on steroids. Haha. We got the call to come in at 4:00pm. During the day, while I was waiting, my mind kept going to really scary places. What if she had relapsed? What if she had a tumor? Thats always a concern with someone who already has cancer…another form of cancer. I was so stressed out but tried not to let Liv see it.
We drove out to Provo and immediately Liv was pretty at ease. The pediatric staff there is awesome and they played with her while the dr spent a lot of time with me. She verified that they would be looking for stress fractures, but also for tumors, etc. After about an hr they had Liv come over to get her port accessed. They had me lay up on the bed with her and wanted me to lay her back. She had never been accessed laid back like that and I think the feeling of no control really freaked her out. She started panicking and screaming and thrashing so we had to have a few nurses hold her down. The first poke didn’t work, so they had to do it again, which set Liv off even more 😦 It was so sad to see.
Once the port was in they started giving her the anesthesia. They had to put her under for the MRI because she was too young to hold still for that long. It was a different anesthesia that she normally gets for her LP’s at Primarys. They said it is slower acting but longer lasting. After a few minutes I could feel her starting to go limp but almost immediately her blood pressure shot up to right below 140. They had to pull back on the anesthesia to lower her blood pressure. They kept checking her BP but it still wouldn’t lower enough to turn the anesthesia back on. They decided to wheel her down anyway and see if it lowered as we were on our way to the MRI room. When we got there the Dr. said that it was lowering a little bit but not all the way down yet. She said they would take her back and wait for her BP to level out.
Luckily, right when they were starting her port access Rick called me and said he was able to leave work and he was on his way to be with me. I was SO happy to hear that news. I was an emotional mess between worrying that she had relapsed, and then her port access not going well and then her BP being high.
They told the procedure would be about 45 minutes but an hour and a half later, we were still waiting. It took soooo long. We later found out that it was because they couldn’t give her the full dose of her anesthesia because of her BP so she was slightly awake and would move around so it took a lot longer than they expected. When they finally brought her out to us, we were so relieved! I was still super nervous about the results. It was after hours and I knew we were going to have to wait until the next day to hear them. Amazingly though, as we were wheeling her back up to the pediatric room, a doctor called our doctor and it was the radiologist at Primary’s! She asked him if he had any results on Liv and he said he had just read it and it was completely clear. Phew! No tumors or fractures! Yay!
While we were waiting for Liv to wake up we were talking to the dr. She was telling us discharge instructions and said that Liv shouldn’t have anything greasy, like a hamburger. Well before we had gone to the hospital, I mistakenly told her she could pick whatever she wanted after she woke up since she had been fasting all day. She chose Culver’s and was so excited about it. While the dr was talking to us Liv started in on her low moan. I got super nervous. I totally know what the low moan means…it means Hulk Liv is about to come out. haha. I knew exactly why she was doing it too. She heard the hamburger sentence and she was getting mad that she couldn’t have Culver’s. Well the combo of fasting, being on steroids, being groggy on anesthesia and being disappointed turned Liv into craziness. She started yell moaning and crying and thrashing and then she full on started yelling “I WANT CULVER’S!!!!!!” The dr and nurses were shocked because it was so different of the shy, quiet behavior they saw before the procedure. They started worrying something was wrong….they always start worrying something is wrong…and I always have to reassure them that this behavior is totally normal in this type of situation. I always get embarrassed when I have to say that too. It is really hard to deal with her like that. Well because it was after hours, the doctor herself walked us out to the car. It was the longest walk of my life. liv was in a wheel chair and she was screaming at the top of her lungs in the elevators, all the way down to the main floor, through the lobby of the hospital, and on the whole walk to the parking garage. The dr kept trying to talk to her and she even tried to compromise with her and said “Ok Liv, you can have fries at Culver’s, Ok? Just not a hamburger. It will make you so sick honey.” Liv just started screaming “NOOOOOOOO! NOOOOO!” at her. Oh man, it was the worst. Most of the drive home she was screaming at me. She looked possessed and like she truly wanted to hurt me. It was frustrating, hilarious, and sad to watch all at the same time. About 15 mins before we got home it was like she all of a sudden snapped out of it and stopped screaming She was just whimpering quietly in the back seat. I asked her if she was ok and she sadly nodded her head, “yes”. I calmly said one more time, “Liv I’m sorry you can’t have a hamburger honey, i didn’t know you couldn’t after this anesthesia, but we can get you some fries if you want?” And she silently started sobbing but said “Ok”. It broke my heart. I was so happy she wasn’t screaming anymore. A few mins later when I could tell she was way more with it, I asked her if she remember screaming at the doctors and me and daddy in the hospital and in the wheel chair in the elevator. She looked at me so confused. She thought I was making it all up. She totally didn’t remember doing it. Haha!
10/12: Because Liv’s counts were low at the last clinic, they also needed us to get counts checked 14 days into this month to see if they were elevated enough to resume chemo so we went to American Fork Hospital’s IV Therapy for that. The ladies there are SO NICE to Liv and she always is a lot happier there than when we have to drive all the way up to Primary’s. This time was a little more traumatic though because of her rough blood draw just three days before. Luckily it went perfectly and Liv liked doing the flushes herself. We got the call the next day that her counts were still low so we still couldn’t resume her chemo meds.
Over the rest of the month, before our next clinic, we did a lot of fun things. But all the while, Liv’s pain wasn’t getting any better. In fact it was getting worse, and I was getting more and more concerned about her. Liv’s oncologist decided we should probably have her come up and have her look at her.
10/20: We went in and had labs drawn and Dr. Afify met with us. We discussed the possibility of relapse. She also had a worry that it could be that because back pain and bone pain are signs of relapse. She thought that there could be other explanations as well. She said that sometimes steroids can cause arthritis in the hips. She said its very uncommon in kids though, normally you see that in teenagers. But she wouldn’t Liv to get an Xray that day to see if there was any of that going on. She decided to wait to do a bone marrow aspiration until Liv’s next clinic. She was scheduled for an LP that day anyway and she didn’t see any need to put her under anesthesia two different items. So we went for hip X-rays that day (all clear) and then we scheduled a bone marrow aspirate to be down with her LP in ten days.
Fun things during the month: Soccer, playing with friends, playing in Yia Yia’s yard in the super warm fall weather, playing with Baby Noah, piano lessons, seeing Aunt Sophie when she was in town, and school. I volunteer in the classroom and I love watching how focused Liv and Street are. They LOVE school!
Cornbelly’s as a family…I was especially proud and impressed with how determined Liv was to climb the rock wall. She doesn’t have a whole lot of strength in her muscles and normally its really hard for her and she wants to give up. But this time, she pushed herself to keep going!
Kindergarten Field Trip to the Hogle Zoo. Liv got to be with two of her best friends in her group, and I met them up there with Daysha and Sage and Baylor. It was so much fuN! It was also so funny to see my two kids. They are so tall….Liv is way taller than all her friends. She is two inches taller than Street, and Street is taller than all of his friends! ITs crazy. Haha. By the end of the field trip, Liv was really complaining of her legs hurting and her back aching 😦
Pumpkin Patch with Sage and Baylor:
We went to the Scarecrow Festival with Sage and Baylor. It was a really fun day! Part way through, I saw a girl with a bald head that looked to be close to Liv’s age. In fact, it was kind of shocking how much she looked like Liv did when she was bald. She had almost the exact body shape. We had been to the scarecrow festival the year before when Liv was in that exact phase. It was such a flashback and hit me right in the stomach. I saw her mom and I wanted to go talk to her so badly, but I also wanted to give her some privacy. Everyone handles things differently, and while I don’t mind people talking to me and asking me about Liv and her treatment, others are a lot more private. All of my kids were running to me and pointing at the girl and saying, “Look mom! She has a bald head too!” Right when I finally got the nerve up to go talk to the mom, she started walking away and I chickened out. I told myself that if I saw her again while we were there, I was going to go talk to her. We went through the rest of the festival and as we were leaving, I saw the girl again. I nervously walked over to her mom and asked if her daughter was gong through cancer. She told me she was. I asked her what type and how old she was. She was four years old, with Pre B ALL and her dr was Liv’s dr! It was so crazy! It was like looking at myself one year ago. I got tears in my eyes and pointed out Liv and told the mom that Liv was going through the exact same treatment, but was a year ahead of her daughter. She was such a nice mom, and looked a little overwhelmed. Probably the exact same way I looked a year ago. I was so grateful for how far we have come and how well Liv is doing now. I hope that seeing Liv provided her with some hope that it does get better and her daughter will be better soon.
SUU Football Game. We FROZE to death! But it was so much fun 🙂
Ward Trunk or Treat:
10/29: The night before we went in for clinic. Everyone was feeling some nerves over Liv’s bone marrow aspiration. Livvi was getting worse and worse with her back and tummy pain and she had a hard time enjoying herself for too long. The pain would always come back and she could come cuddle on my lap. We went out to Yia Yia and Papou’s house the night before to hang out and get Liv a blessing from Fred and Rick.
Poor Liv was such a trooper. It is so hard on these kids to fast all day, get their yucky chemo, get put to sleep and then wake up with pokes in their back 😦 The hospital is implementing a new computer system right now too so the appointment took about three times longer than it normally does. Luckily daddy came to hang out with us today! Sam met us at the entrance to the hospital and gave Liv an adorable stuffed White Blood Cell. She loves it and named it Puffy and snuggled with it all day at clinic 🙂 She was nervous to go to sleep and whimpered a bit but did such a great job. She was happy as can be to see me walk in her room with her favorite potato chips when she woke up 🙂 Once we finally got out of there we got her a big Protein Style burger at In N Out. Her aunt and cousin also met her with some Sweet Tooth Fairy treats. We got the amazingly good news that afternoon that her Bone Marrow was clear of Cancer Cells and she hadn’t relapsed. Yay!