Since getting the results, each day has gotten better and better. Hooray! Those dang steroids have left her system and she is pretty much back to her normal self. She is very happy and giggly and wants to play during the day. Part of her is still a little reserved and gets sad every once in a while, which I think may just be a part of normal Livvi now. Her life has been flipped on its head, and as resilient as she is, I’m sure she is a changed little girl. I would be willing to bet pretty much every cancer kid goes through a change in personality. They have to grow up and deal with things that are beyond their years. It makes me sad to see her be a little different, but I also know that she will grow and be wise beyond her years because of it.
We still stay in for the most part. She went to play at her GG’s house (my grandma and grandpa’s house) and had a sleepover at her yia yea’s house and we went to her cousin’s house once as well. But for the most part, we don’t really venture out of our house very often. She still LOVES to play Memory, and has gotten a few more games than just her Minnie Mouse and Dr. Seuss now. Haha. She literally would play it all day, every day! She also loves to do the Arts and Crafts that have been given to her. She also works on her preschool worksheets that her teacher sends home from school. She is always asking me if she can clean up the kitchen and do dishes too. Haha! Luckily I am not having to devote EVERY.SINGLE.SECOND of my day to keeping her happy anymore. YAY! She can entertain herself and keep herself happy for periods of time now. She is a lot more dependent on me than she was before the diagnosis, though. She likes me to be nearby and wants to play games with me a lot.
Her wardrobe choices are cracking me up lately. She doesn’t fit in any of her clothes still. So, she wears a lot of the pj’s and nightgowns that people have given her. She loves them all! She will change her headbands a few times a day, and loves to pick out which one she will wear that day 🙂 When she wants to go outside, she always grabs a hat, sunglasses, flip flops and a coat. Haha! She is also SUPER giggly this last week, which I LOVE! Its so funny to watch her get in these giggle fits and gasp for air. Her laugh has changed a lot with the weight on her (she is still up 12 pounds from when she started). But I love her little giggle right now 🙂
Her hair has started to grow back in. She has a lot of white, white blond peach fuzz growing in. It’s funny though, because there are a few brown pieces here and there on the top of her head that haven’t fallen out yet, and then right around her forehead she still has some brown hairs. So right now she has two different types of hair on her head 🙂 They told us over the course of the next nine months, her hair would fall out and then grow back in, depending on the medications she is on. Then after nine months, her hair should grow in and not fall out anymore.
Liv got a full 12 days off of clinic and meds (minus the antibiotics she was taking for her ear infection)! It was so great to spend that time together and allow her to get back to her normal self. On Monday we had our first home healthcare visit. The nurse came to draw labs from her port so that they could see if her numbers are good enough to be able to do her chemo the next day at the clinic. I put her numbing cream on an hour before the nurse got here. Liv started getting whining and nervous. When the nurse got here to the house, Liv immediately clammed up. She wouldn’t talk to her and she kept burying her face in her hands and in me. The port access didn’t go great. Liv was screaming and trying to push and kick the nurse away. She wouldn’t lift her head up and puff her chest out to make it easier for the nurse to get the needle in her port. She actually did worse than she does at the hospital for port access, I’m guessing because she is more comfortable at home and it was easier for her to freak out. Once she was accessed, she did fine for the lab draw but she still wouldn’t talk to the nurse the whole rest of the time that she was there. The nurse left her accessed since we were going into the clinic the next day, and that way they wouldn’t have to poke her again.
After the nurse left I gave her her dose of Septra. Septra is an antibiotic and a very important one for Leukemia patients. For the full 2.5 years they take it every Monday and Tuesday, morning and night. It is a preventative dose that fights to prevent Pneumocystis from entering their lungs. Leukemia patients are very susceptible to this antibiotic and it can be very life threatening. When Liv was one, she was diagnosed Septra for an ear infection. About 7 days into the antibiotic she got a bright red splotchy rash on her face and body. I told our doctor this the first day of treatment. She consulted with the immunologist and they decided that because Septra was so important to her treatment, they felt they should try and challenge the allergy. They gave her 10% of the regular dose the first day, and then a little bit more the next day, and then the full amount the next day. She didn’t seem to have a reaction so they felt that she had probably outgrown the allergy. Well Monday afternoon, around 3pm, Liv’s cheeks got bright red. I thought it was kind of weird, but didn’t think anything of it. We went to visit her cousin that night and they were playing and having fun but her face kept getting redder and redder. All of a sudden it clicked in my brain. This was a Septra reaction! It looked just like it did when she was a baby! I felt her forehead and she was a little warm. We went home and I took her temperature and she was at 99.5. I decided to watch her for a little bit. 99.5 isn’t a temp that we need to call the doctor about. I was trying to decide if I should give her her second dose of Septra for the day, or just wait and ask the doctor about it in the morning. She started complaining of her back itching. I took her shirt off and she had some red blotches on her back. I took her temp again and it was 100.1. Still not high enough that we have to go in (100.4 for over an hour, or 101 for a one time reading), but I decided to call the on call doctor. She advised me to not give her the Septra, give her Benadryl, and watch her temp throughout the night. She woke up in the night crying, “Owie! Owie!” I ran in there, she was only at 99.5. She was complaining of her port hurting, she had rolled over on her tummy and was laying on the port 😦 She cried for over a half hour in pain so I gave her some Oxycodon. She couldn’t have Tylenol because it would mask her fever, and I needed to keep monitoring her. They Oxy worked quickly and she slept the rest of the night.
On an unrelated note to the Septra reaction, Liv also had some pretty bad leg pain during the day that day. She cried and cried and wanted to lay in bed. I gave her Tylenol and she snuggled up with her iPad (she could have Tylenol at that point because she hadn’t gotten a fever yet). Once the Tylenol kicked in, Daci brought in a cute toy cupcake making set that someone had sent them and Liv had fun making cupcakes for everyone 🙂 She hadn’t had leg pain since she was on Steroids (side effect), so I was concerned about that as well.
Yesterday was our first day back and I was really anxious to see how she would act at the hospital. She got all dressed up in her new bright, My Little Pony pj’s and chose a bright rainbow headband 🙂 On the way there she was pretty happy and smiley, and even as we were walking into the hospital she was being silly. When we got to clinic, she walked right over to the arts and crafts table and started coloring. This was an improvement! Before she would start whimpering and moaning as soon as we walked into clinic. Then we did lab draws. She was pretty sad during that and wouldn’t answer the nurse’s questions. Then we did vitals and again she didn’t say anything. Plus side to all of it was that she wasn’t moaning or crying though 🙂 That really is a big improvement. Then we went back in for the doctor to come visit with us. While we were waiting, I pulled out my phone. She used to beg me to take selfie’s with her. I flipped the camera around and she got shy. I think she knows she looks different. She first hid behind my back, and then started making silly faces. She wouldn’t take a normal smile one, but she was doing lots of silly faces. The child life specialist came in after a few minutes and Liv actually let her talk to her and play with her during the appointment! She still had to be on my lap, and she wouldn’t talk back to her, but she at least wasn’t screaming at her and refusing to play with her this time 🙂
We talked with her doctor about the Septra and unfortunately she does feel like its an allergic reaction. She worries it will only get worse and worse each time, so we have to try the only other option they have for Pneumocystis prevention. Sadly, it isn’t a very fun route 😦 They will give her Pentamidine every three weeks through her port. It takes an hour to administer it and it has some adverse reactions associated with it 😦 She said most patients feel like they can’t breathe when it is being administered, so they will likely need to give Benadryl right before as well. Also, it has to be done in clinic, so even when we aren’t scheduled to come in, we will have to drive up to Primary Children’s to get it 😦 Because there are so many downsides to it, our doctor is still wanting to try and challenge the allergy safely so that we don’t have to deal with the Pentamidine for 2.5 years. We have an appointment with the immunologist next week to discuss our best options.
I also told her about Liv’s leg pains the day before. She said it is likely still some leftover effects from the steroids and they wouldn’t worry about it unless it got to be chronic. We then discussed our next phase of treatment with her. She is entering Consolidation, which is considered one of the easiest rounds of treatment. She will take a Chemo pill called 6MP every evening. This round has the heaviest Lumbar Puncture schedule, however. They do three in a row, which actually is 4, because we had to do one at our last clinic appointment as well. They administer Intrathecal (in the spinal fluid) Methotrexate (Chemo) during each LP. She also gets Vincristine (chemo) once in her port this round (she did that yesterday). Her numbers should continue to stay up this month 🙂
When we went down for her LP she did great and was happy with Rick and I in the waiting rooms. Once it was time to walk back I could feel her getting nervous but she didn’t fight it. When I laid her on the table she got giant tears in her eyes and her poor hands were shaking. I held them tight, smiled big, and told her it would all be ok and that she was so brave. She started crying about five seconds before the meds hit, but then she was out. It doesn’t get any easier watching her get put under. It breaks my heart every time. She did great though, so much better than the screaming and thrashing from last time. I went back out to the waiting room to find Rick. We went and filled her prescription, got her a snack from the cafeteria and went back to the waiting room. Five minutes later the nurse came and said she was all ready for us. The nice thing about the LP’s is that they are so quick. We usually get to go see her about 20 minutes after I left her.
She had been fasting since midnight (really she ate last at 6:30pm the night before) and she didn’t complain of being hungry once the whole day. Such a drastic difference from fasting while on steroids! When we walked back and found her awake in her bed she was of course not answering the nurses, and refused to talk to us with the nurse standing there. We are really trying to get her to tell us what she wants or needs with her words so we said, “Hi Liv! You did so great! How are you feeling!?” No answer. “Do you need anything?” No answer. “Can we get you anything?” No answer. Finally I said, “Are you hungry?” Emphatic shaking of the head. Haha. I guess we will work on the talking next week. Hey, she didn’t scream and cry this week, so that was an improvement. We will take it one step at a time 😉 I gave her a bag of chips and the nurse brought her a slushy. She went to town on those 🙂
They monitored her for a few minutes and then we were free to go. Liv does great with anesthesia. I know a lot of kids throw up the whole day after they get anesthesia and are so nauseous. I am so grateful that Liv reacts this way. She is able to eat anything she wants after and is completely normal and plays great the whole rest of the day.
We had to go do one other doctor appointment that day. Liv has had really bad knock knees since she was tiny. I had her checked out last year and they did x-rays. The orthopedist believed that she would grow out of it on her own but wanted me to come back in a year to have her reevaluated. It hadn’t quite been a year yet, but I kept feeling like her legs were looking worse and my pediatrician also recommended I get her back in. Our oncologists have been so great to work with, and they said this would be the best month for her to do any extra appointments or procedures so they got us into the orthopedist quickly. They did x-rays of her legs and then the doctor came in to talk with us. He said her alignment had actually come in a little bit on her right leg, and her left leg was still the same. He said he is encouraged by this and that it seems to be correcting itself. He had her put her legs out straight and he immediately said, “Oh she has twisted femurs! This is probably why you feel like its getting worse. As time goes on, she’s just allowing it to turn in more and more. Anyway, he said the knock knees should correct itself over time, if they haven’t by age 9 they may do something for her, but he didn’t seem to concerned. Yay! We headed home and Liv was happy as can be to not have anything else the rest of the day 🙂