After two and a half days in the hospital we got to come home! Her fever never came back after the first night and once we got her results back from her 48 hour culture (negative), we were able to go!
We did, however, have to go home on IV antibiotics. Because we had already started a course of antibiotics, and because they still didn’t know the exact cause of the fever, and because her ANC was still at zero, they wanted her to do a full 7 days of antibiotics. We had to do them every eight hours at 6am, two pm and 10pm. A home health nurse came to our house the first night at 10pm to teach us how.
The procedure: sanitize our hands, prep the saline and heparin syringes, sanitize the end of the clave, then attach the saline syringe, unclamp her tube, push the saline, detach the saline, attach the antibiotic, unclamp the antibiotic tube, allow the antibiotic to drain for 30 mins through Liv’s port, detach the antibiotic, attach the 2nd saline syringe, push the saline, detach the saline and attach the heparin syringe, push the heparin, detach the heparin, put a cap on the end of the clave. We had to do all this while being very careful not to touch the end of the clave or the end of the syringes. Liv’s port is a direct line into her body so you have to be so careful to not contaminate anything.
We did this for four days at home until the round of antibiotics were done. Liv was so great about it and never complained. The last day the nurse came to deaccess her. The dressing over the port has been on her for 7 days and when it was removed it pulled a lot of her skin off with it. It was very sore and painful for Liv the whole rest of the day. She cried a lot over it and I felt so terrible for her 😢
The next week went so great. Liv’s counts were still at zero on Tuesday when she was supposed to start her next round so it got pushed back a week and she didn’t have to go into clinic. We just hung out in our house for the week and the kids did crafts on crafts on crafts 😀
A friend of mine from high school sent Livvi an incredible package. She is friends with Taylor Swift’s makeup artist and her stylist! She went with them to pick out a beautiful sparkly dress for Liv and they also sent her Taylor’s favorite lipstick color’s! One night Liv wanted a make over so we got her all dolled up in her new stuff. She felt so pretty 🙂 Liv tells everyone that Taylor sent her the presents. Haha. I keep trying to tell her it was my friend and Taylor’s friends that sent them, but she seems to think Taylor Swift actually sent them to her. Haha!
On Thursday Stade had a slight fever (100.2) and was so cranky all day. The next day he was at 100.3. Because we have to be so careful with Liv, I decided I better take him in and see if they knew what was going on. My doctor looked him over and said his throat looked a little red but that he looked ok and it could just be teething. On Saturday he woke up so hot and was moaning and whimpering. We took his temp and he was at 101.6 so we called the on call doctor and he got him right in. He looked at his throat and said it looked red, then he used the tongue depressed to check further down his throat and said he saw sores down the throat. He then looked at his feet and his heels were peeling. He said he thought he had hand, foot and mouth. No!!! Seriously bad timing with Liv’s counts being low. The doctor suggested we separate Liv from Stade if at all possible for a few days. My parents and Rick’s parents were so awesome and took my kids all weekend to try and avoid Daci and Street getting sick as well. I spent the weekend in the house with Stade. On Monday Liv had to get her labs drawn so her grandpa brought her back home for her nurse to access her. Before she got there I sanitized all the surfaces and the couches in the main room.
When Liv got here she was really quiet and sad. She wanted me to sit with her while we waited for the nurse. After a minute I could tell she was silently crying. I knew she was anxious about port access and opened my mouth to suggest she get her blankie and kitty when it all of a sudden dawned on me that I had forgotten to tell her grandma and grandpa to bring her blankie and kitty! Shoot. I knew this was why she was so upset. They are her comfort and without them she is quite a mess. Nurse Tracey got here and she started crying hard. I asked her if she was upset that she didn’t have blankie and kitty and she shook her head yes while crying louder. I asked her if she wanted me to get a different blanket and stuffed animal. She said yes but it didn’t help. She was so upset and so scared. She cried hard through access and it was rough 😢
We went to clinic today and she was really sad and sullen the whole time. She had to fast because she had to get a lumbar puncture today as well. Anytime she has to fast she is a lot grumpier at clinic.
Cytoxan is a strong chemo that she only has once during treatment. That was a push that she got today. It can damage the bladder if it’s left in there too long so they gave her a fluid bolus with it to make her need to urinate and clear her bladder more.
They also gave her ARA-C (you say it air-uh-see). She will get this the next three days at home through her port from the home health nurse as well.
She also started her chemo pill that she takes every day for the next 6 weeks called Thioguanine (6TG). She has to take this pill on an empty stomach so she can’t eat two hours before she takes it and one hr after she takes it. I try to let her have a snack at 230, give it to her at 4:30, and then she can eat after 5:30.
She also got a lumbar puncture today with intrathecal methotrexate into the spinal fluid.
They told us that both Cytoxan and ARA-C are nauseating, and combined will make the nauseousness really bad. Often times patients vomit a lot, usually waking up in the night with throwing up and the next day being rough. They recommend that we stay on top of the Zofran every six hours, even waking her up at night so the the nauseousness doesn’t get out of control.
Next week we don’t have to go into clinic. Yay! They will do the four days of ARA-C at home. But They also said that by mid next week her counts will be at zero again. Most patients also need platelet transfusions and RBC transfusions at that point. So if that’s the case we will need to go in for that. Also, we for sure have to go in on Aug 30th for her Pentamadine. If she weren’t allergic to Septra we may not have had to go in for a whole month. Darn allergies!
After these rough next two weeks, she gets two weeks off of clinic and chemo! We are hoping her counts climb back up before they start the next round of Interim Maintenance 2.
After her LP today she woke up happy and hungry 🙂 She immediately asked for a cheese stick and Gatorade and wanted Smartfood from the cafeteria for the ride home 🙂 We also got her Costa Vida for lunch.
She hasn’t been sick today. Yay! She did get sad when I told her she couldn’t eat for three hours. Haha. This girl and her food! She started getting really sad and whiny so I suggested we do her favorite thing…. Cook! We made her favorite white chicken chili to have for meals the rest of the week. That did the trick and she was happy for the rest of the evening 🙂
At 6pm she started asking to go to bed and was really tired. She laid on the couch and watched the olympics with us and then at 630 She got in her pjs and brushed her teeth and told me she was ready to be tucked in. It was a long day for our girl. I hope she doesn’t get too sick in the night or tomorrow!