Mia's levels were all ready to start today! She did great and literally came out of anesthesia running around the clinic! The nausea doesn't usually set in for a day or two. Hoping to be lucky this round with minimal side effects! She will go get her 2 hour chemo tomorrow now instead. Logan has to be at the clinic at 6:30 am for his tubes so we thought it would be best not to have to wait around after for chemo.
Thank you for all of your prayers! They are definitely working!
Monday, August 24, 2015
Saturday, August 22, 2015
August 22nd, 2015
So the saying, "It takes a village," has been so evident through these past months. I felt like we would never get to her last cycle and here we are 2 days away. We really couldn't have gotten through these past months without your never ending support. It's crazy to think that we were told that Mia would get 6-8 of intense chemo and because of illnesses and delays, when we finally reach maintenance it will be close to 11 months since she was diagnosed. Our support team is amazing and we are so greatful!
Mia's has peach fuzz on her head and it's exciting. From here on out, her hair will start to return little by little. Hair loss is not one of the side effects from this coming cycle nor maintenance. Mia has been telling us, she has hair which is so cute! She will get her spinal tap and 2 chemos on Monday and then instead of returning on Tuesday for her 2 hour chemo, she will get it on Wednesday. Logan will be getting his 5th set of ear tubes on Wednesday, so they were nice enough to work with us and let Mia get her chemo then. Praying both kids recover fast and have a good week!
Mia's has peach fuzz on her head and it's exciting. From here on out, her hair will start to return little by little. Hair loss is not one of the side effects from this coming cycle nor maintenance. Mia has been telling us, she has hair which is so cute! She will get her spinal tap and 2 chemos on Monday and then instead of returning on Tuesday for her 2 hour chemo, she will get it on Wednesday. Logan will be getting his 5th set of ear tubes on Wednesday, so they were nice enough to work with us and let Mia get her chemo then. Praying both kids recover fast and have a good week!
Monday, August 17, 2015
August 17th, 2015
We are delayed again! Although Mia's counts were close, we will be waiting to hear when the OR will have a time for Mia's spinal tap next week. Both Mia's oncologist and nurse practioner felt that waiting was in her best interest! Their main concern is her history of serious infections in the past so they are strictly following the national protocol. Again, we are all praying she avoids any other serious illnesses!
Wednesday, August 12, 2015
August 12th, 2015
We traveled to CHOP in Vorhees early this morning to hopefully start Mia's last cycle before maintenance. Unfortunately, her counts were not high enough to begin. Her body is still recovering being the last round was so rough on her system and the bacteria infection was so serious. The doctor also thinks that she has mucositis because she's been so irritable, still eating very little, and has been vomiting when she's not on anti-nausea meds. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. She is scheduled to begin this cycle next Tuesday and Wednesday for a spinal tap and different chemos on both days.
Many people have been asking what maintenance looks like. While it won't be as intense, it will still be a long road. She will receive a spinal tap the first 2 months then the 3rd month off, then the pattern will repeat. She will also be getting chemotherapy once a month at the clinic. At home, she will get an oral chemo everyday, another oral chemo once a week and steroids the first 5 days of every month until March 2017. After that, she will just be checked regularly to make sure she stays in remission. She also won't be able to get any vaccinations until 9 months after March 2017. This is especially concerning to us because she doesn't have any complete vaccinations to begin with because she has been so sick since she's been born which they have no idea if that was a precursor for the cancer or not.
As of now, we are trying to relax and enjoy the last few weeks of summer before school starts. I will be returning to work and Mile and I will be sharing the responsibility of taking her to treatments. We are praying that she remains healthy and avoids any long hospitalization stays and that the boys can begin this year with a fresh and stress free start! Thank you for keeping us in your prayers!
Many people have been asking what maintenance looks like. While it won't be as intense, it will still be a long road. She will receive a spinal tap the first 2 months then the 3rd month off, then the pattern will repeat. She will also be getting chemotherapy once a month at the clinic. At home, she will get an oral chemo everyday, another oral chemo once a week and steroids the first 5 days of every month until March 2017. After that, she will just be checked regularly to make sure she stays in remission. She also won't be able to get any vaccinations until 9 months after March 2017. This is especially concerning to us because she doesn't have any complete vaccinations to begin with because she has been so sick since she's been born which they have no idea if that was a precursor for the cancer or not.
As of now, we are trying to relax and enjoy the last few weeks of summer before school starts. I will be returning to work and Mile and I will be sharing the responsibility of taking her to treatments. We are praying that she remains healthy and avoids any long hospitalization stays and that the boys can begin this year with a fresh and stress free start! Thank you for keeping us in your prayers!
Wednesday, August 5, 2015
August 5th, 2015
We celebrated Mia's birthday at the hospital Thursday night with all of her grandparents and brothers! She had a great celebration!
She was released from the hospital on Friday morning after she received a blood transfusion. She has been doing great since she has been home and has even started to eat a little. She's been primarily tube fed for the past 4 weeks so we are glad that her appetite is returning.
We went this week for lab work at the clinic. Her immunity levels have dropped since the hospital stay but that's what they expected to happen. Her heart rate was a little elevated so we are just watching for any illnesses but she sometimes just has a normal high heart rate.
We are waiting to find out what day the OR has avaliable next week to start her last intense round of chemo. She will start off with a spinal tap and chemo on day 1 and then return the following day for more chemo. This cycle is a little tricky because the chemo she will receive will be in escalating doses but also dependent on her kidney function levels. We are just hoping she doesn't get too sick this cycle and continues to eat more each day!
She was released from the hospital on Friday morning after she received a blood transfusion. She has been doing great since she has been home and has even started to eat a little. She's been primarily tube fed for the past 4 weeks so we are glad that her appetite is returning.
We went this week for lab work at the clinic. Her immunity levels have dropped since the hospital stay but that's what they expected to happen. Her heart rate was a little elevated so we are just watching for any illnesses but she sometimes just has a normal high heart rate.
We are waiting to find out what day the OR has avaliable next week to start her last intense round of chemo. She will start off with a spinal tap and chemo on day 1 and then return the following day for more chemo. This cycle is a little tricky because the chemo she will receive will be in escalating doses but also dependent on her kidney function levels. We are just hoping she doesn't get too sick this cycle and continues to eat more each day!
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