Mia is feeling a little better today! Her blood cultures are now coming back negative for the bacterial infection which means that she is on the correct antibiotics. She is still feeling the side effects of that along with the virus she has. Having no immunity will definitely delay her recovery. Infectious disease has been following up with her and they are working on a plan for future illnesses. Being she has had issues with her intentional tract in the past also, they want to be prepared for next time. She's hanging out and having fun with Daddy and the boys have a chance to spend a great weekend with Mom too.
Your constant prayers have been a blessing to us! Hope you are enjoying this beautiful weekend!
Sunday, May 29, 2016
Friday, May 27, 2016
May 27th, 2016
So Mia continues to be having a rough go! She's been spiking higher temps 2-3 hours into an IV Tylenol dose. This morning she was 104.4 and has been completely irritable. Infectious disease finally got the name of the bacteria, Enterobacter cloacae. The suspicion is that the sapovirus she was diagnosed with a few days ago crossed into her blood stream. Now that she's on the right antibiotic she should start improving within the next few days. They will continue to draw blood cultures to make sure it clears and that she's on the right antibiotic being a lot of these bacteria are resistant to some antibiotics. Hoping she rests over the weekend and starts recouperating before starting chemo and steroids again on Monday.
Thursday, May 26, 2016
May 26th, 2016
The Doctor drew new blood cultures after her high temperature yesterday. So far we know she's positive for a bacterial infection but won't know the specific type for another 24-36 hours. She's on IV antibiotics already and then they will change once we know more information. She's having joint pain which may be from the infection and still continues with stomach cramps from the virus.
Today looks like a Doc McStuffins marathon!
Today looks like a Doc McStuffins marathon!
Wednesday, May 25, 2016
May 25th, 2016
It's been a rough two days for Mia. She tested positive for the sapovirus (a type of stomach virus) and has been dealing with a lot of stomach cramping preventing her from sleeping. She's been on oxy for pain which seemed to help last night. She's been spiking some low grade temps and now this morning she's 103.6. We are still watching her heart rate as its been coming down with hydrocortisone but now elevated higher again with this fever. If it stays high, they will order an ekg and echo. Her leukemia cells in her blood have been around the same the past few days! Please continue to pray for the clearing of these cells and an improvement in her health! Thank you!!!
Monday, May 23, 2016
May 23rd, 2016
The OR had a cancelation early this morning so Mia was able to have her spinal tap. Great news; her spinal fluid is still completely clear of leukemia. The leukemia cells in her blood have been decreasing daily as well. She also walked a little today around the room! All great things!!!
Her heart rate has still been elevated so they are watching it closely and trying to figure out the cause. She started spiking low grade fevers through the night. They drew blood cultures and will check them at the 24, 48, and 72 hour mark. She's been having stomach issues also so they will be testing her stool also for any viruses. She's on isolation so she can't leave her room because of her runny nose and fever! Hoping it all passes soon!
She had fun playing princesses, tea party, and making a picture out of band aids today! She's been in a great mood too despite not sleeping well!
Her heart rate has still been elevated so they are watching it closely and trying to figure out the cause. She started spiking low grade fevers through the night. They drew blood cultures and will check them at the 24, 48, and 72 hour mark. She's been having stomach issues also so they will be testing her stool also for any viruses. She's on isolation so she can't leave her room because of her runny nose and fever! Hoping it all passes soon!
She had fun playing princesses, tea party, and making a picture out of band aids today! She's been in a great mood too despite not sleeping well!
May 23rd, 2016
Mia had some Daddy time this weekend. She's been playing more and eating some which is great. Unfortunately, she is still not walking. We are hoping we can get her to start again soon!
Her heart rate today was elevated and obviously concerning. The highest it went was 185. After speaking with the nurses they increased her fluids. It has come down to around 150, which is still high but better. The consensus is that her fluids were lowered too much and she was not drinking enough. They will continue to monitor her vitals throughout the night and tomorrow and continue to give extra fluids.
Her immunity has dropped significantly which is normal with the chemotherapy, therefore they will begin giving her anti-fungal medication to avoid an infection.
Her spinal tap was originally scheduled tomorrow for the sedation unit, however being she has been experiencing cold symptoms she will be switched to the OR with anesthesia. Being this was a last minute decision her spinal tap might be pushed to Tuesday. Please continue to pray for clear results.
The boys and I had a fun and great weekend together!
We are definitely feeling your support and prayers and are grateful for each one! Have a great week!
Her heart rate today was elevated and obviously concerning. The highest it went was 185. After speaking with the nurses they increased her fluids. It has come down to around 150, which is still high but better. The consensus is that her fluids were lowered too much and she was not drinking enough. They will continue to monitor her vitals throughout the night and tomorrow and continue to give extra fluids.
Her immunity has dropped significantly which is normal with the chemotherapy, therefore they will begin giving her anti-fungal medication to avoid an infection.
Her spinal tap was originally scheduled tomorrow for the sedation unit, however being she has been experiencing cold symptoms she will be switched to the OR with anesthesia. Being this was a last minute decision her spinal tap might be pushed to Tuesday. Please continue to pray for clear results.
The boys and I had a fun and great weekend together!
We are definitely feeling your support and prayers and are grateful for each one! Have a great week!
Thursday, May 19, 2016
May 19th, 2016
Another rough day here. Mia has been extremely tired and slept most of the day! She was happy when Nanny and Ryan showed up with a new doc mcstuffins toy to play with.
She received a blood transfusion today which ran over the course of 3 hours. She was annoyed because they need to check vitals often during the transfusion. Her NG tube is placed and we will begin feeds tonight. She also will receive an immune booster medicine tonight that will run over the course of 2 hours with checking vitals every 15 minutes.
Ryan was tested today and we will know in 2 weeks if he's a match. Again, there's a better possibility of a stranger being a match than Ryan. Jen from JPC Children's Foundation is working hard getting ready for the drive. A June date will follow soon.
Tomorrow morning will be her last steroid dose for 10 days. Hoping she can rest up this weekend with Daddy! Monday morning will be another spinal tap. We are praying that she continues to show no leukemia cells in her spinal fluid.
Have a a great weekend!
She received a blood transfusion today which ran over the course of 3 hours. She was annoyed because they need to check vitals often during the transfusion. Her NG tube is placed and we will begin feeds tonight. She also will receive an immune booster medicine tonight that will run over the course of 2 hours with checking vitals every 15 minutes.
Ryan was tested today and we will know in 2 weeks if he's a match. Again, there's a better possibility of a stranger being a match than Ryan. Jen from JPC Children's Foundation is working hard getting ready for the drive. A June date will follow soon.
Tomorrow morning will be her last steroid dose for 10 days. Hoping she can rest up this weekend with Daddy! Monday morning will be another spinal tap. We are praying that she continues to show no leukemia cells in her spinal fluid.
Have a a great weekend!
May 19th, 2016
Today was a tough day for Mia. Her blood levels are beginning to drop which is to be expected. She will probably need blood within the next day or two. She has spent most of the day in bed and has not had any desire to walk on her own or really play. She did however paint one picture and managed to paint mommy's shirt while she was at it! She has also not been eating so we will be working with nutrition soon to get an NG tube like she had in the past. Last night was rough because she leaks through diapers despite being changed every four hours. We are hoping they will decrease fluids soon.
Again, not sure how to thank everyone for their prayers and support!
Again, not sure how to thank everyone for their prayers and support!
Wednesday, May 18, 2016
May 18th, 2016
Mia had fun today with Aunt Bridget! We visited the playroom several times and even painted some pictures. She was pretty tired most of the day and the side effects of the high dose of steroids she is on are in full effect. Hoping for a peaceful night for her!
Tuesday, May 17, 2016
May 17th, 2016
Thank you for all the texts, posts, and emails! It was a long day to say the least!
Mia had a tough time with nausea and vomiting, but we finally got it under control with more than one medication. She's also on morphine for pain and Benedryl to help counteract side effects of the strong dose of steroids she is on! Today is day 1 of 29 of this first cycle.
Being walking has been an issue in the past, we got her up and walking a little tonight. She was wobbly at first but then did great! She will be starting OT and PT here at the hospital this week.
Taking one day at a time!
Mia had a tough time with nausea and vomiting, but we finally got it under control with more than one medication. She's also on morphine for pain and Benedryl to help counteract side effects of the strong dose of steroids she is on! Today is day 1 of 29 of this first cycle.
Being walking has been an issue in the past, we got her up and walking a little tonight. She was wobbly at first but then did great! She will be starting OT and PT here at the hospital this week.
Taking one day at a time!
Monday, May 16, 2016
May 16th, 2016
Mia is out of surgery! She did great but woke up prematurely and didn't sleep the anesthesia off. She was pretty nauseous and upset. She's finally settled and sleeping on me. We're are just sitting and waiting while she rests before going up to the oncology floor. Thanks for your amazing support and prayers!
May 16th, 2016
Mia had a great weekend! On Saturday, we watched Daddy and Ryan run the local 5K race. It was great to get out and walk around. We also went to Point Pleasant and Mia and the boys enjoyed the rides! Today was a low key day of packing and playing. Mia has given almost every toy a checkup!
We talked to the boys tonight and basically told them that we are strong and going to beat this. Mia had a hard time going to bed tonight and understands that something is up. We are ready to wake up and start fighting this!
She is strong and going to kick cancer's butt! Keep praying!
We talked to the boys tonight and basically told them that we are strong and going to beat this. Mia had a hard time going to bed tonight and understands that something is up. We are ready to wake up and start fighting this!
She is strong and going to kick cancer's butt! Keep praying!
Saturday, May 14, 2016
May 14th, 2016 - Relapse
First of all, we seriously can't thank everyone for the support & prayers we have gotten since hearing the news of Mia's relapse yesterday. They say it takes a village and that's what will help her kick cancer's ass for good. As devastating as this is, we are trying to be positive and stay strong for Mia and the boys.
The Good News:
1. There is no mass in her chest which is what she had when she was originally diagnosed.
2. There is no cancer in her spinal fluid and was confirmed by pathology tonight.
3. Her heart is functioning well and can handle the upcoming chemo regimen.
4. She hasn't had any fevers yet.
5. She is home for the weekend unless she spikes a fever.
6. Her vitals are stable.
The Rest of the News: 1. She had a bone marrow biopsy this morning and it is confirmed that Mia's leukemia is back. (Her survival rate went from 80-85% to 40-50%)
2. She will receive 2-3 months of inpatient chemo at CHOP in Philadelphia.
3. The goal is to get her back in remission, then proceed into transplant.
4. She will also receive radiation at UPENN and eventually a bone marrow transplant.
5. Unfortunately, Logan most likely will not be a good match because of his chromosomal abnormality.
6. Ryan will be tested within the next week; siblings have a 25% chance of being a match.
7. Please keep an eye out for a Bone Marrow Drive in Howell for Mia.
Mia will be admitted Monday morning for port surgery. Once she's out of recovery, she will be admitted to the oncology floor and will begin day 1 of this first cycle. We will be updating everyone on here and Facebook every step of the way. We truly can't express how appreciative we are for everything!
The Good News:
1. There is no mass in her chest which is what she had when she was originally diagnosed.
2. There is no cancer in her spinal fluid and was confirmed by pathology tonight.
3. Her heart is functioning well and can handle the upcoming chemo regimen.
4. She hasn't had any fevers yet.
5. She is home for the weekend unless she spikes a fever.
6. Her vitals are stable.
The Rest of the News: 1. She had a bone marrow biopsy this morning and it is confirmed that Mia's leukemia is back. (Her survival rate went from 80-85% to 40-50%)
2. She will receive 2-3 months of inpatient chemo at CHOP in Philadelphia.
3. The goal is to get her back in remission, then proceed into transplant.
4. She will also receive radiation at UPENN and eventually a bone marrow transplant.
5. Unfortunately, Logan most likely will not be a good match because of his chromosomal abnormality.
6. Ryan will be tested within the next week; siblings have a 25% chance of being a match.
7. Please keep an eye out for a Bone Marrow Drive in Howell for Mia.
Mia will be admitted Monday morning for port surgery. Once she's out of recovery, she will be admitted to the oncology floor and will begin day 1 of this first cycle. We will be updating everyone on here and Facebook every step of the way. We truly can't express how appreciative we are for everything!
Monday, May 2, 2016
May 2nd, 2016
Sorry for the delayed update. Mia developed an allergy to her antibiotic that she takes every weekend for pneumonia prevention. So she is now allergic to sulfa drugs in addition to penicillin. She has been covered in hives and rashes since last Monday. It is getting better but not completely gone as she has been breaking out in the late afternoon/early evening. When we go for chemo this month we will discuss an alternate medication.
She also has an appointment with the gastroenterologist this month to discuss various GI issues that she has been having. Hoping for some answers there.
The kids were so grateful to receive some amazing wishes from JPC Childrens foundation and had a great time at the event. We couldn't be more thankful for the generosity and support they have shown our family. Other than that, she has been busy playing doctor and giving all of the boys' toys a check up like Doc McStuffins.
Have a great week!
She also has an appointment with the gastroenterologist this month to discuss various GI issues that she has been having. Hoping for some answers there.
The kids were so grateful to receive some amazing wishes from JPC Childrens foundation and had a great time at the event. We couldn't be more thankful for the generosity and support they have shown our family. Other than that, she has been busy playing doctor and giving all of the boys' toys a check up like Doc McStuffins.
Have a great week!
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