March 30th, 2015

So Mia came home today!!! Her infection looks so much better and the chemo is out of her system. On Thursday, she tested positive again for c-diff which is a staff infection. It's the same infection she had when she was in the hospital for the initial treatment. So we came home on antibiotics anyway and she's been vomiting and very nauseous. Logan was so excited that he wouldn't let me drive to Philly alone and came with me to pick Mike and Mia up! Ryan stayed home and made her a welcome home sign! We feel so blessed to have such amazing kids! We are so lucky to have the best Nana and Grandma in the world who were working hard to get the house ready for her! We are hoping tomorrow will be a better day for her! Thanks for all the love and support as always!!!

March 24th, 2015

So the plan has changed. After speaking with oncology today, we will start our next cycle tomorrow and continue on the antibiotics as recommended by infectious disease. Mia will start early tomorrow morning with a spinal tap and then get high dose chemo over a 24 hour period. They then give the antidote; and we wait for her to excrete it out of her system. this can last anywhere from 2-5 days. We will also be monitoring her diaper area as this chemo can cause skin breakdown and being she already had an issue there she will get diaper changes every 1-2 hours around the clock. Hopefully, once it is out of her system we can discontinue antibiotics and go home! Praying things go smoothly tomorrow!

March 24th, 2015

Sorry I haven't updated the site, it's been a long week without sleep. Mia was having a tough time digesting the formula she was getting via her N-GTube which was causing major stomach problems all day and night. She is now on a hypoallergenic formula and is doing much better.

The oncologist was not ready to take her off her antibiotics today as planned because the infection is not completely cleared up yet. Both the oncologist and infectious disease doctor will be monitoring it daily and then make a decision. We still cannot start chemo until the infection is cleared and she is off of the antibiotics for at least a day in between.

As for Mia, she's been playing, singing, and dancing on a daily basis! Life is good!

March 16th, 2015

So it looks like our plan to start chemo is delayed by another week as of now. Mia's infection is still far from clear so they have extended her antibiotics another week. Then they can reevaluate to see if it's completely resolved to start chemo. The unfortunate thing is that she has to remain in the hospital until this clears but at least she will be monitored closely. She is still not up to her goal yet with tube feeds so it gives us more time for her to adjust to that also. Praying she will be home sooner than later!

March 14th, 2015

Today was a great day! The boys came up to visit and Mia was so happy to see them!

A couple people have asked what comes next now that she's in remission! Mia still has 4-6 months left of intense chemo. After that she will be considered on maintenance and will get chemo once a month and most likely have a daily oral chemo she'll take at home. Maintenance is for 2 years! So like I said we have a long road ahead of us! We pray that she remains in remission throughout this process and after treatments are finished!

She will finish her antibiotics this Monday and will start chemo on Tuesday. We are hoping to be back home by next weekend!

Thank you for all the well wishes on our amazing news! Enjoy the rest of your weekend!

March 13th, 2015

Today, we received the most amazing news! MIA IS IN REMISSION!

Although we have a long road ahead of us; it is great to have a light at the end of the tunnel! We are incredibly grateful for all of your prayers, support, donations, cards, and gifts. We wouldn't be where we are today without your love and support! God is good!

With love always,
Teresa & Mike

March 12th, 2015

Okay, so talk about anxiety... There were no results back again today. We are hoping tomorrow is the day!

Mia had another rough night last night because she threw up the tube feeds. We started a new plan this afternoon and hoping her stomach will be able to tolerate it!

She played and ate a little today so hoping those are all good signs to recovery!

March 11th, 2015

So still no final results yet! The doctor is hoping we will get something back tomorrow!

Today was a great day for Mia! She's been sitting up and playing! Even though she is really unsteady, she still stood up all by herself! She's been playful and silly for most of the day which is amazing! We had a great day!

March 10th, 2015

Mia's infection looks a little worse today and the doctor attributes it to her white blood cells going back up and fighting the infection. She still has about 7 more days on IV antibiotics around the clock. She also needed a transfusion today so she is extra tired! Besides that she seems to be tolerating her tube feedings at a very low rate. We tried to increase it this morning and she started vomiting, so we are going to continue to take it slow. Besides that there really isn't much to report. She hasn't been able to sit up since the other day but we keep trying! One day at a time! The oncologist went to talk to the pathologist to see if he had an idea of when we would get a definite test result but we haven't heard back yet! Have a great night and thank you for the continued prayers!!!

March 10th, 2015

So Mia is doing better! Her skin infection is less swollen than yesterday and her white blood count is going up which will help with the healing process. She will begin physical therapy here this week. The NG-tube is in and we will begin formula tonight. She has definitely lost some weight. Praying that she tolerates it and doesn't pull the tube out again. We will hopefully have results to share by Wednesday or Thursday! Good night! xoxo

March 9th, 2015

So the biopsy is complete! The one good thing is that her chest x Ray showed that the mass was cleared! This was great because she was able to just be sedated instead of being in the OR with anesthesia. So now we just wait and pray! We will hopefully know the microscopic results tonight or tomorrow and the final results in 2-3 days! Thank you for your continued support and prayers. The amount of people praying for our little girl is just unbelievable and amazing!

March 8th, 2015

Great news! Her fever broke last night!!! So now we just have to wait for the cells to heal her area so she can sit up again without pain. They finally got her pain under control which is amazing!

I know everyone has been keeping her in your prayers; but I am asking for extra prayers today! They've decided to do her biopsy tomorrow. Although, we won't know the resulta for a few days I'm asking for extra prayers that my little girl will be in remission so we can avoid the more intenser round of chemo! Again, I don't know how I will ever repay you but you will always hold a special place in my heart and always be in my thoughts and prayers!

March 7th, 2015

So unfotunately we had another rough night last night. Mia is still spiking fevers and is severely uncomfortable. She had an ultrasound this morning and there were still no areas to drain. However, it seems to be spreading up her groin area a little and now that she is rebuilding cells they expect the site to get worse again before it gets better! The oncologist stressed that she has a pretty bad infection and it will still take some time before she's feeling and looking better. She's still won't let me hold her and just wants to lay and not be touched. They upped her pain meds last night and will be increasing them again today. She still won't eat anything but they are still giving her nutrition through her port which is a blessing! Will update you with any others findings. xoxo

March 6th, 2015

Mia had another tough night being uncomfortable! The infectious disease doctors feel that her skin infection remains stable, but because she is still spiking temps they reintrodiced one of the previous antibiotics she was on. The good news is that her body is building up cells again and over the next few days that should help her start to fight this infection. The biopsy and next round are all on hold until this infection is resolved so most likely we will be here for awhile. Hope you are enjoying your snow day!

March 5th, 2015

Mia had a rough night pain wise. They've now upped her pain pump meds again and we are hoping to see some improvements with her being comfortable. Her skin infection looks slightly better this morning so we are hoping that the pain starts to subside as well. Unfortunately, she pulled out the feeding tube in the middle of the night and the new one they put in this morning. They will be giving her nutrition through her port at some point this afternoon. She is still spiking fevers as well. She is scheduled for antibiotics every 6 hours so we are hoping as we reach the 48 hour mark that we see some more improvemnets. Thank you again for your continued prayers! I hope everyone is staying warm and safe with the storm!

March 4th, 2015

Her N G-tube is in and she's tolerating it well. They will start formula tonight And hope she continues to tolerate the tube. The doctor upped her pain pump meds a little because she's been getting uncomfortable again. She's still running fevers on and off so they are treating them as well. She's on the right antibiotic now so hopefully she will improve soon!

March 4th, 2015

So the pain pump worked amazing for Mia last night. She gets pain meds every hour and then I can also give her more as needed. She's definitely more comfortable now that her pain is under control. They have the bacteria type this morning and are working on the antibiotics to treat her. She also had an ultrasound last night and everything looked good despite the area getting worse. We will attempt to put the feeding tube in this morning and if she doesn't tolerate it they will order nutrition to put directly through her line and then try again tomorrow. I haven't heard anything about replacing her port yet, the nurse said that it wasn't even discussed during rounds so I'm hoping that's a good sign that it can stay in place!

March 3rd, 2015

So Mia is pretty bad today. Her skin infection is worse and she is in a tremendous amount of pain. The morphine is causing severe itching and even though they are giving her Benedryl and another pain med along with it; there is still no relief. She will be getting a pain pump tonight; along with a new pain medication so hopefully we can get the pain under control. We are hoping to find out the specific type of bacteria by tomorrow so that they can adjust her antibiotics. Praying it's not the type that requires her to get a new port placed. She will also get the N G-tube within the next 24 hours. They will repeat an ultrasound of her private area if it continues to get worse or there is no Improvement by tomorrow.

March 2nd, 2015

Talked to the infectious disease doctor and the oncologist. She has both a bacterial infection in her blood and skin infection. We are not sure which one came first but they are treating them both. They've upped her morphine in hopes to get her comfortable. Once we find out the specific type of bacteria it is, there is a chance they will need to put a new port in. She will also be getting her n g-tube tomorrow and finally get some nutrition! Praying that she improves soon!

March 2nd, 2015

So we came to CHOP er last night because we found that Mia's diaper rash was actually an infection on her private area. She had an ultrasound late last night and thankfully, there is no fluid that needs to be drained. She is on 3 different iv antibiotics and morphine for pain. She is in a lot of pain and unfortunately can't even sit up nor wants to be held because she is so uncomfortable.

Looks like we will be here for the week and the nurse mentioned that they will most likely place an n g-tube by the end of the week because she has dropped some weight and will not eat anything. Her counts will definitely not be high enough for the biopsy they had planned for Wednesday, but will be monitoring her closely.

I can't even describe in words how grateful we feel to have so much support and love from everyone! I don't know how we became so lucky! My heart is full! Thank you!

March 1st, 2015

So of course we couldn't have a quiet weekend! In the middle of Ryan's party, Mia spiked higher fevers than she had in the hospital. After rushing home and speaking with her oncologist he decided to start Tylenol again and just monitor her. At the 4 hour mark she spiked again and now has been vomiting. We will continue to watch her through the night and see what happens. They feel that this is related to whatever virus she started with on Wednesday. Please pray her fever breaks soon!!!