Temp Breaking (Transplant Day +50)

Mia had another rough night! She was 103.4 at 10 PM last night. Luckily, all of her bacterial and viral cultures came back negative for any major illnesses again! She hasn't needed Tylenol since last night. Her temperatures today have been ranging between 99.8-100.5! Looks like this virus is on it's way out of her system. Hopefully, she will continue to improve and be fever free tomorrow! She has no appetite and is still pretty tired! We have been enjoying a relaxing day with some movies and playing play doh! She also enjoyed art therapy today which was a nice surprise. Your prayers are working! Thank you again!!!

Team Mia is beyond amazing!

1/2 way to Day +100!

Transplant Day +50

Probably Viral (Transplant Day +49)

Mia had a rough night and had fevers throughout the night. She was 102.8 this morning which caused her to vomit up her NG tube. She tolerated replacing it and holding down the Tylenol. There was no growth from her 24 hour culture. Being she is continuing to spike, they took another blood culture this afternoon so we will wait for the 24 hour results again. The consensus is that this is viral and just has to run its course. She was thrilled that her favorite doctor was on today and kept talking about how silly he was! She will be discharged once she's 24 hours fever free. Praying this fever breaks soon! Thank you again for your continued prayers and thoughts!!!

Team Mia rocks!

Transplant Day +49

Fever Is Back... And Back to the Hospital (Transplant Day +48)

Mia started running 100 degree temperatures yesterday. This morning she woke up warm and was 100 again but then within 3 hours of being up spiked 101.5 at home and then was 101.8 when we arrived at the clinic.

She's already been examined and has received IV antibiotics. They drew blood cultures and we will wait again for the 24, 48, and 72 hour results. The doctor feels that this is still related to the rhinovirus and somnolence syndrome that she was diagnosed with last week. She will be discharged once we see no growth at the 24 hour mark and she remains fever free for 24 hours. We are still waiting for a room on the transplant floor. Thank you for your continued prayers and thoughts!!!

Team Mia rocks!

Transplant Day +48

Biopsy Next Week (Transplant Day +47)

Mia had a great appointment today! All of her lab work looked great! Her GVHD rash is completely gone so now we will start weaning her off of steroids. She still has a runny nose but that's it! Her appetite is slowly returning too!

Next week, she is scheduled for a bone marrow biopsy on Wednesday. It will take several days to get the results back! Please continue to pray for good results and we will keep you updated!

Thank you for your continued prayers and thoughts!!!

Team Mia rocks!

Transplant Day +47

Back to the Apartment (Transplant Day +44)

Mia is getting discharged this afternoon! She's been feeling so much better. Energy levels are returning, along with appetite and walking! Thank you for all of your amazing prayers! They definitely are working and we appreciate them more than you know!

Go Team Mia!

Transplant day +45

Fighting of Cold (Transplant Day +43)

So the good news is that nothing has grown from her 24 hour cultures!!! Mia has been sleeping a lot! The only thing that came back positive is the rhinovirus which basically is a common cold.

The doctors are saying she has somnolence syndrome which occurs weeks after radiation. A rarer complication which is extreme tiredness, where you sleep nearly all the time. It starts about 6 weeks after treatment ends and lasts about 2 weeks. Symptoms of somnolence syndrome include:

drowsiness

lethargy (lack of energy)

mild headache

low-grade fever

nausea and vomiting

loss of appetite

irritability

confusion

At this point, we are a week into this and hopefully almost done. Symptoms will improve on their own. They will monitor her for the next day or two and as long as she continues to improve they will discharge her.

She even walked with holding my hand around the room this morning. She also had PT and did great!

Your prayers and support are beyond incredible! Thank you!!!

Transplant day +43

Hopefully Short Hospital Stay (Transplant Day +42)

Mia has been spiking low grade temperatures for the past 24 hours. She finally met the fever requirement for admission this morning. I was going to bring her in regardless because she's not herself! She won't play, has very little energy, no appetite, and as of this morning won't bare weight on her legs.

We are currently in the day hospital and will be admitted to the floor shortly. They took blood cultures and a viral panel. We are thinking it might be a side effect from the total body radiation she received in August. They will rule everything else out first before they make that diagnosis, so we will wait for her culture results at the 24, 48, & 72 hour marks.

We will continue to keep you updated as we are most likely here for the next 3 days if not more!

Your prayers and support are beyond incredible! Thank you!!!

Transplant day +42

Off to Hospital (Transplant Day +42)

Well Mia and Teresa are off to get admitted back into CHOP. Her temp has hovered around the lower threshold but she is just not herself. She doesn't want to walk, she has a runny nose, tired, etc...

They suggested to bring her in and she will likely be there for at least overnight. This way they can watch her temp, culture her blood if needed and give her some pain meds if she is uncomfortable.

This could be a delayed side effect from the radiation which doesn't really have treatment as it just needs to pass. Or she is dealing with her 1st sickness with her new immune system.

Thank you all again for your continued prayers and support. Hopefully Mia is back in the apartment sooner than later

Transplant Day +42

Slight Fever (Transplant Day +41)

Mia has been running a temperature of 99.9-100.2 most of the day! She hasn't met the fever requirement for admission yet. Please keep her in your prayers that this passes and is nothing! Thank you!!!

Thank you for all the support yesterday as we hit another step closer to recovery!

Transplant Day +41

100% Donor Cells (Transplant Day +40)

The amazing news first... Mia's 30 day engraftment study came back tonight and she is 100% Donor cells!!! This is exactly what we want to see! They will continue to check this monthly.

Her UTI results came back negative. She's still uncomfortable but urinating a little more today than yesterday. They are calling it unexplained urinary retention. They will continue to monitor it closely to see if we need any further tests or if it continues. As of now, we are holding off on the potty training being we don't have a definitive answer.

It was an extremely long night last night and long day today at the clinic! She also is having some major difficulties with walking so we are hoping that resolves itself soon too! We are hoping for a quiet and uneventful rest of the week.

God is good! Your prayers are beyond incredible! Thank you!!!

I have no idea why Facebook is turning my pics upside down! Lol!

Transplant day +40

ER Visit for Urine Retention (Transplant Day +39)

Mia ended up in the ER tonight because she couldn't urinate since 10:30 am this morning and was extremely bloated. She kept asking to go but would just sit on the potty and cry with stomach pain. They used a catheter to empty her bladder which was extremely full. She had an ultrasound and x-ray. All of her labs and tests were negative for any problems or infections. We will be back in the clinic tomorrow early in the am so I'm praying it's a fluke and things are normal tomorrow!

Hoping to be released soon! Thank you for your prayers!!!

Transplant day +39

Enjoying Apartment Time (Transplant Day +33)

Mia had a great appointment today! All of her lab work looked great! Her GVHD rash came back on Sunday so we are increasing her steroids and starting a new drug to help get it under control. They also drew the 30 day blood work to test the amount of donor cells that are present as opposed to Mia's. We will have those results back within 1-2 weeks.

Other than that, she has been eating great and playing hard! Sleeping has still been an issue on and off as a result of the steroids but it's all good! She was over the moon when Nana visited and so excited to show her our new apartment!

Thank you for your continued prayers and thoughts!!!

Transplant Day +33

Out of the Hospital (Transplant Day +26)

After being in the hospital for 36 days, Mia finally was discharged late this afternoon! She was hoping to go home to see Ryan and Logan! She loves her new room and is happy to see her own bed! It's going to take a few days to adjust to the new living situation. She ate her first meal in the new apartment, eggs with Parmesan cheese which is an old favorite of hers!

Mia will go to clinic next Tuesday for a checkup and labs. I will be updating once a week now that we are outpatient and there won't be much to report!

Ryan and Logan will start school tomorrow and we will FaceTime in the morning so I can be there with them!

We are excited to start this next step in recovery. Keep the prayers coming! Thank you! xoxo

Transplant Day +26

Hopefully Last Night in the Hospital (Transplant Day +25)

It's time this girl gets to go home. Mia's numbers are good and leveling off to more normal levels. She is off all the IV meds and the feed rate is increasing. The apartment is all ready for her so as it stands right now we are getting her out of here tomorrow.

Mia is very stir crazy right now to the point I even had to put her in time out for throwing toys around her room. She has had several bananas, fruit snacks, and started drinking more on her own. It is obvious that she is starting to feel much better. So basically there is no reason to keep her here at this point. As Mia quoted from Shrek today "I'm a donkey on the edge"

There are no pictures of her today because honestly I forgot. I included an imagine to remind everyone that September is Childhood Cancer Awareness Month so lets go gold.

#GoTeamMia #TeamMia

Transplant Day +25

Apartment Ready for Mia (Transplant Day +24)

Today Mia had a good day. She tolerated the increase in the feeds, played, slept well, walked and even ate a banana. Teresa came up to spend the middle of the day with her. I was down at the apartment moving/building furniture. Teresa will be coming back up tomorrow night so Mia will have both of us for what will hopefully be her last day before release.

Special thanks goes out to Teresa's mom Phyllis for really cleaning the apartment and making it feel like home. Also special thanks goes to uncle Len who drove up all the way from Maryland to deliver a couch and mattress. Finally, thanks to our neighbors and fellow warrior family for helping me unload the truck and van #GoTeamGabby Gretchen.

Once again thank you all for your prayers and support as we approach the next phase of this long healing process. We hope everyone has a Happy Labor Day.

#GoTeamMia Go!

Transplant Day +24

Beginning Apartment Cleaning & Setup (Transplant Day +23)

Apparently I increased the speeds of her feed too much last night causing her to vomit (out came the tube). That set the tone for the night which saw her not sleep well and woke up early. She is also tired because her little body is just cranking out cells right now (her ANC is almost 10,000). So an early start and replacing the tube equals a rough morning. The rest of the day wasn't too bad. We played, we walked (walking is a lot easier now that she can go without the pole for a few hours), etc...

Teresa, Ryan and her mom spent most of the day cleaning and prepping the apartment in south Philly. Tomorrow several of us will be moving various items of furniture into the apartment. We are preparing it for Mia's pending arrival which hopefully is still Tuesday. Much love to Teresa's mom who I am sure is cleaning that apartment better than any cleaning service possibly could. It will be nice to have Mia unhooked and allowed to roam freely and play for most of the week. She will be expected back at clinic twice a week for checkups and meds.

So keep the prayers, good vibes, pixie dust, positive mojo, etc... coming. Each day we are taking steps further away from the dark days.

Transplant Day +23

Beginning Prep for Leaving (Transplant Day +22)

Mia's white blood cells and ANC (8,000+) nearly doubled from yesterday, they are starting to ween her off the steroid (for the rash) and the TPN (tube feeds are increasing) and switch over to all oral meds so she can leave. After seeing her today the doctors are very happy with her numbers and progress. She is set to leave for the apartment on Tuesday if her progress continues.

Tonight Teresa and the boys were able to go to a Lakewood BlueClaw's game in support of Team Mia. Ryan and Logan threw out the first pitch. There was an attempt to watch it live through FaceTime until Mia heard mommy on the other end. The boys finally get some much needed mommy time and now Mia misses her.

We continue to ask for prayers, good vibes, etc... because it appears to be working. Although this journey is far from over, each day we take another step in the right direction.

Go Team Mia!!!

Transplant Day +22

Central Line Removed (Transplant Day +21)

Mia had a rough night last night! They are weaning her off of IV steroids so hopefully that helps tonight with sleeping. We will also see how much of her rash returns with being weaned. She was a last minute add-on today to the OR schedule. They removed her extra central line late this morning. She did great and there were no complications!

We had discharge teaching today and we are excited to start this next chapter in our journey sometime next week! Mia will basically be on lockdown as far as going anyway and especially with entering into cold and flu season soon! Our outpatient NP basically explained that even though her white blood cell count looks good, that they are basically immature cells like a newborn baby and do not know how to fight off infection.

Please continue to send prayers as they are working! We are praying for you as well!

Transplant day +21