Engraftment Still 100% (Transplant Day +130)

Amazing news! Our warrior princess' blood engraftment remains 100% donor cells!!! We are so grateful for so many prayers and all the love we receive daily for our family! Best Christmas gift we could ask for! We are so blessed to have each and everyone of you in our lives! Thank you!

Transplant day +130

4 Month Checkup (Transplant Day +124)

Mia had a great visit today! They took about 14 tubes of blood. They are testing the donor percentage in her blood and how her immune system is functioning. We should get those results back in a week. Other than that her weight is good and they were happy she looked so well. Sleeping and eating are still an issue but the appetite stimulant is helping.

Thank you for all your prayers!

Transplant day +124

Follow the River to Get Home (Transplant Day +110)

There was a very good reason we wanted to take pictures in Philadelphia this year. The first reason was that the city became our home away from home and also Mia talked about the river often even though she had no idea where it was when we were in CHOP. Most people don't know this story, but after Mia's transplant she loved watching the movie, The Good Dinosaur. For those of you who have never seen the movie, Arlo gets lost from his family and remembers that his father always told him to follow the river to get home. Well, Mia started telling me, as well as the nurses that she was going to follow the river to get home! She wanted to get home so badly and this little girl fought and did! So this picture especially will always remind me of her amazing fight and all that she had to overcome to follow that river and get home! Thank you, Tammy Scirrotto for capturing this moment for me! Always grateful!

Transplant day +110

Eating Great and Progressing (Transplant Day +110)

Mia had a good appointment today. We are beginning to wean her appetite stimulant medication because she is eating great and has gained a little over 2 pounds in 2 weeks. We also think being on this medication is the cause of her not sleeping well. Hopefully her eating continues and sleep improves once she is off the medication.

We also started weaning her anti-rejection drug today. This medication is considered an immunosuppressant so it could be the cause of her donor cells being 99% instead of 100% in her marrow.

It was also discussed today that she will get bone marrow biopsies at 6 months, most likely 9 months, and 1 year. This is a new protocol so things might change a little here and there. The hope is that her marrow will be 100% donor soon or if by chance the leukemia returns they can catch it early hence the repeated biopsies. So far, everything indicates that things are heading in the right direction and there are no concerns at this time. We will be back in 2 weeks for another appointment.

Mia is enjoying being home and still adjusting to her new life. We are just beyond blessed to have everyone under one roof.

Team Mia continues to work on collecting gifts for the families at CHOP. If you would like to donate anything, please let us know as we will be delivering everything sometime next week!

Thank you again for everything!

Transplant day +110

Great News (Transplant Day +98)

Amazing news today!!! All of Mia's donor cell percentages increased which is what we needed them to do! Mia is 99% donor in her bone marrow and 100% donor in her blood! They will repeat another bone marrow biopsy in 3 months to make sure everything is still good! We feel so incredibly blessed by your continued support and prayers! Thank you!!!

Mia's Coming Home (Transplant Day +96)

Mia had a great appointment today! We have the all clear to head home! We are planning to move her home on Friday this way the house can be cleaned thoroughly before she gets there. Thanks to my amazing Mom for working so hard to get it ready for her! Although, she's saying she likes her apartment now and doesn't want to go home, lol! It has been 3 1/2 months since she's been home. We are so excited and feel blessed that we will be home in time for Thanksgiving!

All of her labs looked great too! Her final results of bone marrow biopsy confirmed that there is no leukemia present. We are still waiting on her blood and bone marrow donor cell % and are hoping to get them back by the end of the week! We will keep you updated on that.

She got her flu shot today also. She has even started eating which is great, so her doctor was happy with her weight!

Thank you so much for your prayers. The power of prayer is beyond amazing!

Transplant Day +96

Microscopic Clear (Transplant Day +91)

Microscopic results show no evidence of leukemia!!! We will get the final results and donor % next week. Your prayers are working, thank you! God is good! Team Mia is amazing!

Transplant day +91

90 Day Biospy (Transplant Day +90)

Mia had her biopsy early this morning. Her exam was good, except her waking up prematurely from anesthesia. She also has a stye on her right eye which has been there for a week now so we are hoping that it clears up quickly. We will be waiting for the microscopic results which we will hopefully receive before the weekend. This will tell us whether there is any evidence of leukemia in her bone marrow. We won't get her engraftment results; (the donor cell % in her blood and bone marrow) until next week. Her weight was down a little and being she is still refusing to eat anything we will begin an appetite stimulant this week.

Thank you for your continued prayers and support! We truly appreciate everything!!!

Transplant Day +90

Getting Closer (Transplant Day +82)

Mia had a great appointment today. Her labs and skin both looked great.

Halloween was such an amazing day. Mia’s oncologist gave us permission to bring her home for a day trip under the assumption that if she spiked a fever she would have to go to the local hospital and wait to be transported back to CHOP. Luckily, she did not have any problems. She surprised both of the boys at their parade! We were even allowed to go trick or treating early, as long as we avoided crowds, so she wore her mask and did a few houses with the boys.

Next Wednesday, Mia will have another bone marrow biopsy. The engraftment of her donor cells from her last biopsy wasn't 100%, they were slightly under. They explained that this is what they are seeing with the drugs she has been on. Being she is now off of her oral steroids, we want to see that % improve or stay the same. So we are once again asking for many, many prayers that her biopsy is good! Again, we won’t have the results next Wednesday but will hopefully have some preliminary results back before the weekend.

If everything continues to go well, we are hoping she can move back home around Thanksgiving.

Thank you so much for your continued support. It truly gets us through each and every day!

Transplant Day +82

Holiday Toy Drive

Calling all Team Mia members!

We are partnering up again with the Ronald McDonald House of Philadelphia! It's that time of year again when we try and help those who are dealing with more than they should! The past 2 years our Holiday collection for children fighting cancer at CHOP has been amazing! Your generosity has been amazing! We will begin collecting gifts and gift cards soon! If you would like to help, please email (teresacastellan@yahoo.com) or message me here on Facebook and I'll give you all the information! Thank you!

Down to 2 Week Doc Appointments (Transplant Day +68)

Mia had a good visit today. She received an immunoglobulin G infusion. Hopefully her body will be able to produce this antibody by itself within the next couple of months. She's still on antibiotics which have been a huge issue for her stomach. She hasn't been eating or sleeping well. We added another anti-nausea and reflux medication which seems to be helping a little bit. Saturday morning will be the last dose! Her weight is down because of this so hopefully things will resolve next week! We also get a week off next week, so our next appointment is November 1st.

Your prayers are truly amazing! Go Team Mia!

Transplant day +68

MRD = Negative (Transplant Day +61)

Mike and I wanted to thank you for all of your generous donations and support. You have made life so much easier and helped us to be able to just focus on Mia's well-being and care. We are truly grateful and your kindness will be long remembered!

Mia's MRD(minimal residual disease) test came back today and there is no evidence of leukemia in her bone marrow! All of her other lab work looked great too! There will be another test(blood work) closer to day 100 which will give us a good idea on how she's responding to transplant!

She is finally coming off her steroids today which is also great news. If everything looks good next Tuesday, our office visit will be every 2 weeks as opposed to every week!

God is good! Team Mia is amazing! Thank you again for your extra prayers and support! xoxo

Team Mia is beyond amazing!

Transplant Day +61

Back To The Apartment... Again (Transplant Day +58)

Mia was discharged this afternoon! Her and daddy get to hang out for the weekend! Hopefully the 14 day dose of oral antibiotics they sent her home on does the trick!

We will be back in the clinic on Tuesday so hopefully we will have more results back on her bone marrow by then! Have a great weekend!

Thank you again for your extra prayers and support! xoxo

Team Mia is beyond amazing!

Transplant Day +58

May Finally Have Gotten to Issue (Transplant Day +57)

So the plan has changed a couple of times today but here's the latest. She had a scope last night late with ENT, complete torture for her but they didn't see anything concerning. They are going to order some additional blood work to test for possible fungi and mold. Depending on the results of the blood work they might order a biopsy of her sinus area that's inflamed. For now, they are going to switch antibiotics and treat her for sinusitis for 14 days. We are hoping this is the cause of the fevers! She will get an IV dose tonight and tomorrow of the new antibiotic and then will hopefully be released tomorrow afternoon on oral meds.

We also got the microscopic results of her bone marrow biopsy and so far there is no evidence of leukemia. We should have official and final results on Monday or a Tuesday so please keep praying!

Thank you again for your extra prayers and support! xoxo

Team Mia is beyond amazing!

Transplant Day +57

Back in the Hospital (Transplant Day +56)

Mia is still having fevers. Her 24 blood culture was negative for any bacterial growth. Being this has been the pattern for 3 weeks, the doctors thought that it might all be related. It seems like her fevers clear up with IV antibiotics and then return again once she is off. She had a CT scan with contrast late this afternoon. She was amazing, because we skipped the sedation and she fully cooperated! Right now all we know is that they see something on the right side of her sinuses but aren't sure whether it's viral or bacterial. They are waiting on a consult from both infectious disease and ear, nose, and throat. We might not have any answers until tomorrow. They also might switch up her antibiotics once they have a consult or order further tests.

Thank you again for your extra prayers and support! xoxo

Team Mia is beyond amazing!

Transplant Day +56

60 Day Bone Marrow Biopsy (Transplant Day +55)

Thank you for the many messages and texts we received for Mia! She did great and is home napping! She did have a temperature of 100.4 at the clinic this morning, so if she has 2 more of 100.4 or higher in the next 24 hours then she will have to be admitted again! Praying it stays down this time. Her blood work and check up was great though! We should have the microscopic results by Friday and the final results by Monday. Thank you again for your extra prayers and support! xoxo

Team Mia is beyond amazing!

Transplant Day +55

Tomorrow 60 Day Biopsy (Transplant Day +54)

So we go into tomorrow morning with a lot of anxiety! Every appointment and every lab makes you hold your breathe until you hear that things are okay. Tomorrow is Mia's bone marrow biopsy. She is scheduled to be there at 7:30 am. Even though we won't know any results tomorrow, your prayers are beyond appreciated and needed! Please send extra prayers and good vibes tomorrow! Thank you again!!!

Team Mia is beyond amazing!

Transplant Day +54

Feeling So Much Better (Transplant Day +51)

Mia is feeling so much better! Her magnesium levels are a little low which is the result of one her new meds, but she is on a supplement which will start helping! She was discharged this afternoon and is happy to be in her apartment as she calls it! She even started eating a little today which is great! Her bone marrow biopsy is still scheduled for Wednesday! Keep the prayers coming! God is good!

Thank you Team Mia!

Transplant day +51

Out of the Hospital (Transplant Day +51)

24 Hours no fever and we are free to go... Mia didn't even want to say goodbye to some of her favorite nurses. They got a slight wave.

Transplant Day +51

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

One Step Closer (Transplant Day +20)

Figured I would update early today!

Mia had a great night last night! Of course, it helps having some amazing nurses here! She's been having fun playing with some of her favorites in the hallways! They sure have made our stay so positive!

Mia's ANC is 4680 today! The doctors were very happy with her numbers. Her rash is improving, but she will continue on the IV steroids for another day or so. We are waiting on scheduling to take out her central line. This should happen sometime this week or early next week. We are hoping to be discharged on Tuesday.

At day 30, they will draw labs to check on the percentage of donor cells that are present as opposed to her own. This blood work takes about 1- 1 1/2 weeks to come back. If everything looks good, then she won't need a bone marrow biopsy until day 60.

As a good friend put it this morning, all of the prayers out there for Mia and our family are amazing! We are so humbled and so fortunate!!! Please continue as they are working!

Transplant day +20

NG Tube Back In (Transplant Day +19)

Mia had a better night last night! Her ANC is doing great! Her rash has even improved since yesterday! She's off the pain pump and they are weaning her off the pain medication too. We started some NG feeds today; very slow and only for a couple of hours at a time. She's making big improvements and we are hoping to be in the apartment by next week sometime! Have a great night!

The power of prayer is amazing! Thank you! Keep the prayers coming, Go Team Mia!

Transplant Day +19

No Sleep For Mia (Transplant Day +18)

Mia had a rough night last night and was up the majority of the night. Unfortunately, this is a side effect of the steroid she is on for her GVHD rash. There wasn't any improvement in her rash, and it may even be slightly worse. Hoping to see some improvements later in the week. Her NG tube is in, but we are holding off on feeds because she is still a little nauseous from it. She was pretty tired and cranky today! We are trying some melatonin so hopefully she will sleep tonight!

The power of prayer is amazing! Thank you! Keep the prayers coming, Go Team Mia!

Transplant Day +18

Cranking Out The Cells (Transplant Day +17)

Mia's ANC is 1350!!! Her itching is slightly better and rash is a little worse! They will continue to watch it and might up her steroid dose or add an additional medication in the next day or two.

Today was bittersweet! I was able to surprise my boys for a special lunch thanks to Aunt Bridget! It was definitely hard to say goodbye! Mia was able to wave and blow kisses from the window!

The power of prayer is amazing! Thank you! Keep the prayers coming, Go Team Mia!

Transplant Day +17

GVHD Rash (Transplant Day +16)

Mia's ANC is 450 today!!! She was up in the middle of the night but not for too long. She was excited to see Daddy when she woke up! They started an IV steroid this afternoon, so hopefully the itching will slow down at the 24 hour mark. It was a day of tea parties and hide and seek!

The power of prayer is amazing! Thank you! Keep the prayers coming, Go Team Mia!

Transplant Day +16

ANC Climbing (Transplant Day +15)

Mia's ANC is 340 today!!! We had a rough night. She was up from 12:00am-2:30am itching her feet and then up at 7:00am. Her GVHD rash is still considered mild, but she's extremely itchy despite lots of medications. Like her face, it will get worse before it gets better. We tried to get the NG tube in today but she vomited it back up so we will try again soon!

We watched a lot of Doc McStuffins shows and the Shrek movie! Baby went for a quick walk in the stroller. Mia decided the ride on cars in the hallway belong to each big balloon character. She says Minnie drives the pink car, Mickey the red, and Buzz Lightyear the blue. She says they drive around at night! She truly has such a creative imagination!

Have a great weekend!

The power of prayer is amazing! Thank you! Keep the prayers coming, Go Team Mia!

Transplant Day +15

GVHD (Transplant Day +14)

Mia's ANC dropped today, but this is normal and her white blood count and monocytes went up! It is normal for her ANC and platelets to fluctuate. Her red blood cells and platelets are holding their own, so she hasn't needed any transfusions. Her face rash has improved so much and she tested negative for any bacterial infections. Tomorrow we will try to get her NG tube back in. She was also a little nauseous this evening also.

The rash covering her body is GVHD (Graft verses host disease). GVHD develops when the donor's immune cells mistakenly attack the patient's normal cells. GVHD can be normal after transplant and is fine in a mild form. So far, Mia's is mild, although her poor feet and ears are severely itchy. A little GVHD is a good thing because it's another sign of engraftment. Praying she's less itchy tonight and tomorrow!

We had music therapy today which Mia was not fond of being she was so itchy. She did have some fun walks visiting the various character balloons and enjoyed OT. We also had fun acting out one of her favorite YouTube videos, Sleeping Bunnies!

The power of prayer is amazing! Keep the prayers coming, Go Team Mia!

Transplant Day +14

Not Viral (Transplant Day +13)

Great news, Mia's ANC is continuing to rise slowly!!! She was negative for any fungal and viral infections which is great! So glad they were wrong about having Herpes, your prayers worked! Thank you!!! We are still waiting on the bacteria test results, but they don't think it will show anything. Mia also has a rash covering most of her body which is another good sign that she is engrafting. Remember Engraftment is when the new blood-forming cells start to grow and make healthy blood stem cells that show up in your blood and it is an important milestone in transplant recovery.

She was thrilled to be able to walk in the hallway to visit her Minnie and someone else's Mickey! She also had a great time painting with the art therapist!

The power of prayer is amazing! Keep the prayers coming, Go Team Mia!

Transplant Day +13

Rash Issue Worse (Transplant Day +12)

Great news, Mia's ANC is 130!!! She had a great morning playing with me! She's feeling so much better!

The other news... Her face is still the same and has spread to her nose now. We had a dermatologist consult this afternoon. After talking, the doctors feel that it's most likely the herpes virus. The did several swabs on her cheek and behind her ear. They are testing for viral, bacterial, and fungal infections. Their main concern was the fact that her eyelids were covered, therefore leaning towards something viral. We will also get a consult with an ophthalmologist tomorrow. As for now, we have a new topical cream for her face and they are increasing her dose of the anti-viral med she is already on. We should have results back within 2 days. Unfortunately, she can't go for walks anymore until we get the results! We will have to figure out new games for walking in her room tomorrow.

Please pray they are wrong! Other changes might need to be made as far as meds, a possible room change if she's positive, and her walks will be no more! Thank you!!!

The power of prayer is amazing! Keep the prayers coming, Go Team Mia!

Transplant Day +12

Feeling Better (Transplant Day +11)

We woke up to a white blood count of 0.7 and an ANC of 40 today!!! Woohoo! Her skin issues are a little better except for her face. We are trying a steroid cream on it today and will hopefully see some improvements soon! We haven't had to use the PCA, pain pump for extra pain medicine either! Hopefully, we can decrease the continuous flow amount she's receiving within the next few days!

The new attending on this week was fabulous! Mia loved him and he was happy with her progress, although, we are nowhere near going home yet. They will continue to watch her for side effects from the transplant and monitor her labs closely!

She had PT this morning and did great. She also enjoyed using her imagination, boy does she have a pretty good one while playing with play dough! We took baby on some exciting walks too!

Your prayers are working as she rocks this transplant!!! Thank you!!!

The power of prayer is amazing! Keep the prayers coming, Go Team Mia!

Transplant Day +11