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

We Have An ANC (Transplant Day +10)

Mia's white blood cells were 0.4 and we had an ANC of 10 this morning!!! Of course, her ANC might drop back down to 0 and then come back up again. Fluctuating is normal. She spiked a fever again during the night, but again this is normal. The doctor was pleased with her labs and how well she looked today compared to yesterday! Her skin is a little worse today, but it will improve eventually! They increased her IV dose of an anti-itch medicine and it's making a huge difference!

She was so excited Daddy came to visit today! We played hide and seek in the hallway which she loved! She even kept down her Zyrtec this morning which she couldn't yesterday and had some orange Gatorade!!!

The boys enjoyed an Orioles baseball game last night and Kings Dominion with their cousins! They are having a great summer!

Her magic hands were in full swing tonight too! So thankful for an amazing day!

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

Transplant Day +10

Skin Issues (Transplant Day +9)

Mia has been very irritable all day! She has been spiking fevers since 5am this morning! Again, this is normal after transplant. Her body is working hard and showing signs of Engraftment. After a bone marrow transplant, the new cells will start to grow and make new blood cells. This is called engraftment. Mia had a white blood count of .2 today so that's exciting! She is having major skin issues too as a result. When her white blood cells start returning, all of the areas on her body that had tape on it start to try and heal. Unfortunately, her skin issues will get worse before they get better. It's been a day of movies and shows!

Thank goodness for dolly!

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

Transplant Day +9

Rough Day (Transplant Day +8)

Mia had a rough night last night. She was pretty restless and was crying in her sleep. They had decreased her pain meds a little yesterday, so we went back up today. She went for a few walks today. She's very itchy and irritable. We rested and watched her favorite shows! She did enjoy painting as usual!

She got an immunoglobulin G infusion today. This usually happens monthly until her body can produce it itself. She had a few bloody noses today, so she will get platelets tomorrow. She also had more monocytes today so hopefully that ANC is coming within the next few days!

Have a great weekend!

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

Transplant Day +8

Mia Loves FaceTime (Transplant Day +7)

Mia slept all night again and no vomit this morning! She had a slow day but went for several walks, painted, and played play dough with OT. She also learned how to scan her bracelet for meds! She also enjoying face timing with the boys, nana and pop pop, grandma and grandpa, and Aunt Val and Uncle Tom! She's becoming pretty tech savy! We also had special visitors as usual! Mia is a pretty popular girl around here!

She's pretty itchy so we are trying a new iv med around the clock to see if it improves. Mia always has skin issues after chemo. The docs are saying that the next week is usually tough for pain and that she might get worse before getting better. Praying and hoping she proves them wrong as she's been doing great so far. She also had some monocytes today. Monocytes usually show up before there is an ANC. Sometimes the number fluctuates but it's a good sign that her body is in the beginning stages of recovery!

Tonight, Mia gave baby a bath, cleaned her with wipes, brushed her teeth, and put her to bed! She skipped her nap today, so I'm hoping this isn't the new trend. Mia also drank an ounce of apple juice which is huge, because she hasn't taken anything by mouth in days!

Ryan is having fun at camp and he won a basketball today! Logan is excited to be done with summer school!

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

Transplant Day +7

Little Steps (Transplant Day +6)

Mia slept all night thank goodness! She woke up feeling nauseous but didn't vomit! She had a busy morning; she went for 2 walks, had physical therapy, and did some window coloring.

After her nap, she got a blood transfusion. She also had art therapy this afternoon and loved painting as usual. The child life specialist also came in and painted flowers with Mia!

She's also been taking care of baby and Lambie as she says they've been throwing up too! Lol! She was also busy making cookies for her nurse! She has quite an imagination!

She has a lot of skin breakdown, so we are praying some white blood cells show up soon to help heal those areas! She also has a rash on her chest that we are treating with a new steroid cream, so I'm hoping that gives her some relief!

Despite another bloody nose, her platelets were good today so we will see what tomorrow brings. I talked to the doctors about raising her threshold for transfusions being she's getting so many bloody noses which they agreed with! Besides some cranky moments, we are thankful for another good day!

Keep the prayers coming, Go Team Mia!

Transplant Day +6

Playing > Napping (Transplant Day +5)

Mia had a better night although was a little restless. She woke up again vomiting and nauseous. Once she started feeling better she had an amazing morning! She had OT, played Legos, memory, and took Lambie and Dolly for a walk! She was able to enjoy Logan's summer school show via FaceTime thanks to Nana and Pop pop!

She had a pretty good nose bleed this afternoon so she's getting platelets now. She also had art therapy and thoroughly enjoyed painting and basically had paint from her head to her toes! She skipped her nap which wasn't good but she runs the show. Instead, she was playing with 2 of our amazing nurses and running through the hallway giggling and saying, "You can't catch me!" She past out at 5:45pm tonight so I'm praying she sleeps through the night!

Being it's day 5, they started drawing labs to see if she has an ANC (Absolute Neutrophil Count). Although, she won't have one for at least a couple more days, it's exciting to know it's coming which means one step closer to getting discharged.

Keep the prayers coming, Go Team Mia!

Transplant Day +5

Tough Cookie (Transplant Day +4)

Last night, Mia had a bloody nose in the middle of the night due to low platelets. She will most likely need platelets every other day for awhile until her body recovers. She also had several low grade fevers since last night, so they sent another blood culture. Fevers and low platelets are both normal following transplant. She woke up nauseous and vomiting again but quickly recovered and began her day!

We had PT this morning and tried out a new strap to help her right leg which is weak. She walked great and worked hard! Of course, she wouldn't wear it for me later in the day but I'll keep trying!

Even though she woke up cranky this afternoon, she went for a walk with dolly! She is pretty amazing! She keeps moving to and going despite feeling miserable! She's one strong kid and is definitely an inspiration!

Both boys are having a great week so far! Ryan is enjoying basketball camp and Logan came home singing and practicing for his big show tomorrow! I can't wait to see pictures!

Keep the prayers coming, Team Mia!

Transplant Day +4

Mia Hanging Tough (Transplant Day +3)

Mia's mucositis is causing a lot of vomiting, which along with pain is what it does unfortunately. She's been relaxing, watching The Good Dinosaur, and sleeping! Her skin is still pretty irritated from the radiation and tape they used during treatments. She's been really itchy as a result.

Last night, I was lucky enough to have dinner with Ryan in the cafeteria here(his favorite place to eat btw), before him and Mike went to the zoo for a leukemia event! It was so special!

We had 2 very special visitors today! It's amazing how along this dark road, new friendships happen! Some of the people who we have met have become like family and we are so thankful for that!

She's feeling better tonight so we are hoping that continues through the night! We hope everyone is staying cool!

Transplant Day +3

Why Sleep? You Might Miss Something (Transplant Day +2)

So the good news is nothing grew from her blood cultures and no fevers today! She woke up vomiting and needing a blood transfusion this morning. I feel like there may have been some caffeine in that transfusion because she didn't nap all day! She was busy playing and running her dolly in the stroller back and forth through the hallway! She enjoyed talking to all of her nurse friends too! Tonight, she is getting platelets as they were a little low this morning, but then she had a little bloody nose tonight so they figured it was better not to wait until the morning. Her pain pump is managing her pain well! Hoping she sleeps all night! The power of prayer continues to amaze me! Thank you!

Transplant day +2

Pain Sets In (Transplant Day +1)

Last night was rough! Mia woke up vomiting at midnight and spiked a fever around 4:30 am this morning. She's been fluctuating between 101.6 and 100.6. They drew blood cultures so we will wait to see if there is any bacterial or fungal growth at the 24, 48, & 72 hour mark. She finally stopped vomiting this afternoon with an additional anti-nausea med.

She is in a lot of pain from the mucositis and her pain meds haven't been lasting as long as they should be. Therefore, she will start a PCA this afternoon. A PCA is a patient-controlled analgesia pump, which contains a syringe of pain medication which is connected directly to her line. The pump is set to deliver a small, constant flow of pain medication and then we can push the button for additional pain relief as needed.

Mia also started on IV nutrition being she has no appetite or desire to take anything by mouth. She will also get an anti-rejection medication that will run over most of the afternoon today.

Mike went home to work and be with the boys! Mia and I are "city girls," as she likes to call it! Please keep prayers coming for some pain relief! Thank you!

Transplant Day +1

Transplant Day

Today was Transplant Day! Thank you to our Donor!!! Mia got some new presents to help her celebrate the day. The Chaplin blessed and prayed over the cells as I held them before they were infused. We were so fortunate to have 4 devices going at the same time. Nana, Pop pop, Grandma, Grandpa, Ryan, Logan, and Aunt Bridget were all part of the blessing! It was truly amazing! They literally took 2 huge syringes and manually pushed the cells through her line! It was very uneventful!

Mia started not feeling well today. She is having some mucositis and had a hard time swallowing earlier. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, which is an adverse effect of chemotherapy and radiation. She had some pain medication and we may switch to a pain pump in a day or two as she will also feel pain from her bone marrow recovering.

It will take a week to 2 weeks for the donor cells to find where they are suppose to go and begin producing new cells.

The support we have received today is nothing short of a miracle! We feel incredibly blessed to have Team

Mia with us through this entire process! Please continue to pray that she has minimal side effects from the transplant! Thank you for all of your continued support and prayers! xoxo

Rest Day (Transplant Day -1)

Mia had another good day today! She had physical therapy this morning and enjoyed galloping through the hallway! She also thinks she has magical powers and can open the automatic doors! She stands there and says, "Abracadabra!" It's the cutest thing ever!

Her skin is pretty broken out and itchy from the tape they used during her radiation treatments! She started a cortisone cream tonight, but with no white blood cells it is going to take awhile to heal.

Tomorrow is the big day! As I sit here tonight, I can't help but think of the selfless stranger who is saving Mia's life! The gift of life is amazing in itself, but for someone to donate their marrow to save another's is just even more miraculous! We are so fortunate and grateful to our donor and hope to be able to thank them in person one day!

The Chaplin offered to come in and bless the cells tomorrow. We are hoping that the boys and grandparents can FaceTime with us to be a part of this big event for our family! We don't have a time yet but it should be later in the day around dinner time. Thank you for keeping Mia in your prayers and close to your hearts! xoxo

Tomorrow is Transplant Day! Go Team Mia!!

Chemo Day 4 (Transplant Day -2)

Mia had another good day today! She is officially done with chemo! She was nauseous today and tired, but had a great morning playing! She also had occupational therapy and went on a scavenger hunt to find all of her favorite toys hidden throughout the room.

The doctors are watching a small red area in her belly button where the fertility incision is. They are being proactive and using an antibiotic ointment.

Tomorrow is a rest day. She should be starting IV nutrition tomorrow also.

Mike and I are married 13 years today! Thank you to everyone who reached out to us with anniversary wishes! We appreciate each one! We couldn't celebrate without the boys, so we will wait for when we can all be together! We are missing them a lot, but thanking modern technology for FaceTime!

2 more days to transplant! Go Mia Go!

Chemo Day 3 (Transplant Day -3)

Spa Treatment Showers are done! She has 1 more chemo to go! She was nauseous today and threw up when we attempted to put her NG tube back in, but I have a feeling it was coming anyway!

Other than that, she played most of the day and enjoyed her afternoon walk!

The boys are doing great and enjoying their summer camps!

3 more days to transplant! Go Mia Go!

Chemo Day 2 (Transplant Day -4)

So as you can imagine the midnight and 6 am spa treatment didn't go over very well! Thank goodness the showers are almost done. 12 pm tomorrow will be the last one! The chemo she will get tomorrow and Tuesday only require extra fluids and 2 hour diaper changes again around the clock. This one also causes nausea so we will see how she handles it. We are going to attempt to put her NG tube back in tomorrow, hoping she can tolerate extremely slow feeds. Keeping our fingers crossed!

After a rough night last night, she had an awesome morning! We played hide and seek and also went on a scavenger hunt around the room! We also read, colored, and took care of her baby! Mia is a great little mommy! She was tired this afternoon so we enjoyed relaxing together!

Hope you had a great weekend!

4 more days to transplant! Go Mia Go!

Chemo Day 1 (Transplant Day -5)

Mia had a great day today! She played with her kitchen, Doc toys, and took great care of her baby! She even walked around the room and was able to take a hallway walk in the transplant wing with a mask on! She's a little wobbly on her feet but we will get back to normal one day. The PT has some great ideas to help her strengthen her right leg which is weaker than the left!

She's been handling her showers or as nurse Bonnie calls them, "spa treatments" really well! We will see how the midnight one goes. In addition, she has to have her diaper changed every 2 hours. The big thing with this chemo is to get it off the skin to prevent burns.

She had lots of smiles today! The boys were lucky enough to go to church, out for dinner, and ice cream with both sets of grandparents! We are so fortunate and lucky!!!

5 more days to transplant! Go Mia Go!

Radiation Day 3 (Transplant Day -6)

Mia is finished with radiation! She was so excited to ring the bell to signify she was finished! She did an amazing job and was so brave!

Tomorrow starts her conditioning chemo. The chemo she will get Saturday and Sunday gets excreted through her pores. Therefore, she will need to get showered every 4-6 hours around the clock! She is not going to be happy with the midnight and early morning showers, but just like everything else we will get her through it!

We have been extremely lucky with our nursing staff so far! They have been amazing and so supportive along the way. We are very appreciative!

Your prayers have been such a godsend and we are always so thankful!

6 days to transplant!!!

Go Mia Go!!!

Radiation Day 2 (Transplant Day -7)

Mia had a better day today and handled the anesthesia a little better than yesterday! They made sure they were diligent with giving her anti-nausea meds so she has not vomited, thank goodness! She enjoyed watching Doc of course and Shrek! She's been extra cuddly which I love! She also drank milk and even ate some grilled cheese tonight! Although, radiation oncology has been amazing to her, we are ready to say goodbye tomorrow afternoon!

Go MIA Go! 4 Radiation treatments down, 2 to go!!!

Radiation Day 1 (Transplant Day -8)

Today was an extremely long day! We headed over for radiation at 6:40 am. When we got back Mia began vomiting. Unfortunately, all she wanted was milk but couldn't have any because she was receiving anesthesia again at 1:30 pm. The 2nd radiation treatment was really long because they had to x ray and use sharpies to draw an outline of her lungs in preparation for making blocks for Friday. The last dose of radiation on Friday afternoon will utilize those blocks to shield her lungs.

Her NG tube came out last night when she was vomiting so now we will leave it out until she starts recovering after her transplant.

Hoping tomorrow goes a little smoother for her!

Go MIA Go! 2 Radiation treatments down, 4 to go!!!

Afternoon Update (Transplant Day -9)

Mia is resting up while watching her favorite, Doc McStuffins! Her pain is being controlled by morphine and the anti nausea meds are helping a little but she's still vomiting from anesthesia. Hoping it starts subsiding before tomorrow's anesthesia from radiation. We will go first thing in the morning for the first dose and then around 2 for the second. Praying she remains strong through this not so pleasant experience!

So It Begins... (Transplant Day -9)

Mia did great this morning and is out of surgery and sleeping off the anesthesia in recovery. Once she wakes up, we will be admitted to the transplant floor.

Her new line was placed. Both ovaries looked healthy and they took a good strip for the biopsy. We also had a last minute consult with ENT this morning and they were able to remove the tube that was just sitting in her ear canal. Both ears looked great and there was no fluid so he did not replace the tubes. They began pain meds so we are hoping she wakes up comfortable.

Tomorrow morning she is due for her first radiation at 6am. Thank you so much for all of your calls, texts, support, and prayers! Mia sends her love!

Mia's Story

So tomorrow, our next journey begins!

Most people don’t know Mia’s story but she is our little miracle. I was unable to get pregnant on my own with the boys, nothing major. Mike and I had long discussions about having a third baby and I had finally accepted the fact we weren't going to have a third. To our surprise, the following month I became pregnant with Mia. She was followed closely by high risk doctors throughout my entire pregnancy being Logan has Down Syndrome. She had fluid in both of her kidneys throughout my pregnancy which can be a soft marker for Down Syndrome. Thankfully, that resolved shortly after birth.

She was born a healthy, amazing little girl, 3 years ago! However, she was constantly sick and we were in the doctor’s office every other week for various illnesses. She was colicky, had severe gastroesophageal reflux disease, a milk/soy protein allergy, torticollis with weakness on her right side of her body, and basically screamed day and night for her first 11 months of her life. At 10 months old, she had a seizure and we were told that she had a 50% chance of having a neurological disorder.

Thankfully, life started to get normal when she turned 1 year old. However, when she was 13 months old she began getting fevers on and off at various times, several times a week. After numerous fevers, she was evaluated by an infectious disease doctor. We were told that she didn't have cancer and that the fevers would subside.

This kid has beat cancer twice! She's been through more surgeries, spinal taps, bone marrow biopsies, and hospitalizations than I can count. She has had several life threatening bacterial infections. Mia has had to learn to sit up, crawl, pull to stand and walk again 4 times now! Two months ago, she was still showing leukemic cells at the end of re-induction and we were told to prepare for the worst but hope for the best! Each time this kid comes back stronger and more braver than we could have ever imagined.

So she is our miracle, & fighter. She is amazing and she’s going to kick this cancer to the curb for good now! The team she has behind her and the people she has inspired is more than we have accomplished in our own lives.

Mia will have two surgeries tomorrow. We will be arriving at CHOP around 5:45 am. She will get a new central line for transplant and they will biopsy one of her ovaries for the future.

So here we are once again asking for prayers, encouragement, and support! This is it, her debut and she is going to rock this like no-one has ever done!

Team Mia… You are amazing and we will always be indebted to you!