Mia's 3rd Birthday

Mia had an amazing birthday party yesterday thanks to the help of so many special people especially her Nana and Pop Pop! She even had a special visit from her favorite, Doc McStuffins! She enjoyed swimming in the pool and playing alligator with Daddy trying to catch all of her cousins! We are truly blessed and couldn't have asked for a more perfect day for all 3 kids!

Mia went to visit Father Tom this morning! He blessed and anointed her in preparation for her transplant! She will go for blood work tomorrow and then will be admitted on Tuesday morning after surgery! Please continue to pray as we will need extra prayers in the upcoming days, weeks…

Thank you for all of your birthday wishes and prayers!

Good Long Day

Mia’s final bone marrow biopsy results were negative!!! Amazing news!!!

Mia had another long day today. Radiation Oncology was great to work with and answered all of our questions. They took all of their measurements while she was under anesthesia. They also created blocks for her lungs, as the 6th dose of radiation will not include her lungs as to not radiate them too much. She was pretty cranky when she woke up today, but who can blame her.

Tomorrow, we will meet with the surgeon who will put in her new central line and perform the fertility preservation on August 2nd. She will also see the optometrist for an exam. This will be the end of our appointments to prepare for transplant. Woohoo!

We are looking forward to celebrating Mia’s 3rd birthday this weekend!

Enjoying Days at Home

Mia's microscopic results from her bone marrow aspirate and lumbar puncture were negative again for any cancer cells so we are right on track for transplant!!! We will get the final results in a few days.

We have enjoyed a few quiet days! Ryan, Logan, and Mia had a great time swimming over the weekend at Nana and Pop pop's pool!

Tomorrow, we will meet with Radiation oncology at UPENN. Mia will have a consult and then will get anesthesia for radiation stimulation in preparation for next week!

Thanks to an amazing Orthotist, Mia was able to get measured last week and was fitted today for her new braces that will provide ankle support when she walks! The manager at Stride rite was awesome too and let us come before the store actually opened to avoid exposure to other kids! She's excited to wear her fashionable new butterfly decorated braces with pink straps of course and light up sneakers! Great motivation!

We hope everyone is having a great week and staying cool!

Long Rough Day

Yesterday was an extremely long day for Mia. She started her day off under anesthesia for a CT Scan, bone marrow aspirate, and lumbar puncture. She had some spasms in her throat while she was under; they were thinking she had mucous in her throat and the tube they were using irritated her throat. Thankfully, her vitals stayed stable through all of it. The anesthesiologist was concerned that maybe her NG tube got coiled, but it has been working fine. They also had a difficult time getting some spinal fluid. It took about four tries and more than one person unfortunately. As a result, she has some residual pain and has been on oxycodone since yesterday. We will get the results next week sometime.

After recovering, we went over to the clinic for her immunoglobulin g infusion. They pre-medicated her with tylenol and benedryl to avoid a reaction to the infusion. We finally got home around 7:30 pm after leaving at 6:45 am. Mia has been pretty tired, but has been happy to been home and playing today!

The boys returned home from Delaware this morning! We missed them so much, but are glad they had an amazing week! We are looking forward to relaxing before more appointments next week!

Have a great weekend!

Transplant Training Day

Today, Mike and I went for our transplant training. It was very informative. We met our new nurse practitioner, social worker, a researcher, nutritionist and a floor nurse to get information on Mia.

Tomorrow is another big day. Mia will have another bone marrow biopsy and lumbar puncture to make sure that she is still in remission and ready for transplant. She will also get a catscan to rule out any fungal infections. After recovery, we will go over to the oncology clinic for an immunoglobulin infusion to give her a boost before transplant. It will be a pretty long day for her! Luckily, Nana will come with us to help!

Thank you for your continued prayers!!

Go MIA Go!!!

Rough Transplant Meeting

To say today's meeting sucked would be an understatement! Listening to all the good and mostly bad that goes along with transplant and the possible outcomes and complications were not easy topics to digest! No parent should have to hear any of this. She will be receiving some pretty intense chemo the days prior to transplant too.

With all that being said, we are remaining positive and praying hard! Remembering that she is stronger than all of us!

Go MIA Go! Team Mia is amazing!

Great Start to Week

Mia did great at the cardiologist today. We should have the results by the end of the week! Her labs and check up with Dr. Nick were both good as well.

Tomorrow, we will be in the city for our meeting with the transplant team and fertility doctor. We will get all of the transplant details which will be great for planning.

The boys are having a blast at the beach with their cousins! Mia is definitely missing them!

Go Team Mia!

Much Needed Break

Mia went to the clinic on Thursday for blood work! Everything was good so we will recheck next week. She also went to the dentist today and received clearance for transplant. She did great of course and cooperated like a champ! The next 2 weeks will be filled with appointments in preparation for admission on Aug. 2nd.

She is enjoying a quiet weekend home with Daddy. The boys and I were able to sneak away to Delaware. Luckily, I am able to spend the beginning of the family vacation with the boys and then they will spend the rest of the week with their cousins.

Mia will go for an echocardiogram and ekg early Monday morning and then labs in the clinic. We are excited and busy planning a fun filled birthday party for her and look forward to the celebration before transplant with our family!

Enjoy this beautiful weekend!

Go Team Mia!

Home Till Transplant

Mia had a better night last night! Her ANC is 3170 today!!! We just got home a little while ago. So glad to get her home again before transplant. We will follow up one day this week in the clinic to see if she needs a blood transfusion.

Thanks to the help of some great hospital friends we put a deposit on an apartment in Philly today! Mia will stay inpatient for 4-6 weeks after transplant and will then need to be close to the hospital for 3-6 months. During that time she is at the highest risk for infection and unfortunately we live too far away to get her to CHOP fast enough.

She had a visit from Elmo and Abby Cadabby today and received a few gifts! It was the highlight of her day! We are glad to be home! Have a great rest of the week!

Go Team Mia!

Climb, Climb, Climb

Mia had a rough night only because her NG tube cap kept popping open and soaking her with formula. Other than that, she's still doing great. Her ANC this morning is 200. They will wait until tomorrow to see what it is as it can fluctuate from day to day. Plus this is kind of early to see that number so we want to make sure it is accurate and that her marrow is truly recovering. If it goes up tomorrow, then we can go home!!!

Go Team Mia!

Take A Moment

Mia had a another great night last night! Her 48 hour culture is negative for any bacteria growth! She's feeling great and even ate some Tostitos Scoops last night which are her favorite!

If you remember a few weeks ago, they were a little concerned that there may have been a small piece of her Picc line left in her groan area from when she was originally diagnosed. She had an ultrasound the other day and there is no evidence of the line just some calcification! So more great news!

I have to take a moment to reflect on the amazing village we have! Mike and I are in awe of the generosity and prayers we have received during the past 2 months. There are literally people praying for Mia in several states across the country which is beyond amazing! From gas money, donations, grocery pickups, gifts for the boys, babysitting offers, an apartment for post transplant, to even an incredible offer to give Mia their child's banked cord blood if it would save her life, we are forever grateful! To the 200+ people who were swabbed just for Mia and to her bone marrow donor, we pray that we may be able to return the favor one day if you are ever in need! You help us to be better people and that's a gift we will cherish for a lifetime! Your kindness and generosity will be long remembered! Thank you!!!

Go Team Mia!

Much Better & Last Chemo for Cycle

Mia had a great night! She hasn't spiked a fever since yesterday morning. More awesome than that, nothing has grown from her blood culture!!! They will continue to check it at the 48 and 72 hour mark.

She will get platelets and her last chemo of this cycle today. She will also get an injection tomorrow that will stimulate her bone marrow to produce white blood cells. It can take anywhere from 3 days to possibly a week for this to work. They will continue her on IV antibiotics until her ANC goes up to 200 which is when she will be discharged.

She's not eating anything yet, but is tolerating her NG feeds and maintaining her weight.

Mia had fun playing with Nana yesterday! The boys arrived home yesterday also from a fun filled week with their cousins in MD. I arrived home late last night and woke up to 2 smiling faces! Can't wait to spend the day with them. Mia was happy for daddy to come back from work last night and is currently playing tea party with him.

Thank you again for all of your prayers! Life is good, God is good!

Go Team Mia!

Temp Spike = ER Trip

Mia spiked a 101.1 temperature at 1:00 am this morning at home. We quickly changed her and rushed to Philly because we knew it would be the best place for her. Normally, they want you to go to a local ER if you are over an hour away but knowing there would be no traffic Mike safely got us here.

The highest she's been so far is 101.6. She has no other symptoms of being sick besides just feeling miserable and a high heart rate. They drew blood cultures which usually take 24 hours to come back, but if bacteria grows it's usually faster than that. She's already had 2 doses of IV antibiotics and will continue on them every 6 hours. She will still get chemo today and tomorrow.

We are praying that nothing grows and that she starts feeling better fast! Thank you for all of your prayers so far! They are definitely working!

 Go Team Mia!

Quick Day

Today was a quick day! Her white blood count is 0.0 now. With that being said, she's looking good despite being a little tired and cranky.

Tomorrow, she will be seen at our vorhees clinic for the last time. It's definitely a sad moment in our lives, as most of the people there have become like family. They've played such an important and supportive role in our lives and they will be long remembered!

So we will start our morning off in Vorhees with chemo and platelets and then head into Philadelphia to be admitted. She will remain inpatient until her bone marrow and counts recover. The hope is that she will be home for her birthday at the end of the month before being admitted for transplant.

Your continued prayers, support, and generosity toward our family is truly more than we could ever hope for! We are so lucky that you have chosen to fight this long battle with us! Thank you!

8 chemo days down, 2 to go!

Go Team Mia!

Defenses Down

Today wasn't too bad! Her ANC/ immunity is officially 0 with a white blood count of 0.1. I've been watching her like a hawk and washing her hands more than she approves of. She's still not eating anything but hopefully that will come back soon! She will most likely get platelets tomorrow or Friday.

Our bags are packed and are in the car, so we are ready if she spikes before Friday. She's been great with keeping a mask on also which is helpful when her numbers are so low.

Daddy is ready to spend the weekend with her at CHOP and I can't wait to see my boys Saturday morning!

7 chemo days down, 3 to go!

Go Team Mia!

Long Day

Today turned into a very long day. She received her chemo and everything went well. She also needed blood as expected so we had to wait for that to arrive around 2:30 and then it takes about 2 hours for the transfusion.

Unfortunately, her immunity dropped way faster than they expected. She went from an ANC(Absolute Neutrophil Count) of 2300 on Friday to 80 today. Remember, a healthy child is between 3000-4000. Even though the plan was to admit her below 200, our oncologist said knowing we are very careful and are always keeping her clean that he would wait until Friday. If she spikes a fever before Friday then he would admit her. She will also be at the clinic everyday this week so she will be monitored closely.

Praying she doesn't get sick!

6 chemo days down, 4 to go!

Go Team Mia!

Happy 4th of July!

Happy 4th!

Mike and I have enjoyed a quiet weekend home with Mia, and missing our boys! She's been a little tired and hasn't eaten anything but is still playing and happy! The boys are having an amazing weekend in Maryland with Aunt Bridget! Mike and I even got out for a dinner date thanks to Nana! We are so appreciative!

Mia will most likely need blood tomorrow or Wednesday. She's pretty pale so probably tomorrow. This weeks chemo can cause neurological side effects, so she will have an exam each day. Being she needs chemo 5 consecutive days again this week she will be admitted Friday night to the hospital so she can get the 5th day of chemo there on Saturday. We will also be watching her immunity numbers as when she gets down to 200 this month she will automatically be admitted to hopefully prevent infection.

Hope you are enjoying your holiday weekend!

5 down, 5 more chemo days to go!

Go Team Mia!!!

Go Team Mia!

We are happy this long week is over! Mia did amazing all week! She was pretty tired each day, but refused to nap at the clinic. We are 1/2 way done with chemo for this cycle.

Today, began our discussion about transplant preparation. Mia will be admitted on August 2nd to prepare for her tentative transplant date of August 11th.

August 2nd will consist of another bone marrow biopsy, spinal tap, fertility preservation, and the insertion of a new central line needed for transplant. I spoke with Mia's oncologist today about fertility preservation, as infertility is very common after a bone marrow transplant. Mia is eligible for a trial with fertility preservation. On August 2nd, along with placing her new line, the surgeon will remove a small portion of her ovarian tissue. There is no guarantee, but the hope is that the science and technology for this to work will be available when Mia is of childbearing age.

She will also receive full body radiation 2 times a day for 3 days following her surgery at UPENN; along with immunosuppressants and conditioning chemo during the days leading up to the 11th.

We are so beyond grateful for our bone marrow donor and can't wait for the day we can thank this selfless person! God is good!

Have a great weekend! Happy 4th!

5 down, 5 more chemo days to go!

Go Team Mia!!!