December 23rd, 2015

Merry Christmas from The Castellans…

Our thank you to cancer, our thank you to you!

To say this year has been a challenge is an understatement. Thank you cancer for changing our lives for the better. Don’t get me wrong, you have made our family suffer beyond words. However, we have learned so much more about life because of cancer and you!

So thank you to cancer…

Thank you for giving us patience, fortitude, and gratitude.

Thank you for teaching us how to be humble and brave at the same time.

Thank you for teaching us how to let go of fallacious beliefs, pettiness, and small-minded thinking.

Thank you for giving us the opportunity to disconnect ourselves from things unworthy of our attention.

Thank you for teaching us what is important and not to “sweat the small stuff.”

Thank you for showing us how resilient and strong one little girl can be!

Thank you to you…

Thank you for renewing our faith in people. You have shown us that no matter what life throws at you, there are always people ready to help.

Thank you for teaching us to be strong.

Thank you for your kind words, thoughts, and prayers.

Thank you for your generosity and gifts.

Thank you for your cards, texts, and phone calls. Even though we didn’t always respond we have read each and every one!

Thank you for standing by us through the toughest of days.

And most importantly thank you for being you. Thank you for teaching us so much about life. We have learned that we need to do more for others. We need to give more, pray more, and love more.

So this Christmas season, we want you to know that you have given us the best Christmas present ever; LOVE. Wishing you love, health, and all the best during this holiday season!

With love always,


Mike, Teresa, Ryan, Logan, & Mia

December 14th, 2015

Just a little update; Mia is doing good. She is enjoying playing with her babies and trashing her playroom. Eating has been an issue this past week, so we are just watching and trying to figure out what the problem might me. Her nurse had us start her back on anti-nausea meds once a day to see if possibly her nightly chemo is the culprit. Although we are not sold on that, I guess time will tell.

Her and the boys are excited for Christmas! Mia is hoping Santa brings presents and a Pink Car! According to her everything needs to be pink and it's her favorite.

She is scheduled for labs and IV chemo on the 21st and gets a break from a spinal tap this month. She will also start steroids again on that day so Christmas should be interesting. Her last dose around Thanksgiving caused severe insomnia. Hoping this month will be different.

We are looking forward to a quiet and peaceful Christmas! Merry Christmas & Happy New Year!

November 23rd, 2015

Mia is on her way home! She had a tough time with the anesthesia and woke up prematurely. Needless to say she wasn't happy!

She is doing great now with some oxycodon, and is napping!

She was a little upset that they took her port! Lol! Only Mia!

Have a great day!

November 19th, 2015

To think this coming weekend last year was the day our lives changed forever! I vividly remember that day like it was yesterday and can replay all of the events back in my head. The days after that were a blur for the most part, but the one thing I will always remember is the love and support from everyone around us and for that I will always be grateful! I don't think we would have made it through this past year without our incredible parents, amazing family, friends, co-workers, and even the kindness & generosity of complete strangers. I am a better person because of all of you!

It's truly amazing what this little girl has fought so hard to overcome. Over the past year, she has had to learn how to sit up, crawl, and walk again on 3 separate occasions, fight off 2 serious, life threatening infections if the cancer wasn't life threatening enough, and received countless surgeries and chemotherapy. She is truly resilient!

Mia, Ryan, and Logan are my inspiration! They have been through so much yet they continue to smile through it all. They have experienced things that no child should have to live through, things that will haunt me for the rest of my life. They are the strongest and bravest people I will ever know and I'm so proud to be their mom!

With all that being said, Mike and I can't express how thankful we are for everything. We are honored that you have chosen to take this ride with us and feel unbelievably blessed! This Thanksgiving I can truly say we are thankful beyond words!

Mia is scheduled for her surgery on Monday at 8:45 am. The surgeon from the city has booked the OR for an hour and then the oncologist will also do her spinal tap at the same time. Please say an extra prayer for a quick and easy recovery! Thanks!

Wishing you and your family a Happy & Healthy Thanksgiving!

November 12th, 2015

Just a little update... We pulled out Mia's NG Tube a week and a half ago. She is doing great with eating. We are working on trying to get her to eat a variety of foods. She has been taking all of her medicine by mouth, she is usually not pleased but hopefully she will get use to it soon. The most challenging thing is that she decides to eat close to bedtime and then she can't get her oral chemo until 2 hours after that. Mike and I sneak in and give it to her while she's sleeping every night and she usually just yells at us, but thankfully goes right back to sleep.

Her surgery to remove her port is scheduled for November 23rd. She will also get a spinal tap and IV chemo that day and unfortunately will be starting her 5 days of steroids. She had a rough go with the steroids last month.

Thankfully, everyone in our house is healthy! I can't believe we are approaching a year since she was diagnosed. It definitely brings a lot of mixed emotions, but we are so thankful that she is healthy and doing great. We are looking forward to a quiet Thanksgiving at home! I will update you after her surgery!

November 1st, 2015

We are so thankful to get to be home for the holidays this year! Last year, we spent thanksgiving and Christmas Eve at CHOP. There are many children who won't be able to be home to celebrate with their families! This year we will be collecting gifts for the children living on the oncology floor at chop and their siblings. We feel so lucky for all of the support and generosity we have received all year and want to pay it forward. If you would like to help us with this endeavor, we will be collecting toys for both boys and girls ages birth to 18. Crafts and gift cards for the older kids are also helpful. I will be collecting items for the whole month of November as the Ronald McDonald House will be hosting a holiday workshop in December for the families. Thank you to anyone willing to help!

October 27th, 2015

So Mia officially started maintenance today! We are so excited as this has been a long 11 months for her! She will now only go every 4 weeks for chemo unless she gets sick. They have scheduled her next spinal tap along with removing her port for November 23rd. We will find out more about that procedure soon. Also, we will be pulling her feeding tube this week and hoping that she will begin eating normal again as we get further into maintenance. All good things and heading in the right direction!

Mia's airway closed during her spinal tap today. Apparently, she had a lot of green mucous which we were unaware of. Being she has her NG tube, it was all down in her throat and stomach. When she was given anesthesia, her airway closed immediately so they had to give her more meds and open her airway. The anesthesiologist needed to suction her nose, throat, and stomach. They also put a breathing tube in to help her. Needless to say, she woke up coughing and pretty agitated. The oncologist said that next time she shows any signs of a runny nose even if it's clear like it was they will postpone the procedure so that she is not put in that position again. She was pretty tired tonight so hopefully she will wake up refreshed tomorrow morning!

Great news, Ryan's fever finally broke and he is allowed to leave the 2nd floor and go back to school! He is still pretty tired but recovering well. We are still waiting for his blood work results.

Of course things can't be quiet around here. Logan now has a second ear infection with his new tubes. We will be following up with the ENT soon!

Other than that, we are looking forward to Halloween and a peaceful weekend! And of course we thank you for your continued support and prayers!

October 25th, 2015

Mia will go again this Tuesday and hopefully be ready this time for her spinal tap and chemo. She has been doing well and has been trying to eat a little more.

Unfortunately, Ryan is still running a fever since last Monday. He has been so good about staying upstairs in his and my room even though it hasn't been easy for him! We will be taking him for blood work tomorrow. Luckily, Mia and Logan have stayed healthy!

I hope everyone has a great week!

October 20th, 2015

Unfortunately, Mia's immunity levels were not high enough to start chemo today. We will wait for another OR date next week and hopefully her body will recover by then.

Ryan spiked a temperature of 102.7 last night. We are praying that he gets better fast and that she avoids catching it. He tested negative for strep and the flu so it's viral.

Please say a prayer that this is short-lived and Mia and of course Logan don't catch it!

October 17th, 2015

So Mia has had a good week! Not sleeping well at night but having great days!

She will start Maintenance on Tuesday with a spinal tap, IV chemo, oral chemo and steroids. We are hoping the effects of the steroids won't be as bad as previous cycles. We are also starting to wean her off of the anti-nausea Meds she has been on. One is considered a narcotic so we are weaning slowly hoping to avoid any side effects.

She has been enjoying playing with her two amazing brothers! They decorated halloween cookies tonight and loved making a mess together!

October 13th, 2015

Mia made it through the weekend without any fevers! Thank you for your prayers, they definitely helped!

She went to the clinic this morning. Her body is recovering from this cycle and her immunity went up from Friday. Her liver enzymes are still pretty elevated from the chemo last week so they will continue to keep an eye on them. Her doctor was happy with her checkup and gave her the flu shot she needed.

We will be officially starting maintenance chemo next week. We are just waiting on the OR to give us the day for her spinal tap so we can begin. She will also have her port removed in November.

Praying for a smooth transition to maintenance as her body adjusts to her new medication schedule. Have a great week!

October 9th, 2015

Mia went for bloodwork yesterday morning. All of her immunity levels have dropped significantly so we are keeping a close eye on her for any fevers. In the past, she has gotten really sick when her levels are this low! Please say an extra prayer that she bounces back fast without a fever! Thank you!!!

October 6th, 2015

Mia had a good day today! Luckily, she did not spike a fever last night. She received her transfusion today also. We will go to Labcorp before work on Thursday to recheck her red blood cell count and platelets.

She is still struggling with her c-diff infection and has been on antibiotics every 6 hours for 14 days and it is still not resolved. We will be following up with the gastroenterologist within the next month. We are hoping he will have a solution and have already discussed some possibilities with oncology. Hopefully, the rest of the week will remain quiet. Thank you for all of your prayers!!!

October 5th, 2015

Her blood work on Friday showed low levels of everything and today was the same. Her blood levels and immunity are low. Mia had a low grade fever over the weekend, but it wasn't enough to go to the ER thank goodness! She's been fighting off a cold all weekend and now it seems like it has turned into croup. We are praying that with her low immunity and the fact that she is fighting off illness that we stay out of the hospital.

She received her last chemo of this cycle today! She will go for a blood transfusion tomorrow and will probably have to be rechecked again this week. Her platelets are also low, so she has been bruising easily.

She will hopefully begin Maintenance chemo on October 21st, fingers crossed! Hoping for a smooth week despite everything going on!

September 28th, 2015

Mia was in the emergency room over the weekend. She spiked a 101.4 temp on Saturday afternoon. We had to go to the local ER being the Pope was in Philadelphia. The chop doctors waited to see what her immunity level was and then would come transport her if it was too low. Luckily, it was fine and she was able to get IV antibiotics there and return home. We were all thrilled and relieved. They took a culture which they are watching for any bacterial or fungal growths. We will get those results today but I'm sure they will be normal too hasnt had a fever since Saturday.

Mia will go for bloodwork this Friday in prep for her last chemo of this cycle the following week. She is still dealing with diarrhea and the c-diff infection. Hopefully, that will clear up soon!

Have a great week!

September 19th, 2015

Mia has been doing well. She received chemo both Monday and Tuesday of this week. She stopped eating for a couple of days and now is back to eating a little bit each day! On Tuesday, the nurse checked to see if they could easily get an IV in her hand. It was very easy and Mia did't even cry. Now that we know it is doable, we will be planning to remove her port sometime in her 2nd month of maintenance.

Her next spinal tap and chemo are scheduled for Thursday. This will be day 31 of our 57 day cycle. We are almost to maintenance!!! Unfortunately, she does have c-diff again, this is like the 5th time she will be treated for it. The antibiotics are ordered but we can't get them locally so we are awaiting their arrival. Besides that she has been happy playing and taking care of all of her babies, and there are tons btw!

We have been honored to be awarded "wishes" from a local wish granting foundation. JPC Childrens foundation has graciously selected all 3 of our children to be the recipients of this award. It is beyond amazing because the boys have been through a lot also and it validates the fact that they are warriors in this journey also! We couldn't be more thankful and honored! We will share details of the event as we get them.

Hoping everyone has a great weekend!

September 12th, 2015

My mom and I took Mia early this morning to get her blood drawn before work. All of her levels came back fine so she is ready to continue her chemo on Monday and Tuesday. Her liver enzymes were elevated which is one of the major side effects of this chemo. They will retest her liver function again on Monday just to keep a close eye on it. This will be her 3rd dose out of 5 total doses of this new chemo this cycle. Once she completes Tuesday's chemo, we will be on day 22 of this 57 day cycle! So excited to be getting close to maintenance!

Despite some bus issues, the boys and I had a great first week of school! Mia has had an amazing week with Nana. We are so lucky and blessed to have her caring for Mia! ??

September 8th, 2015

Great news! Mia's cultures did not grow anything so she just needs to follow up in the clinic tomorrow! She's a little cranky but overall doing good! Thank you for the prayers!

September 7th, 2015

Mia started spiking fevers this morning. We spent the afternoon at the Children's Hospital Emergency Room. Of course, when we arrived there she didn't have a fever. They treated her with IV antibiotics and took a blood culture. We will have her test results back by tomorrow afternoon. They sent her home being her immunity levels are up. She spiked another temperature when we got home tonight. Hoping the Tylenol will help her sleep well!

Please pray that her blood cultures are negative so that we don't have to return to the hospital tomorrow. Thank you so much!

September 3rd, 2015

Quick update: All of Mia's labs were good today and she is ready for her chemo on Friday. Her crankiness seems to definitely be related to the chemo she is getting this cycle. She also had a great first day with her Nana (my mom)!

September 2nd, 2015

Mia has had a rough couple of days. She has been really tired and cranky. She is due for blood work on Thursday to test her liver function to see if it is high enough to continue her chemo scheduled for Friday. After speaking with Mia's nurse today, we are going to bring her to labcorp tomorrow morning so that we know all of her other levels just in case something else is going on. We are also hoping it is just the side effects of the chemo and that she is not getting sick.

On a funny note, she keeps getting her pocketbook and saying, "I'm going home!" Not sure where she thinks she is going but it is pretty entertaining!

August 24th, 2015

Mia's levels were all ready to start today! She did great and literally came out of anesthesia running around the clinic! The nausea doesn't usually set in for a day or two. Hoping to be lucky this round with minimal side effects! She will go get her 2 hour chemo tomorrow now instead. Logan has to be at the clinic at 6:30 am for his tubes so we thought it would be best not to have to wait around after for chemo.

Thank you for all of your prayers! They are definitely working!

August 22nd, 2015

So the saying, "It takes a village," has been so evident through these past months. I felt like we would never get to her last cycle and here we are 2 days away. We really couldn't have gotten through these past months without your never ending support. It's crazy to think that we were told that Mia would get 6-8 of intense chemo and because of illnesses and delays, when we finally reach maintenance it will be close to 11 months since she was diagnosed. Our support team is amazing and we are so greatful!

Mia's has peach fuzz on her head and it's exciting. From here on out, her hair will start to return little by little. Hair loss is not one of the side effects from this coming cycle nor maintenance. Mia has been telling us, she has hair which is so cute! She will get her spinal tap and 2 chemos on Monday and then instead of returning on Tuesday for her 2 hour chemo, she will get it on Wednesday. Logan will be getting his 5th set of ear tubes on Wednesday, so they were nice enough to work with us and let Mia get her chemo then. Praying both kids recover fast and have a good week!

August 17th, 2015

We are delayed again! Although Mia's counts were close, we will be waiting to hear when the OR will have a time for Mia's spinal tap next week. Both Mia's oncologist and nurse practioner felt that waiting was in her best interest! Their main concern is her history of serious infections in the past so they are strictly following the national protocol. Again, we are all praying she avoids any other serious illnesses!

August 12th, 2015

We traveled to CHOP in Vorhees early this morning to hopefully start Mia's last cycle before maintenance. Unfortunately, her counts were not high enough to begin. Her body is still recovering being the last round was so rough on her system and the bacteria infection was so serious. The doctor also thinks that she has mucositis because she's been so irritable, still eating very little, and has been vomiting when she's not on anti-nausea meds. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. She is scheduled to begin this cycle next Tuesday and Wednesday for a spinal tap and different chemos on both days.

Many people have been asking what maintenance looks like. While it won't be as intense, it will still be a long road. She will receive a spinal tap the first 2 months then the 3rd month off, then the pattern will repeat. She will also be getting chemotherapy once a month at the clinic. At home, she will get an oral chemo everyday, another oral chemo once a week and steroids the first 5 days of every month until March 2017. After that, she will just be checked regularly to make sure she stays in remission. She also won't be able to get any vaccinations until 9 months after March 2017. This is especially concerning to us because she doesn't have any complete vaccinations to begin with because she has been so sick since she's been born which they have no idea if that was a precursor for the cancer or not.

As of now, we are trying to relax and enjoy the last few weeks of summer before school starts. I will be returning to work and Mile and I will be sharing the responsibility of taking her to treatments. We are praying that she remains healthy and avoids any long hospitalization stays and that the boys can begin this year with a fresh and stress free start! Thank you for keeping us in your prayers!

August 5th, 2015

We celebrated Mia's birthday at the hospital Thursday night with all of her grandparents and brothers! She had a great celebration!

She was released from the hospital on Friday morning after she received a blood transfusion. She has been doing great since she has been home and has even started to eat a little. She's been primarily tube fed for the past 4 weeks so we are glad that her appetite is returning.

We went this week for lab work at the clinic. Her immunity levels have dropped since the hospital stay but that's what they expected to happen. Her heart rate was a little elevated so we are just watching for any illnesses but she sometimes just has a normal high heart rate.

We are waiting to find out what day the OR has avaliable next week to start her last intense round of chemo. She will start off with a spinal tap and chemo on day 1 and then return the following day for more chemo. This cycle is a little tricky because the chemo she will receive will be in escalating doses but also dependent on her kidney function levels. We are just hoping she doesn't get too sick this cycle and continues to eat more each day!

July 30th, 2015

So to start off, Mia is doing very well and tomorrow will be her last day of IV antibiotics! She is also back to walking great! The bacteria was the cause of her leg troubles and luckily she is good as new! We will be heading home on Friday!

Tomorrow, my little fighter will be 2! It's amazing to think how fast this year has flew, when at times it felt like we were standing still! We are so grateful for the strength of all 3 of our children, as this was an eye opener for all of us. Everyday, they remind us how precious life is! They amaze me with their ability to adapt easily to our new normal! We are looking forward to celebrating with all of them tomorrow.

July 26, 2015

Mia has been improving each day. She has not had a fever in over 24 hours. She began walking yesterday with a good limp in her right leg but has been improving since then. The doctors are happy with her progress. Her leg issue seems to be related to the type of bacteria she has. If it isn't mostly resolved by Friday they will order an MRI just to make sure nothing else is going on. Other than that, she is playing and having fun in her room with her toys. We are working on a plan to help her celebrate her birthday here at the hospital on Thursday! We are hoping she can go home next weekend!

July 23rd, 2015

Infectious disease has identified the bacteria as pseudomonas, which they said while it's still considered a serious infection is common with these kids when they have no immunity. They will be switching up her antibiotics today to treat it!

As as far as her leg pain, her x-Rays from yesterday were all normal so no fractures. Currently, she can't walk or put any pressure on her right leg. It seems that the pain is coming from her hip. We are hoping that it's just related to chemo and that it will improve every day. She has been getting pain meds that have helped a little.

Once again, she is an amazing trooper and is still smiling!

July 22nd, 2015

So here is the latest... We are still waiting for the exact organism that Mia has. They did take a new culture yesterday and nothing grew from it so she is responding to antibiotics which is a good sign. Her last fever was at 2 am this morning along with some vomiting. She hasn't been able to put pressure on either leg and is more sensitive with her right hip. The put her on some morphine and are hoping that will start alleviating the pain. They ordered an x-Ray to rule out any fractures. Just praying it's nothing serious and that she will return to normal soon!

July 21st, 2015

Sorry, it has been a crazy couple of days and haven't had the chance to post on here. Here's what's been going on!

Sunday- we were in the chop er twice. First, was for platlets. We left around 3:00pm and on the way home Mia began vomiting and became lethargic. We turned around and went back to get her severe vomiting under control and then came home late that night.

Monday- we went to the oncology clinic for chemo and she wound up needing a blood transfusion as well. Mia spiked 102.3 during the infusion so they stopped gave her IV antibiotics, Tylenol, and fluids. Her fever went down and as we were about to leave she started shaking and spiked 102.3 again. They told me was safe to go home and would call in the morning if her blood cultures grew anything. I pulled over on the turnpike to check her and she was 103.9! So I decided to drive her to the er!

Today- just met with oncologist and it's definitely a bacterial infection. They will continue treating her around the clock with IV antibiotics until we get more results. Will hopefully know the type of bacteria it is by tonight or tomorrow morning and then her meds may change to treat the specific type. Looks like we will be here for at least 10 days if not more at this point! Please continue to keep her in your prayers! Thank you, we feel very blessed to have your support!

July 17th, 2015

It's been a busy week. Mia had a spinal tap on Monday and got her last 4 chemo shots. We are officially done with shots!! She hasn't eaten at all this week due to the shots. Luckily, I have been keeping her hydrated with her feeding tube. We are hoping she will start eating something over the weekend as we get further away from the shots. She also needed a blood transfusion on Wednesday. The next two weeks she will visit the clinic for chemo and possibly another transfusion or platlets. Her immunity is really low so we are just praying that she doesn't develop anymore fevers!

July 10th, 2015

Well, it's been a crazy week to day the least. After Mia had her treatments on Wednesday; she has not been eating or feeling well. On Thursday, I took Logan to CHOP for a follow up with cardiology and he did great. He has been released for 5 years now! As we were at the appointment, my mother in law called to let Mia know that Mia had spiked a fever. When I arrived home, she was pretty miserable so we headed into the CHOP ER in Philadelphia and were released late last night. Along with her spiking temps, her heart rate was between 170-190. They took blood cultures that will come back tonight so see if there are any bacterial growths. She also received plenty of fluids. We left again early this morning for an eye checkup for Logan and a follow up for Mia at the clinic. Logan made out great again! Mia spiked 102.8 and had an elevated heart rate again! They treated her with Tylenol and waited for her heart rate to drop a little and we were on her way home. Right now, they are thinking her chemo injections are causing her fevers and might pretreat next week when she starts them again. She will get her last shot tomorrow and then if her fever is gone will get another spinal tap on Monday morning! Please keep her and the boys in your thoughts and prayers as this is not easy on any of them! Have a wonderful weekend and Thank you for your continued support and prayers! I know I've said this before but we are beyond greatful for everything!

July 9th, 2015

Mia's counts were all ready to continue this cycle today. She had a spinal tap which went well. Her spinal fluid was still clear of cancer which is amazing! She woke up very lethargic which isn't usually like her, but eventually snapped out of it and was happy. She also received a 5 hour chemo and a chemo injection. So far so good! The nausea should start tomorrow, but we will see what happens! She brought her dollies and babies with her this morning and enjoyed pushing them in their stroller sound the clinic. It was a long day, but good nonetheless!

July 1st, 2015

Mia's counts were not ready to start this past Monday. She is currently scheduled for an all day chemo and a spinal tap next Wednesday. Hoping she continues to stay healthy and avoid any hospital trips. I hope everyone has a safe & happy 4th!

June 23rd, 2015

It's amazing how fast your life changes in an instant! Looking back to last year, we were celebrating summer and looking forward to all of the activities we had planned! This year is so very different as each week is driven by Mia's chemo schedule and blood levels! Unfortunately, it is a means to an end but still doesn't make it easy especially on the kids! With that being said, the boys are excited to be out of school and ready to start their summer vacation!

Anyway, Mia is having a very difficult time with the steroids and has been miserable. She received her last dose last night. Needless to say, the past week has been tough. She's been crying and screaming on and off all day and in my arms. She doesn't want to play or even walk. Her doctor is hoping that these nasty side effects that are making her feel so horrible will wear off in 4-5 days! We are hoping its sooner than that! If her levels are ready next week she will start the 2nd half of this 57 day cycle and will get 2 spinal taps each a week apart and the chemo injections I have been dreading along with some other chemo drugs. Please pray that it's not too tough on her! Thank you as always!

June 18th, 2015

Mia is on her last week of steroids, thank goodness! The steroids have not been kind to her and she is feeling pretty lousy. Unfortunately, once she is on maintenance she will get steroids the first 5 days of every month for the entire length of her treatment. Mia has finished her chemo for now and will begin again in hopefully 2 weeks. Unfortunately, she will also be getting injections like she did in her second month of treatment which were really tough on her.

Other than that, she has become very outspoken little lady and enjoys yelling at the boys and waving her little pointer finger at us as she tells us NO! It's amazing how through all of the horrible things she has experienced that her unique and strong personality continue to shine through. Ryan has been an amazing big brother and enjoys playing with Mia. Logan has been a great helper and is always the first one to help her take her shoes off whether she likes it or not! We are looking forward to the end of the school year!

June 5th, 2015

Today is Day 5 of steroids and we are pretty irritable and moody at times! However, she's been eating a little and not vomiting at all which is great! So far not as bad as we thought things would be! Hopefully the weekend and next week remain uneventful! Have an amazing weekend!!!

June 2nd, 2015

Mia started her new cycle yesterday and literally made the requirements to start by 1 point. She handled everything great including the anesthesia which is sometimes a problem for her! I have to be honest, I was nervous that they would find something in her spinal fluid yesterday, but thank god it remains clear of cancer cells!!!

Today, she's been pretty miserable and is very nauseous. We are hoping if we stay ahead with all of her anti-nausea meds that the effects will be minimal. Other than that, we continue take one day at a time and just hope for the best!

May 26th, 2015

Mia's levels weren't ready to start today so we are delayed by a week as of now. Praying she recovers without getting sick so we can move forward! Have a great week!

May 24th, 2015

Mia has had a great weekend! She's eating better and feeling good!

She will start her next 57 day cycle on Tuesday that will include 2 different chemos, a spinal tap, and steroids! We are not looking forward to the side effects of the steroids and hoping they are minimal compared to when she had them initially! She will then be receiving other chemos during the weeks to come that she also hasn't had since the initial month! We are praying she tolerates everything much better than in the past!

We constantly reflect on our amazing support system and realize how lucky we are! Enjoy the rest of your holiday weekend! ????

May 17, 2015

So great news... Mia's blood cultures were all negative except for the rhinovirus which is the common cold! Her fever broke yesterday and she is up and running around causing trouble and having fun! Enjoy the rest of your weekend! xoxo

May 15th, 2015

So this round is about over. Mia had her last admission chemo and did pretty well with it. Her oncologist does suspect that she has sores down her GI tract which is a common side effect of this type of chemo. The rest of her chemo is now all outpatient which she will receive at the Vorhees clinic. She has been working hard practicing her physical therapy exercises!

We were in the CHOP ER early this morning, as she started spiking fevers at 2 am. Their new protocol is to send patients home if their white blood counts are ok. She will get oral antibiotics here and they will continue to watch her blood culture to see if any of the major bacteria or virus infections grow. If something grows within the next 72 hours we will have to be admitted back for iv antibiotics.

Hoping and praying for an uneventful weekend!

May 10th, 2015

Happy Mother's Day to all of the moms out there...

To the new moms I have met along this journey of cancer; you are brave, amazing, and strong! Your strength has been an inspiration to me!

To all of my trisomy 21 moms; you have showed me what true love is with your acceptance, determination, and respect! You have taught me so much about myself!

To all of my mom friends/family near and far, past and present, and some I have never met; you have shown me what true compassion, empathy, and support looks like! I couldn't have gotten through these past months without you!

To my "sisters" and mother in law; you all have taught the true meaning of family! I can't imagine this journey without your never ending love and support!

To my mom; you are the most amazing and strongest woman I know! There are no words to describe the love Mia and I have for you! You have given me the strength and determination to endure everything life throws at us. I have learned so much by your example; especially your unconditional love! I wouldn't be half the person I am today without you!

I am one very lucky and blessed mom!
Thank you! xoxo

May 4th, 2015

We came home late last Monday night! Mia has had a tough week, but thankfully stopped vomiting yesterday and actually started eating a little bit! We will be going back this coming Friday to see if her levels are ready for our last chemo admission of this cycle. After this, she still has many months of intense chemo to go but at least it can all be done outpatient.

We celebrated Ryan's 1st communion on Saturday and Mia's amazing Nana and Grandma took turns staying home with her so that Mike and I could be with Ryan. It was truly an amazing day for our family and we are so proud of him!

Mia has been busy chasing our poor dog, Lance and trying to steal all of Logan's toys; along with running and trying to keep up with Ryan! Life is good! We are so lucky and blessed!

April 25th, 2015

Mia's spinal tap went well. Unfortunately, due to inexperienced nurses she was woken up prematurely and very agitated. Needless to say I'll be speaking to the department on Monday. She started her chemo last night and it will run until 8pm tonight. She's very nauseous and wasn't able to hold her normal tube feed down that she usually gets over night. Besides that, she's acting like her usual spunky self! She had a music teacher come in to play for her yesterday and she just gave him dirty looks and clearly wasn't impressed with his music abilities! She's definitely a character!

April 24th, 2015

I have to apologize for not posting as often as I should. However, things can be overwhelming at times and it's not always easy to share feelings especially online.

As i put both of my boys to bed crying tonight, I realize again that the simple things in life truly matter the most. Although Logan has a hard time expressing himself, he is truly confused about what is going on and acts out because of the many changes and uncertainties in his life. Ryan was very upset that I won't be here tomorrow morning and that Monday to him is really a long time away. Both of their feelings are valid, and when I stop and think about all of the stupid shit we worry about in life, none of it really matters. Family is what matters! Love is what matters! Life is what matters! It breaks my heart knowing that both boys went to sleep feeling uneasy and I have no control over the situation. It really puts things in perspective for me. There is no nice way to say it, but Cancer Sucks! I pray that your family will never know what it feels like. Although, I know the things my children are experiencing will make them stronger individuals in the future, no kid should have to live it! With that being said, even though I don't express it enough; your prayers, support, and love over the past few months have meant more than you will ever know!

So tomorrow we go back in for a spinal tap and another round of high dose chemotherapy. She was originally scheduled for Monday, but her levels were not high enough. We will be leaving here at 5:30 am in the morning which will be tough being we can't see the boys! Hopefully, the earlier they start means the faster we can get home to them! Please pray for not only Mia, but for my boys as they are dealing with more than they should be! xoxo

April 13th, 2015

Mia handled this last round of chemo pretty well! Mia met a new friend while at the hospital who played Ukele for her and both girls shared some sweet moments. The people we have met along this journey are amazing. Mia enjoyed walking the halls in the hospital and chatting with all of her past nurses. She is very popular! LOL!

Before we left, I had the nurse check her stool because she still has diarehea even though she finished her antibiotics from her last staff infection. We got a call yesterday that she tested positive for the rotavirus. So now we are just hoping that the boys do not catch it and that it clears quickly. We are just monitoring her for dehydration and will keep an eye on how things progress.

Besides that, she is happy to be home with her brothers and is enjoying taking care of all of her baby dolls! She definitely is such a strong little girl! The boys have been amazing also! We are so blessed!

April 7th, 2015

So things have been pretty quiet this week. The vomiting and nausea resolved before Easter and Mia has been eating which is fantastic! She's excited to be home and playing with her toys and big brothers!

Tomorrow, we will get her second treatment of this cycle which will be another dose of 24 hour high dose chemo and then we wait for it to be excreted through her urine before we can go home. Hopefully, we will be home by Saturday or Sunday! Hope everyone had a blessed Easter and Passover and we thank you again for your continued prayers and support!

March 30th, 2015

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

March 24th, 2015

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

March 24th, 2015

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

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

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

March 16th, 2015

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

March 14th, 2015

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

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

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

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

March 13th, 2015

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

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

With love always,
Teresa & Mike

March 12th, 2015

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

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

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

March 11th, 2015

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

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

March 10th, 2015

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

March 10th, 2015

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

March 9th, 2015

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

March 8th, 2015

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

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

March 7th, 2015

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

March 6th, 2015

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

March 5th, 2015

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

March 4th, 2015

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

March 4th, 2015

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

March 3rd, 2015

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

March 2nd, 2015

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

March 2nd, 2015

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

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

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

March 1st, 2015

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

February 28th, 2015

We came home last night. Luckily, when she seems to get an infection it is only a 24 hour stay. The only downside is that she continues not to eat and the antibiotics make her vomit every time. So things will be challenging for the next 7 days but hopefully as she starts to recover from this chemo cycle, her appetite will start to return. She is tentatively scheduled for her biopsy for Wednesday; however I don’t think her body will be ready by then. I will be meeting with the doctor on Monday to discuss the plan and will pass the information to you as I know it. As for Logan, he is feeling much better. Seems like just a cold thank goodness! We will celebrate Ryan’s birthday tomorrow with his friends and then hopefully relaxing for the remainder of the weekend. I hope everyone has a great weekend!

February 25th, 2015

So much for the quiet and uneventful week! We are at CHOP with Mia; she has been running low grade fevers all day and extremely irritable. Logan is at the pediatricians' office because he threw up in Nana's car and is complaining that his throat hurts. Needless to say things are crazy!

Ryan opened his presents this morning before school! Knowing that she would probably wake up with a fever from her nap, I picked the boys up from school early. We enjoyed birthday cake with Ryan before any of this happened! He was excited and relaxed and enjoyed his birthday afternoon with a movie. Grandma and grandpa are out to dinner celebrating now and Logan is in good hands with Nana and Pop pop! We don't know what we would have down without our families. We are so lucky and blessed to have them!

Please pray ray for a quick turn around!

February 22nd, 2015

We were at the clinic everyday this week except for Thursday, so needless to say it has been a long and tiring week. Mia hasn't been throwing up which is great but still not eating very much. She gets her last chemo of this cycle on Tuesday and then the biopsy should follow shortly after. We won't have a date until her counts start recovering. She has been pretty irritable at night and we are not sure what is causing her discomfort but remember the same thing happening last month. We are also monitoring her for any fevers or illnesses as her white blood count is extremely low making her susceptible to getting sick and ending up in the ER. We are keeping our fingers crossed that she stays healthy and according to Mike I am using way to much Lysol!

She continues to have fun and is always amused when the boys and Daddy get home! We have also been lucky to have Nana and Grandma and Grandpa come to the clinic this week with use for extra help and entertainment. We are so very blessed by all the support we have and continue to receive. We are excited to celebrate Ryan's 8th birthday with a small celebration here on Wednesday being we can't take her out! I am hoping to have an uneventful week!

February 12th, 2015

Well, we are at the end of our 2nd week of this phase. Mia received a transfusion yesterday and will get another one along with platlets tomorrow. She has been extremely nauseous and hasn't eaten much of anything the past 2 days. Tomorrow she will also get her last chemo injection for the month. Hopefully, as we get further away from them, her eating will return. I had a lengthy discussion with the oncologist and what the future holds as far as treatments and it still all depends on whether she is in remission by the end of this cycle. It looks like either way her treatments will be given over short hospital stays and maybe longer if she is not in remission. He told me that he feels that she has a good chance of being in remission; while he reiterated that it wasn't a great chance I still took it as decent news. I am a strong believer in prayers and I know they work so I feel pretty confident that we will receive good news in the beginning of March!

February 8th, 2015

Just a little update!

Everyone is healthy! Thanks to all of your prayers no one else in the house got strep throat!

Mia started chemo last Tuesday and has been tolerating it extremely well. We had a quick visit to the ER last Wednesday, but quickly figured out that being her weight dropped her anti-nausea meds were making her extremely dizzy. They adjusted her dose and she has been doing great ever since.

We had a visit to the GI doctor because her reflux has been acting up as well. The doctor upped her nexium dosage and we are back on track with that. The doctor was also pleased with her weight, especially considering everything she has been through. She is hanging right below the 50 percentile for weight which is awesome.

She is actually eating and drinking well most days. Her new favorite thing to do is drink yogurt drinks because she can drink them like Ryan and Logan and of course make a mess all over the kitchen! She also has found a new love for grilled cheese and rice krispies!

She is in great spirits. We go back to the clinic on Tuesday to check if she is in need of a transfusion, otherwise she will probably need one at some point this week. We also asked the doctor to get the road maps for us of the 2 possible 3rd rounds of chemo treatment so we can plan for the coming months.

Ryan will make his first penance this week so he is excited about that and Logan had a great time at his music class today! Both boys are doing well and adjusting to our new routines with Mia. Her hair continues to fall out and is extremely thin. We talked to the boys and they know that her blood is sick and that the medicine she is on causes her hair to fall out. We also explained that when her blood is healthy again, she will grow all new hair. They have been amazing big brothers and we are so proud of the both of them!

xoxo,
Teresa

February 3rd, 2015

Poor Logan has strep and is recovering at Nana's house! Please pray that Mia doesn't get it so we can avoid another hospital visit. She had a great couple of days leading up to starting chemo tomorrow! She's been busy playing and being silly which is exactly how things should be. We are hoping the next four weeks move quickly and end in good news!

January 26th, 2015

On Saturday, we finished the awful antibiotics which killed her stomach and caused extra nausea and vomitting. I went early this morning to get her labs checked, but her counts aren't quite ready yet to begin the 2nd half of this cycle. They are confident that she will be ready next Tuesday, so our process is delayed for a week. While I am happy that she will have a week off; our biopsy will also be delayed by a week. So next Tuesday will begin the last 4 weeks of this cycle. She has still been having issues with eating and luckily she will take a bite or two from her amazing big brother, Ryan; while her biggest fan, Logan is always happy to cheer her on! She's been happy to play with her new Christmas gifts and likes to walk her dolls in the stroller and feed them in their highchair. For the most part, Mia is in a great mood these days! Again, we'd like reiterate how appreciative we are for your continued prayers and ongoing support! xoxo
Teresa

January 17th, 2015

Mia's cultures indicate that her infection is viral. CHOP's new protocol is to send home ALL patients if they are only presenting fevers and are responding to fever and pain meds. She is comfortable as long as we keep up on the oxycodon. So we will be heading home tonight with more antibiotics because they continue to treat it as a bacterial infection! After them going back and forth about an extended stay, their decision is bittersweet to me. We will monitor her closely and possibly have to return if she gets worse or does not maintain fluids or return to eating in a few days. Her chemo and spinal tap are up in the air this week and we will see if her cough improves and they will make a decision. Thank you so much for all of your continued support, thoughts, and prayers through this journey.

January 17th, 2015

Mia was transported from Jersey Shore Hospital ER to CHOP late last night. She woke up from her nap yesterday with a low grade temp but trembling. Brought her to the ER and she began spiking fevers. They began treatment and then prepared her for transport. we are awaiting blood results to see if they can determine what type of infection it is. she had a pretty rough night and has been on Tylenol and oxycodon for pain. Please pray that this is short lived for her and that we can return home soon! Thank you!

January 15th, 2015

Mia has had a pretty tough week so far. She received a transfusion on Friday and then another one along with platlets on Monday. On Tuesday, she had her 3rd spinal tap of this cycle along with 2 1/2 hours of chemo as well. Needless to say it was a long and tough day for her. Yesterday was a rough day because she was very nauesous and irritable. We are still trying to find the right combination of drugs to help with nausea and the doctor was surprised that she has been so nauseous.

Mia qualified for early intervention yesterday. This a great step in the right direction to help improve her motor skills. She has already made a lot progress on own but definitely needs the extra assistance.

Mia has also enjoyed playing and being around her brothers. She's upset when they go to school and sits on the bottom step by the door and looks for them! She also likes playing with our dog, Lance during the day and gets mad at him when he is sleeping which is most of the day!

Next Tuesday is her last spinal tap of this cycle. Then, we wait until her WBC and other numbers return to normal before beginning the 2nd half of this phase. It will be an exact repeat of this month minus the spinal taps. The injections and oral medication she was on for the first 14 days of this month were really tough on her so we are not looking forward to that.

All of her spinal taps and blood work results have showed no leukemic blasts which is great that her body is no longer making cancer cells. Now we just pray that this cycle can get rid of the 2.5% left in her bone marrow so that we avoid a different 3rd phase of treatment!

January 7th, 2015

So today was a good but long day! This was the 3rd spinal tap and blood work that showed no leukemic blasts!!! The doctor said that he still wasn't confident that her bone marrow would be at 0 by the end of this round but was still happy with today's results. I get that he doesn't want to give us false hope and appreciate his honesty. We will be returning on Friday for labs because it looks like she will need a transfusion. We will just take it one day at a time! I know that GOD is hearing all of our prayers! Thank you!

January 4th, 2015

Mia had surgery on Tuesday for her port and everything went well except her becoming hypoglycemic from fasting. The doctor will now hook her up to fluids on any days requiring surgery as soon as we arrive. Mia started her 1st day of her 2nd round of chemo on Wednesday. She has been nauseuos, so we have been giving her anti-nausea meds around the clock. Eating and drinking have been difficult for her so we just buy and offer lots of different foods and hope she eats something! She's definitely better when the boys are around to distract her so tomorrow should be interesting when they are back at school!

Her final bone marrow biospy results showed 2.5% of Leukemia left which is better than the 5% preliminary results. She should have been at 0% to be considered in remission this month but we will take it one day at a time. This cycle will last approximately 57 days and then they will repeat the biospy which then needs to be below 0.01% to avoid a 3rd round of stronger drugs some of which will have to be given inpatient. Her last 2 spinal taps and blood work have showed 0 leukemic cells which is amazing! We are praying that this continues. Tuesday she will have her labs and spinal fluid checked again and will receive chemo in her spinal fluid. After that, we have 2 more spinal taps this month. She is also receiving chemo injections 4 times a week and taking a daily oral chemo. Needless to say, she is one tough kid and has been in good spirits this weekend.

We will hopefully be starting physical therapy soon as she has regressed in that area. Not sure of the exact cause, but is probably a combination of being stuck in her hospital room, weight gain from the steroids from last round, and possibly nerve damage from one of her chemos which she will receive again this month. Thankfully, she has been improving a little bit on her own everyday!

Please continue to pray for good results with minimal side effects as we enter into this next phase of treatment! Again we appreciate all of your support and prayers during this challenging time in our lives! We feel very blessed for everything everyone has done for us and will keep everyone in our prayers as well!

Love,
Teresa