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
Monday, January 26, 2015
Saturday, January 17, 2015
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!
Thursday, January 15, 2015
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!
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!
Wednesday, January 7, 2015
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!
Sunday, January 4, 2015
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
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
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