|Emily says "Happy early Valentines Day!"|
February 2nd: Today is day 10 after stem cell infusion and we are still waiting for her platelets to recover! Her ANC and WBC are starting to go up so we know platelets are last and longest to recover so hopefully they start to go up soon. She will be back in clinic to check!
February 5th: Emily has clinic in the morning!! Tomorrow will be 14 days since her stem cell infusion, please send lots of love and thoughts for her platelets to be up and she won't need a transfusion. Dr. Sholler was looking over all of Emily's paperwork this past weekend and we have a call with her tomorrow evening!
February 7th: Yesterday was the first time since we have been home from MIBG therapy that Emily did not need platelets! She was getting them twice a week and yesterday they were at 35! Anything under 20 they transfuse! This is great and we hope they continue to go up! We have clinic Thursday morning to see where things are! I hope to update more tonight! Thank you everyone!!
February 8th: Emily had clinic in the morning and we will see where her counts are! Hoping that no transfusions are needed and just a quick visit!
February 9th: This is our Emily with her platelets at 55 today! Do you know what that means? It means her stem cells worked and it means she will be eligible for other trials to get rid of this horrible beast NB! Woo hoo!
Thankfully Emily's platelets have recovered and we have finally gotten over 55, in order to qualify for any other trials Emily has to have 50.. We finally finally feel a huge sense of relief and that we can breath again because this is what was holding us back to be eligible for anything else.
We did talk with Dr Sholler on Monday evening. Sholler is an amazing woman and what I can tell you all that she has given us "HOPE" That is right, she has given us "HOPE".
So from here, we have one week left at home and then on Sunday, February 18th we head to Philly to stay at the campground that we previously stayed at, where there are some amazing people there! Monday Emily will have her MIBG injection along with talking with Dr. Mattei about her pending surgery on Thursday of removing her broviac/hickman line and having the central line placed and also having her bone marrow biopsy done. Tuesday Emily has her MIBG scan done (scanxiety is already here) and then we meet with Mosse on Wednesday. Right now we are keeping everything open and taking in what trials that CHOP has to offer and also we know what Sholler has to offer us. Sholler has all of our information and insurance information, so should Emily need to go there we will. We have no idea what to expect, because we have no plans, however we can breath easier knowing that her platelets are recovering and we will have options available to us.
We did have her HMA/VMA levels checked, and Dr. Gowda said there is only a small improvement from July, but its better than nothing, but they are still a bit high. These are not valid tests to go by, but it does help to see where things are.
So Emily is doing great right now. She is happy, she is eating, she is going to a school on Fridays that is through the ASK Clinic from 930 to 1230 as long as her ANC stays ok, so we are happy with that.
This is really quick tonight because I really just wanted to update, but I want to watch a movie with the hubby tonight. We have lots of HOPE, this is what matters.
Make sure you hug and kiss your kids and tell them how much you love them.
Your baby girl is so beautiful. I love that her hair is growing back. <3 I remember seeing pictures of that beautiful long blond curly hair before she was diagnosed. She is beautiful. Hair or no hair. <3 I am so very glad that things are taking you in a better direction. I know this past year has been hard. I have been following you since it started. And following your blog before it started. You are always in my thoughts and prayers.ReplyDelete
Love, light and healing from Florida
Way to go Emily!!! So happy to hear about these victories! You are all in my thoughts every day!ReplyDelete
I am glad for the updates, the funny part is on my hour commute this morning to work I couldn't get you all of my mind. Sorry I have not been in touch but will always love you. I miss you so much! Emily looks great!ReplyDelete
Hope!!!! That is fantastic. I am so happy to read this and she looks beautiful as always!!ReplyDelete
Thank God! I am so happy for Emily and you all! God bless you all! <3ReplyDelete