|Emily in the garage at CHOP with her lifesize Minnie balloon from Sue George|
The infusion for MIBG Therapy began Thursday after and her numbers were at 21. We did the ativan again as well as the bladder medicine and later Thursday we noticed that she was flipping out about bugs. At first there was tiny ants in her food and then there was flies all around and then there was bees and the bees were in her blankets. I kept trying to reassure her that there was not any bugs around her and she was ok, but she was screaming and not happy. So, we decided to lower the dosage of the ativan and instead of every 4 hours, changed it to every 5 hours. This really ended up helping a lot. Thursday evening, it was 11 PM and she was crying about everything, nothing was making her happy, she just needed something to take the edge off, she was so tired but would not sleep and crying about everything. So, they gave her a low dose of benadryl and within 10 minutes she was peacefully sleeping. Friday morning they were at 9.8, her levels were much like they were last time. Friday was better and the 5 hours spaced out really helped. I had heard that Nuc Med was coming back in the later part of the afternoon and I had asked if they could have her numbers checked again in hopes that if she was at 7 that they would allow the foley to come out and stop the fluids and medicines except the SSKI. They were at 7, exactly 7. He followed up with the nurse who followed up with the doctor and he came in and said yes but we would still have to wait the 48 hours from infusion of MIBG Therapy to get the MIBG "super scan" completed. We were ok with that and anything that would make Emily happier and be able to sleep with Mommy again (although she shouldn't be, but we don't care...as long as she is happy). She was so happy that the foley was coming out that she helped take it out. I told Dr. Maris (he was the on floor oncologist) that he rocked for allowing us to do this (when typically if it had been 48 hours she could have been released) and he looked at me like I was crazy. But Dr. Maris is a good man, good doctor and does amazing things and even goes to the senate (http://www.chop.edu/service/oncology/childhood-cancer-awareness/). Saturday was discharge day and she would have her MIBG "super scan" at 130 PM, she was ready and couldn't wait to get it over and done with. I won't stress over the scan, but "it appeared" that we saw some other things that were not there before and even on the other "super scan" done back in November. Bob, the tech, took special attention to Emily's left leg, and when I asked why he was taking another picture of it, he said oh because we have to. He was talking through his computer and running in and out of the room, so now as parents who have been through MIBG scans before, we are not idiots. Again, we won't stress and we will wait to see what comes out of the scans when we get the results back from the doctors.
We came back to the campground last night and will be here till Monday when we leave Monday to head home to make sure that Emily is ok and if she needs anything we will be close to CHOP that we can head back. Emily is doing well, she is just tired off and on and quickly. We are enjoying time together and thankful for a warm camper, because it is cold here. Thank you again Timberlane Campground, you all have been amazing to us and we continue to thank you for your kindness and warmness toward us.
When we get home, Emily will have clinic on Tuesday morning and we will be off to reading. Thanks to Donna Ludwinski whose son Erik who passed away 2-9-10 from NB who relapsed after 13 years, is such a great advocate and has a lot of information. Doug thought I should get in touch with her and I am really happy that I have, she sent us a lot of information which Doug and I will start getting into. I also contacted Maya Thompson (Ronan's Mommy) who passed away 5-9-2011 and she will be sending me Shollers information to get in touch with her. There are a lot of amazing women who are trying to do amazing things for this stupid ass cancer, NB. And we will be in touch with Sloan as well to talk with Kushner. I don't know where things will take us, and I have no idea what the expect that will happen in the next 6 weeks, our hopes are that there is no progression and her platelets are at least above 50 so Emily will qualify for a different type of treatment.
We are not in denial that NB is a horrible cancer and we have to get it and go at it quickly, things can change so quickly and without you even knowing it. So the 6 weeks is where we sit and worry again about the waiting, the waiting is this going to work? February 20th we will be back at CHOP for MIBG Injection with MIBG Tuesday February 21st. We are 6 weeks out and the scanxiety has already started. I am thinking we will be bringing the camper back again not knowing how long we will be here or what will action happen when we are here, but I guess we will cross that road when we get closer to the fact.
Thank you everyone for your prayers, you love and your kindness. Many of you have been very supportive and wondering what will help us while we are home. Thank you. We will be home by Tuesday, and there will be a cooler (requested by FGP - Laura, THANK YOU!) on our front porch if you want to drop food off, you will just have to put ice in the cooler. If you want to drop off something hot, normally between 5 and 6pm should be fine. Our family eats all organic and natural foods. We still are not up for much of talking yet, and honestly not sure that we will ever be, but we do appreciate everyones wonderful kindness. For me, I find it easier to hide behind the computer screen for now because emotions take over. Again gas gift cards for traveling are must appreciated, Whole Foods and Trader Joes gift gards are very much appreciated, and honestly just support means the most. Again thank you all for all of your wonderful love, thoughts, support you have left for us.
What I ask the most is that you keep spreading the awareness about childhood cancer and about Emily who is fighting NB. Share her with everyone, she is special (and not because she is our child and not because she is fighting for her life, but because she really is. Each child is special) and everyone deserves to know about her. And most of all make sure that each night you hug and kiss your children and tell them how much you love them.
We are cheering for you Emily!!ReplyDelete
Hi Shannon, I just tried to post but it got erased, so I'm going to be more brief. You and Emily are inspirations! Thanks for sharing your story with us all. We'd love to send Emily a Cloud B Twilight Turtle as a gift. Our son, Max, is fighting brain cancer and this toy has been so awesome for him. He's 4 yrs old too. Just email us at email@example.com with an address (our website is www.maxloveproject.org). Sending 100% LOVE & hugs, Audra & SuperMaxReplyDelete