The Joys of Neutropenic

Emily with Stewie, "Dogs on Call" on Friday's Clinic Visit

Here we are already a few days past the last day of chemo, which was Friday.  Friday went well though, Emily did great with the chemo transfusions and because it was Friday, they wanted to have her counts checked to make sure she would be alright for the weekend. Emily was so happy to have her pictures taken with Stewie from the "Dogs on Call" Therapy Dogs and she will be in the 2013 Dogs on Call Calendar. Counts came back and we had noted earlier with Emily's nurse that we were seeing an increase of tiredness.  After chemo, we were going to volunteer our afternoon and help with the Anthem Lemonade Stand, however Emily's counts stated otherwise.  Emily would need a blood transfusion. So another long day in the clinic, overall was a pretty good day. WBC and ANC was still looking good.

Turtle that we found in the yard

The weekend was absolutely great.  We enjoyed spending time with our bestest friends and just enjoying company and having a relaxing time.  Saturday was such a gloomy day outside, so much so it appeared to look as it was evening most of the day,  that we stayed in the house all day and watched a few movies and enjoyed have our friends be at our sides. We enjoyed pizza, laughing, talking and just being together.  And for the first time, we saw a turtle in our yard. How neat is that. We learned about the turtle we found and the girls and I even fed the turtle some lettuce.Thank you so much for coming and visiting.

Monday came all too quick, which meant another morning of time at the clinic. Counts scheduled for this morning and the neulasta shot. Emily has really become well aware of scheduling and when she needs to get that pesky shot that she despises. Just like it used to when she would need to get her port accessed, the fear of the shot to come, overcomes her.  The tears start and then the crying takes over. She tries so hard to be strong, but sometimes she just can't hold the fear in.  As you try to console her, all her mind allows her to think about is the shot to come and she can't let the shot out of her mind until it is over. For some reason today as I was sitting with her trying to console her, my mind ran back to the time when she was first diagnosed and they were trying to get an IV and was just having a hard time and her screams were all that I could hear.  No today wasn't like that, but I sat thinking about all that this 5 year old little girl had gone through and wished she could be doing anything else but this.  If none of this had ever happened she would still be in daycare, but today we continue to fight the fight with lots of hope along with many other families, old and new. She did get the shot, and did ok with it. She did scream as it the needle went in, but once it was done, she was ok and ready to get the port out so if she felt up to it later in the week, she could get into the pool.   Today she didn't need any blood products however, platelets were pretty low (just not low enough to require a transfusion but low enough to cause a bruise where she received her shot on her leg. Daddy also had to get a shot today, so telling Emily about daddy getting a shot also seemed to help calm her down a little bit. Todays counts also revealed she is neutropenic, the joys of neutropenic.  Back into the world of masks, not around people, no leaving the house, except for the clinic only and the fears of fevers and worse yet inpatient stays.  We are noticing the increase of crankiness, fussiness from the nifurtimox, but she is handling it well, and again we are proud of everything that she does.

The amount of food that Emily is eating is already starting to decrease.  Weight has already started to decrease as well, not much, but 26.6 lbs down from 27.5, but still for her every little bit is noticeable and very well taken note of at VCU.  Tonight we had dinner, and Emily took one bite and it was all she wanted.  She fell asleep about 730PM and just recently woke up, she said she is hungry, so the hope is she will eat a little bit. Daddy and I will continue to keep up with her and make sure she eats as much as she can so we don't face having to stay inpatient and receive TPN or anything else.  Emily will have clinic again on Thursday for count checks, but I have a feeling we will be watching her closely in what may mean that she will need to have to go and get platelets.

We ask that you send out lots of love and thoughts for Emily as the next few days, we will be watching for fevers and/or bleeding and we hope for no problems.

Brianna, Emily and Sue before they were heading.  Thank you guys for visiting, we miss you guys so much!

Round 2 MIBG Therapy Complete

Emily in the garage at CHOP with her lifesize Minnie balloon from Sue George

Yesterday Emily completed Round 2 of MIBG Therapy, and that will be her last MIBG Therapy that she will be able to have. Sometime after the 26th (I believe, just have to confirm with our home hospital) Emily will have her stem cells given back to her with the hopes that her hemoglobin (red blood cells) and platelets (the most) will recover on their own. This will be the most important thing is to make sure that her platelets recover so that she will be eligible for other trials to rid of this horrible cancer.

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.