|Emily in Reese's (from ReeseStrong) room on Day 9 of Radiation|
Today was Emily’s 9th day of radiation, so she has 3 days left of radiation. Overall treatment has been rather easy from our viewpoint, just physically and emotionally exhausting. The radiation team has been amazing and very understanding to how we like to handle things and what we like. While we still haven’t really seen any side effects from radiation we do understand that she can have some lasting effects after radiation for a few months. She gets tired easily, but the same as we noted before. Friday we got her counts and her counts have dropped a bit, so we are just being careful and precautions still.
Emily’s oncology doctors have pretty much seemed to be non talkative with us, or so it feels. After 1st transplant, we were having to meet each week for count checks and the doctor would come in, however after 2nd transplant after she was taken off of TPN, we haven’t seen a doctor, we only see the nurses and the nurses talk to the doctors and relay the messages back to us. I have received a few emails from Dr. Gowda however all of which was directed to us from the nurse. I’m not sure if this is normal during radiation, but it feels weird that they haven’t caught up to see how Emily is doing and how she is eating and so forth. We did ask to see if the doctor was available today, and he was with other patients. We updated our nurse of what we were going to be doing moving forward and if she could report that information to the doctor. We thought we might have heard from him sometime throughout the day, however we did not.
We have learned that Emily is afraid to tell us that something hurts and we tend to believe that she is afraid to say if something hurts because it will put her back into the hospital or the worse possible being surgery. We have seen her hold where her bandage is for hickman and will briefly say it hurts and when we ask about it, she says oh it doesn’t hurt anymore or it feels better. Dressing changes have become a nightmare, they have to be done once a week and she absolutely hates them. She will find any excuse she can to hold it off even if the current dressing is holding on by nothing but tape. This past weekend, Dad ended up having to hold her down with me holding her legs down and dad holding her arms down for me to take the tape off. By time the tape was off, she was wanting to get up and did not want to be held down, but they are emotionally draining on us all.
The mood swings and her ups and downs are off the wall. While we know that she is only 4 and has a hard time understanding what is happening with her body and emotions, we too are having a very hard time trying to calm her and get her to understand. Some of the temper tantrums are of the simplest thing, such as she wants to wear a certain pair of pants, or to play the Wii, and when we say “NO”, she doesn’t like the answer, her mood swings are crazy and beyond just crying. While, when they are over, she will say she is sorry and we move on about the day, we are noticing more of them. This too is pretty emotionally, because sometimes we both just want to break down and cry with her. Later we try to explain to her how she acted and what she could have done differently, she does not seem to understand that what she does was beyond rational.
I also want to say I’m sorry for anyone who got to see Emily’s temper tantrum today in the hospital. Actually it was quite overwhelming for us, but she didn’t care that people were looking at her or us. We know people were looking at us probably thinking man she is a spoiled rotten brat, but what they don’t know is what she is really going through. Emily has endured 8 rounds of chemo, 2 surgeries, several transfusions, 8 days of radiation and just pure hell, this along with several hospital stays because of fevers and other things. While at some length we know she doesn’t understand what is happening and having a hard time controlling her emotions, we do know that she knows what she is doing and what is right and wrong. But today she really flipped out at the hospital over a “donut” she wanted a donut. Doug and I don’t like to give her sugar, and have bent the rules a little bit here and there with Halloween being here. At one point I was carrying Emily out of the hospital trying to hold her and push the stroller while she was kicking and screaming. The situation in itself was very overwhelming and made me cry and Doug upset with what happened and what she is going through. Overall we know that when she gets upset, she gets very caught up in the moment and can't control herself. The overall amount of pokes and prods and the hospital and everything else, she has just had enough and this is her way of getting it out. Again we talked to her about her extreme temper tantrums, and she has apologized, and she realizes what she did was wrong, but in all honestly we just do not think she knows what to do when she is in the moment. I cried just thinking about the hell that she has been through and can only imagine what she has going on in her mind of what is happening to her and why.
Emily has tears often, not from crying, but because her eyes tear up. While we have wanted to ask her doctor, we have decided to just wait until we head to CHOP and talk with them about it and see what needs to be done, if anything. This past weekend, we were carrying tissues around just to wipe the tears. We are not sure if this is something from treatment or just something that she has. Emily doesn’t seem fazed by it, however many people comment so we want to make sure it is addressed and not something to worry about it.
While overall things are going “well”, Doug and I still have a hard time just to function on a daily basis, get up and go on about our day. We both have found that we no longer have the patience that we once had, and our stress levels are much higher. Doug often comments that he feels that I am much stronger and hold this family together, however there are often times that I feel that I could just fall apart. I could never say I don’t have days that I just want to cry or even cry often and wish that things were different, but honestly we have found the good out of this and that is the love we have for each other and some of the amazing people we have met. Yet there is a bad side of things to this life, but we try to make the best of them. What makes things worse is that people who don’t have a compassion to try and understand or even ask questions, they just stare and make faces or walk away when we are around. Instead of asking questions to educate themselves, they just remove themselves and we want to tell people, “Emily is not contagious!” Please don’t stare, and I have to admit that adults are the worse. Children just don’t understand, and that is understandable and then other kids don’t even pay any attention, but adults are the ones that look and stare. Please we would rather you not stare, just ask us, we will be happy to tell you about our beautiful daughter, because we want to educate. Just because a child doesn’t have hair, and they have cancer doesn't mean they are different and you have to stare at them. I promise if you took a minute to get to know Emily, you would love her just as much as we do. And then you have others, who just stop to watch Emily and how loving she is and the compassion she has for her family and are in awe of her. In reality, we are normal people, it is just our lives aren’t normal because of what our daughter goes through. Our compassion of wanting to help others and to do something to make a difference in someone else’s lives as many have and continue to do for us is so strong that we can’t wait to “Pay it Forward!”
Cancer is no joke and I can honestly say it is heart wrenching to watch, painful to understand and devastating to go through but even more so to live and accept that each day that Emily can have side effects from the treatment that she has endured so far or even worse relapse. Doug and I enjoy each day that we have with her and are so thankful for a wonderful and loving daughter that we have and the joy that she brings to others. I don’t ever want someone else to have to walk these shoes and know what it feels like, or go through because cancer sucks! I hate the word cancer, Fuck Cancer!
On another note, we received an email last night from Dr. Bagatell on Emily going to CHOP for antibodies with her schedule. It is official and they have a schedule. The anxiety has already started to build for us as she has indicated when Emily has her scans and we are nervous for those. Most likely Sunday, November 6th, we will drive out to Philly and stay at the RMH because Emily has a very busy day Monday, November 7th and Tuesday the 8th. Dr. Bagatell has been awesome and informing us of everything going on and sent me a 15 page paperwork to read about antibodies. Can we say overwhelming? She also asked if we needed SSKI drops for the MIBG scan? We had no clue what they were, however I read up on them and learned that they are drops that the kids take to avoid damage to the thyroid from the iodine that is taken for the MIBG. I responded that we didnt know what they were and I think when she responded she was like, "Oh..." and then explained what they were used for, I think she understands what we are going through here. Emily will have her bone marrow biopsy, CT scan and MIBG and we will have a thorough discussion with Dr. Bagatell about antibodies. We will find out if she wants us to stay for results or head back home and get the call about results. The next week, November 14th, Emily will be admitted to CHOP Monday night to get her ready for starting antibodies early Tuesday morning. The 1st round of treatment will be 4 days and Emily should be done on the 19th unless she has any problems. Emily will be away from the hospital for Thanksgiving and we are very thankful for that. CHOP is trying very hard to keep Emily away during Thanksgiving and Christmas. As we receive more information about CHOP and our trips we will keep you all updated, but this is what we know so far. CHOP social services has already been in touch with us to do the best they can to help us facilitate the stay at RMH. So, the traveling will begin all but too soon! However we are thankful for such a great place to facilitate antibodies for Emily.
We still get questions from all of our supporters who want to assist and what we need help with and honestly at this point, gas cards, food cards and so forth are very helpful for us as we transition into traveling for Emily's next part of her journey. I know some have even asked how to make donations, and you can mail your donations to:
PO Box 5383
Midlothian, VA 23112
Everything is very helpful and means so much to all of us, we thank everyone for all the love, support and care you all have sent.
Hug your kids and give them lots of love!