This past weekend a lot went on so bare with me as I may repeat myself :) We had a hair cutting event in support of Sophia that I called Making The Cut. It was two days of hair cutting, family, friends, fellowship, and food! We had a total of 15 people who cut their hair and a total of 4 who donated between 8-13in of hair, and one of those hair cutters was a friend of my sister in law, who lives in San Diego, and cut her hair all the way over there :) It was nice to see everyone there to support our little girl, it means so much to her dad and I. Sophia was having a great time too with all her cousins over, she has slowly returned to her old young self since getting off of the steroids. For about 3 weeks now she hasn't wanted to walk due to her joint pain and weight gain but she has now started to try standing and crawling again. It's so hard to go from passing all these stages with her to going backwards and now forwards and possibly backwards again in the future. What a roller coaster we've all been on, sheesh. I can't forget to mention that there was also a friend of a friend, who lives in Paris, who did a run in honor of Sophia, all the way over there, how awesome was that of her to do. We are blown away at all the support she is getting from all over the world. God is so good to place such people in our lives.
All weekend long my mind was full of appreciation and concern. Appreciation for everyone that helped us out that weekend, which included 2 hairstylist that donated their skill and time, and appreciation to everyone who came over to support Sophia but my concern was for what was to come on Monday, today. Today started out early again, 4:30 a.m. early. We arrived at Children's, checked her in, waited for her to be called and she got prepped for her procedure (LB w/Chemo) then her blood counts came back and her ANC count (Absolute neutrophil count) was low so they had to reschedule her procedure. Hubby and I were kind of bummed but at least she gets another week to recuperate and allow her blood levels to go back up. Since we had to reschedule everything our meeting with the doctor was canceled which we were also bummed about but since we still had to go to clinic to get her picc line dressing changed we asked if we could just get the results from her bone marrow aspiration; the one and only thing I was thinking about all week, the reason why I thought we had to go today besides her procedure, the reason why I was concerned. When the nurse was all done with Sophia she went and spoke with the doctor and got our results for us. She came back with the good news, Sophia's cancer is in remission! So this means as long as she keeps doing well she should be on her way to recovery, Lord willing. We couldn't be more relieved about anything. Remission is a great word to hear since learning the cancer word. We have faith in God that He will heal Sophia completely. So far He has answered every prayer of ours and everyone around us and everyone far far away from us so we have no doubt that He will continue answering everyone's prayers for our little girl.
A.M.T.F.H. is my acronym for appointments, medications, tantrums, food, and hair. This is what our life consist of with Sophia so far. Appointments. Her first outpatient appointment went pretty well, super long, but pretty well. It was almost 5 hours long, not including the traffic we hit heading home. She didn’t cry as much as I thought she would, with the dressing change, but maybe the more we go the more she will cry or the opposite, less crying, we’ll see. The floor that her appointment was on was full of patients with the same kind of cancer along with other kinds of cancers so it was nice to be around people that are going through something similar. I got to see a lot of patients from babies to teens that are bald, due to hair loss, and I noticed a difference between the ages. I noticed that the younger patients cared less what they looked like and the older patients looked liked they cared more about what they looked like. The younger patients walked around bald, as if they didn't know they were bald or didn't care, and the older patients walked around with wigs, hats, or some kind of cover up. I know the older we all get the more self conscious we get about the way we may look or the way we think people see us and for all of this I am thankful that Sophia is going through this (because she has no choice) at the age she is going through it. My hopes for her are that none of what she has to go through effects her as she gets a little older and still has to be going through it. Medication. Everyday, morning and night, Sophia has to be on medication. She is taking 5 different meds along with flushes as a part of her treatment and at the beginning it was a fight to give her meds but now, 3 weeks later, she seems to be getting used to taking them. Every time I give her the meds I say “almost done” so she knows it wont be too long until it’s all done and I think at the beginning she thought I said Elmo’s Song because every time now she says “Elmo’s Song” and starts singing it, it’s so cute, and that’s what’s been getting her through taking her meds without a fight. Tantrums & Food. Sophia having tantrums is not new but they are new in the way of how often she has them and why she has them. It usually goes hand in hand with food. If she can’t have what she wants to eat then she throws a tantrum. It’s definitely hard to not give your child what they want when they want it but when it comes to food its even harder to have to say no. The doctors and nurses told us that her appetite would increase and so well we were aware of it we didn't know just how much it would increase. Big time, it increased big time. I never knew a little girl could eat or want to eat so much all day. Of course we don't always feed her but she's starting to look like we do. She is gaining a lot of weight but it’s just her face and stomach that are bloated, due to steroids. It’s tough to see my little girl this way, she never was really chubby, just a little as a baby but now she has real chub. I hope it all goes away after she is done with steroids. The chemo and steroids are making her not want to walk as much, they did say that her joints could be weak so putting that and her weight gain, in her stomach, in to consideration it all makes sense. It makes me a little sad because Sophia has always been an over achiever at everything since the day she was born, really she was, and to see her kind of digress in certain areas really sucks. She just wants to eat all day, lay around all day and not really walk or play but I know this is just for a season and I am looking forward to when this season is over. I just keep praying that all this be over soon and when it’s over for it to never ever come back. Hair. Sophia’s hair has officially started falling out. I didn't think it would be this fast. The doctors and nurses told us that it would take two weeks to fall out and two weeks went by and nothing. I was relieved and I even asked the doctor if it was possible that her hair wouldn't fall out. He said that there are rare patients where that doesn't happen to them but for the most part all patients lose some to all of their body hair. I started noticing strands of hair but nothing that alarmed me like yesterday, Saturday the 8th of September, it really started falling out. I noticed a bunch of hair on her shirt and I wasn't sure if it was coming from her so I decided to pull on her hair and, yup, a bunch of hair came out in my hand. I kind of freaked out but I didn't want to alarm her. So I asked hubby if he knew it was falling out and he said that he had noticed it. By the end of the day her hair was getting everywhere. If she leaned on you it was all over your shirt or in the bath it just fell out with the water and just every movement she made it seemed to come out. She also has a big knot in the back of her head but I refuse to try and take it out because I know the more I mess with it the more I’m pulling her hair out. I shed a few tears and am emotional about it but I’m trying not to let it get to me especially since I noticed she is noticing it everywhere and I don't want to make her feel like something is wrong. I still cant believe all this is happening to my baby girl. I don't question it at all I just cant believe it. It sucks. I wish it were me and not her or not even me just nobody at all. Life So Far. Our life so far has definitely been a change for forever and is definitely an eye opener. The things I used to be lazy about I feel like I no longer am and the time I used to spend with Sophia I took for granted and I no longer do. All of this has definitely brought my hubby, Sophia, and I closer. I didn't think we could get any closer but we did, it is possible, especially when you let life get in the way and all the daily task that consumes your world and your thoughts. None of those things seem important anymore. The Lord is teaching me new things and I’m sure many new things to come. I was always a futuristic person, a person that only worried about tomorrow and what may come and planning planning planning and I never really slept good because my mind was just going over things that I needed to do, I worried about it too much but now I am taking things day by day, hour by hour, and minute by minute. Life already goes by so fast but when all you think about is tomorrow and the day after and the day after that it goes even faster. I am so thankful that throughout all of this I am learning to slow down and to “stop and smell the roses” not only for my sake but for my daughter, my unborn son, my future children, and just life over all.
Mommy & Sophia being silly
Sophia's Face & Stomach bloat
This You Tube clip seems appropriate for my little one. She would watch this clip everyday on the You Tube channel at the hospital and now that she's just been not wanting to do much I want her to keep trying even though it may seem hard to do. Playtime will come soon little one!
As of yesterday around 7pm-ish Sophia was discharged from the Hospital!!!
What a long week and day it had been. Sophia, Hubby, and I were all going crazy by the end of the week, especially since they told us we would leave on a Saturday, then a Monday and then a Friday, sheesh. God knew that we needed to be home cause it was starting to get difficult in there with Sophia's new tantrums, due to the steroids she is on, and her not being able to go wherever she wanted to but now that we're home those tantrums don't seem as bad, for now. Friday couldn't have came soon enough but it came and we were all packed and ready to go the night before. We were told she should be discharged by noon so I had high hopes to not only go home but to be able to leave early to beat the traffic. We waited for the doctors to make their rounds and before they came in the nurse informed us that Sophia would need to get more blood before she went home to boost her immune system and blood levels. I was okay with that until I found out just how long that would take. The nurse said the longest part would be waiting on the blood to get there, because I asked how long it would take, but before that she would need to take blood to make sure her blood levels were still the same and not worse and then she would receive the blood. I thought okay not bad but then she came in and said once they get the blood they need to run it for 4 hours. I wanted to scream, I just wanted to take my baby home, not even home, I just wanted to leave and I didn't care that I would have to sit in traffic. At this point I would have loved to sit in traffic, anything to just leave, but I just held in my emotions and said okay. The blood came and they ran it for the four hours. We killed time by going to the play room, coloring, decorating crafts, watching movies and drawing. Finally, the blood was done, yes yes yes I thought but then no no no, now the nurse had to run a sailine drip to clean out the blood which didn't take too long but since I was already antsy to leave, it seemed forever. When everything was done and signed Sophia was finally discharged, woohoo!!! I couldn't have felt more relieved about anything in my life, I know 2 weeks is nothing but for never having to be in the hospital with my baby these past 2 weeks were pretty much brutal on everyone, not just Sophia. As we were walking out the doors to the elevators my dad, who had been with us all day, said I'm free to Sophia so she was walking out saying I'm Free, I'm Free, it was so cute and hilarious. I dont think she knew what free meant but I'm sure she felt free. Free from pain (for the moment), free from iv's (for the moment), free from medication (for the moment), free from hospital clothes (for the moment) and free from all the nurses poking her (for the moment). As we walked to our car and driving home and getting home, Sophia had this look of being confused and overwhelmed. She was quiet and didn't say much but I know she was happy to be gone. What a 2 weeks we all had there and what an experience we will never forget. The doctors and nurses there are amazing. They were so loving and caring for our little girl that it brought a peace to our hearts after it was broken into a million pieces. Of course Sophia had her favorites, especially the ones who took her to play with them at their desk and sang to her, but this momma was happy with everyone all around. Our family is so thankful to all who have been praying our little Sophia through this and all the gifts she has received. There are not enough thank you's in this world to say but from the bottom of our hearts to yours we truely Thank everyone!
