So today was a pretty busy day, as every other day seems to be lately. Not only did Sophia have her appointment at the hospital but so did I for baby #2, almost back to back appointments. I am one tired momma right about now!
Sophia has happily completed 2 phases of treatment and is well on her way to recovery. Our prayers are still for no complications along the way as this will set her back and prolong treatment. So far she's responded really well to everything. She began her last phase of treatment today and Lord willing that everything goes well she should finish in 2 years, approx. 22 months left. This last phase is broken down into several phases and right now she started intermaintenance phase 1 which consists of her only going to the hospital every 11 days for 2 months. I'm really happy we don't have to be going every week. So every 11 days we'll be at the hospital where she'll be receiving chemo. The difference this time is the chemo she use to get in the spinal tap (methotrexate) will now be given to her through her picc line, this may cause her to get mouth sores where getting it through the spinal tap wouldn't do that to her and it may also not happen, so we are praying this doesn't happen as I am sure it is pretty painful but every 11 days her chemo dosage will go up making the chances of her getting those sores greater. I believe once this phase is over (2 months) she should get her picc line out and then start her next phase which she would only be going in once a month and getting chemo through an IV line. This will hapen if all goes well with her picc line, or else she'd have to get a port which is an internal catheter. Her doctor likes to work with picc lines and I am glad becasue that means for a port to go internally she'd have to have a surgery to place it in and a seperate surgery for it to come out which would leave her with a scar but if it has to happen then it happens but I really dont mind the picc line and she doesn't either. She helps me clean it everyday and flush it. She's got this whole routine down and is becoming an expert at it :) I am also happy that she will not be on any new meds as of now so that makes the daily routine seem less then it used to be. I can't believe how far we've come, it seems forever right about now but we still got lots to go through. So for now we're on an 11 day hospital cycle and anxiously awaiting baby #2! God is so good, so good!
The new normal is all about our life with Sophia and how things are going back to normal; a new normal. I finally feel like this new routine we have for Sophia of doctor visits, clinic visits, procedures, chemo, picc line flushes, medicine taking, unplanned ER visit, and hair loss shock is all starting to feel like this is how life has always been. I can't forget to mention all the doctor visits I have of my own for baby #2, you should see my calander; can you say Bbuussyy. It's a little overwhelming if you think about it as a whole but once broken down into times, days, and help from family it's not that bad, it's a lot to deal with at times especially when a doctors visit that's suppose to be 5 hours turns into 10 hours :( ugh 5 hours is already a lot but overall it's not that bad. We feel like her hair is coming back little by little and the weight is shedding off pretty fast too although we are now practically begging her to eat instead of trying to not let her eat so much. What a difference a week makes and new meds. She is now walking on her own again, she's still not all running around but she sure tries. She went from not walking for 3 weeks to army crawling around the house to holding onto someone to walk and now little miss independant is all on her own again. She is one determined little girl. It's so cute to see her with her cousin, who motivate her so much, running around the house as she tries to catch up, she loves them and I love that they have such a big part in her life. I feel like I'm getting my little girl back and then some. I feel like she's even more silly then before and her talking has gotten so much clearer. Her words sound like my words and everything her dad and I say shes gotta repeat it too. Before cancer life was always changing and we were always adjusting to whatever life threw our way, the good and the bad, so when cancer was thrown our way I thought we would never adjust but God is proving Himself more and more to us that things are going to be okay and He has put a peace in our hearts where we are comfortable with life and everthing it has to offer for now. We are adjusted to this new life He has laid before us. Now when baby #2 comes that might be a new story but I'm sure with time we will have an all new normal, a new life with 4, and a new road to go down. As always we will continue to trust God every step of the way and We are still so thankful for the continued prayers and support from all over :)
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!
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