I couldn't sleep, so I'm up at 5:30am after an hour of tossing and turning while Chris and Scarlett (and Cosmo and the cats...) sleep. As I was wandering the internet, I found out that there has been a scam involving someone posing as the mother of a cancer kid and taking money from people. I am so sorry people were hurt. I know people are skeptical, as they should be, so I just want to confirm that we use everything we have been given for Scarlett; we have a trust account for expenses related to her care; we save everything - every card, every kid-drawn note (we just got a binder-full of pictures and letters from my first graders), every gift for her; and more than anything, we are just very grateful and overwhelmed by the generosity that has been shown to us in the last few months. I am not sure where we would be without the help of our family, friends and many, many strangers who have been touched by Scarlett's story.
Yesterday, Auntie Lindi came with Scarlett and me to the doctor. We go twice a week at least, and Chris often has to work, so it was great to have someone to help me haul the stroller and gear around. I am still learning to navigate the world with a stroller; it is quite a challenge sometimes, between things falling out of the basket, finding elevators rather than stairs or escalators, squeezing between furniture in a store or waiting room, all while trying not to clip the heels of someone in front of me. And somehow, I always end up holding the baby and filling the stroller full of stuff...
At the appointment, we got good news and bad news (as we usually do). Good news: Despite the recent gastrointestinal pyrotechnics, she actually GAINED a tiny bit of weight. This means no NG for at least a few weeks, since the nausea is wearing off and her appetite is recovering. Woo!
Bad news: She needs a blood transfusion. This is expected, since the chemo is doing its job of killing off blood cells. All three of her blood counts (red cells, platelets and white cells) are very low, so we are going back today for red cells and platelets (her white cells have to build up on their own). It's not really a big deal, in the grand scheme of things; she has had blood transfusions before (after surgery #1 and after RSV); it does, however, take 5+ hours to get the blood into her. So, a long day at the hospital is ahead. It was good to see that, even though her counts were very low, the doctor nor I thought she looked very sick - she is not too pale, still gets rosy cheeks, and has good circulation response in her fingers and toes.
She has been such a trooper for this first, very long and drawn out round of chemo. Luckily, she gets one more week of a break from the heavy drugs to let her body recuperate. We are planning to be readmitted to the hospital sometime after the 27th...it all depends on her blood counts, since we can't start until she is back to full power.
I so know what you mean about the stroller and I am on my third kid. It doesn't get a whole lot easier. I am sorry that she has to get blood today, hopefully it goes well and she has a decent day. I am so happy that she gained weight, that is such good news. I will continue to pray for her healing and that you would have peace and that the journey won't be so hard.
It's so great to see Scarlett on the road to recovery! She has touched so many lives & we're all better people because of her. Great news that she has gained weight :) Keep it up baby Scarlett!!!
We are continuing to pray for Scarlett through this crazy ordeal. I am also sorry she has to get blood but at least she is gaining weight and has good circulation and color. She looks just beautiful in her tutu!!
I don't know if a technology like this would be useful, but I saw this article and thought of Scarlett:
It's amazing how often I think of a little girl I have never met. You and your family are in our thoughts often and my prayers every night. I am so glad to hear that Scarlett has gained a little weight - every ounce counts!
I have a lot of major health issues myself and spent the day in the ER earlier in the week and saw a baby. I can't imagine how difficult that is. So my hat is off to you and your family for being such an inspiration to me. Your strength, dedication, humor, and honesty is truly inspiring. We are rooting for you!
Yay for the weight gain! I'm sorry to hear she needs a blood transfusion, but I hope it all works out and makes her stronger! Keeping you in my thoughts.
Thats great to hear she gained a little wieght! Think of you often and check your blog daily. Was thinking of your comments about life with a stroller... have you ever thought of looking into babywearing? With my first daughter I knew nothing about it(wish I had)now with my 4 month old little boy I wear him whenever we are out. So much easier, it makes it so I can push a cart and hold my older daughters hand! Also so nice to have him near me, a great way to keep him away from germs and strangers too! Thebabywearer.com has good info if you would like to look into it, just a thought. Will keep your family in our thoughts and prayers!
No one could fake how amazing Scarlett is!
I was also going to suggest babywearing, especialy a wrap. I love my sleepy wrap and moby wrap. You might find she is comforted easily in it too. I have a colicky baby- still at a week shy of 4 months- and she loves the wraps!
I was going to mention babywearing too. There are some places where maneuving a stroller is such a pain. So many places we go are not stroller-friendly at all. Even though my son is 17 months old now, I still wear him when we don't want to deal with the stroller and it's too crowded or not appropriate for him to walk on his own.
I have a Moby Wrap and a Sleepy Wrap and you're welcome to borrow either. My son has outgrown them, so they are in the bin with my maternity clothes. I can send them up to my mom if you'd like to give them a try. They are very comfy and could be good for Scarlett and her neck strength. Just let me know!
Scarlett is such a trooper! I was going to suggest babywearing too, though I'm not sure how her port plays in to that--isn't it on her chest? My Ergo carrier is my most prized baby possession. Keep hanging in there!
I'm sorry to hear that she has to have blood transfusion. I'm glad to hear that she has gained some weight. Every ounce counts. I check your blog daily to see how your family and Scarlett are doing.
I'm so glad to hear she is doing better! I have been following your blog since you only had about 300 followers. Now look at the support!
It means even more to me to hear your good progress since I am now a mother of a sick child too. I gave birth three weeks ago to a tiny little boy, Corbin. At one day old, the doc heard a heart murmur. Then at ten days old, he had heart surgery for an Interrupted Aortic Arch. He has more surgery ahead for VSDs (holes in his heart) but he is recovering so well right now. He was just diagnosed with Williams Syndrome-a genetic disorder which caused his heart defects.
My heart goes out to you. I cannot imagine the pain of watching your child go through chemo. It is hard enough watching my son battle heart defects..and now a genetic disorder. It's heart wrenching.
Stay strong! We are all praying for you and couple lovely daughter. :)
Here is my blog, if you would like to read more.
though i just officially subscribed, i've been following your blog for awhile and it's good to see all the progress she's making. Its a long road to recovery but Scarlett is a fighter and will definitely overcome and hurdles she faces! Can't wait to hear about all of her upcoming milestones! Lots of love of plenty of prayers from my family to yours!
Brandi, Come on over to the Oct. 2010 board, we miss you!!! We have created several prayer threads for Scarlett. Many of us have red siggy's in honor of Scarlett. I hope that you can find some relief in seeing that some of us are experiencing some of the same common baby stuff such as the stroller issue. :o) Scarlett is BEAUTIFUL!!!!!
It makes me so happy to see the pictures of her. Scarlett is such a trooper and she looks so happy in her new tutu! I have not stopped thinking of her and you guys since I found this blog through BBC. I have been following Scarlett's journey for about 2 and 1/2 months now and I am so thrilled to see how far she has come! Scarlett really is a miracle in the making! :)
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