I know it has been SO long since I wrote an update for you all, but I have been consistently getting messages wishing Tilly well and asking how she is doing. Those thoughts are always appreciated. I know so many of you have taken an interest in her health as we move forward from treatment and I am going to fill you in a little now!
Finishing treatment is a really strange feeling. It is hard to explain. It kind of feels like you’re being lazy. When you’re in treatment you have this plan and schedule for when and how everything is going to be accomplished. You’re working tirelessly at the goal of reaching remission or NED (no evidence of disease) status. Your life is filled with tasks like charting medications, flushing the port, managing appointments with your doctors, packing for your next hospital stay, and constantly researching. So when it suddenly stops…..it feels really really odd. You feel like you aren’t being active in fighting anymore. You feel like there must be something you should be doing. You feel like you’re being lazy.
That is kind of the place I was in for a long time after we left St Jude’s. It really is a complete adjustment to a life you have become so accustomed to. Tilly was diagnosed at 8 weeks old and I had forgotten what it was like to have a baby without all of those things in the mix. It took a while, but I think here at 4 months out of treatment things are starting to settle more. We had our first set of post-treatment scans and they looked great. We still see our doctors every few weeks and have physical therapy twice a week, but this slower schedule is starting to become normal for us. I have started to realize that I can just live – albeit very attentively- and that IS being active in taking care of Tilly. I have channeled my nervous energy in other ways and tried to not let cancer be my life anymore. It will always be a part of our lives, and certainly something I will always have in the back of my mind, but I am tired of letting it define us and own every minute of my day.
Tilly is still just a baby, almost 9 months old. She is happy, babbling, playing, and just doing normal baby things all day. She has two teeth and I am afraid she is working on the top two at this moment! Her hair has gotten so long and thick! It isn’t the color that it was when she was born anymore, much lighter. She is obsessed with books and LOVES turning the pages. She is so curious and into everything. She has the biggest smile with big dimples in both cheeks – just like her mom! And we can already see she has a touch of drama – just like her dad.
I am looking forward to spring and summer so much. Hopefully her blood counts fully recover soon and we can start getting out a little bit. It is taking time, but that’s okay. We do get to go walk in the park and sit outside now that the weather is nice, and it is great just to have those little things that get us out of the house for even just an hour. We are set to start swim lessons soon as well in preparation for our big first family vacation to the beach. Lots of exciting things coming up!
It isn’t lost on me for a moment how lucky we are. I am grateful every day for our many blessings. I know so many families with children who are still fighting with unimaginable strength. These children and their amazing parents are such an inspiration. I know childhood cancer is sad. I know it isn’t something you want to think about constantly and I get that. But it is also where you find the biggest heroes in the smallest packages. Our buddy Brody is one such story! He came through his stem cell transplant at St Jude’s last week like a champ! That is just another huge step forward towards the end of treatment for him. If you want to follow his story on facebook you can do so here: https://www.facebook.com/BrodysFightAgainstNeuroblastoma
Thanks for caring about Tilly and asking how she is doing. I will continue to update Twitter and Instagram with pictures!
Until next time,
This post is long overdue! I am sure you are all as busy as I am with the holiday season upon us. This is my first with a baby and WOW what a difference it makes! It is going to be such a great Christmas for us and we are so excited to share some good news we got recently.
On Dec 9th we checked in at St Jude’s Children’s Research Hospital. We were so grateful to be admitted at such a wonderful facility. I am sure most of you are familiar with St Jude’s, but it really is an incredible place. I cannot imagine a better environment for these children who are fighting for their lives. Because of this hospital and their never-ending commmitment to research, the childhood cancer survival rates have been consistently improving. Please check out their website and consider giving; they are a 100% cost-free facility, operating at a cost of about a million dollars a day through donations. www.stjude.org
We had traveled to St Jude’s for Tilly’s resection surgery. After completing further scans, they determined that the surgery was ultimately too risky for the potential benefits and decided not to operate. So rather than spending the next week in ICU, we were on our way home the next day! Ryan and I were absolutely thrilled with this news. It was really more than either of us could have asked, given that we were informed at the beginning of her protocol that additional surgery would be involved.
That being said, I tweeted earlier this week about inaccuracies in reporting on Tilly’s condition. I think that if I wasn’t in my own shoes, I wouldn’t know any different and would have drawn the same conclusion others did. But for some reason, it really frustrated me to be on the receiving end of so many messages about Tilly’s health that were extrapolated from a small piece of information. I can’t really explain exactly why it was so irritating. I am extremely protective of her and sometimes I can’t justify how I feel, I just know that I feel that way.
Cancer never “didn’t happen.” You don’t go from having cancer to not having cancer overnight. You don’t get to forget all about it and wake up the next day a totally normal person. At best, you get to be in one of various levels of remission. Don’t get me wrong, we were ecstatic to hear that she wasn’t having surgery and is moving onto the monitoring phase of her protocol, but like anyone who has had cancer or been close to a cancer patient knows, by no means is she done. I really struggle with how much information to share on the subject because I really don’t feel like it is mine to share. It is Tilly’s, and while she can’t say anything yet, I somehow doubt that if she could she would divulge all of the details. So I will just say this: she is doing incredibly well. We have had our last anticipated chemo and everyone is very optimistic about her continued health. She faces challenges going forward that stem from the original location of her tumor. I have no doubts, however, that she can overcome it all. We work hard every single day to get as much normalcy back for her as possible. She has shown so much progress and strength; I couldn’t be more proud of her.
I appreciate all of the support as always! Today I am going to ask that you think of someone else though. Through this experience I met a little boy named Brody, and I have been so lucky to have his mom Bristol to talk to and lean on. Brody has stage 4 Neuroblastoma and his surgery is today at St Jude’s. Please say a prayer for his surgery to go well and for a quick recovery. He has a long road ahead and will need continued support as well. If you wish, you can “like” his Facebook page and follow his journey here: https://www.facebook.com/BrodysFightAgainstNeuroblastoma I have met some really awesome people through all of this and I consider this family to be among the best.
I think I have said quite enough! Thank you all for reading and caring for my sweet girl. I sincerely appreciate you.
Tilly got pictures made yesterday so I will update again soon with a couple of them; I think they’re going to be so cute!
It has been WAY too long since I updated this blog. I had every intention of doing it sooner but things always seemed to get in the way. I will take this moment while Tilly is sleeping to bring you up to speed!
Tilly had her 4th chemo treatment the week of Nov 4th. It was a really rough one and she was pretty sick for a couple of weeks. The nausea always seems to last longer for her than for the average patient. She ended up getting a blood transfusion to help her counts recover and felt better from that point on. Since then she has just been getting a little better every day with her energy and demeanor. During normal schedule we would be starting chemo again on Monday, so this is her best time.
We have been working towards surgery since her diagnosis. Because of the location of her tumor, it was not resectable. The hope was that the chemo would shrink the tumor enough that it was easier to remove; they thought this may be possible in 4 rounds. And now, here we are! She had scans last week that were sent to her surgeon at St. Jude’s Children’s Research Hospital. Ultimately it will be their decision based on her scans to declare her ready for surgery or if we need more chemo first. It’s hard not to be stressed out while we wait for an answer. We are hoping and praying daily that she is ready for the surgery and we will be on our way to Memphis sooner than later. I am so excited and grateful to be taking her to such an amazing place. I know she will be in the absolute best hands possible.
In non-cancer news, Tilly helped put up her first Christmas tree! I thought she would be all kinds of excited, but really she didn’t care at all. She has looked at the tree maybe 3 times. Better luck next year! She is 4 months old now and so big! I really couldn’t be any more proud of her. I had my first “night out” since she was born this week and went to the Justin Timberlake concert. I thought I was doing really good until about halfway through the concert when I went to the concession stand and proceeded to show her picture to everyone who would look and announce that it was my first time away from her. Embarrassing.
We have family pictures this week and I can’t wait to see them! I will share a few when we get them back. For now, enjoy her “monthly” picture. I have done this every month (once while we were in the hospital) and it’s so fun to look back and see how much she has grown.
I hope you all have a great week!
Only a handful (if any) of you who read this will know who it’s coming from. My name is Ryan and I’m Britney’s husband and Tilly’s dad. As you know too well, (since you’re on this website, after all), our baby was diagnosed with cancer. What you can’t possibly know, is the incredible effort, care, love, supervision and support that Britney has given Tilly as well as me.
Britney would never create a post boasting on herself. So that’s exactly what I want to do. I’m not going to rival The Odyssey here with a lengthy entry, I just want to hit the main points. I want her to know that her actions and efforts don’t go unnoticed.
From Day 1, Brit has been relentless with her research. She is constantly two steps ahead of even Tilly’s doctors. She keeps the house running, she keeps me in line, she has sacrificed her entire social life to insure that Tilly is exposed to as little as possible. She stays home day and night, a slave to the “bubble” we have created around Tilly. She is a professional at the in-home medical procedures and physical therapy. She is the most involved that any single person could ever be. She is the foundation for the strength we as a family have developed and she is the spearhead that has lead the offensive.
I couldn’t be more happy to know her and I couldn’t be more proud to call her the best mom, my best friend and my wife.
I love you Brit.
Getting straight to the point, I am thrilled to say that Tilly’s scans went well and the results are GREAT! The tumor is responding to the chemotherapy and is officially shrinking. It was good enough to say that we MAY be gearing up for surgery fairly soon, and we are so excited at the prospect of that. Even though surgery scares me, I am just ready to have the stupid cancer out of her body and be able to say she is in remission. This is the most encouraging news we have gotten since her diagnosis and we are just ecstatic. Maybe this can all be behind us sooner than later. Even though we got all of the good news, the last round of chemo was pretty rough. She was nauseated for a few days and just felt uncomfortable. I hate seeing her like that. She seems to be on the upswing now though. It always gets better and better and then when she finally feels good again we start chemo over. It is the kind of thing I am anxious for and dread at the same time. I know it needs to be done.
I am also ready to be able to get out of the house. I have been a little down lately that we aren’t getting to do a bunch of the fun things that I had hoped for during this change of seasons. I see the cutest pictures of babies in pumpkin patches and getting to wear costumes for Halloween and it makes me a little sad that Tilly can’t. It is really important that while she is going through chemotherapy we keep her isolated because she is at an increased risk of infection. Even if she runs a slight fever we have to be admitted to the hospital, so we just play it safe and stay home. This means that we will be spending Thanksgiving together, just the three of us, so good luck to Ryan enjoying whatever I cook! ;) I was one of those paranoid freak moms that wouldn’t let her leave the house when she was little either, and she was diagnosed at 7 weeks, so she has still never been into a restaurant, store, or any home other than ours. It will be so nice to be able to take her places.
I tweeted earlier this week that I am becoming a broviac flushing pro. I really feel quite accomplished because going home from the hospital for the first time I was absolutely terrified knowing that I was going to be giving her injections and doing the flushes. All of the nurses assured me that I would be fine! They were right. We usually get through the injections tear-free and the flushes in about a minute or less!
She’s always performing new tricks, so this weeks latest and greatest would have to be sitting in a bumbo seat and chewing on everything she can get a hold of! In particular she loves to pull her blankets and burp rags into her mouth. Even though shes doing that and slobbering like crazy, I refuse to let myself believe she is starting to teethe. Nope, that would make me cry, so it’s definitely not happening. Moving on!
We have received the sweetest packages and cards from so many of you! We read every one and I am saving them for her. It always feels good to get encouragement and well-wishes. So again, thank you for those.
Next round of chemo isn’t until week after next so hopefully we just get to enjoy ten or so more days at home. I will update again soon. Hope you all have a great weekend!
I know it has been a while since my last post; we have been enjoying every minute of the past couple of weeks at home! The third round of chemo starts tomorrow, and we also have some important scans scheduled. It is going to be a very intense week for us so please, as always, keep us in your thoughts and prayers. We are extremely anxious for some good news. It will be a little bit hard to sleep tonight!
Tilly turned 3 months old yesterday! I can’t believe how quickly she has grown! She is unbearably cute. It really seems like yesterday that we were bringing her home from the hospital. I try to remember that as badly as I want for her to be bigger (and consequently better), I also want to enjoy all of her being a little baby! It really is so fun. I have wanted to be a mom since I can remember and it is the best and most rewarding experience of my life. I love it SO much……maybe too much. I think I am addicted to baby! It’s easy for me to wish the time away between appointments and chemo treatments because I have such a sense of urgency for her to be DONE with cancer, but I really need to cherish the moments.
We continue to be blessed with her progress and how much better she is feeling. She spends so much time smiling and “talking”! I hate to revisit in my mind how miserable she was pre-diagnosis because it was so awful. It has been a constant reassurance to us that she is doing well just by seeing her content. She is also continuing to slowly gain weight, which is great considering her treatments.
All of you who have sent cards and little gifts are so awesome! We love reading all of the encouragement. I think it is so amazing that Tilly will be able to see just how many people from all over cared for her.
There is this sweet book called “I love you so” that I read to her a lot, and this one part makes me start crying every single time. Luckily it’s toward the end of the book. “Even when I’m sick and I can’t get out of bed? Do you love me better healthy than with fever in my head? I love you sick or able, you’re always you to me. The one I love forevermore. Undeniably.”
Thanks again for reading and for your thoughts & prayers. Hope to update again soon with good news!
Happy October! Nobody in my house is sad to see September go……good riddance! :) I have a few updates to share with you on Tilly.
First of all, the feedback from my first blog post was so encouraging. I really appreciate all of you taking the time to read these posts and send us your positive thoughts/prayers. I never realized how much support I could receive from the BB Community until now; I am more grateful for the experience than ever.
We have had a busy week or so since her last chemo treatment! First, she has started to lose her hair. The first day that I noticed was really hard on me. She was born with super thick, dark hair and I have been jealous of it every day since. In fact, at my last ultrasound appointment when I was pregnant the tech told us that she had tons of hair and gave us a picture of it (not that we could tell what it was). I will definitely miss it. However, I know that it is just a temporary loss and is necessary for her to get better. She will still have her gorgeous eyes, dimples, and smile, but we are definitely going to have to step up our headband/bow game! Also she was admitted for a blood transfusion this week due to her counts being low. She couldn’t have taken it any better; she was smiling and happy for the whole thing. We got to come back home the same day and she is feeling great! Her latest and greatest tricks these days are constant babbling and holding her head up! She also loves to be read to. She is such a joy and watching her grow is the best time of my life.
I want to add another thing that I feel particularly blessed for right now: my husband. I think in difficult times you really learn what your marriage is made of, and I couldn’t be more thankful to have him by my side. I feel more confident than ever that I married my best friend. He has made me smile every single day during this process. I couldn’t imagine a better father for Tilly or companion for myself.
On a different note, I have learned that a few weeks after Tilly was diagnosed another little one in our area was diagnosed with the same cancer. My heart broke thinking about how much heartache the family was experiencing; certainly those first few days are the hardest. It is a sad realization that this is happening all over the world each and every day. When you take time to read or think about my baby, think of these others as well. All of these children are precious and the most important person in the world to many, just as Tilly is to me. I wish that nobody had to face this.
I know that some of you requested a PO Box so that you could send Tilly well-wishes. I think that is so sweet and thoughtful! I have one set up and will post the address below. I am going to save all of the cards we receive to show to her someday. I want her to always remember how much she was cared for!
I have finally found the courage to write my first blog post. I think that these will get easier, but I’ve struggled for several days trying to decide what to say. I am still figuring out how to approach this situation and deciding how much detail I feel comfortable sharing. I was surprised when the news about Tilly got out. I made a post on my personal Facebook page (not fan page) and someone posted it on a Big Brother website. I wasn’t upset because I knew I would share the news eventually; it just caught me off guard. So forgive me for taking so long to find the words to say here……it is a bit of a struggle.
My little girl was 7 weeks and 1 day old when we rushed her to the emergency room. We had been making regular visits to the pediatrician for weeks trying to figure out why she seemed so unwell. I researched like a crazy person for answers, but everything that I found pointed to “normal baby behavior” and I was constantly reassured that she would grow out of this “fussy phase.” I held onto those words while we waited for answers. We found out at 4am on Labor Day that she had cancer. It was shocking to say the least. Cancer hadn’t been a consideration, not even a worse-case scenario. I don’t like to think/talk about a single minute of those 24 hours. I know that I had never truly been heartbroken in my life until that moment. I had never really felt helpless. I had never really known what it was like to cry. That was the first time that I learned what those things really felt like.
Tilly started chemotherapy within 26 hours of being diagnosed. She had biopsy surgery the following day and recovered from both like a champion! After 2 1/2 weeks we got to spend a few days at home before we went back for her 2nd round of chemo. She is still on the mend from that now but is doing well. I am so proud of her. She inspires me with her strength and keeps me going. Many times I would have probably crumbled if she wasn’t smiling.
Today we are in a place of hope and optimism. All news has been good news since the diagnosis. I find a thousand blessings in the situation each day. I am grateful for her age and inability to remember the pain. I am grateful for her team of doctors and their knowledge in treating her. I am grateful for a small platform to bring awareness to this disease and the thousands of other children (and parents) who suffer.
Mostly, I feel blessed for the outpouring of support from so many people. I am grateful to have so many amazing friends who have made a most terrible situation a little better. They continue to surprise me by doing little (and sometimes big) things for Tilly, Ryan, and I. In fact, this site wasn’t my idea at all, but a gift from a couple of the best. I am touched by the support of all of you who are reading this. I mean it when I say that I am appreciative of each prayer that goes up in her name. I am grateful for your kind messages on twitter. I can’t tell you how dramatically my spirits have been lifted by so many notes of encouragement and hope that I have received.
I never had any plans to be this person…..a mom who blogs about her daughter’s journey fighting cancer. But here I am. Sometimes I will be a little shaky because I really don’t know what I am doing, but I will do the best job that I can. Thank you for taking the time to listen and care. I will update again soon.