of a Child with Lymphatic Malformation
Hello Readers!
This blog has moved to a new website at www.gratefulmother.com. This will be the last post on this website. All content has been moved over to http://www.gratefulmother.com and that is where all future posts will appear. I have also migrated email subscribers over to the new site, so if you received email notifications announcing new blog posts from this site, you should continue to receive email notifications announcing blog posts on the new site.
As I was walking to work a couple days ago, I began looking back on 2014. As this year comes to an end I felt it was only right to reflect back on everything that has happened. Our life is practically unrecognizable at the end of 2014 as compared to the end of 2013. The end of 2014 finds us living in a different city, me at a different job, Brian ending a job and looking for new adventures and opportunities, and Atticus another year older with a whole new set of skills and favorites.
In many of the same ways that 2012 was a major year of changes for us, 2014 is not too far behind in terms of transformation. When 2012 began, we were childless (well, I was pregnant), living in Champaign, IL, and both working at University of Illinois. By the end of 2012, we had a child, were living in Charlotte, NC and had both started new jobs.
2014 has certainly been a year of transformation and change, a year of new roads and journeys, and a year of each of us taking steps towards our desired future. Here are some of our major changes from 2014 that I am especially grateful for:
1. Atticus’s medical treatment with Dr. Richter at the Vascular Anomalies Center for Excellence – ever since we drove to Little Rock this past July, Dr. Richter has been Atticus’s primary specialist treating his lymphatic malformation. We have been so happy with Dr. Richter and the staff at Arkansas Children’s Hospital, and although Atticus has only had two treatments there so far, we do see a difference in the size of the malformation. Dr. Richter’s plan for decannulation (trach removal) is much more speedy than we were previously told, and we are grateful for that (look for that as a major change for us in 2015!).
2. Calling Raleigh my home – talk about setting an intention and following it through! We first discussed moving to Raleigh in late July and were moved here by early October! With accolades such as the following, who wouldn’t want to call this place home!?
Downtown Raleigh – “City of Oaks”
North Carolina State Capital Building
Peele Hall – my office location at North Carolina State University
3. I can walk to work – as much as I enjoyed living in Charlotte, I do not miss the traffic and my old commute to work. We lived within the city limits and only about 8 miles from my office Uptown, but it took me around 40-60 minutes to get to work everyday. In all of the places I have lived, I have never been able to walk to work, which is something that seems insignificant, but was always something I wanted. We are currently living in the Cameron Village neighborhood of Raleigh, and with me working at NC State University, walking to work is now a reality (e.g., note the first sentence in this post)!
4. Atticus’s speech – there was a time when we really did not know what to expect regarding Atticus’s ability to speak intelligibly. Hearing him talk non-stop now – it is sort of hard to remember that that was ever a concern. Nowadays, he spends his time talking up a storm, asking “What’s that?”, singing his “ABC’s”, and “Jingle Bells”. We have been told by his new speech therapist that his speech is exactly where it should be for a 2.5 year old, and probably even more advanced than your average 2.5 year old. She also said that if she was not looking at him, and just listening to him, she would never guess that he had any sort of oral anomaly.
5. We are 2 hours closer to PA – not only does Raleigh have everything we are looking for, but this move also puts us around 2 hours closer to our familes, who are heavily concentrated in the Northeast. It’s always been important to us that Atticus see his extended family regularly, even though we live far away. Being a little bit closer makes it easier on everyone and I believe it has already increased the number of times we’ve been visited by family!
6. First extended family vacation – in July we took our first extended family vacation, which included grandparents, aunts, and uncles. Since Washington, DC is the halfway point between where we live in NC and where our families live, and since there are endless amounts of things to do there, it was a no brainer! We had a week filled with fun and educational outings, and just bonding in general in the townhouse that we rented.
2014 has been an extremely transformative, productive, and eventful year. A lot has happened – more than I have the energy to write about in this blog. For all of the good that happened in 2014, there were also times of hardship and times that we were tested, but life has a way of working itself out, and you emerge a stronger person in the end.
I’m not sure where to begin with this post. And it might be a little disoriented (like my current mental state), but I’ll give it my best shot! So back in July when we first had our consultation with Dr. Richter at Arkansas Children’s Hospital, we learned that Atticus would need treatment there every 2 to 3 months for the next approximately 2 years, and then treatments more spread apart after that. This will consist of lots of sclerotherapy (bleomycin injections), laser treatments, another surgical tongue reduction, and multiple surgical reductions to his lower lip. We were so excited (and still are) to learn of all of these treatment options for Atticus, but on our 12 hour drive back to Charlotte, it hit us – how would we pay for all of this? How would we get the time off of work? How can we both work full-time and travel to AR every few months?
During another 7 hour drive from Charlotte, NC to Washington, DC (this time for vacation), we started to re-evaluate our lives. Long story short – we now live in Raleigh, NC – the Research Triangle of North Carolina. We felt that job prospects and pay would be better there, and Raleigh is consistently ranked as a best place to raise a family. This move also puts us around 2 hours closer to our family in PA.
I started a new job at North Carolina State University in their Office of Institutional Research and Planning and Brian is finishing up his semester at Wingate University, so he is back and forth between Charlotte and Raleigh, while me and Atticus are in Raleigh full-time. Anyone who has ever moved knows all of the stress that comes along with that, so I won’t get into those details!
Me, Brian, and Atticus flew out to Arkansas on Thursday, November 13th and checked into Ronald McDonald House in Little Rock. Atticus’s treatment was at 10 am the next morning. When Dr. Richter first saw Atticus the morning of surgery, he was very pleased with the effect that the previous bleomycin treatment had on Atticus’s tongue. Sometimes it is hard for me and Brian to tell since we see him everyday, so it is always nice to get someone else’s opinion on the tongue, especially when it’s the opinion of one of the best LM doctors in the world.
Another thing we learned on this past trip is that Dr. Richter is planning to take Atticus’s trach out on our next visit which will be sometime in January or February! This is so exciting for so many reasons – traveling will be so much easier, Atticus will be able to be with other family members without us being present, he will be able to swim, no more medical supplies, the list goes on and on…
This was the first time that Atticus had a surgery that was done outpatient. It was really nice not having to sleep in a hospital. Hospital stay or not, though, the whole thing does take a toll – both on us and on Atticus. He is getting older now, and more aware. He still does not seem afraid of hospitals, doctors, or nurses. He does get a little medicine to help him go back with the nurse to the operating room. The injection/laser treatments take only about a half hour, and then Brian and I get called back to recovery. I honestly can’t even remember, but I think Atticus was back in recovery for maybe 45 minutes and then an actual room for maybe an hour, and then we were free to go.
Seeing him in pain never gets easier and seems to be getting harder. His tongue and lip swell up a lot after the treatments, and I am sure it is very painful. You can see the pain in his eyes and his facial expressions and it breaks my heart. He doesn’t eat well for days and is typically prescribed an antibiotic, a steroid (to help with swelling), and pain medication. Administering the medications gets increasingly difficult as he gets older, stronger, and more aware of the fact that it is medicine, and medicine is no fun.
I know that I can’t go down the road of why – why was Atticus born with this lymphatic malformation for which there is no cure, and why is there not an easier course of treatment? As a parent, it is frustrating having to see your child go through so much for something that seems like it shouldn’t be a big deal – like being born with a big tongue. I wish there was some magic pill that he could take to reduce the size of his tongue, that would spare him all the seemingly endless surgeries. But I know that is just not an option – and we have to work with, and be grateful, for the options that we do have. I try to be strong all the time – for Atticus, for myself, for Brian – but sometimes it’s OK to just let myself feel instead of always having to be strong. Its OK for me to get upset and cry, as long as I pick myself back up and keep moving forward.
The past couple weeks have marked some pretty big milestones. October 31st was the second year anniversary of Atticus getting his tracheostomy. November 7th marked the second year anniversary of Atticus’s major tongue reduction surgery. I remember when Atticus first got his trach, we couldn’t hear any of his little noises – not even his cry. He has come such a long way since then. His speech is even better than your average 2.5 year old, even with his enlarged tongue. And even with a trach, you can understand what he says perfectly. He is so talkative that it is hard to imagine that we were ever concerned that he wouldn’t be able to speak intelligibly.
The little boy in the train engineer costume had an amazing Halloween. He went trick or treating and came home with a Frankenstein bag full of candy. What a welcome change from spending Halloween in 2012 in the hospital getting a trach and gearing up for a major tongue surgery.
This is also a big week for Atticus. He will have his second treatment with Dr. Richter at Arkansas Children’s Hospital at the end of this week. He will have another round of sclerotherapy (bleomycin injections) and he will get more lasering done to his lip. It will be very exciting to see the results that we get from this treatment, especially since it may take a couple treatments to see results. We do think that we see results from the first treatment though – so we will excitedly wait to see the results of the second treatment. As always, there will be swelling afterwards, so it’ll take a month or so to see the effects.
Stay tuned!
Atticus had his first treatment with Dr. Richter at Arkansas Children’s Hospital last Tuesday, September 2nd. He received his first round of bleomycin injections into his tongue, laser treatment on his lower lip and tongue, three bottom teeth extracted, tonsillectomy and adenoidectomy. Click here for some very good information regarding bleomycin injections for lymphatic malformations.
Pre-Surgery; 9/2/14
We flew out the day before, stayed in a hotel Monday night and then headed to the hospital on Tuesday morning. Surgery took about an hour. Atticus was very disoriented afterwards and needed morphine. Tuesday night he was pretty out of it. He ended up staying in the hospital until Saturday morning because his pain was very bad and he wasn’t eating or drinking much. We had to force him to drink via syringe and by Friday we were getting enough fluid into him where they felt comfortable discharging him early the following morning, which was nice for us because our flight back to Charlotte was Saturday morning.
His tongue got very swollen after surgery and probably peaked around 48 hours post surgery. Each day it is slowly going down. Atticus was prescribed a steroid to help with the swelling. We are thinking the swelling will probably last 2 to 3 weeks and then we will excitedly wait to see what the results of the bleomycin might be. We recognize that it may take several treatments.
It seems as though most of the intense pain that Atticus was feeling was probably from the tonsillectomy – so luckily he will never have to feel that again! The pain stayed pretty intense for about 5 days and now is slowly easing up. He ate really well yesterday – oatmeal, waffles, applesauce!
The next step will be more laser and bleomycin injections probably sometime in December.
And, I cannot end this blog post without expressing how impressed I am with Dr. Richter and the staff at Arkansas Children’s Hospital. I feel so confident and at ease knowing that Atticus is in such good hands. At no point did we feel like just a number, even though I’m sure Dr. Richter is insanely busy. He checked in on Atticus so much while we were there and is so compassionate and easy to talk to. You can tell he really cares and is very passionate about what he does.
View from Surgical Waiting at Arkansas Children’s Hospital
Wow! What a crazy past week it has been for us. In an effort to make sure that we are doing everything possible for Atticus, I made an appointment for him to see Dr. Gresham Richter at Arkansas Children’s Hospital’s Vascular Anomalies Center for Excellence. We have been very happy with Atticus’s current doctors at Wake Forest and we feel that he has made amazing progress under their care, but because Lymphatic/Venous Malformation is so complex and rare I always felt that at some point Atticus would need to be seen by a doctor who specializes in LM.
We have been hearing about Dr. Richter ever since Atticus was born in St. Louis. We were so excited to finally meet him and for him to meet Atticus. He had heard of Atticus before, but we were excited for him to actually see Atticus.
We drove 1,520 miles round-trip, stopping over in Nashville on our way out and our way back home. Every single mile was worth it. We spent about three hours at the Vascular Anomalies Center on Monday, July 14th, meeting with Dr. Richter, his resident, and nurses. Right away, Dr. Richter said that Atticus needs more than just interstitial laser. He started telling us about multiple treatment options, which made me so relieved because I didn’t realize that there were still so many options.
For the first time since Atticus was born, a doctor spoke to us confidently about the treatment of LM and gave us hope that the procedures would work. It is so nice to finally have answers and a positive outlook regarding the treatments.
The treatments that Atticus will have will occur mostly over the next two years. For the next two years, the treatments will be aggressive and we will need to travel to Little Rock probably every two or three months. After two years, treatments will become more spaced out.
Atticus’s first surgery in Little Rock is scheduled for September 2, 2014. He will have his tonsils and adenoids removed, as these are making the malformation worse. Dr. Richter will also extract Atticus’s front bottom teeth, as they have become damage by the pressure of the tongue, and are making the malformation worse. Atticus will also have laser treatment on his lip, and will also receive two different types of injections into his tongue.
The first type of injection is called doxycycline, which is an antibiotic. Atticus’s LM is microcystic (versus macrocystic), so a very small needle is used to inject the medicine into the microcysts. The second type of injection is called bleomycin, which has been used to treat many conditions. At very high doses, it can lead to lung damage, but the dosage that Atticus will get is very small. The point of doing two different types of injections is to see which one shrinks the tongue more. Doxycycline seems to be the safer drug, so if the results are similar, I think that would be the choice for future injections.
Future treatments will include additional laser treatments, more injections, another lip reduction, and another tongue reduction where he will take out tissue from the middle of the tongue.
Dr. Richter also feels confident that Atticus’s trach can come out a lot sooner than we were thinking. This is really exciting to us after being a trach family for almost two years now.
So this is the beginning of Atticus’s new journey. We are very excited to get things started. We know the next two years are not going to be easy, but in the end, it will all be worth it.
Atticus had his first lip reduction surgery on June 18, 2014. His plastic surgeon removed tissue from the inside of his bottom lip, tightened up some stretched out muscles, and stitched up the incision with three layers of stitches. Over time, the scar tissue may help to curl the lip upward. The focus of this lip reduction was on the inside of the lip. Atticus will need other procedures done to the outside of the bottom lip and possibly more surgeries for the inside of his lip.
Atticus spent one night in the hospital. He ate and drank with no problems after surgery. It is really amazing how well he is able to eat post-surgery. Nothing gets between Atticus and his food! Because he ate and drank so well, and was responding to the pain medication, we were able to go back to Charlotte the next day.
Of course, as with any surgery, the bottom lip is currently swollen. It usually takes a few weeks for all of the swelling to go away. Once all of the swelling is gone, we will be able to see the true results of the surgery. It may take a month or so for all of the stitches to fall out too.
Atticus had quite a bit of pain in the days following surgery, but now he is almost off pain medicine. He is pretty much back to his normal self. Every once in a while he points to his lip and says, “It hurts.” But that is usually when we are cleaning it or applying Normlgel to it.
So far the healing process is going very smoothly. Atticus is not bothering the stitches. The only things we really need to do are clean the lip with sterile medical sponges after meals, apply Bacitracin twice daily for about one week, and apply Normlgel as needed to keep the lip moist.
We are eager to see the true results in about a month!
My very clever husband, and creator of the website Charlottology, has inspired me to add a new dimension to this blog – one where I search for medical studies relating to lymphatic malformations and create summaries based on what I find. This will hopefully serve as a resource for people to quickly learn about the latest research concerning lymphatic malformations without having to actually read the lengthy medical journal articles.
I do not have any formal medical training, however, once you have a child with any type of medical condition, you tend to, over time, become an untrained expert in that area. As I learn more about lymphatic malformation, I become fascinated with it, and want to learn more – especially about treatment options and the research that has been done on various treatments. What has worked? What hasn’t? Which treatment options have the best success rates for the different types of vascular anomalies? These are all things that I have researched. I have found some really good articles from medical journals, and I want to share what I have found out with all of you. I would also like to continue learning about LM and stay up-to-date with the latest research.
This new series will also feed my love of research, data, statistics, and my new love of the medical field. I am a research/data analyst by training, and nowadays most of my work consists of SAS programming to analyze community college data (which I love!) but I do miss reading peer-reviewed research. Throughout graduate school, my research area focused on perfectionism, life stress, and sociocultural influences on body dissatisfaction – and that was fun – but my interests have certainly shifted since graduate school.
My professional interests currently consist of data analysis in higher education to inform decision-making (aka Institutional Research), which I really love, but lately I am also interested in medical data analysis. This series will also feed this budding interest of mine and seek to inform my readers about what is going on in the research world of lymphatic malformation.
I am excited to get this started…more to come soon!
Kennedy is a 16 year-old girl who was born with lymphatic malformation. She is an inspiration and through her non-profit organization, Kennedy’s Cause, she is raising awareness and funds to help improve research and treatment options for others with lymphatic malformation. The message behind her cause is ‘Let your inner beauty shine’. She was recently featured on Katie Couric’s talk show. Even Katie Couric, who I’m sure has met tons of people, says that she had never heard of lymphatic malformation before meeting Kennedy. I am so happy that Kennedy was featured on this show, first to bring awareness to LM, but also so that people can see that individuals with lymphatic malformation can and do lead happy and productive lives. Kennedy is an accomplished violinist and volleyball player. Nothing stops these kids – at an early age they learn to be strong and push through obstacles that others will never know.
I am happy that lymphatic malformation is finally getting some awareness. Click here for the video of Kennedy on Katie Couric!
There are lots of things that I love in this world, and two of them are fitness and peacefulness. I love that I have found a way to combine these two things – feeling peace of mind while doing something physically healthy for your body – YOGA! I know this is nothing new – yoga has been around for centuries and has been popular in the United States for decades now. I took my first yoga class probably around five years ago, but it didn’t truly resonate with me until more recently. I think you need to be mentally prepared to experience yoga to its fullest. When I used to do yoga before, I was in it more for the exercise and wasn’t really interested in all of the mindfulness. I have changed a lot though in the past couple years and now I am ready to embrace all that yoga has to offer – both physically and mentally. It also helps that I have found a studio that I really love. Every time I go there I feel like I get an amazing workout but that I also come away with a more positive outlook on life and a feeling that I want to strive to be a better person.
I have a somewhat long history with fitness. I remember lifting weights in my parent’s bedroom when I was 10 years old. Being physically strong was modeled for me as a child – my dad ran every day and lifted weights on a regular basis too. I’ve always been big on strength and have been weight lifting on and off for the past 6 or so years. There are so many forms of exercise that I really love, but yoga is the only one that I’ve found that gives me a complete totally body workout, including a workout for the mind and soul.
I feel so at peace especially as the class winds down and you come into shavasana, which means you lie on your back with your arms and legs spread at about 45 degree angles. Your eyes are closed and you are breathing deeply. How often do we just lay quietly and let go of everything? I love that yoga allows for this. It allows you to let go and release all of the stresses and anxieties of everyday life.
Another thing I love about yoga is that all you need is a mat, or really just a non-slip surface. All of the strength that you are building is coming right from your own body. You don’t need a gym and you don’t need 25 pound weights to build strength. * Although I am still a fan of weights as well 🙂
If you take what you learn in yoga and actually use it throughout your life, yoga should also make you a nicer person. When you find yourself rushing through the day or being negative, it’s like, wait…what did I learn in yoga this morning? I need to implement that right now! Yoga keeps me in check because, let’s face it, it is a journey to be a happy and positive person. We live in a world where people love to complain and where people often fail to see the positives and beauty of everyday life. Yoga helps to keep you accountable and pulls you out of these traps when you might be slipping down a dangerous path of negativity.
Yes, I have found a studio that I love, but I also do yoga at home when I don’t have time to do a full class at a studio. It’s important to me to practice yoga at home as well as at a studio, because if I am at home, I am modeling this for Atticus. I want him to see that its important to make time to be healthy even in this crazy busy world that we live in. As he gets older, I see him joining in and practicing with me. I mean, he’s already almost mastered downward dog.
The Grateful Mother 
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