Moved, New Job, and 2nd Treatment at ACH

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.

 

2 Comments

  • Jenny says:

    I stumbled upon your blog by accident while researching Dr Richter and VMs. My son was misdiagnosed in 2009 and a long winding path led us to the wonderful Dr Richter and ACH in Oct 2013. My son was 9 when he had his first laser treatment Jan of 14. Unfortunately after that procedure he was only pain free for about 6 weeks. We went back the end of May and they were much more aggressive with treatment and he has been relatively pain free since. We just returned from ACH for a check up (I live in OK about a 4 hr drive to Little Rock) and he will have the procedure again in a few weeks. My son’s is deep in the muscle of his leg so we thankfully do not have airway issues to complicate things. I just wanted to say hi – I sometimes feel very alone in this endeavor and it’s nice to run across someone that is walking a somewhat similar path. Best of luck to you and your son!

  • catk4 says:

    Hi Jenny, I am so happy that you stumbled upon my blog! I am also happy that your son finally has the correct diagnosis and that he is in the care of Dr. Richter. We are so happy that Dr. Richter is now treating Atticus, even though we have to travel a long way to get this treatment – it is well worth it! You are right that it is easy to feel alone in this, which is part of the reason that I started this blog. I am always happy to connect with other parents. And, I feel that in the future it will be very beneficial for Atticus to connect with other children who have gone through similar journeys. Keep in touch!

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