Cellular Myofibroma

 My baby had a tumor.  He had surgery to get it removed and he is okay.  It was non-cancerous.

I just thought I should get all of that info out of the way because some people might just want that. Now, here is the story:

Around late December 2023, Abuela noticed that Martin Julian had a bump on his chest above his right nipple.  I sent the doctor a picture late that night and said it was not something I noticed before.  We got an appointment 2-3 days later. 

He then referred us to get an ultrasound and this took about two weeks to schedule.  At the appointment with our pediatrician the next day, he said that radiology said it looked like a nerve sheath tumor (which is not good).  I remember hearing him say this but it did not register until I was leaving the hospital. Even when Dr. Reed said “treat him like the normal and healthy baby he is,” it did not hit me that he was anything different.  I googled what a nerve sheath tumor is and I was reading thinks like “malignant” and “neurofibrosarcoma” and “23%-69% survival rate”.  And damn, how scary is that.  This little baby who just barely lived and he could have cancer.  We were told that he would be referred to surgery and we asked for the first available appointment.  Luckily we got one the next week and met with Dr. T who was awesome.  He was not sure what it was just based on seeing it so he ordered the baby to get an MRI.  He got that a week later and that was not a fun visit.

We get to Radys the day of the MRI and everything goes well.  The morning was terrible for me and I had only minor breakdowns.  Mj had to be sedated with anesthesia and it could take an hour or so for the MRI to be completed.  Obviously we have never been through this process and I did not know what to expect but putting a three month old baby under sedation is really scary. 

I go to Starbucks before we leave because I felt like I should-I go to Starbucks a lot and it is just my thing.  I place my order in person which I hardly ever do but I was a little late and did not have time before I left.  They asked how my morning was going and it took every fiber to not break down.  How do you tell your barista that you had a shitty morning and you could not feed your baby because he is going under anesthesia and he could have cancer? You dont.  It isnt socially acceptable.  So I said my morning was great.

Back to Radys; we get there and everything overall is good.  They are running about 45 minutes behind schedule which is hard because it is not 12:15 and my baby has not eaten since 3:30am-which is a long time! My little baby who has the stomach of an egg and he cannot eat.  He cried and I cried and we cried together and it was so incredibly hard.  Finally they get us in and talk us through everything they are going to do.  Martin Julian is smiling and is just incredibly happy; the nurses and staff have to stop several times because he is just looking at them and smiling.  I give him a kiss and lay him down on the bed as the anesthesiologist puts the mask over his nose and mouth.  He isnt squirming but he is moving and his arms are reaching for something.  Slowly, after about 15-20 seconds, you see his arms get tired and they fall down.  They walk us out to the lobby and I hold Martin’s hand while I try not to cry.

We wait and they tell us he is out and good to go.  Because of his age, we need to wait 4 hours before we can go just to ensure his safety.  He eats well and is still really out of it.  After about 3/3.5 hours, he is himself again and is really happy and back to normal. We go home and all is well.

Dr. T. calls us and says that he cannot really tell what it is based on the MRI and he would like to order a CT.  The tumor seems to be attached to muscle and possibly bone and lung which would make it hard to remove.  Martin calls to schedule a CT and they get us in a few days later since his case was marked “urgent.”  Rady’s calls and said that insurance hasnt kicked in yet and it may not be covered so if we go then we will pay out of pocket cost for it which is around $3500.  We discuss it and decide that this is something that needs to get done quickly so we are going to pay whatever we need to pay because we do not want to wait.  (Luckily, insurance calls me back later that day and they cover it).  The day of the CT, Martin takes him in since he did not have to get sedated and he did really well.  It took less than 10 minutes and he could keep all of his clothes on and have a warm blanket.  Dr. T. calls us back and we have a plan to do surgery and get it out for a week later.  He said he may or may not stay overnight and that we will know the day of the surgery; a complication of the surgery would be air in his lungs which would be a reason to stay.

I felt really good about the surgery.  I knew he would be okay and that nothing bad would happen-I just had that feeling.  The nurse takes him away from us while he is still awake.  We did not get to go with him like last time while they put the mask on.  That is when I started to freak out. I didnt see the nurses badge! What if she took him?! He is so cute! But after a few minutes, I got a text message from Radys saying that his procedure would begin soon and I felt better.  While we were waiting, we went to the Ronald McDonald House for some breakfast.  There was a full kitchen filled with different items to make (eggs, soup, milk, cereal, bagels, etc) and this was provided at no cost to families who had children staying/living there and/or those who are staying for their children to be in surgery.  There are so many services that are offered that I did not know about.  Mj finished after about an hour-which was an hour sooner than we thought.  I went back quickly to feed him since he was still hungry after his sugar water they gave him and Martin joined me about 5 minutes after that.  Our baby had a small scar on his chest that he will forever wear.  He did great. The doctor told us that once he was put to sleep, he was able to easily move the tumor and it was not attached to his lungs or bones which was a great sign.  It was attached to muscle, like he thought, so he removed a small lining that has no affect on him in the long run.

Next was the hardest part-we wait.  We were told that we would hear in a week but maybe two if what he has is something rare.  A week goes by and I email the doctor and say we are okay with a telehealth visit or phone call as soon as he knows what is wrong.  A week goes by and he calls and tells me that he is not sure still and they are sending it to pathology for some more specific tests.  Almost a month goes by and we have Martin Julian’s follow up appointment scheduled for a Wednesday.  The day before the appointment he tells us that he had a cellular myofibroma and it is non-cancerous.  During his appointment, he tells me that they thought he had a sarcoma; that his tumor (or samples of it) were sent to Mayo clinic to further identify what it is.  After further testing, it is definitely not a sarcoma and he is okay and healthy.  My little baby boy should have no long-lasting effects and can continue his life as normal.

This is scary.  I did not realize how scary it was until the day of the MRI.  But, I did have good feeling.  I had a good feeling about the surgery and I had a good feeling about the results.  Maybe it was denial? I dont know.  But I knew he would be okay. I am so grateful for our doctors and nurses at Radys who made sure my son was ok; I am grateful for the quickness of everything; I am grateful for everyone who was able to watch Mateo while we took the baby to all of his appointments.  But mostly, aside from Martin Julian being okay and healthy, I am grateful for my partner through this whole thing.  Martin has been amazing and so hands on; he has been on disability leave but has never hesitated taking any additional time off or doing whatever needed to get done at whatever time to make sure that Mj got everything he needed.  I started a new job and so getting time off has not been easy, especially since all of this was happening the month I went back to work after maternity leave.  Thank you to everyone who has been with us along the way-the prayers and kind words and anything else.  

(Martin was amazing and scheduled the soonest appointments; I am not sure what he said or how he got them to agree to scheduling us so quickly but I am forever grateful and am lucky to have a partner who will fight for our kids)