- 6 years ago
- Wedding: September 2013
October 2010 will undoubtedly go down in history as the worst month in my life. FI’s grandfather passed away on 10/5. Fiance moved in with his grandparents in 2001 to help them around with house, etc, while his grandfather’s health slowly declined. I had the privilege of knowing this man, who from day 1 treated me as if I was his own granddaughter. He was amazing and Fiance and him were so close – he was the cornerstone of the family, and they took a major hit when he passed.
Two days later I got a call that they had found my Aunt dead in her apartment. She struggled with severe depression for a very long time. Her husband has died in August and she just didn’t have the will to live any longer. They found her in her bed, with an empty bottle of pills.
That Friday was Pop’s funeral. That Sunday we attended FBIL’s first college lacrosse tournament. Future Brother-In-Law was an avid and amazing lax player in high school and he was more than excited to go out on the field with his team. We even got to watch his first college goal! It was amazing and everyone was so proud! He was 18, getting great grades in his first semester of college, making long-lasting bonds with his new lax buddies, had a baby on the way (yes at 18 – everyone just made the best of everything as opposed to dwelling on the possible negatives). He had everything going for him and the world at his fingertips.
We noticed when he came off the field between games that he had a LOT of bruises. And yes, it’s lax – but these were dark pink/purple bruises that showed up immediately. But we just figured he must have got hit hard – after all, this wasn’t a high school game – it was college.
The following Friday Future Brother-In-Law woke up coughing up blood and covered in tiny red spots, head to toe. After going to the doctor, then the local hospital and being taken by ambulance to CHOP (Children’s Hospital of Pennsylvania), dozens of tests and about a week Future Brother-In-Law was officially diagnosed with Aplastic Anemia.
Aplastic Anemia is a very rare blood disease in which your immune system attacks and kills your stem cells. No one knows why. It’s completely random. It’s not genetic, it’s not something you can catch – it just happens. Your stem cells are the cells in your bone marrow that create all of your other blood cells – red, white and platelet cells. Future Brother-In-Law had no white cells (which fight infection), very, very low red cells, and practically no platelets (which help with clotting).
After a round of very aggressive, nasty drug treatment (whose side effects included convulsions and extreme pain, just to name two) he was released from the hospital to spend some time at home for the holidays. His son, Riley, was born on 1/3/11 and while Future Brother-In-Law was only a pale shade of his real self, it was amazing to see him interact with his new baby and his baby’s mother.
Shortly after he went back to CHOP for a second round of the drug treatments. A few months later, after it was confirmed that the drugs were not helping, the doctors decided that his best option was a bone marrow transplant.
They found a match very quickly and had the transplant in June. (side note: the tournament that he was participating in was for the HeadStrong Foundation – and at the tournament they actually had a bone marrow registry event – weird, right?). After a few (mostly minor compared to everything else, but including having black mold on his lungs – which is basically a death sentence in itself) complications from the transplant, FBIL’s blood levels seems to be keeping and they allowed him to come home (with the caveat that he had to go back once a week for testing and transfusions).
Everything seemed to be going well. Until September 22nd. Future Brother-In-Law woke up with a fever and a very sore upper back. Per the terms of his release, he had to go back to CHOP immediately if he developed a fever. He has been in the ICU ever since. They determined that he has a bacterial infection (legionella – which is the cause of Legionnaires’ disease) on his left lung. His breathing got so bad that they put him on a breathing tube, despite the possibility of him never being able to come off of it. He was miserable because he couldn’t talk or move, so they decided to go perform a tracheotomy. In the past few weeks his breathing has improved some and he is even able to spend time off of the machine, breathing on his own. They have also lowered his meds, so he is more alert and in a close-to-normal state of mind.
We had a meeting with his doctors today. The antibiotics have not been successful in killing the bacteria on his lung. A test last week confirmed that there is no blood flow or oxygen getting to this lung. His left lung has become completely necrotic and infected and the doctors have no hope that it will ever recover. They also believe that the secondary infections and fevers that he has been having are because of this dead, infected tissue in his body. The only option they now see is removing the dead lung.
The doctors did not seem confident in the least that this would help. It would be a major surgery. It is not a common surgery, nor a surgery that these doctors have much experience with. There is major blood loss associated with it and his levels have not been holding like they were before. There are a slew of possible complications and it would actually have to be more than one operation going on at the same time because of the way that they’d want to seal up the end of the bronchial tube on the side where the lung was removed. There’s the possibility that his organs will shift over to try and fill that open space in his chest cavity. And, of course, all of these possible complications are assuming he makes it through the surgery at all.
So I sit here, thinking about the shell of a person that my Future Brother-In-Law is right now. He’s lost all of his muscle mass. His skin is peeling head to toe. He has to wear a diaper because he cannot get up to go to the bathroom. He is 19 years old, with a 10 month old son who, from the sound of it, he will not get to watch grow up. The doctors always had hope in their voices before. Today I did not hear once ounce of hope in their voices. Their faces seemed to say it all when they walked in the door. And now this formerly vibrant, athletic, funny young man has to decide whether or not he wants to go through yet another procedure with an uncertain outcome.
I have said in previous posts that Fiance and I were pushing the wedding out to 2013 so Future Brother-In-Law would be his Bridesmaid or Best Man. Now it doesn’t even seem like he’s going to be around then. How am I supposed to be excited about being engaged and planning a wedding when this child is going through this? Why would this even happen? There are horrible, evil people in this world who get to go on living their lives while Future Brother-In-Law suffers and then suffers some more. I feel so guilty thinking about centerpieces and dresses and starting a new life with Fiance.
And Fiance is such a mess too. I try to be strong for him, but today hit me really hard. It feels good just to write this and get it all out. I could talk to my friends and family about this, and I will, but it’s late and I have off tomorrow and they’re all sleeping – and I just had to get it all out.
If you’ve actually read all of this, thanks for listening.