“It might be the smallest of things that makes you crack” I remember when my cousin said these words or something along this line to me about this whole experience. I remember wondering if that would happen… I remember thinking so far so good and although I have my moments, I think I have been very focused and very determined. All that changed during a little X-Ray and I realized that would be my “cracking” moment … a very small one where this whole disease and what Eli is going through seemed to come crashing down on me.
Over the past few years my relationship with Eli has changed so much. He went from the child that I cried about A LOT, screamed about A LOT and wondered about A LOT to this child who loved to snuggle, loved to laugh and loved to think of others. It was such an awesome transformation over the last few years and I really felt that the two of us had turned this awesome corner with our relationship. Ahhh ..he would not be my “devil” child forever …what a relief I thought.
After MLD reared it’s ugly head and we went through everything we did to get to Milan I had time to think of Eli and how amazing he has been this whole journey so far. I had time to really appreciate how strong and brave of a young boy he was and is …time to wonder if he is here teaching so many of us lessons that we might not have otherwise learned. I have become more protective than normal and have tried to be as gentle as I can with him emotionally about everything that he is going through. I have learned to have more patience than I EVER thought I had. I have also learned that sometimes you just can’t make it better no matter what jokes you tell, what dance you dance or how many times you let him beat you up. I don’t like sugar coating things for him or not telling him the truth…he has known the cold hard facts about this treatment, what will transpire and how long we will be living in the “box”. He knows about his 3, 6, 9 & 12 month checkup but most importantly he knows I will be right by his side for it all.
Eli’s hospital stay started very uneventful and after we learned all the rules to keep him safe and germ free we were ready to get things started. Basically what Eli had (gene therapy)is equalivelent to a bone marrow transplant (yet using his own cells) so the same rules apply. Change your clothes before entering the room, (there is a changing/locker room…anything that you bring into the room has to be in a plastic bag and spray cleaned with disinfectant. No paper products at all or cloth bags…really anything that can collect dust/germs that can’t be spray cleaned. There is a closet for all of our belongings and food from home which has to be unopened all pre- packaged food. There is a little fridge and a pull out bed for whoever stays with him. It is a great room all things considered. The first few days were very challenging because he had his lumbar puncture and his bone marrow harvest and he was very sore after he woke up. This was followed by chemo which started a few hours later. On a side note I remember watching that first infusion going in and knowing all the harmful toxins in there and for a second I still could not believe that this was our life. He tolerated the first chemo well and it was a two hour infusion. Four hours after it ended the next one began. (14 all together) I think with every dose there came another worry…”will this forever damage his organs, will he be sick, I can’t believe he will be bald soon” and of course once in a while you can’t help but wonder “why my kids” That feeling doesn’t come often because no one is immune from anything in the world we live in and I know that. The anti-seizure drugs were the worst…OMG …loving little Eli was now saying “I hate you” “I don’t want you to be my mom” “I just want to die” He told Hut he wanted to break his arms and legs…I have to admit …this was the toughest time for me. He would look at you like you did not even know him and start yelling at you. Thank goodness they lowered his dose and my Sunday he was totally off and Monday he seemed to be himself again. PHEW….what a long week!
It has been so nice having company from home. Michele, now Margie…next week my cousin followed by my brother Rick or sister in law then Holli in early July. It is not only great for us but Eli loves to switch up as everyone brings something different to the room. We are so grateful for everyone who is doing this for us!!! We spend most of the time playing games on his I pad and watching movies. It is so hard to look out the window and see the beautiful weather knowing he will be in here most of the summer. I try to keep the blinds closed a lot so he is not wishing he was outside. I think it will be easier with Ella during the colder winter months because we will not be missing anything fun! I found a bowling game that we can clean so I bought that for him and it is good for his muscles. We throw the ball and kick it too. Not to mention throwing the ball and soft pins at Federica the other day. She is just one of the awesome nurses that we have here that loves Eli (or Thomas as they call him…his middle name) just yesterday I found him a plastic magna doodle so we can play hangman and he can practice his writing. (He is thrilled…NOT) The Doctors and Nurses are great and so many speak English…they don’t think it’s very good but I do. They visit Eli when they are not his nurse, they teach him how to play candy crush and they take great care of him! They are in for it with Ella…LOL!
Eli has been doing great but this week was having a lot of back pain. My gut thought it was from doing too much and his back was probably sore from the bone marrow harvest but he was screaming at some points and they needed to make sure he was ok. They wanted to do an X-ray so he got all wrapped up since he had to leave his room and away we went down stairs. Now this kid has been put through the ringer and remember I said how protective I feel right now so when we got to x-ray I never thought this would be the moment I would lose it. I mean it’s an X-Ray…big deal right? As I laid him on the table the two techs were in the room with us. The one came right over to him and just very quickly pulled his pants down to expose his private area. Now I know they had to do this but as he was laying there and the tech had to put tape across his scrotum to protect him Eli just looked at me. I am sure he could not possibly understand why they were doing this and why he was naked. I am emotional just thinking about it. So there he is my precious baby boy staring at his Mommy while he is laying there naked and I was fighting back the tears. All I could think of is how much he has gone through and how much more he will have to go through, how strong he is, how brave he is and how it will be my goal for as long as I am alive to make him happy, to make him smile and bring joy & laughter into his life. After the X-ray I came back up to the room and went to the bathroom for the next half an hour to cry. All these emotions of what these kids have to go through hit me like a ton of bricks. I was heartbroken and for the rest of the night I allowed myself to feel angry, sad and lose my focus just temporarily so I could feel sorry for my babies.
Maybe, just maybe this journey will help another family, maybe it will bring MLD gene therapy to the USA (Where it should have already been). I don’t know all the maybes that might come of this but I do know that MLD has made me a different person…I can’t look back for the old me anymore because she is gone. I think when you go through tough times it may not necessarily change you as much as reveal who you are and who you were meant to be.