I don’t go on Facebook nearly as often as I used to. I am realizing that many of my ‘friends’, tend to be fair-weather ones at best. In order to keep myself from getting too wrapped up emotionally in what I consider daily rejection, I tend not to log on until I have time later in the evening. I reach out to some, and don’t get a response. Sometimes I even go as far as arguing with myself internally on whether I should even bother to comment on something, because I KNOW the other person will do what they have always done, and not do a single thing.
Last night was no different than the past few months, where I log on later and begin my nightly scroll. I stopped on a post by an adult with HLHS who had the phrase “Fontan will ultimately fail” in her post. Granted it was a post about being hopeful about new treatments around the corner, it shook me to the core to see those words. I began reading the comments and saw others comment that their Fontan was failing too. Some were young, some were in their 20’s. My own heart sank. It hit me. We aren’t done yet. We will never be done and after this, what will we do? What can be done besides wait for a new heart?
Right now, Izzie runs around and plays like a normal almost 4 year old. She will be 2 years Post-Fontan this September. She is doing exceptionally well for a child that is missing half of her heart. I know how fortunate we are and that we have time to enjoy life. But Chris and I both know that there was never an “If she needs a transplant”, there was always “She will need a transplant eventually.” To us, it was a given. We know that her right ventricle can’t do all the work indefinitely. I had never had it confirmed so bluntly before. I hadn’t seen actual evidence with others who had their Fontan 20+ years earlier.
I sat across from Melissa and looked at her. Tears filled my eyes as I expressed my sadness that this surgery will eventually stop working. She just held my hands and listened. The tears came as we sat waiting for our dinner to arrive. Wiping the tear away, I decide to read what the young woman had posted. It was an article about a new technology that could help assist the heart by mimicking the pressures necessary to keep blood flowing. I read the article and explained to her that this new technology may be an option for us. Hopeful once again, I was able to get some balance.
Tonight, someone else shared an article about a new clinical trial the Mayo Clinic is doing involving stem cells. This treatment would encourage the heart muscle to grow and become stronger. Maybe even get fibers to regenerate or heal. It would involve getting bone marrow and harvesting the cells from that, and then injecting them into the coronary arteries that feed the heart muscles. They are asking for post-fontan children and adults to participate. I sent Chris a text asking him what he thinks.
“I’m all for it.”
Once again, I hold my breath and think, this could really help her. It could also hurt like hell since it requires bone marrow extraction. Right now her function isn’t having issues. Do we wait until it becomes an issue? Or should we be proactive and go for it? We can send the email expressing our interest and take it from there. Worst thing that could happen is she isn’t able to participate. And then what?
I know you have heard me lament about people wanting to help fight cancer while there is nothing that can be done about my daughter’s condition. I feel as though she doesn’t carry the same weight as a child with cancer in people’s minds. After all, she has had her surgery so she should be fine now, right? Nothing could be further from the truth as two days in a row have gone by with her vomiting at one point. I don’t have other options because she isn’t showing signs of heart failure. She can’t have another procedure because there is none. The surgery that some have been able to have to create a 4 chambered heart is off the table for her because she is missing key components for that to work.
So what do I do? I have to rely on research that is poorly funded and not understood by many. I have to explain over and over again that surgery is not a cure and yes, she is doing great now but things can change in the blink of an eye. Up and down, up and down. Emotions and fear cause me to sound like a total jerk to people who don’t understand that I am afraid too, that like other parents with sick children, I am scared of what will happen to her if nothing new comes onto the horizon. I even get angry. Sometimes I get into the “When will her disease be important enough for its own commercial?” moments.
I am full of hope, terror, anger and love for this incredible little girl who is just pure joy. Our next big thing is seeing whether or not she has developed a peanut allergy. I wish all we had to worry about was keeping her away from peanuts. Instead, it is one more thing we may have to keep in the forefront, along with making sure she stays hydrated, that she eats, and gets enough rest. Up and down.
hopeinaheartshape 
FYI..If this response is visible on Facebook please delete it. Thanks. I understand where you are. As a mother there are so many emotions. My son’s surgery was all experimental and there are so many more options these days. I am happy for those families but we will soon deal with the limitations of what he had done. He will need his valve replaced soon (he is 33 and never expected to be doing so well at this age) The next surgery will have to take in to considerations all those things that were done in a different way. We are lucky there are new options but worry it will not work for our child. I have to believe they will. You are doing the best you can and i am very impressed at your strength and support of your child. It can be really all consuming and I do agree that noone who has not had a child with cardiac issues is capable of understanding. Keep hanging in there because you have to and because of your love for your child and you family.