Thank you for praying for us yesterday. To say that I have a peace about the decision with Ethan's spleen would be a half-truth. Since yesterday I've felt like the wind has been knocked out of me several times. I guess I was living in denial about how I truly felt about Ethan losing his spleen. I kept telling myself and the doctors that I didn't care if he had to live his life without a spleen, my concern was more about the surgery itself. Well, when the surgeon answered our questions yesterday with such ease and clarity - saying that they have to take spleens out of babies often enough due to sickle cell and other diseases and that if everything went well, the recovery would be 5 to 7 days - I found myself asking more questions in the hope that I could talk him out of believing that the surgery wasn't more complicated than he was explaining.
I found myself dying a little on the inside as I saw Adam have such certainty right away that this was what we needed to do for Ethan, and yet my feelings were so completely confused and raw. I was almost angry that the surgeon didn't advise us against it. Deep down, I think I was assuming that was going to be the case.... that we'd hear that the surgery was very dangerous and that we shouldn't do it unless it was absolutely crucial that we did. But he didn't. He described the surgery itself to be quite easy - as far as a surgeon is concerned - much different from a mommy's perspective I assure you!
His descriptions included stuff like, Ethan won't be able to eat for about 4 days or so due to his intestines and stomach's initial inability to digest... therefore he will be "fed" through his central line with the necessary nutrients going through his veins (Though I knew we'd be faced with that scenario once we got to Boston for the transplant, I wasn't ready to deal with that just yet. I started to cry as I imagined not being able to comfort him with a bottle when he "felt" hungry and not being able to keep feeding him his "baby foods" like we've just started and that he likes so much). He will have a tube through his nose to assist with breathing and to aid in keeping him from vomiting. He will also have a drainage tube coming out of his side to ensure that the pancreas (another organ) wasn't damaged during the surgery and leaking into other areas of his body. They will have to cut into his little belly, starting around the breastbone and ending on the left side of his rib cage.
Aside from the surgery, he further advised (or reminded us) that life without a spleen will be slightly challenging. Ethan will need to be on Penicillin every day for about 7 to 10 years with a re-evaluation after that time. With the hope that the bacteria that causes pneumonia, meningitis, and the like, did not build a resistance to the antibiotic. He will also need antibiotics to prevent bacterial infections of the bloodstream (sepsis). Not to mention the "extra care" he will need to receive with the common cold and other sickness that most kids pick up from school. He further informed us that Ethan will not be able to get the rest of his vaccinations because his body would not be able to withstand them without the aid of a spleen, which of course could leave him vulnerable to those diseases.
Like I said, I had told myself that the surgery was all I was concerned about. But that's not true. My heart is broken right now, knowing what we have to do and hating that we have to do it.
After the consultation, Adam and I each had very different emotions and perspectives. He was relieved that the surgeon felt confident he could do the surgery with mild to no complications and felt that was his answer to prayer that Ethan's spleen should come out. I, on the other hand, was way more emotional about it. I fell a part. I felt upset, sad, disappointed. Everything hit me once again. The reality of our situation. When we're at home with Ethan, it's easy for me to push aside how "dark" our life is right now. But when we have to face a decision like this, the reality of just how tough of all of this really is - is like a blow to my chest... leaving me searching and desperately grasping for air. Leaving me weak. Tired. An in deep sadness. A sadness unlike any other.
After the consultation with the surgeon I called the doctor in Boston who will be doing Ethan's transplant. I left a message for her to call me back and much to my surprise, late last night, she did. I shared with her how torn I was about whether or not to remove Ethan's spleen and asked her one last time for her professional opinion. The truth is, with Ethan's type of cancer, it is so extremely rare that there is not enough evidence one way or another about a lot of the treatment he gets. However, when I cornered her for a more specific answer, she told me that if she had to say yes or no to removing it, she'd have to say yes. In her studying the situation against other JMML cases, when you do a bone marrow transplant, it's not necessary for the spleen to be removed. However, there is no such proof with a cord blood transplant. And what they do know, is that with a cord blood transplant it takes longer (over a month) for the donor's blood to begin growing in the patient's body.... and the spleen has a tendency to soak up all the new cells, thus making it much longer (and more dangerous for Ethan's life) if the spleen isn't removed in the first place. They at times make the decision in the middle of the transplant to remove the spleen if it's interfering with the transplant, but at that point the surgery is much more dangerous.
Which brings me back to what I said initially. I know what we need to do. He needs to have the spleen removed. That much I am at "peace" with. But to say that I didn't cry myself to sleep last night, or that I haven't cried several hundred tears this morning... well, it's just very hard. It's just all so very hard. I do trust the Lord. I do. But even Jesus, knowing His own power and the outcome that power would bring, wept when He learned of Lazarus....
Be patient with me, Lord. I am trying.... but this is not easy for me right now.