I remember a ride I once went on. It was one of those wooden roller coasters. If memory serves correctly, it was at Knotts Berry Farm in California. It was called The Ghost Rider. This was before Lexi & Gary. McGuire was just a baby. I never have been a big fan of rides. They always leave me feeling nauseous and in pain. How is that fun? This one was particularly good at delivering physical punishment to your body. I remember closing my eyes tightly almost the entire time. I remember screaming at the top of my lungs as it threw me around, twisting and turning, dropping and rolling. I took a few shots to the gut from the "safety bar". As the ride came to a stop, I went to exit. My hands were holding on so tight, I could not straighten them. It actually hurt to try and open my hand. The only fun part is watching the second part of my family enter encouraging them to go, it's really not so bad I say. Knowing there fate, and looking forward to their reactions. I would still recommend it to anyone who hasn't rode the Ghost Rider. How could I? That is just plain mean of me. Your right, it is. But here is what it does for you as well. It gets you in touch with what it is like to experience the up and downs of situations that are not under your control. To be able to physically relate to human emotions and what is thrown at us. Sure you could say well I see it has a ride that hurts you unnecessarily, you can do without. But knowing I walked off that ride and I am here today and can relate that experience to my life is pretty useful.
We had our second dose of Rituxan this weekend. We had the opportunity to check in with one of our doctors we hadn't seen in awhile. I was looking forward to her prospective. When we checked in on Friday, Gary was a good, but red. She did his examination and we chatted. I told her about stomach pain the is everyday with diarrhea. We had attributed it the tacrolimus medication. She asked about maybe having a diary or gluten intolerance. Problem is the tummy pain and poopies all started when that medication did. I asked about his thumb nail. It has been red and inflammed for months. The nail is started to look bumpy like it could be growing a fungus. Very strange. Overall she had no outward concerns out of the usual. She asked me if how the calcium deposits were looking. I thought they looked the same but while examining I had forget to mention I thought there may be a new one or a series of them on the joint of his elbow. I apologized for not remembering that when she intially asked me. To be honest its hard to know if they are new or not because there are so many. It is becoming difficult to keep track of them. Gary has one that is coming up under the skin on the back of his hip. She measured it. It is tender to touch. Gary cuticles are not looking so great either. He has one finger that looks like it is scabbing again. That takes me right back to the beginning of his diagnosis.
We decided in clinic to lower the steroid dose through the IV before the Rituxan. I think it helped a lot with the homocidal tendencies. We were put in the same room as we had last week. I think they do it on purpose. I begged once again for a room with a view. WE JUST WANTED TO SEE THE CRANKY! They are constructing the addition to the hospital so there is a lot of exciting stuff going on outside that window a four year boy would love and be distracted by. But he is not the only four year old boy. Fine. At least our roommate was not the same one from 2 weeks ago. He was very quiet. We had the same doctors too. Not sure what he was diagnosed with but they were working to shut off his immune system as well. I am sure our review by them would not be the same. As soon as the Rituxan started flowing through his body, his personality and character changed. A look comes over him and Gary goes away for awhile. He is replaced with a not so pleasant character who's main goal is to hurl insults at this parents. They had to listen to, "I hate you Mom." "Your a dumb pig Mom." "Mom, you shut up." "Mad at you so bad wight now Mom." *LOL I am sorry, I know the normal parent would pretty much be shocked but I just can't help but giggle. I try not to let him talk to me like that but he is just express how it feels. We just have a Twist in Translation is all.
Poor buddy. 5 times to get an IV started. He is doing better with talking about it. Although he still tries to make himself throw up. This time though, he told the nurses over and over again, he hated this. He was really saying he hated them but we translated that to he hated what was being done. There is complete truth in that.
Our nurse rocked the house this time! Very much appreciated her diligence. She got everything going right away. It was awesome. We did not even start Rituxan until almost 7 last week. Rituxan was hung and going by 5! Our nurse who discharged us the next morning had everything ready to go by the time rounds came. Our doctors said as soon as we woke up, to page them and they would come right over and get us out of there. Well, it didn't end up happening like that. After they saw the labs, it was time to talk.
Ugghh. After the labs came back, and they looked them over, everyone is starting to get a little concerned. She apologized for taking a little longer but she need to go over where we have been and where we are going and make some changes. And she did. I think at one point I did a blog about the great taper. I can hardly believe we are headed in the opposite direction. She said all his inflammation markers are up. She explained she would like to increase medications. She looked over at him and asked if the steroids always had that effect on him. I said yes, its like throwing baking soda on a fire in a oven. Back UP on steroids. We went from 1ml to 4ml. We have been paddling in the 1ml canoe for months and months now. I remember when we tried to go completely off and it was a no go. She increased his cell cept dose from 2.1 to 2.25. A smidge. I asked about methotrexate. We increased that from .7 to .75. Another smidge. She gave me other things to think about like adding Cytoxan back in with Rituxan treatments. I think someone just reached into my chest and ripped a part of my heart out. It physically hurts. This disease hurts my feelings.
The doctor went on to say she just wonders about everything with Gary. She said they talk about Gary quite often. They are having trouble understanding why things are going the way they are. She said he is one of there harder cases. She expressed the "what if" factor to me. Giving me a glimpse of her own humanity. She asks herself, "should I have started Cytoxan right away, as soon as you were diagnosed." I reminded her that is was only 3 weeks after diagnosis we crossed that bridge. Not one of us could have known he would go down that hard. I told her Gary has clearly proven he has a moderate to SEVERE case of JDM. Not light, not mild, moderately severe.
When I first get all this information, it never hits me right away. I am level, focusing on the information the best I can in a logical manner. I have too. Then when I am alone, it hits. I cry. I was thinking about perspectives. The perspective of at least he is alive, or look how far he has come, or we are lucky to have the care we do. But you know what~ that doesn't take away the pain. It soothes it to an extent. Sure, there are mothers that have walked there babies hand in hand to heaven, and had to turn back to earth. But you don't think that door is there in that room, hiding in the darkness. A possibility. Yes, I have no idea what it is like to have my child die. I mean that is huge. The imagination of that pain is more than I can put my arms around. However, I don't think that should take away my pain or validation or take away from my situation at all. Hearing, "think about starting Cytoxan again", puts another notch on that hidden door in the darkness. It is similar to hearing a Mom talk about a healthy child having difficulties with potty training or behavior problems or normal things. I want to think, just be thankful he or she is not on steroids. My pain should not take away from there pain or concerns of there normal healthy child. They deserve the validation and the acknowledgement, just at that perspective. Perspective is a great coping tool, but not a solution. I think it is somewhat unhealthy for your heart and soul as a mother to completely lean on that all that time. "Well at least he is not in the ICU or something terrible like that". That helps a lot, but in the process of everything, I still am sad, and I still hurt, and I still need to talk about it. I am so sorry to ramble on about that. I just get tired of trying to down play what we go through.
Done with that.
So other fun things we get to think about. She possibly wants to move the pamidronate infusions to once a month, instead of every three months. Last time they said lets think about it, we were being scheduled. So I am preparing for that. I am learning there language means different things sometimes. She also said to me three times. If for some reason you need to come in before your next appointment. Like she expect we would need to be seen before our next scheduled appointment. It struck me not odd but maybe more concerned. She wants me to make sure I advocate. She wanted his MMF levels checked. She had no idea you could even do that but apparently you can check if the cell cept levels are registering in his blood? We knew you could get a tacrolimus level, but not a MMF (cell cept level). She just wants me to make sure I push to have it done in case it gets pushed off with everything else going on with him. Hopefully notes will be passed on properly. The nurse called while I was typing so it was nice to talk to her about everything that was talked about. She said, *wow, you went over a lot of things didn't you.* I was curious about if they rheumatologists ever disagree with each other about treatments. The nurse eluded to the fact that sure, but with Gary, she is sure our main doctor will agree. Her notes said she thought he maybe having a mild flare. So with labs headed in the direction they are, its confirming all that.
So in review, will we need to start cytoxan again, along with Rituxan? Will they move the pamidronate infusions to monthly? How long will be on this increase of steroids? When will his labs start heading back down? I will ask Gary and get back to you. I wish a crystal ball would work but God knows so that is good enough for me.