Sunday, September 27, 2009

On the eve of if....

Lots of uncertainty and anxiety tonight. I should be working on some math homework, but I can't really concentrate on anything outside of what is potentially going down tomorrow. Robby is scheduled for out patient surgery in the morning for something unrelated to his JRA. He was born with a vascular malformation, a blood vessel tumor if you will, on his left hip. The medical stuff all started for him very early with blood draws and ultrasounds trying to determine exactly what this thing was. The possibilities ranged from the harmless to the horrifying. In the end, the pediatric dermatologist decided it was probably a rapidly involuting congenital hemangioma (RICH) and we decided to just monitor it to see what it would do. The picture here is from around July 2007 when Robby was 3 months old. You can see the RICH pretty well. The white looking area was a spot that would ulcerate and bleed. For the entire first year of his life I had to keep the area covered with dressings with Aquaphor on them which had to be changed two to three times a day. I also had to be very careful with the area because the slightest bump or scratch would cause it to bleed like crazy.
After he turned one, the RICH had involuted (shrunk) a good bit and had pretty normal looking skin over it, so it didn't required the dressings anymore. The dermatologist was happy with how it looked and said, unless any problems developed, we could just come back when he was two years old for follow up. In January the illness that eventually led to our JRA diagnosis started up. April was Robby's second birthday and I went into the dermatology appointment thinking it would be no big deal. I was rather surprised when the dermatologist started frowning while she was examining him. She told me, "I no longer feel like this is a RICH." She explained to me that some of the characteristics no longer indicated a RICH. There were still a couple of different things it could be but she wanted to do an ultrasound to get a look at what was going on under the surface. We had the ultrasound and I was relieved to see that the tumor was a lot smaller beneath the surface than what it was when we had our original ultrasounds in 2007. It also seemed to have a lot less blood flow going to it than it had originally. Dr. W. gave me two options: have a punch biopsy done or have the tumor removed. She explained he would be awake for the biopsy and they would cut a section off and give him a couple of stitches. After all of the labs and things we'd experienced over the previous months, I knew there was no way he was going to be able to be still enough to go through that procedure. I also had concerns with how any future "big gun" drugs we might have to give for the JRA would interact with this now unknown tumor. I opted for surgery which is scheduled for tomorrow morning.
Fast forward five months and here we are. I am still convinced that surgery is the right thing to do. We have already moved onto biologics (Kineret) for the JRA and I don't know what is yet to come. There is a slight wrinkle though. Wednesday we saw Dr. H (rheumatologist) and had Robby's regular labs drawn. She called me Thursday night to tell me his hemoglobin was down to 9.5 (under 10 is considered anemic) and his SED rate was up to 52--the highest it's been the whole time we've been monitoring it. Leaving aside my frustration that he's seeing his worst JRA labs ever after I've been inject him with daily medication for four weeks now, this meant the surgery now had a big question mark on it. Was he too anemic to safely go through with the procedure? Dr. H. wanted to talk to the surgeon. We discussed whether or not we should just wait. She didn't want to because she's thinking he is going to need a round of Prednisone to reign in the flare and give the Kineret a chance to work and she doesn't want to give him steroids until we can figure out what this thing on his hip is. She told me the thing I knew in the back of my head but didn't want to say out loud, "We have to consider the possibility that it's turned malignant and we don't know it. Steroids would just make it grow faster."
I spent most of Friday trying to get answers out of the folks at the surgeon's office. He finally called me back today and told me he is comfortable but it will ultimately be up to the anesthesiologist on duty and whether or not they feel he will be safe. I explained to him why I want to go through with it if everyone is in agreement and he felt we were doing the right thing. We are supposed to show up tomorrow morning but I don't know if we will actually get to have the surgery or not. If they won't do it, then I think I will push through with the punch biopsy so Dr. H. can get the answers she needs to make the call on starting Prednisone.
What decisions these are! It seems I am constantly called upon to make decisions so much bigger than me that they can almost overwhelm. If anyone would have told me a year ago that I would be chosing which major medication to treat my toddler son with, or deciding whether he was healthy enough to try to push through with a surgery--I would have thought they were crazy. When I first started dealing with this illness, there was a lot of "How do I know I'm doing the right thing?" I agonized over it almost to the point that I couldn't make a decision at all. Since then I've made a little peace as I've realized all I can do is try to learn as much as I can, surround us with the best doctors possible, always keep Robby's best interest in mind, and pray for the wisdom and discernment to make the best choice possible. That has taken me a long way so far, but I have to admit I am really scared about tomorrow. What if something happens? What if he ends up needing a blood transfusion and it makes him sick? What if the unspeakable happens? Will it be my fault? These are the things that race through my head as I wait for tomorrow.
We took Robby for a walk earlier today and I had a bit of a Yolanda Adams song stuck in my head and it was a bit comforting to me:

I don't have the right to give up /I don't have the right to give in/You're gonna bring me through/I'm gonna put my trust in you
And that's all I can do. I pray that God will keep my baby boy in His hands tomorrow. I pray for wisdom for the doctors and nurses who will care for him. I pray that this tumor is benign and harmless. And I pray that we can move on and find an answer for ending this JRA flare. My little guy is looking rather sickly and tired lately. I would love to find him some relief.

Monday, September 21, 2009

They said this would get easier....

We were told when we started the Kineret injections that it would get easier. Somehow he was supposed to get used to it and it would just become routine. Maybe it will at some point, but I can tell you three and a half weeks is not that point. It was getting easier for me to give the injections and then his fighting and struggling got worse. There was an incident where he got his arm free from CK and grabbed at the syringe. I pulled it away and he wasn't hurt, but he only got about 3/4 of his dose. I was not about to stick him again. There was also another evening where he was moving around so much that I had to stop, re swab an area, and pick a new site for injecting as CK couldn't get an adequate hold on him and still leave enough of the original target open for me to make an injection. It's not CK's fault at all...the kid is strong. I only tried holding him once and it was a major effort that was marginally successful at best. The stress of this really got to me last week and I broke down post-injection and cried off in my room where Robby couldn't see me. I was considering whether or not we should switch to methotrexate so we would only have to do this once per week. Then I felt like a crushing failure because I even considered that option when I've read the black box warnings and all we were talking about here was my own inability to suck it up. I cried and I finally got my wits about me enough to pray about it, "God, please give me what I need to take care of my son. Whether it's within me or somewhere else, please help me find what I need to do this."

The answer didn't come to me until the next morning. I decided to check into my health insurance coverage for home health nursing care. It turns out I have pretty good coverage for this. I am in the process now of getting authorization and seeing if I can get setup with a nurse to come out in the evenings and give the injections. I realize we will still need to be involved in the process and help with holding, etc.--but the idea of not going it alone feels comforting. It will be a relief to have some help until he gets old enough to understand and cooperate a little more.

I also learned last week that we were approved for coverage through the Ohio Health Department's Bureau for Children with Medical Handicaps. We were on the diagnostic program, but that is only six months and was set to run out on the 19th. We are now on the treatment program and will have to reapply for renewal every twelve months. This coverage picks up what the health insurance doesn't and means no more co pays for doctor's visits or prescriptions and no more bills for the 20% of labs and other procedures my insurance doesn't cover. I have incredibly generous health insurance benefits, but those little bits add up when dealing with a condition like JRA. I will take whatever help I can get. I also feel a little more relieved because it means we are in a better position to continue Robby's treatments if I should lose my job or something similar. Relief, relief, relief.

If you are a JRA parent, please make sure you check into these types of resources. If you aren't sure what is available where you live, reach out to your local chapter of the Arthritis Foundation and they will help you. Our local chapter is a great resource. I actually decided to start doing volunteer work with them to help me overcome some of the helplessness I was feeling in dealing with this disease. My first event was called Wine and Dine which took place on September 3rd. It was a great wine tasting event with food from local restaurants and a silent auction. I worked an auction table and I was really happy with the bids I was able to secure for the items. Here in a couple of weeks, I will attend a kick off meeting for December's Jingle Bell Run. I plan to be a team captain for the event. My goal is to recruit 20 team members and raise $2000 as a team. We'll see how we do. The volunteer work helps me to feel like I am actually doing something to help my son and other kids with JRA. I am also hoping to eventually meet some JRA parents as I think that would be great for me as well. Every time I hear about or see a teen with JRA who is living a fairly normal life, it makes it that much easier for me to hold onto some hope for my little guy. At the end of the day, hope is the best medicine.

Wednesday, September 2, 2009

Just When I Thought It Safe...

So much for injection getting easier. Tonight was supposed to be Right Arm night. The original hold CK had Robby in made his arm too tight to his body for me to get a good pinch to put the needle in so I asked him to adjust. Robby was pretty worked up and as soon as the needle went in, he tried to pull away and it popped back out. A fat drop of blood welled up and I just stood there feeling dumb. I wasn't sure what to do. I hadn't really had a chance to administer any of the medicine. I wasn't sure if I could re-inject with the same needle. In my haze, I laid the syringe down and the needle made contact with the table. Well at least that settled that...a new dose had to be drawn up. Of course now that Robby knew what was up he screamed the whole time I was prepping the new dose. I mean he really screamed--like we were beating him or something. The windows were open and I became absolutely certain someone was going to call the cops or children services or someone. I would have welcomed either one if they were willing to give him the shot...(sigh). We decided arms are just too hard and we are going to have to figure out how to get by with just thighs for awhile. At least until he quits fighting us.

I was able to inject in the right thigh with minimal fuss aside from a massive amount of crying. The sticker trick worked again to calm him down. Once he was situated and reading a book with CK, I had to leave the room. I was too shaken up. I went in my room and felt like I was going to cry but I laid down on the bed for a minute and it passed. I came back out and held Robby for a little while and read him a book. Then it was time to get ready for bed.

What an evening.