Monday, August 31, 2009

It's getting easier...

The Kineret injections are getting easier as we go. Mainly, we are developing a routine which helps us all adjust to this new aspect of our lives. The rundown:

While we are preparing dinner, we lay the Kineret syringe out on the counter so it can come to room temperature. The literature says it can be at room temperature for up to twelve hours. Ours ends up being out for about two at the most. When it is time to prep the injection, one of us will take Robby into the living room and read him a book. The other will get the injection ready out of sight in the kitchen. The key is to minimize what he sees ahead of time so he has as little time to anticipate and be anxious as possible. Once we start to take him to the table he knows what is happening and starts to say "No!" and cry. It's not as bad as before though. He cries pretty loudly while he is getting the shot, but he is really interested in the Spider Man band-aid so that is step one of the distraction. We also bought a notebook with Cars characters on the cover and some stickers. Once the shot is over, he gets to pick out a sticker and put it in the notebook. Tonight he was done crying by the time the sticker was placed in the notebook. Pretty big improvement over where we started.

It is getting easier for me, too. The very first time I injected him, I felt queasy leading up to it. I felt very calm during--but as soon as I was finished I started to shake. The second time I didn't get that sick feeling before, just the shakes after. Now I am fine. Seeing him recover quickly helps. So does seeing how much the Kineret seems to be helping him already. I really feel in my heart like we are doing the right thing.

Friday, August 28, 2009

We did it!

Yesterday was the big day. My husband and I went into Children's to get our education on giving Robby the Kineret injections. I was a little surprised when the nurse told me that we would be giving him his first injection, but it made sense that she needed to see us do it to make sure we were placing it properly and that we could actually go through with it. I decided to give him the first shot. After all of the instructions and practice, I drew up the dose, CK (my husband) got Robby in the hold like the nurse instructed, and Robby started to cry a little. I counted to three and poked him with the needle. I was a little surprised at how easily it went into his skin. The only thing I need to do differently is to push the plunger down faster. I was a little slow with it (thinking the medicine might not sting as badly if I didn't push it in fast) and he started to squirm a bit which creates potential for the needle to pop out of his skin or injure him. So I will go faster next time. As soon as I set the empty syringe down, I started to shake--but I was relieved that it wasn't as bad as I thought it would be. We can do this! I know in a few short weeks it will all seem routine and not a big deal at all. I am also happy to report there is zero injection site reaction so far. All I could see this morning was a tiny pink dot where he got poked. Fingers crossed that this stays the case.

I started telling Robby on Wednesday that we were going to the doctor the next day to get a new medicine that would make his knees feel better. He was really excited. I waited until Thursday morning to tell him it was going to be a shot. He kind of frowned, but I told him it would be a little shot and he seemed OK. Last night he was talking to me about how the shot hurt and I finally decided to tell him we would have to do it every day. He was upset about it, but I reminded him that this was to make his knees better so he can walk around and play. I told him it was a little scary for me too, but we needed to be really brave for each other. He sighed a little and then smiled at me and said, "OK, mommy. I be brave." My heart ached that a two year old has to deal with these things. I am so proud of him though. He has handled everything so well. We plan to get him his own special calendar and stickers so that he can put a sticker in the box after each shot. He seems to really like the stickers they give him at the hospital, so I think this will help. Plus picking one out will give him something immediate to take his mind off of the shot he just received.

I know it has to be too soon for the medicine to be working, but he was able to walk right after waking up this morning. I think it's because he had ice packs yesterday afternoon and a bath before bedtime. I also think maybe all the talk about how this new medicine is going to make him better has him believing it is (or at least will) and he is brave enough to try even through the pain. It was kind of amusing last night--his toys were everywhere! I wasn't used to it after these days of his not being able to walk and not really playing. CK said he was happy that Robby was well enough to make a mess. I agree!

Wednesday, August 26, 2009

Why Us?

I am over the moon this morning. Last night I was feeling a lot of despair and frustration after going through a day of Robby not being able to walk. I was having trouble sleeping last night and felt like all of my coping mechanisms were broken. I finally remembered to do what I should have done in the first place--pray! I prayed for a little bit of something. One positive thing to help us get through this. That's all I needed. Well, this morning Robby was able to walk again. It's stiff and very wobbly and I can tell it hurts, but he's doing it. He was so excited! He wobbled across the living room to his toy box and he smiled at me and said, "Look, I'm doing it by myself!" Words can't explain the joy that came from those dozen or so stiff legged steps. I am so grateful. I explained to him that he has to keep trying really hard to walk even though it hurts because it will help his legs feel better. He seemed to understand and he told me, "OK, mommy. I try really hard." What a sweet boy.

On the drive to work this morning, I was thinking a lot about how things were early on and I have something I want to share. My hope is that it will help someone who is going through this. When we initially got the diagnosis, I was overcome with relief. There were moments where I feared we were dealing with something worse than JRA--something potentially terminal like leukemia. It was a huge relief to finally have a name for his illness and to learn it was "only arthritis." As the reality of living with JRA set in, and I learned more about what the long term picture might look like, relief gave way to a mixture of anger and grief. I had to mourn my previously healthy son. I had to consider the possibility that he might never be able to do certain things and that he might be in some amount of pain every day for the rest of his life. I had to accept that our new life was one of doctor's visits, blood draws, and constant vigilance. I can still remember the day Dr. H. handed me a pamphlet from the state's Bureau for Children with Medical Handicaps. My initial reaction was, "This isn't my kid!" Later that night I read through the materials and I realized this was my reality. This was my kid now. That was the first time I can remember thinking, "Why is this happening to us?"

I was angry and I wanted some explanation for why this should happen to my easy going sweet boy. Why should this happen to our family? The first phase of an answer was, "Why not us?" I came to realize that nobody deserves these things, but they happen. We aren't special or somehow immune against disaster. I finally embraced the idea that God doesn't promise life will be easy and bad things will never happen, only that we won't be alone when we go through the hard times. This got me through for a little while, but at some point it wasn't enough.

The real breakthrough came for me when I realized this was happening because I can handle it. I have overcome some really deep dark pits of adversity in my life and am as strong as they come. I also have the resources to provide the care that is needed (financial, insurance, generous leave benefits from my job, etc.). I have the ability to research and learn about my son's condition so that I can better help him. I also am a fighter and know I will be able to stand in the gap and be an advocate for my son whenever it might be needed.

I even found myself, for the first time ever, thanking God and praising Him for my experiences dealing with my own illness. For two years I've struggled with ulcerative colitis. It's pretty well under control for the time being, but I feel I have an understanding of pain, and the cyclical and unpredictable nature of chronic illness, that a lot of people who have never dealt with it first hand can't have. I know what it takes to keep living your daily life inspite of pain and disease. I know the determination that is required. I also know the courage it takes to even try. That is why I consider one of my greatest responsibilities to be teaching Robby how to live with this disease and still have as full a life as possible. I have to give him the confidence to try as hard as he can despite the pain. The doctors can give him the treatment and drugs--but it is up to me to give him the guts to deal with all of this. In the moments where my head is on straight and I can see these things clearly, I realize what an honor and privilege it is to be entrusted with this little boy who needs so much. I try to cling to this when I am in the dark moments. It's not always easy, but the light does come eventually.

Tuesday, August 25, 2009

What next?

The kineret arrived and is safely stored in the refrigerator. It turns out Robby needed to have a chest x-ray and TB test before he can start the kineret. I took him in for those this morning. The TB test needs 48 hours to develop, so we will have our injection training on Thursday morning and he will receive his first dose then. I hope with all my heart that it works well and quickly. I know it can take a month, or maybe longer, but I pray we'll see good results as quickly as possible.

"I can't walk. I can't walk." was the phrase that just about ripped my heart out this evening. Robby spent the day refusing to take more than two or three steps, if any. He would just give up and try to sit down on the floor. The pain has to be pretty great because he would start to cry and try to grab onto something as soon as I would stand him up. Also, he wouldn't even walk or stand to play with the other kids at the baby sitter's house today which definitely means he was feeling really bad. Usually he can get distracted enough with play to get around at least a little bit. My emotions are all over the place. I feel so sorry for him and upset that he has to feel like this. It is also very frustrating and draining taking care of him when he can't stand or walk. He is 34 pounds now so carrying him is no small task. It also makes all the little things like changing clothes or getting in the car complicated. I alternate between hope that the kineret will work quickly and fear that he'll be like this long term. How will I take care of him if he can't walk? I know people do it all the time, but I wasn't mentally prepared for him to be disabled to the point of impaired mobility.

It seems I keep reaching the point where I feel I can't take anymore. Then I take a deep breath, square my shoulders, and realize I have an important job to do. I soldier through with plenty of prayer and help from my husband and other family and friends to encourage me. Then something else happens and I find myself all crumpled up and back at square one again. I keep wondering what else can happen and I dread ever knowing the answer.

Monday, August 24, 2009


The kineret will be delivered tomorrow. I don't know how they did it, but the wonderful folks at Dr. H's office made this happen so fast. They really are amazing. I just need to get in touch with them this afternoon to find out when we can go in to get our instructions on giving the injections. Thank God for small miracles!

Time Marches On...

Robby was really having a rough time again this morning. He got out of bed and did the same two or three steps and then crying thing. After I got him past the initial waking up, I made him walk on his own as much as possible. I know it hurts, but I think mobility is the best thing for him right now. I did notice he was getting around more easily the more he walked, so I think I made the right choice.

I talked to the rheum nurse this morning about the prior authorization situation for the kineret. She said the doctor filled it out and they sent it to the case review unit at the insurance company on Friday. She was going to call today to follow up on it. I let her know that he is in a lot of pain and it's getting worse pretty rapidly so if this was going to take much longer I wanted to explore some other option. She seemed to think it shouldn't take long so I am willing to wait and see. I just don't feel like the little guy has a lot of time here--the pain is escalating at a really rapid pace. The way she explained it to me is this is just a paper the doctor fills out explaining why this medication is medically necessary. She seems confident it will be approved. I hope she is right. I hate this battling the insurance part of the equation.

Sunday, August 23, 2009

In the Beginning...

Only five months have passed since Robby was diagnosed with systemic onset JRA, yet sometimes it feels like we've been dealing with this disease for years now. At some point I will have to go back and recap all the events that led us here, but for now I want to focus on where we are today.

When he was diagnosed in March, Robby didn't seem to have any joint specific symptoms outside of having general aches when the fever and rash were active along with some stiffness in his hips at these times. We started treatment with Naproxen (4.2 ml twice a day). In June Dr. H mentioned concern with his knees being "puffy" but it's been hard to tell if this was due to arthritis involvement or just "baby chub." We finally decided to do an ultrasound on both knees which took place on August 10th.

All of the technicians, doctors, and nurses I've worked with at Nationwide Children's Hospital have been a wonderful godsend and this ultrasound technician was no exception. Robby cried upon entering the room--I suspect he thought he was there for labs--but some reassurance, a chance to check out the u/s wand, and a Blue's Clues video soon set him at ease. I wish I could say the same about myself. Even with my lack of education in this area, I could tell from the u/s pictures on the screen there were sizable pockets of fluid on both knees. The arthritis was active in both joints. I had no idea what it would mean for us in terms of treatment, but I knew this was not a positive direction.

Dr. H. called at 9:30 p.m. the next night to confirm what I suspected--both knees were actively involved and we needed to step up treatment. I was offered a choice between a combination of prednisone and weekly methotrexate injections or daily injections of kineret. I was devastated at the idea of having to give such a young child these powerful medications. I asked her for some time to think it over and promised to call the office the next day. I spent the rest of the evening pouring over whatever information I could find online about side effects, success rates, and patient testimonies. I was really fearful of the methotrexate and prednisone side effects, so I called the next day and asked that Robby be started on kineret.

On August 14th we set off for a week's vacation in Nags Head, NC. It was so nice to get away even though I spent more time that week than I care to admit to worrying about starting the injections when we returned home. There were a couple of evenings throughout the week when Robby would feel warm and I would find his temperature was around 100. A dose of Tylenol seemed to take care of things and overall he seemed to be in good spirits. He really enjoyed the sand and the ocean and it was nice to see him playing so much and having a good time. We started the trip home on Friday August 21st which marked the beginning of the decline Robby is currently in.

We broke the car ride up over two days for both trips to try to minimize the amount of continuous sitting in the car seat. Just before stopping for the evening Friday night, Robby was very whiny in the car seat with a lot of squirming and complaining that his "butt hurt" (meaning his hips). He seemed to perk up a bit in the hotel room and enjoyed sitting on the big beds and watching television. Throughout the night though I woke up to him whimpering or crying. A couple of times he actually woke up crying for me and I had to pat him and sit with him to get him back to sleep. I wasn't sure if he was in pain or if it was just a matter of sleeping in a strange place. The next morning he seemed to be okay except for being very clingy and some whining.

During the second day's car ride, he became uncomfortable much more quickly. We made some extra stops to let him out of the car seat and I noticed he was reluctant to walk much at all and wanted carried most of the time. By the time we made it home, he was noticeably limping and seemed very uncomfortable/moody and clingy. He did not want to walk much at all and his knees were looking larger and felt warm to the touch. I decided to try the heating pad and it seemed to calm him and provide some relief. During the night I heard more whimpering and crying from him even though he was sleeping in his own familiar bed. I was beginning to believe he was experiencing enough pain during the night that it was disturbing his sleep.

This morning when he woke up I got him out of bed and had him stand up on the floor. He took about two wobbly steps and burst into tears with his arms up for me to carry him. This went on for the first couple of hours of the day and he remained somewhat reluctant to walk unless he was really distracted with playing. We went through a similar cycle after his nap and again in the evening. He finally asked for the heating pad which really surprised me. Perhaps it does help relieve the worst of the pain? At bedtime he tried to lay down in his usual position on his stomach with his head to the side and each time he did he would cry and pick it back up telling me his head hurt. I took his temperature and it was 101 so I gave him some Tylenol and had him try laying on his back. That seemed more comfortable and he was able to fall asleep.

I am at a loss at this point. He seems to be declining rapidly with more and more pain as each day passes. To add to my worry--I received a call on Friday from the pharmacy company advising they need prior authorization for the kineret. They sent forms to Dr. H's office. I have no idea what this means. She warned me that the insurance company might not want to cover the kineret because it wasn't FDA approved for children yet and he hadn't failed at least one second line therapy (like mtx). I have to call the office tomorrow morning to talk over options as I'm not comfortable letting him go on like this while they sort out the red tape. He needs some relief as quickly as possible. I can't stand seeing him in pain like this and it scares me when I let myself wonder how much of this damage might be permanent.