Saturday, June 28, 2008

New knee picture.

Finally got some batteries into the camera. I just took this new picture of Jacob's knee today. As you can see the swelling is way down. The knee cap is showing at the top as well as the bottom in the left knee. The knee itself still appears larger because of the boney overgrowth form the arthritis. I think the left leg is still a little longer than the right too. This happens as the body tries to compensate from the inflammation. The joint becomes overactive in it's growth. Supposedly this should even out. It did last time after he had gone into remission.
It will take time though.

Friday, June 27, 2008

First full week of summer vacation! I have to say it has been so nice to not have to do all the school stuff. The kids have been playing outside, staying up late and sleeping in later in the morning.

Jacob has been doing very well joint wise. His knee looks great! He is outside riding his big wheel and running around like a kid again. If you watch him when he bends down to color with chalk or something else he still will not put that knee down though. I am not sure if it is phychological. He seems like he is going into a "medicated remission". It is amazing what a group of drugs can do to a very swollen knee. He would not be considered in a remission though, until his eyes show no inflammation. Either way I am just happy to see him acting "normal" again.

I just wanted to mention that my cousin Ed passed away this week at 33 years old. Eddie fought a brave 2 1/2 years battle with cancer. I am asking anyone who reads this blog to say a quick prayer for him, his fiancee Jessica and his Mom and Dad. He was an only child who was a treasure to his parents. Thank you.

Saturday, June 21, 2008

Jacob's uveitis and JRA journey

Friday, June 20, 2008

School is over and the first day of summer is here!

The last morning of packing up school bags and looking for lunch money. Well, at least for a little while. The day was especially sad for Jacob today. The first thing he even said this morning was that he was going to miss his teacher terribly. I was so glad he was feeling better so he could make it into school. I was able to walk him up to his classroom. It was very sad saying good bye to Mrs. Corbett. She said she happened to read his blog last night before I gave her the card. OOps.. I should of waited to post that! It was nice to be able to thank her personally though.
Before I left the school this morning I was able to talk to the school nurse, Ann. Ann has been a blessing through this entire ordeal. We are so lucky to have her in the school. While Jacob was on the eye drops she kept schedule of the times he needed them in school. She was such a big help when he came back to school in March after his knee surgery. He had physical and mental challenges after the surgery. She kept right on top of his condition. While we were talking today about Jacob's new medication, Humira, I had told her about the difficult time he had with the injection. I told her how I will be the one to do the injection at home now. She actually offered to come over and do it for us! I may take her up on it. At least for the first one at home. Thank you Ann!

So far so good with the Humira. Jacob had his Methotrexate tonight also. It has been nice to stop the indocin (anti-inflammatory). We were able to stop that when the Humira was started. Yay 2 less pills a day! Hopefully the stomach bug or what ever it is is completely gone. I can't even imagine how bad his immune system is suppressed now with both of those meds together. Scary! It is not a good feeling giving your baby thes toxic meds!

Thursday, June 19, 2008

Tomorrow is the last day of school

Tomorrow, Friday June 20th marks the end of third grade for Jacob. It is with happiness and sadness that he is moving on to fourth grade. This year has been such a difficult one for him. Juvenile arthritis is such a challenge for any kid, especially a child who is going through such an ordeal. Every morning over the last six months or so Jacob has gone through ups and downs of joint swelling, morning stiffness and the eye issues. Some how everyday for the most part he was able to get to school on time. It is such a hard thing when you are nine and have to hurry out the door and your knee won't work properly. Or you are trying to rush to get down a handful of pills. Or sit still for the eye drops that you can't stand having to put in. By the time you get out the door your stomach feels terrible and your just plain exhausted from the disease itself or the tiredness the medications you are on give. Paying attention has always been so difficult for Jacob and the pile of medications he was on made it so much worse. All of these issues and he still was able to do his best in school. The reason for this was that Jacob had one of the best teachers he could ever have. Jacob's teacher's name was Mrs. Corbett. She is one of the most caring dedicated teachers I have ever met.(there have been a few of these in the past that I will never forget:)) Her patience and eagerness to help and learn about everything surrounding Jacob was beyond exceptional. I have decided to share what I wrote in her card that he is giving her tomorrow:

Dear Mrs. Corbett,
It is so hard to believe this year is over! Time has flown by. This year turned out to be truly challenging. I am just so grateful that you were the one to help Jacob through it all. Everyday brought new challenges, emotionally and physically for him. One less worry in all of this was knowing that he was in good hands all day with you. You always made yourself available to talk, listen and care when needed. Juvenile arthritis can have many challenges. You always tried to educate yourself on everything he was experiencing to make it easier on him physically and mentally. His comfort was always top priority over anything else. I appreciated that fully. Jacob knows that you have such a big heart and he has increasingly grown so close to you. He talks about you all the time! He is going to miss you immensely. He is leaving third grade with his big smile and his head held high. I don't know that he could of gotten through this year without you. I can only hope that he has more teachers as caring as you. You have made a huge difference in his life. Thank you from the bottom of my heart for everything. We will miss you!


Thank you again Mrs. Corbett!

Day is getting better

Wow what a crazy day! After Jacob had thrown up this morning he fell back to sleep about 8:30.
He was out like a light. I woke him at 1:30. He said when he woke he felt much better! While I wasn't looking he ran off and ate some cookies in the kitchen. He was still hungry and he asked for macaroni for lunch. He devoured an entire bowl. Since he woke at 1:30 he has been completely fine! No pain or throwing up. He is outside playing. If this was a bug then it was a quick one! So I am not completely sure that it is a bug or if it is from the Humira. If the tiredness is from the Humira that is crazy! I guess I will find out in two weeks when he is due for the next injection.

Bad Day!

Jacob woke this morning at about 4AM with severe stomach pain. He couldn't fall asleep because of the pain. By 8 AM we were on the way out the door and he vomitted outside the car. So back in we came. I was very nervous because he had been completely fine last night. All I could think of was the Humira. I paged the rheumatologist and told him what was happening. He didn't think it was a side effect of the Humira. I called the school to report him absent and spoke to the nurse she said there were a few kids sent home with stomach issues. I am thinking this may be a virus. He is having so much pain though. He hasn't left the bed since we came back in the house. I spoke to the ped. doctor also and they said just wait it out. This has been a very long, exhausting week! One more day of school for the kids. I am hoping he doesn't miss his last day.

Wednesday, June 18, 2008

Humira treatment begins

I am very excited to say the new medication that Jacob has been put on has been approved by our health Insurance! The medication costs an unbelievable $1800.00! Our copay is only $6.00! The medication was over nighted and delivered yesterday. Today was the first injection. I had to dismiss Jacob from school today a little early because the pediatrician's office had to do the first injection. Jacob was very nervous to do the injection. He was fine until we pulled into the parking lot. It took a while to get him out of the car. When he finally got out of the car he refused to go into the office. I went in to let them know I couldn't get him to come in. A nurse at the office named Mary came out to help. What a wonderful, caring nurse! She sat outside talking to him for a while and even told him if he was more comfortable he could have it in the car or on the bench. Jacob was still crying and upset. She left me alone with him and I finally convinced him to go into the office. Mary gave him a hug and said she would be very careful. She put on the lidocaine that I brought. Jacob finally gave in and let her do the injection. It stung but he did it!! He and I were very relieved. She gave him a high five and he said thank you very much! So he said it wasn't too bad. Now in two more weeks I have to do the next injection at home. I don't know how that will go. HE says he will be okay with it. Mary told us if we wanted to she could do it for us at the office again. I may take her up on it.

As far as the joints.. Jacob is still limping with the knee issues. He has also complained about his ankles hurting badly. He is walking a little funny. I am hoping for a miracle that the humira will help this too. Four more weeks from today to see the eye doctor.

Wednesday, June 11, 2008

New medication: A man has to be a man about it..or a boy

Jacob had his appointment at the rheumatologist today. What a long day it was. We left for Boston at noon and got home about 5:30 with all of the traffic!

Dr. Lopez the rheumatologist spoke with Dr. Foster this morning before we came. They decided that Humira would be the next option. I kind of figured that would be the route they were going to go. Humira is a drug that is a Biologic response modifier. It is the next step on the ladder to treat aggressive uveitis. This medication is given in a injection every other week. I am very nervous about starting this medication because the side effects are very scary!! One of the side effects listed on this is lymphoma! This drug along with the MTX are both immunesuppresants.

The rest of the visit went well. Jacob's knee is still improving. Still no cortisone recommendation. Jake also had bloodwork, a TB test and a chest xray to prepare for the new medication. The TB test was a little difficult for him to do. It took about 1/2 hours to convince him to do it. He was crying his heart out! After that was the xray and then the bloodwork. He really surprised us with the bloodwork. He did great and no tears for that!

On the ride home I gave Jacob the pamplet on the medication to read. He was reading it and said why is it talking about injections and nurses. So I told him that he was going to need injections every other week for this medication. He didn't look too happy. I let him think about it for a while and asked him again later what he thought about it. He said he was okay with it. He told me a man's got to be a man about it! I said to him that the shot will hurt he said he can handle it.(I have heard that the shot is extremely painful!) This poor kid has grown so much in the last six months. I am so proud of him. He even said today, mom it could be worse.

So the next step is getting the medication. It has to get approval from the insurance. Humira actually hasn't been approved for uveitis. It has been only approved for severe rheumatoid arthritis in adults and polyarticular JRA. (Jacob is pauciarticular-less than four joints involved) It has shown to be effective in treating uveitis though. I am hoping the insurance doesn't give us any trouble. I think the drug is close to $2000.00 a month. YIKES!!!!

Once we get the drug in hand. We have to go to the pedi. to have the first shot administered. He will have to sit there for about 20 minutes to make sure there isn't an allergic reaction. I am hoping by Monday we can have it done.

Dr. Foster wants to see us back in 4 weeks, to see if the drug helped. Then we see the rheumatologist to adjust the drugs if necessary. So the current meds will be the methotrexate and humira. We will be able to stop the indocin. Yay for that!

Sunday, June 8, 2008

Enjoying a summer day!

Friday, June 6, 2008

Wildman Daniel after he enjoyed his icecream

Can you see the uveitis?

So do you see it? The uveitis I mean.Look into those big beautiful blue eyes.They are the most beautiful eyes. I am not quite sure who he got them from but not Mom or Dad we both have brown eyes. Possibly Grandma or Pepere. You don't see it do you? That is because the uveitis is invisable! There are no signs. Pretty scary for a disease is the third leading cause of blindness in this world. Over the past couple of days it has been sinking in how deep we are into this juvenile arthritis thing.
How is it possible that he has JRA? How is it that he has now gotten uveitis? Uveitis is so rare that only about 38 people out of 100,000 have it. Out of those 38 10% are children and even less than that are boys! So why does Jacob have it?

I will never know the answer to those questions. I guess there has to be someone in those statistics. Well, we are here and we now begin the fight to save his vision. It is a very scary thought that 10% of kids will go blind with this disease despite treatment. Despite those odds I have faith that this will not happen to him. We are seeing the top doctor for uveitis in the country. I am very unsure where this journey is going to take us. I do know that we are possibly in it for quite a while.
Next week we see the rheumatologist to discuss what treatment is next. More medications. Which ones I don't know.

Wednesday, June 4, 2008

Cells present again!

We had an appointment with Dr Foster today. This appointment was on an 8 week follow up. Jacob has been off the steroid drops for the pst 8 weeks. I was very worried today about going. This appointment was going to be huge, to see if the MTX has kept his eyes clear. They were not. Both eyes were involved again. They both has a cell count of 1+. The eyes are in a flare. The MTX isn't doing what it is supposed to be doing. I am very discouraged and worried. I had assumed everthing would be alright because his uveitis was considered to not be as difficult to treat because he is a male. I was wrong. I think I know now that we are in for a long road to save his vision. Dr Foster wants us to see the rheumatologist next week to dicuss what is next. He suggested putting him on an additional med, another immune suppressor, or upping the MTX which means he will move on to an injection. We wait now for another week as this disease wrecks havoc on his eyes.

Jacob's knee is also not doing as well as it had been. He is having a really bad flare today. His knee was very sore today and he was limping all day. The knee was even more hot than usual. I think the cortisone shot is in the near future.