Friday, May 27, 2011

It's Methotrexate Night

For those of you reading this who have a child with JA, you already know what this post will be about. 


Last Friday was Esella's first dose of a medication called Methotrexate. MTX, as I will refer to it, is a chemotherapy agent that is widely used in the treatment of JA and adult RA (rheumatoid arthritis). Ironically, my dad was on this medication (in MUCH higher doses) when he was battling cancer almost 22 years ago. 

Esella's first bottle of MTX
MTX is in a class of drugs referred to as Disease-Modifying Antirheumatic Drugs, or DMARDSs. "These medications do not produce an immediate relief in pain or inflammation. but are believed to modify the natural course of the disease and prevent joint damage" (1). MTX is an immunosuppressant. This means that it suppresses the overactive immune system (hopefully) stopping it from attacking the joints. According to a review of JA treatments published in 2006 at least 2/3 of children with active JA are on some type of DMARD (2). 


So what are the side effects? Well...I mentioned it is used in cancer treatment, and yes it can have many of the side effects one would relate to going thru cancer: nausea, vomitting, hair loss, headaches, fatigue. Luckily Esella receives SUCH a low dose that we are hoping she will have little to none of these side effects. The nausea and vomiting, we were told, are more common in older children (higher doses) and that sometimes it is more of a psychological effect than a physical one. MTX is yellow....and we were told that some children/teen get to a point where they can't STAND the color yellow in ANY form.

MTX is generally given in two forms for JA/RA: pills or injections. There is a third option, which we are trying first, which is giving the inject-able medication orally. Every Friday Esella will have her MTX mixed in with a bite of ice cream. We are doing about an 8 week trial of it orally and then at her next rheumy appt on July 7th, we will discuss the progress and see if we will need to move to injections. 


Justin drawing the MTX out with the syringe
Putting the MTX in her ice cream (We did tell her there is medicine in her ice cream. We want to be as honest and open as we can be with her as this is HER body)
First dose of MTX. May 20, 2011
And yes, if we move to injections we will be giving them to her ourselves. Specifically, Justin will be giving them as I am not supposed to handle the medication as I am breastfeeding.

 As far as how her arthritis is doing? The knee continues to appear to be inflammation free (yay cortisone!!) however her right hand is not. She has two fingers that are actively inflamed (pointer and middle) and Justin and I noticed this week that the inflammation has gotten worse, and may be spreading to her ring finger as well. 

Swollen fingers
I also wanted to share with you all that a friend of mine's daughter, who is Esella's age (2 1/2) beat retinoblastoma (eye cancer) in September, though she lost an eye. Unfortunately the cancer has recently come back and spread and the out look is bleak. Her doctors say they have never seen cancer spread like this before and they are confused. She is a beautiful little girl full of life, just like Esella. If you have any spare thoughts, prayers, vibes, crossed fingers, please send them to Peyton and her family. I have been in a HUGE funk this week and I finally realized that a huge part of this funk has been the result of this dark pain that fills my heart when I think of that beautiful girl. We love you Peyton. Esella colored a picture for her and we sent it up to Canada (where she lives) where another friend will be putting together a scrapbook of pictures and letters for Peyton and her family. In addition, the Make a Wish foundation will be granting Peyton a wish! This organization is just amazing. 







In addition to the scrapbook...we are raising money to help the family. If any of you reading would like to donate, shoot me an email at TeamEsella@hotmail.com and I'll let you know how you can help. One of the things the money will be going to is professional photos of the family.

So...not exactly a happy post today, eh? Ha. Well...I promise the next one will be full of rainbows and unicorns ;) 


Until then, I'll leave you with some pictures of bath time that are sure to make you smile!





Have a great LONG weekend!!!

3 comments:

Amaday said...

I'm so sorry that her inflammation seems to be spreading :( Do you know if she tested RF+? The knees can be horribly tricky, but I think it's harder in the hands. It's amazing how much you do with your hands and don't realize. Everything hits my Emily's hands. I totally feel your pain. I hope that you don't have to move to injections, but I'm very happy that you are trying to be honest with her. I truly believe that is one of the best things that you can do. I feel that it helps these kids prepare, they're not as scared because they have an idea what's happening, and as she gets older she can help make some of the decisions, take an active role.

I'm so sad for Peyton. No child should have to endure what our kids do, but what she is going through is just inconceivable to me. I'm so sorry that she & her family have to go through this. Yes, Make A Wish is awesome. They will make whatever she chooses special beyond belief. You are an amazing advocate for children. Thank you so much!!!

Anonymous said...

I happened upon this blog just by chance last week. Or maybe it was a little devine intervention? Anyhow, I am so glad I did.

Reading Esella's hearfelt story makes my heart ache for her and her family. I pray that all your wonderful parenting and modern medication gets her through this with as little pain as possible.

I firmly believe that God only chooses those with amazing capabilities to parent children with any sort of disabilities. You are doing an amazing job! Your children are soooo beautiful, and full of smiles.

Keep up the good work. In the meantime I look forward to keeping up on your posts and I will have Esella and her family in my prayers daily.

God Bless....

Somer Diana said...

Bath time...hehehe, auntie somer failed at bath time the other night. it was a fun glimpse into the lives of toddlers...a fav memory of mine now! ;)