IVIG OMG!!

Today is Infusion Day for Lola. This is our monthly ritual. So as I was laying in bed this morning, it dawned on me that this month marks the 5th year of her receiving monthly IVIG infusions!! While she has been getting Solu-medrol and Methotrexate infusions since day one of her diagnosis and weekly ones for a couple of years at that, I cant believe that it has been a whole 5 years that we have been doing the IVIG dance. That is roughly 60 infusions! With these bad boys costing around $22,000.00 each, that's alot of dinero in 5 years! No wonder my insurance company gives me hell when trying to get a prior authorization for these treatments. Many people ask me what is IVIG, so here is a little tidbit of information.
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG is a blood derived product that has been used in the treatment of children with JDM. IVIG consists of purified antibodies which are proteins that the body's immune system uses to fight infection. The mechanism of action is unclear, but IVIG has been shown to slow down the inflammatory process. Side effects like headache, fever, and vomiting can occur, but they are usually prevented by pretreating with Tylenol, Benadryl, and sometimes the addition of a steroid.

I have been very fortunate that my dad insists on taking her to her infusions. She feels comfortable and at ease with him and he wants to be there for her. And he is retired so he has nothing better to do!! LOL! When we first started doing these all day long infusions, it was a bit easier, she had a port then. All they had to do was access the port and viola, it was going. Then that port was no good and we had to get another port and then that one lasted a whole 2 weeks. So then we were told that she could no longer have another port as they believed her body rejected them and that was what was causing the damage to the port tubing, the calcinosis that forms in her body. So then it was IV sticks and that was not fun. It used to take me, my dad and an extra nurse to hold her down, that was even after sedating her with some Phenergan. Allorah gave them 2 chances to stick her and if they couldn't get it on the 2nd try, we left, that was the agreement. She runs a hard bargain, that girl. Well, she became such a hard stick that I finally starting asking for the anesthesiologist to come in. We have been so blessed that they have been so willing to come in and start her IV each time we have gone in, so a big thank you to the anesthesiologists at GCRMC, especially Steve. You all have made this a lot less stressful for Lola and for us. Allorah now just goes in and weighs herself and gets settled in and sits by herself while they start her IV and get it going. No complaints or tears anymore. She is truly amazing. I hope and pray that one day there wont be anymore infusions, any more medications and no more doctors. That she will be cured and in remission and this will all be in the past.

Wedding Package Photos

We just got in the CD of our photos. Here are some pics from the wedding package photog. Not that many great ones, so that's why we are so excited to see the ones taken by my amazing friend/pro photographer extraordinaire, David Thompson and Aaron Matney. We will post those as soon as we get them. I got a text from David and we shoul get them this weekend.

Chicago Info

It was a whirlwind trip this time and we barely had time to sit back and relax. It was GO GO GO the entire trip. We are back home and back to our "normal" routine. Her appointment went well and she grew 2 inches!! That is a big deal for kiddos who are on Prednisone or any long-term steroids, as they stunt the growth. As soon as Lola walked in to clinic, everyone commented on how much taller she was! Dr. Pachman was so pleased at how well she looked. We met the new the PA and a few other new faces. I sure hope Doc gets some more help, she is so swamped with JDM cases. There are some concerns that she wants to address, as Allorah is complaining of trouble swallowing food (dysphagia), which is something that is common with the progression of JDM, that concerns Dr. Pachman very much so she will need to have a swallowing study when we come back in January. She also has to have another pulmonary function test to follow the slight pulmonary fibrosis that she has in her lungs. That will be done in January as well as a consult with the pulmonologist that is Dr. P's associate. So far her PFT's have come back normal so lets keep praying for that. She is also scheduled for a bone density scan (DEXA) to help check and follow her osteopenia, that she has developed from the long term use of Prednisone. She has a lump on her chest that she is sending us for scans to check on. It may be calcinosis or a possible cyst, but whatever it is, it can be removed. Her muscle strength is about the same but her range of motion is worse. Her flexibility is tight and less so she stressed the need for her to increase her exercises and therapy at home or they will be putting her back in PT a few times a week. She was not thrilled about that, but either she takes this serious or she will hinder her ability to walk right and have proper posture and have increased pain. The whole gamut of labs were drawn and we should be having those back in about 2 weeks. So its the waiting game until then. We are hoping that we can continue to decrease her Prednisone and possibly the MTX as well. I hate that shot!!
We travel back at the end of January and hopefully by then she will be more flexible and better labs, so I'm crossing my fingers!!

Chicago Time

It's that time again for Allorahs doctors appointment. We are here at DFW waiting for the next leg of our flight. It's gonna be a long day. Hopefully the traffic won't be too bad when we get to Chicago and can make it to Toro Sushi at a decent time and before it gets too crowded. Allorahs not the most patient person when it comes to her food.
You would think this trip that we have to make every 2 1/2 to 3 months would get easier but it doesn't. The realization hits home each time that there is no cure yet, that the JDM still ravages her little body and that the awful medications are still coursing thru her system. So no, it never gets easier. 10 1/2 years of this is alot for anyone to have to undergo. I look at Allorah and I see a hero. Someone who never complains about being sick or about losing her hair or the nausea that her medications cause or the pain from the injections each week for her chemo or the IV infusions each month. She no longer cries when it's time for her blood work, she now jumps up on the MRI and CT scan table by herself, she now asks the doctors all her own questions and she now prepares her own injections and checks her own blood sugar. She no longer needs me to lay out all her pills each day, she does it herself. No child should ever have to experience that and yet mine has. I hate this disease!!!
So now I have vented and here we venture on. Searching and searching and praying for a cure. One day...


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Location:Gate 9 at DFW Airport

2000 Views

Just noticed that our blog has had 2000 hits! Wow! Thank you to all our family and friends that take the time to read about our adventures and to check and see how the girls are doing and last but not least to all the people who are just plain nosey. You know who you are! LOL

Broncos

It was yet another sad day for the Broncos, but at least we looked good!



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