Monday, March 11, 2013

Wesley is doing well... for the moment.

Wesley is currently doing very well. A month ago though, we couldn't say that. He had a reoccurrence of mononucleosis, so he was in and out of the hospital for high fevers, exhaustion and high dose steroids b/c the mono caused his arthritis to flare. My husband and I were stressed and our hearts broke seeing the little guy so sick. Thankfully, today with the help of steroids, he is doing well. The only battle we have is that his white blood cell count is extremely low, so he is considered to have neutropenia. We take proper precautions to keep our house clear of germs and keep him inside and away from the public as much as possible. He is on week 7 of Enbrel and even though it burns like crazy, he has come a long way in taking this other injection. His joints are looking much better already! We were able to decrease the mtx and last week was his last chemo injection, so we are back down to one shot a week, who hoo!

I know that I recently posted that we moved here to New Mexico, but we are moving again! Coming from IL to a new state, we didn't know much about the community and the schools here. The teachers are wonderful, but our children are way ahead of the game. They aren't challenged here and their are some other concerns about the teen pregnancy and drop out rate... so... we decided that moving into the Colorado side would be the best thing for our children. We found a beautiful house yesterday in Durango West 2 with all of the amenities we were looking for, including a jacuzzi tub for Wesley! We are literally up in the mountains, so we have to be cautious at dusk with mountain lions and black bear, but Durango Colorado is literally a slice of heaven! There will be so many fun things to do as a family and lots of outdoor activities. We are very excited!

Wesley has an appt in Phoenix on April 1st with a Rheumatologist and also one in Denver on April 8th, but unfortunately with the move next month, they will be pushed back until we get settled in. With him doing great right now, I am okay with it. I'll update you all once we have new dates! Oh, and one more thing... Wesley is getting his "dream" granted this year thanks to JGCAF! Jeff was so sweet and squeezed him in. So in the "latter" part of the year, Wesley gets to go on a Disney Cruise with his family and finally be able to feel his feet in the warm sand. I am absolutely thrilled for him! He has sure had a rough start to the year, so I am hoping this will turn all of those tears and pain and anxiety completely around for the little guy. <3

Thursday, December 6, 2012


We are at full benefit and maximum dose on Wesley's methotrexate. The Rheumy in Colorado requested an exchange of pictures of his knees and hands from all angles the other day. I sent them and a few hours later, I got a call back from the nurse saying that he was displeased on the way his joints looked and the amount of swelling left. Wesley has been on a full vial of mtx, high dose steroids, Mobic, Leucovorin and Folic Acid for a few months now and it worked great for about 6 weeks, but then we noticed swelling coming back. To make a long story short, we are now waiting on insurance's Pre-approval to add in Enbrel injections as well. Our first dose will be on Saturday. This week, he will actually have 4 needles put into his body and he's not thrilled about it at all. It really breaks my heart. I was folding laundry on Sunday and we were discussing Christmas and Wesley was talking about his list. He said "Mom, please tell Santa that if he can just get me a cure for arthritis I won't ask for the other toys in my list, that's all I want b/c I'm tired of pain and needles." I felt my heart sink and my eyes immediately tear up. I told him that I sure wish that I could make that ONE Christmas wish happen for him and we'll just remain strong and have faith until one day I can make that come true.    :0(

Wednesday, October 10, 2012

Not doing so well right now...

My poor little guy isn't doing well. He got a full vial of mtx on Monday night which made him SO sick yesterday. I had to pick him up from school b/c he was weak and vomiting. I checked him over and his fingers looked even worse. I forwarded pics to his Rheumy who said he needed to be on steroids for 6 weeks until the chemo kicks back in. Everything is a mess right now, but he sure is a trooper! He tries so hard not to complain. Yesterday morning, the substitute music teacher got an attitude with him when he asked for a chair to sit in b/c sitting with his legs crossed "indian style" is very painful for him. When he asked for a chair and said that he has arthritis she said "Look, kid so do I now sit down and be quiet!" Leigha said that Wesley did as he was told with tears in his eyes forcing his little legs to cross. I called the school and had a few choice words! His teacher is excellent though and she said that she would address it! He didn't feel well and tried so hard to stick it out and them to have a snotty teacher be so rude to him like that, made my blood boil! If he would have told me when I picked him up, I would've marched right into that room, but he didn't want to get her into trouble, so Leigha told me about it when I picked her up. Wesley has such a great heart! So... That is the latest. We are in a very rough patch with him right now and could use all of the prayers we can get.

Monday, October 8, 2012

Rheumatology Update- Children's Hospital of Colorado

We are back! We had an amazing trip into Denver. We took the scenic route and it was literally just us, the road and endless mountain views. The leaves were changing and it looked like something out of a dream. We took a bunch of pics, they can be found on my FB page. We took the kids to the Cheyenne Zoo in Colorado Springs one day and then Cave of the Winds in Manitou Springs another day. They were all smiles and it was a nice little mini-vacation.

We took Wesley for his first visit to the Children's Hospital in Rheumatology. His new doctor is an older gentleman by the name of Roger Hollister. He was very thorough with him and confirmed that they arthritis had now spread to the joints in his fingers and that they fluid had built up back in his knees. He is now considered to have "Oligoarticular Extended Juvenile Rheumatoid Arthritis." He wanted him back on Mobic on a higher dose and said his last labs reported higher liver enzymes, so he wanted 3 more weeks of rest before starting him back on chemotherapy. I talked him into starting him on it immediately. Why wait until he's miserable in 3 weeks. I want him to still be able to function in school! So, tonight we start back on his injections. I am really hoping that it will absorb some of the fluid. He said that the fingers joints were already damaged in 2 months that he wasn't on chemo consistently thanks to Albuquerque, Grr! Our follow up isn't until April 3, 2013 b/c of the distance or if something goes wrong, we can get in sooner. In the meantime we will be communicating with the doc via email and pictures. He also had clear eyes on his Opthalmology visit, yay! So that's the latest! I'll keep everyone posted in the next few weeks on how he responds being back on treatment! We will be setting up a 504 Plan at school in the next few weeks as Wesley has restrictions for school.

Thursday, September 27, 2012

A lot has changed the past few months!

So much has changed, so I should probably fill you all in huh? First off, we moved to the "4 corners" region of New Mexico right along the south border of Colorado the first week of May. It was quite a change from living in IL! We found an amazing adobe style home literally on top of a mountain. It's 3 bed, 3 bath with an attached 5 car heated garage. To say that this place is amazing with the views would be putting it lightly. My husband took a management position at CAT and we honestly couldn't be happier as a family. Ryan and I have always loved the mountains and we knew it's where we wanted to be! I received some of my mom's ashes and we spread them in Durango in a breath-taking spot... I know that she's shining down on us and so happy that we fulfilled her last wishes. It all fell together so easily, so we know that she played a part.

About Wesley... we took him for a follow up to Albuquerque about 2 months ago to a Rheumy recommended by Cincinnati Children's. He was very thorough with Wesley and was pleased at how Wesley had been progressing, so he stopped ALL of his meds "cold turkey." He did great for about a month and then we started noticing that his joints were swollen in his fingers and he was complaining of pain in his knees once again. I removed him from Alq's care and got him an appt at Denver Children's Hospital. In the meantime, I took a pic of his hands and emailed it back to Cincinnati to confirm that the arthritis was active and spreading and sure enough, it reared it's ugly face. So, we are back to square one after 2 yrs of chemo, anti-inflammatories and aggressive physical therapy. It's a major set back. I feel so sorry for Wesley and so angry at the doctor.

Next week, Wesley has an appt at Denver Children's Hospital which is about a 7 hour drive for us, but SO worth the care that we are hoping for! We will be leaving Tuesday and coming home Friday. October 3rd at 3pm is his big appt! My husband and kids will be going this time and then it will be just Wesley and I for future trips. We will stop before Denver and find something fun to do and take in the sights so that Wesley won't dread his appts so much. He will have an extensive physical by the Rheumatologist, lab work, MRI and we will see Physical Therapy and Opthalmology. It will be a busy day! I will post again after his appt with an update! Prayers for our family for safe travels please! XO