11/20/14 Update

I sure hope these weekly updates become lesser and lesser.

We got up at 4AM yesterday morning and headed out to Chapel Hill around 5AM, we had an 8AM appointment with Jordan's hematologist. Everything looks very very well, we are so excited for the first time in eight years, yet my wall is still up, I do know this can all change at any given time, so I am trying to stay off of high alert and enjoy the moment while we can.

That spleen of Jordan's, as you all know, was so swollen back last December, it was down to his waist, they told us that it would take months and months before it would be a normal size again (right underneath your ribcage). A month ago, it was still down to his belly button, BUT, yesterday, it was right where it was suppose to be, could barely feel the tip of it, his hematologist was very very happy about that. Jordan looks and feels great, and we are so pleased with the progress of the Rituximab treatment, I would highly recommend it for anyone dealing with this blood disorder.

We also saw Jordan's rheumatologist, she deals with Jordan's immune deficiency, still going to do monthly IVIG at the hospital each month, until we can get a correct dosage to move to SubQ IVIG at home. She did say if we are not happy with doing SubQ at home, once we start, we can always go back to monthly IVIG at the hospital. So we will see when we get to that point. But she is very pleased with his current IGG levels, her goal is to keep them above 1,000, and before Rituximab they have been hovering around the 400 range. Only thing that was disconcerting was the fact that Jordan will be on IVIG for the rest of his life.

They finally also gave us some meds for Jordan's face, due to the steroids, they have made his acne worse, so hopefully that gives him some sort of relief.

Other than that, it was pretty much an uneventful appointment. I did talk to the social worker there about Jordan getting on disability, I had filled out papers back in September, online, and hadn't heard anything yet, so she made a few phone calls for me yesterday, and I finally have an appointment in a few weeks to finally fill out a claim for that. Fingers crossed on that, because if he gets approved, then he automatically gets placed on Medicaid (state insurance), and that would save us some money on his health insurance and prescriptions each month (which are pretty expensive). But I also know its very hard to get approved for disability, especially with something as uncommon as Jordan has, luckily I have a binder full of appointments, treatments, his symptoms, etc. I have to basically make a good case on how this disorder affects his life, which it does, and always will.

Anyhow, these are his counts, very excited about them, hopefully they stay up and 2015 will be a good year for him.

Week 1: 10
Week 2: 35
Week 3: 125
Week 4: 205
Week 5 (Post Rituximab): 222

Hemo is 16
WBC is 7.4
IGG is 1405

Thoughts & Prayers as always =)

I will update next week before Thanksgiving, since Jordan has his IVIG treatment on Tuesday.

11/13/14 Update

Jordan got his last Rituximab treatment yesterday, and once again it went very well. Took a little over 3 hours as it did last week, Jordan slept throughout his treatment, except the last hour.

Exciting news though, his platelets increased even more, I will list the past four weeks down below.

Next week we head to Chapel Hill to see Dr. Gold & Dr. Wu to go over everything and see what we are doing here on out. I know they talked about starting the wean off of steroids, which will be a slow process, so it will take months before he is completely off them. I am hoping we also talk about weaning him off of CellCept and all of the other medications that he is currently on.

Fingers crossed this means we are heading into remission status...at least for a min of a year. Thats our goal, anything over that would be even better of course.

Platelet Counts

10/22/14- 10,000 (Before the first dose of Rituximab)
10/29/14- 35,000 (Before the second dose of Rituximab)
11/5/14- 125,000 (Before the third dose of Rituximab)
11/12/14- 205,000 (Before his final dose of Rituximab)

205! Very exciting as Jordan has not had counts that high since right before he was diagnosed eight years ago! So we are very happy with the current results. Now we just wait and see if his platelet levels will hold off, as does his hemoglobin and his other blood cells.

Continued thoughts and prayers as always!

11/9/14 Update

Third round of Rituximab went very well, but we had a very long day on Wednesday. Jordan was also due for his monthly IVIG treatment, so we decided to go ahead and do both treatments on the same day. So what would have typically been a 6 hour day, turned into an 11 hour day.

Chemo gown that the nurse has to wear when administering the chemo

We went ahead and started him on his steroids and Rituximab treatment to get that out of the way. Pretreated as we normally do (Benadryl, Tylenol, and Zofran), Rituximab took only 3 hours, so that wasn't too bad.

Once we were done with that, we started his IVIG, also pretreated with meds (Benadryl and Tylenol) again, and that treatment took 4 hours (which is a record for us, typically IVIG takes 8-10 hours); thankfully no reactions from that either.

Most exciting part of our day was his platelet count. They draw blood before we start each treatment, before the first dose on October 22nd, his platelet count was 10,000; before this third dose on Wednesday, his platelet count was 125,000!!! So we are SUPER EXCITED about those counts. This upcoming Wednesday, his counts should be higher, just because of the IVIG alone...so I'm looking forward to seeing what his platelet count is when we go to Chapel Hill on the 19th (typically IVIG only lasts 2 weeks for Jordan), to see Dr. Gold & Dr. Wu.

Will update later on this week, after our fourth AND FINAL dose of Rituximab is done!

Continued prayers and thoughts are appreciated!