October 19, 2011
 

October 19, 2011

Hello friends!
So I saw my hematologist for a check-up last week. Since the end of July, I have been doing a shot each day of a rheumatoid arthritis medication called Anakinra in hopes of keeping my HLH in check. It appears to be helping somewhat, as I have remained stable and out of the hospital since then. My blood counts remain low, and I continue to be neutropenic, but thankfully they have stayed above the point at which my doctor becomes very concerned. Unfortunately Anakinra can't provide a cure, though. We have now reduced my dose a bit, and the plan is to continue to wean me off of the medication and hope that my HLH doesn't flare.
I love my hematologist, and I am so very thankful to have him right here in St. Louis... But HLH makes my family and me a bit anxious. Whenever I have a flare, I become sicker than I have ever been. It is quite a miserable feeling, and very serious, and I would not like to revisit this experience. And last week I left my check-up feeling a bit insecure over the matter. I went in with quite a few questions, hoping to find a "plan B" should my HLH flare again... But I felt like my questions were not fully answered. Which leads me to some news. Recently I was introduced online to a very kind woman (hi Sophie!) whose sweet little boy was just diagnosed with HLH as well. She told my mom and me about a team of doctors at Cincinnati Children's Hospital who saw her little guy. This team is made up of hem/onc doctors, GI doctors, immunologists, rheumatologists, and other specialists who all work together to treat kids with immune deficiencies and histiocytosis, particularly HLH. Since HLH is such a rare disease, it isn't easy to find doctors who truly specialize in it. And so my parents and I will be off to Cincinnati Children's Hospital the first week of November! Oh, I so enjoy my time at home, and I would much rather not travel... But I have a good feeling about this program. I hope that they can at least provide the sense of security that I am looking for, as well as guidance for a treatment plan for me.
Also, my stomach symptoms have been quite a bit worse lately. So tomorrow I will be having an endoscopy to check things out in there. While they are at it, they will be taking some biopsies as well to test for an enterovirus. An endoscopy is typically a very easy procedure, but sometimes I have issues with paralysis following anesthesia. Although, when things go well I wake up thinking I'm Audrey Hepburn. And there's really nothing too bad about that now, is there? So, if you think about it, I would appreciate a few prayers for an Audrey Hepburn kind of day!
In other news, we had an emergency with our family dog, Mikey, on Saturday. It turned out that he had 20 to 30 bladder stones. We were afraid we would have to put him to sleep, but after a long discussion with the vet, we decided that Mikey would have emergency surgery that day. This was his fourth bladder stone surgery, and recovery can be a bit tough, but this time he has been spending his post-op recovery at a 24-hour care center, as having him here at home would be putting me at high risk for infection. Dad, Krista, and Tim have visited him, and he seems to be doing well considering the circumstances. Mikey is the quirkiest dog I've ever known, but we love him just the way he is!
Now in between all this medical and veterinary stuff, I've actually had quite a bit of fun! Since I lost the use of my right arm last year, I have had to find new hobbies. As some of you know, I have become quite the one-armed chef! But since little Miss Alice came along, I have been too busy to be working in the kitchen. This week we gave it a shot though, and she was a great little helper! I've been cooking away once again, so I'm all smiles! Now if only I could be rid of this Gastroparesis... Someday I fully intend to be able to enjoy some of these culinary creations myself! We also had a belated birthday party for the best mama in the world (that is to say, my mom). I love birthdays! And I finally finished reading Gone with the Wind. I believe it could be my favorite novel! One day Alice and I also played supermodel for a very fun photo shoot! I posted a few of the pictures in the photo section here on my CaringBridge. She is such a beauty, if I may be permitted to say so myself!
It seems I have a knack for talking (or, er, writing?) for extensive periods of time, so if you have read all of this, I thank you!
And my most sincere thanks to all of you who were so kind to sign my guestbook or leave tributes. Reading all of your messages of love and support truly brightens my days!


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