We're back from Albq. after two very long days! We saw the Immunologist (Dr. Clayton) on Wednesday morning. He is our favorite doctor, no doubt. This guy is so nice and genuine and actually sits and talks to us. He doesn't appear to be rushed and is very good with Brooke. He is the one doctor we have who will call me to talk about anything I need to discuss with him. He's great! This is always an easy appointment, mainly filled with talking about what's gone on for the past year since they last saw us. He explained that people with CVID (Common Variable Immunodeficiency)are harder to diagnose. They are known to have Neutropenia and often times their lymph glands are different; often bigger. He said cancer is hard to diagnose in these people. He talked to us about cancer pretty frankly. Brooke is at higher risk for Lymphoma because she has CVID. We've known this since she was diagnosed with CVID at age 5. They did a lot of blood work on Brooke while we were there and drew blood for some specialized T-cell tests that had to be sent to the Mayo Clinic that day. It has to be there within 24 hours and the results take 3 weeks to get back.
We didn't do the PET scan but did a different type of CT scan instead. Dr. Libby changed his mind the day before our appointment. He didn't feel Brooke could do the PET scan and he told Mike he was comfortable just doing another CT. Brooke did awesome. There was lots of confusion about sedation, etc. so I told the CT tech before we left Clovis that I would handle it. Good ol Benadryl! It worked like a charm!! Will use this from now on instead of Valium like we used last time. It's so much easier on Brooke and has no side effects other than sleep. They used two kinds of contrasts; one that looked at her stomach, spleen, liver, kidney, etc. and the other that was for veins. We saw Dr. Libby on Thursday. The CT scan has no changed from 3 months ago so he was very pleased. He told us if she had Lymphoma, it would've grown, and it hadn't. PRAISE GOD!! We are so relieved! Her spleen is still big, which I figured based on the size of her belly. No more horse riding with Special Olympics due to the enlarged spleen. The Neutrophil levels remain at 100. No change. He asked Brooke why she had to be so difficult. We laughed and said, "Welcome to our world." Our precious angel has been intriguing doctor's for 19 years now! Dr. Libby told us the neutropenia may not be as bad as it seems due to how Brooke is tolerating it. (No sickness at all in 2009...KNOCK ON WOOD.) He advised us to get her back out in society. So we plan on taking her to church Sunday, which she is going to love! She's missed it so much!!! And back to school in August. We will see Dr. Libby the day after Brooke's dental surgery (hopefully) for a GCSF shot which will help boost her bone marrow and help her fight infection. He is worried that insurance won't cover it, so we may have to. It's about a $3,000 shot!! And we have a follow-up appointment with him in December where he will check her blood again for cancer-related items. He's still being very guarded and cautious with her and the risks of cancer. I told him "NO MORE C WORD OR L WORD FOR A LONG TIME!"
Dental surgery on July 15th. Please pray for Brooke as we prepare her for this. Surgery #13 I believe. Ugh. This one really makes me nervous! The risks are greater since she is neutropenic and bleeding is always a concern. I'm pulling her off her aspirin 7 days prior per Dr. Libby's advice. My hope is that possibly the teeth are part of the blood problem and that by getting them fixed/extracted maybe this will correct it? The mouth is an awfully germy place!
Thank you all for your continued prayers. Please keep them coming. I'm sure if Brooke could talk she would tell you all how much she loves you! And that you're her friend. Thank you for loving Brooke!!
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