That's the end of that
I held on to hope that in spite of all of our Salt Lake appointments being cancelled, the one, the most important one would stick. It was scheduled for the end of April. It was an immunology appointment for all three of the kids. It is vitally important. Tumors are still growing without any signs of stopping in Shelbie's lungs and abdomen. Today, they called and cancelled. The hospital, they claimed is shut down indefinitely. It's so irritating that COVID is all anyone can think of. I find it ridiculous...yes, serious...but ridiculous because having tumors growing in your lungs is serious too!
I shake my head at this! I tried to be very patient as I know it isn't the secretary calling all the shots but I needed someone to tell me how to take care of three children with a fatal genetic disease when all of a sudden, it all pales when next to COVID 19. I don't understand and I guess I'll stop harping on about it because it makes me swear and cry all over my computer. I digress! She was about as helpful as she could be. To my surprise she called the immunologist we have yet to meet in person and explained the difficulties we are facing with Shelbie especially. An hour later, she called back and they are going to have to increase Shelbie's plasma dosage in order to get things under control.
Today, we received yet another blow. I was able to get her into our family doc. In fact, the clinic was dead. She wore a mask and gloves and it was a blessing he consented to see her. She has Leukoplakia all over the bottom of her tongue, the inside of her cheeks and a spot on her lips. When it first showed up two days ago, my heart sank because I had an inkling of what it was. Leukoplakia is a common symptom with the disease my kids have and often is the first sign of mucosal cancer. Just to hear the doctor say that he thought that was what it was too, made me feel sick.
She did have to take some high doses of antibiotics 6 weeks ago for Cellulitis so there is a slim chance that she has thrush, or an overgrowth of fungus or yeast but it really doesn't look like thrush. Fungus...maybe. But a person with a non functioning immune system can't fight fungal infections very easily at all.
He put her on some anti fungal meds but if it isn't clearing up in one week, she will have to go in for a mucosal biopsy and take it from her tongue and lip.
I am sad but I am not surprised. I know that we are headed into some very trying times. I have felt it for a few months now. I just hope I'm ready for what comes next.
Did I mention some really good news yet?...Keep it a secret though. Don't tell a soul and I'm not kidding! We are going to be welcoming a new addition to our family this year! Yep...it's a girl!
I got to go wedding ring shopping with Spencer last week to pick out a ring for his favorite person in all the whole wide world...it's not me and I'm okay with that! I love that he is keeping it a total secret from her. I love that they have never gone ring shopping together and this is straight from Spencer's heart. Because of the darn, stupid COVID, which is becoming a curse word to me in every possible way...none of the suppliers are shipping things and Spencer is having the ring custom made so, it might be two, even three months before he gets it back. I'm super excited for him and me. He swore he would be single his whole life but my prayers had other thoughts for him! Ha ha.
I shake my head at this! I tried to be very patient as I know it isn't the secretary calling all the shots but I needed someone to tell me how to take care of three children with a fatal genetic disease when all of a sudden, it all pales when next to COVID 19. I don't understand and I guess I'll stop harping on about it because it makes me swear and cry all over my computer. I digress! She was about as helpful as she could be. To my surprise she called the immunologist we have yet to meet in person and explained the difficulties we are facing with Shelbie especially. An hour later, she called back and they are going to have to increase Shelbie's plasma dosage in order to get things under control.
Today, we received yet another blow. I was able to get her into our family doc. In fact, the clinic was dead. She wore a mask and gloves and it was a blessing he consented to see her. She has Leukoplakia all over the bottom of her tongue, the inside of her cheeks and a spot on her lips. When it first showed up two days ago, my heart sank because I had an inkling of what it was. Leukoplakia is a common symptom with the disease my kids have and often is the first sign of mucosal cancer. Just to hear the doctor say that he thought that was what it was too, made me feel sick.
She did have to take some high doses of antibiotics 6 weeks ago for Cellulitis so there is a slim chance that she has thrush, or an overgrowth of fungus or yeast but it really doesn't look like thrush. Fungus...maybe. But a person with a non functioning immune system can't fight fungal infections very easily at all.
He put her on some anti fungal meds but if it isn't clearing up in one week, she will have to go in for a mucosal biopsy and take it from her tongue and lip.
I am sad but I am not surprised. I know that we are headed into some very trying times. I have felt it for a few months now. I just hope I'm ready for what comes next.
Did I mention some really good news yet?...Keep it a secret though. Don't tell a soul and I'm not kidding! We are going to be welcoming a new addition to our family this year! Yep...it's a girl!
I got to go wedding ring shopping with Spencer last week to pick out a ring for his favorite person in all the whole wide world...it's not me and I'm okay with that! I love that he is keeping it a total secret from her. I love that they have never gone ring shopping together and this is straight from Spencer's heart. Because of the darn, stupid COVID, which is becoming a curse word to me in every possible way...none of the suppliers are shipping things and Spencer is having the ring custom made so, it might be two, even three months before he gets it back. I'm super excited for him and me. He swore he would be single his whole life but my prayers had other thoughts for him! Ha ha.
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