Last Saturday, I heard these words. "Do you have the faith to not be healed?" Just a 5 second sound clip from David A. Bednar, but I haven't stopped thinking about it. You know me, if something consumes my thoughts, I take it seriously. In my sleeplessness over the past few days, I asked myself what that could possibly mean for us?
Yesterday, when we got the news that Shelbie does not have cancer, it became clear. Do we have the faith to accept that healing is probably not going to be part of Shelbie's plan on earth? Today, we are coming to terms with that idea.
This hospital stay is not going to bring any immediate answers. The only thing it will have accomplished is stability in an acute infection of cellulitis and acute urticaria. Tonight, the infection is controlled and easing up significantly. The hives are not spreading as fast and in some areas, it is receding. They think that she will be discharged at some point tomorrow and we can complete the recovery from these complications, at home.
Today we've met with just about every specialty you can imagine. I am learning a lot about the process here. As a mom, I have a different agenda than specialists who are meeting her for the first time and facing an acute situation. I have 23 years of worry and questions. They have about 24 hours of worry and have a glaring situation to deal with. I understand that better now. Knowledge is power! Education is everything, so I'm glad I figured that out. It really has been amazing how they communicate so well with each other and these doctors are intelligent. This is an amazing facility and my overwhelm has nothing to do with the treatment we have received here. It's just my own ignorance and lack of experience.
Late this afternoon, we met the one guy we have put all our faith and hope and prayers into; Dr. Gundlapalli. He is an immunologist. Dr. Shami assured me that we would like him. I love him! Shelbie loves him. It was such a relief when he came in the door of her room and said, "Is this the patient of the year?"
He explained that when Dr. Shami called him to see if he would consult with us, he received an email with some brief explanation of the situation we have faced this year. He didn't think much of it until Dr. Shami called him yesterday to tell him that Shelbie was being transported here. He immediately got a hold of her chart and as he read it, he felt horrified at everything she is facing that no one has addressed in the past year. He is not only an Immunologist but he is also an Infectious Disease Doctor, and Allergist and an Academician. He said that difficult and complicated cases like Shelbie's is his calling. He said several times that he was honored and humbled to meet our family.
Honestly, that scared me. He and Dr. Shami have never seen such a difficult situation in their 20 plus years of practicing.
With that said, he shed a lot of light on the biopsy. It didn't show cancer but it showed some frightening things that possibly signal the progression to cancer. Some of those same cells, are likely the cause of the nodules in her lungs.
He has officially diagnosed Shelbie with Common Variable Immune Deficiency. I knew that was coming but it can be manageable, however, we have the more complicated variation. Of course, Coincidentally, I read a study last night, written by our Seattle Docs, Dr. Skoda-Smith and Dr. Shimamura about CVID often being one of the first things to present in Dyskeratosis Congenita. So, this diagnosis makes sense in light of things.
However, it doesn't account for the enlarged lymph node situation. He is headed in the direction of exploring Autoimmune Lymphoproliferative Disorder but honestly, he isn't sure. Just a hunch, a place to start. There is no cure for this disease. It is rare and complicated and will progress.
He expressed his concern that he won't be able to provide healing for Shelbie. We may be too advanced in this disease for him to do anything. For now, he is going to take over her transfusions
Because of her vasculitis and lack of veins anymore and the risk to place a port, he wants her to try a subcutaneous plasma that we will do at home, every week instead of once a month. She needs to keep a more constant and continuous level of plasma. He is very concerned, even worried that IVIG hasn't kept the lymph nodes from enlarging. This process can happen in CVID but it's very rare and IVIG is the treatment...Shelbie isn't responding to treatment for the lymph node issue.
So, it's bad news. In my heart, I already knew this was coming if it wasn't cancer.
Some interesting little acts of God occurred during our visit. At first he was hesitant about keeping Shelbie on IVIG. He said he wasn't convinced that the doctor made the right diagnosis that her immune system was abnormal. When Shelbie was 5 we took her to an immunologist named Dr. Shigioka. Back then, I was naive to the world of medicine. She was nothing special to me. She has since passed away but as soon as I told him about that visit and that she identified early on that Shelbie had immune issues, he got so excited. Dr. Shigioka was one of the top Immunologists in the world and well respected. Then, when I told him we had been receiving care at Seattle Children's he completely changed is mind and actually, is good friends with our Immunologist there, Dr. Torgerson.
He even said, "We are smart but not nearly as smart as specialists at Seattle Children's." He loves Dr. Torgerson so he felt confident that he can take over from here since we have had top notch care from Seattle. I always end up being amazed to see how God has carried us all along. I feel humbled at this realization again. And without a doubt, leaving our providers back home was absolutely the thing that had to happen. If for no other reason, to feel cared about and receive the compassion and empathy of these amazing doctors. It has given Shelbie such a new lease on life even though it was very bad news. When he left, she actually got out of bed and took a wheelchair ride to the cafeteria to eat dinner as a family. And, for the first time in a couple of weeks, ate half a grilled cheese sandwich.
Tonight, I'm tired and sad. I'm anxious to come home. The question remains, do we have the faith to not be healed? This conversation has yet to be had with Shelbie but I know she can handle it. She is stronger than she looks. How will we move beyond this now? How do you live when you know with certainty that they can not turn this around with the technology and knowledge available now? All they can really do is support her and provide some quality of life.
When there are more questions than answers, you live what you know. I know that we will continue to make the best of things. We will continue to grow together as a family and we will be happy. We will make sure that not one moment is wasted. Like I wrote in the heading of this blog, we will exhaust the little moment. There will be overwhelming moments that may feel suffocating but after this week, I know those moments will pass.
I can find no words to express my gratitude to the many prayers, the visits, the text messages, the blessings, the love. Some dear friends even sent a check to Idaho to pay for the repairs on my car. I haven't had a car for three weeks. Through a series of ordering errors, parts weren't available. As we were getting Shelbie ready to transport they called to tell me my car was ready and it had been paid for in full! I was paralyzed with gratitude and humility.
I found out tonight that my niece in Canada who is Shelbie's age is going in for emergency surgery in the morning to take care of a bile duct block. My sister was afraid to tell anyone because everyone has been concerned with Shelbie. I feel badly about that. I had to call my parents to tell them about their struggles. It's been a really hard two weeks for our family. My dad had surgery last week, my niece had surgery two weeks and another one tomorrow and my other niece had a miscarriage last week. So many difficult situations we have been dealing with. But, we have a strong family. We can do this! We will do this. So...til tomorrow.