Before we left Ohio, we met with the GI team. That Thursday we intended to discuss the biopsy's but they weren't back yet.. we stalled.. we talked, discussed hypothetical game plans, reviewed how Annabelle was doing overall and stalled some more with the Doctor. After a while, we decided that we probably were not going to be able to wait for the results and discussed two plans with Dr. Putnam.
Plan 1 - Good Report from Biopsy's
If by a miracle, the biopsy's are clear and she is in remission - we agreed Annabelle deserves a new food and could use more protein in her diet. We haven't been able to consider this for years because we weren't allowed to alter her diet or aggravate her system while we were exploring the genetic testing. Now that the muscle biopsy and DNA extraction is done, we are free to begin life again in managing her Eosinophilic Disease.
We talked about foods and which would be a good idea to trial. I asked questions like, "If she can have chicken, why can she not have eggs?" The answer, "They are very different types of protein and it's that protein that triggers the disease to activate. Eggs are a top offender of EoE and cannot be considered to be part of her diet for a long, long time, if ever." The more I asked about new food recommendations, the more Dr. Putnam would remind me, "I think you need to let Annabelle decide what she wants to eat". So, so very true. The thought and idea is so fun that she may be able to have a new food! I know she wants one so badly and I would love that for her. If we do choose to trial a new food, she will have to eat at least 4oz of that food, every single day, and then we scope again in 90 days to determine if it is a pass/safe food or a failed trial. So yes, Annabelle will get to choose but it does have to be a smart decision because whatever we add, she will have to consume it daily.
Plan 2 - Bad Report from Biopsy's
We left Cincinnati last Thursday with a lot of information to think about. We left not knowing if we should be thinking and planning for the positive or negative. My mind was so happy at the idea of being able to tell Annabelle her boo-boo's were better and she can eat a new food.. I started thinking about new recipes to add to our short dinner list. I imagined Thanksgiving with a new item on her plate. I pictured her little face lighting up as she tasted something different for the first time. Then my mind would shift... it's equally likely that we will have to sit our confused, broken and faithful daughter down and tell her that she cannot eat any longer. She cannot partake in snack time at school, she'll be in the cafeteria at lunchtime without a meal. I decided in my head that we will not be celebrating Thanksgiving and we would do something fun instead. I listed all the things I need to rearrange, I will remove her snack bucket in the pantry and hide her personalized plates in the cabinet. How will we handle meals in a house of 7 people? How can I distract her for every single meal of the day? How do I explain to her broken heart that she isn't being punished but food just isn't safe for her. She doesn't know ANYONE that can't eat food.. how do I make her believe that she is just like everyone else when she globally isn't?! The anxiety ate us alive. The conversations were so hard.
Tuesday, October 25th at 12:34pm my phone rang, "Cincinnati Children's CCED" and my heart sank. I knew this was the call and I panicked. In fact, I hesitated for so long that I almost missed the call.
The words this nurse would speak will change our family monumentally... was I ready to hear it? No. I wasn't. Did I want to hear it? No. For an instant I panicked and my mind raced "I don't want to know... we will just keep doing what were doing.. the idea of good news isn't worth the risk of hearing bad news. We are happy with our limited diet and Annabelle isn't in too much pain. I don't want to hear anything ... I just want to pretend this conversation isn't happening..
Nurse: Hi Annabelle's mom! Dr. Putnam just called me and asked that I call you immediately. He's reviewed her results from pathology multiple times and we have news, are you ready?"
Me: (in my mind, NO! DIDNT YOU JUST HEAR ME?! NOOOOO!) ..... Yes, I'm ready. But I only want to hear good news.
Nurse: :laughing: well I can do that for you. Mrs. Bishop, Annabelle is in remission. The biopsy was perfect and showed zero signs of the active disease. It hasn't spread, it hasn't manifested. Your daughter is healthy from an Eosinophilic Gastrointestinal perspective.
(side note, Annabelle's 'food' of choice is to have pepperoni pizza. that's her choice when you ask her.... and that's not possible, that would be a trial of beef, pork, milk, wheat and multiple spices... we can only choose ONE thing to trial and a pizza is just not logical lol).
I asked if she could try milk like cheese, yogurt, sour cream, ice cream etc. Unfortunately milk has such a high failure rate and isn't recommended.. even more, Dr. Putnam won't allow her to try cheese/ice cream etc until she trials 90 days of white cows milk ONLY and can pass via biopsy. Afterwards, she can try the rest of milk based products but again, he doesn't want us to consider it at all.
His recommendation is to trial pork, and for logical reasons.
- It's another form of protein, in which we currently only have one (chicken) and she does need another.
- It's another meat... I am so tired of chicken
- It has a high success rate
- We get a lot of food options out of pork:
- Pork chops
Through conversation with the nurse, we decided the best idea is truly to consider pork as a trial. I love the idea that it provides a high success rate for passing the trial and also that it opens up a LOT of meal options, breakfast, lunch and dinner for Annabelle. Our meal list of choices are quite limited in our house and I am eager to be able to cook more; pork will provide that opportunity.
After I hung up the phone, I walked to the bathroom and dried my eyes.. when I got back to my desk, I texted AK and told him the good news.. my mind was racing and I just couldn't wait for the day to hurry and finish so I could go home and tell Annabelle! I went to the store and purchased a card for her and wrote her a letter to tell her how proud we were of her and congratulate her on gaining remission of this disease.
As soon as we got home, I made the girls sit down and told them that we had news to share from Dr. Putnam.
Our daughter is in remission. Remission. Oh my God, her little body is healed of the damage brought on by this awful disease. She is not cured, she is still very much suffering from an auto-immune disorder and this moment of happiness could be very short lived. But for our family, this is the best we could have ever hoped for. Our prayers are for comfort, less pain and zero progression of the disease in her body. Our prayers were answered. This celebration is purely a gain of quality of life for our daughter. I am so proud of her, without her commitment to an extremely limited strict diet and persistent prayers, we could have never gotten here. Annabelle is the one that deserves all the credit to this victory. She wears a face mask when germs are around.. without a fight. She washes her hands until they're raw.. without question. She showers daily after school before she's allowed to play.. willingly. She never sneaks food anymore. She rarely cries when she learns she cannot eat what others are.. She doesn't expect birthday cake or shared celebrations with her friends. She embraces a unique bland meal at the dinner table daily. She understands she cannot 'buy lunch' at school like her friends. She doesn't put anything in her mouth she isn't supposed to. She takes her medicine without fight and she never gives up on her faith. Annabelle earned this victory.
Please know, we are so happy to celebrate this wonderful news but Annabelle still has a long, long way to go before she is healthy. This news is completely different from her genetic testing and global diagnosis that will ultimately help us save her. This news is only 1/10 of her battles, but it's 1/10 of her battle that we are winning!
Mommy, do we have any ham here at home? Can I have some now???
Yes, baby. Absolutely you can.