How many doctors does it take?

It's been 13 days since my last post, and things as always are ever changing.  I mostly write this blog to keep up with the enormous amount of information and appointments and everything else that is involved with his case.  Back in May, when Duke said they had exhausted all testing and didn't know what else they could do for Braeden, I began a paper journal because I knew that it would be redundant to "blog" every new thing.  

Yesterday was a long day at Duke.  We were there for almost 12 hours, and we had a lot of new things thrown at us.  I am going to refer to my journal and give you a timeline of things that have happened the past two weeks.

09/14/2020- The results of Braeden's 24 hour urine reflected that his kidneys were potentially being damaged by the Avastin, and we needed to make a decision whether to proceed or stop the Avastin. It's been decided to stop the Avastin.  

On this day, I noticed his hand tremors were worse. He had a lot of new bruising that he had no idea how he got them.   I also noticed for the first time that his left arm was twitching.

09/15/2020- I texted Dr. Landi a video of the twitching.  Bridget his NP emailed back and asks that we keep an eye out for any bleeding, because his platelets were low last week on his labs.   We also need to continue to update them with any new symptoms.  

09/16/2020- I contacted Mayo Clinic and requested an appointment for Braeden.  For the past five years Mayo Clinic has been named #1 hospital in the nation.  Maybe they can solve the mystery of Braeden.

09/17/2020-Braeden officially dropped band.  The hope is that he will be able to rejoin the band when he regains hand strength.  The word hate is not strong enough to describe my feelings about this DAMN thing taking away another thing he loves.

09/19/2020-15th year anniversary of Craniopharyngioma diagnosis, 22 months since Astrocytoma Grade II diagnosis.  My hero.

09/20/2020- Braeden felt his first jolts on this day. He described them as a "violent" shooting pain.  This is also the first time I noticed his right arm twitching.

He looked exhausted and slept a lot over the weekend.  

09/21/2020- Mayo called and got basic information insurance etc

09/22/2020-Braeden had a routine appointment with his endocrinologist.  His blood pressure has been better since we started the 2nd blood pressure medicine, but his heart rate is averaging between 120 and 150.  His usual heartrate is around 60.  She was concerned and ordered a 24 hour holter, She has referred us to a Cardiologist. 

I contacted our navigator  Duke and made them aware that I had reached out to Mayo and that they would need his medical records.

09/23/2020- The team spent a lot of time with us yesterday. Below are the highlights.

• C-Reactive Protein was high. This indicates he  has some sort of inflammatory disorder,  or autoimmune disorder.  Lupus was mentioned. We are being referred to Rheumatology to try to figure out this bit of news.  
• His platelet labs are all low and it's possible he has something called Von Willebrand disease.  Simple definition is there is not enough of a certain protein that is needed for platelet adhesion.  We are being referred to Hematology to figure this other bit of news.
• The twitching and his tremors have gotten much worse over the past week.  The team diagnosed it as Spinal Myoclonus.  And guess what????  It's RARE and can't be cured.  The treatment for it is focused on easing the symptoms. We are also doing a MRI to ensure that his tumor is stable. We are being referred back to our Neurologist to manage this part of his treatment.
• We should have seen improvement with his hand strength from the IVIG infusions.  Unfortunately, that has not improved.
• The bruising that keeps "appearing" from no apparent cause is something they are calling purpura.  This happens when there is bleeding under the skin and there hasn't been a trauma.  Braeden has several that fit this criteria.  He has one in particular on his face that could be in the textbook of Purpura.  They feel pretty sure he has also has something called vasculitis.  Another RARE condition that can't be cured.  This is an inflammation of the blood vessels. It can cause them to become scarred, thickened, weakened, or become narrow.   The plan is for him to be referred to Dermatology. Dermatology will need to get biopsies of his purpuras as soon as possible.  The vasculitis can range from mild to life threatening.  Getting this done ASAP is our first priority.  (They called me today, appointment is tomorrow morning.)
• IVIG #3 infusion done.  The infusion takes about 3 hours and with the help of IV Benadryl he slept the whole time. IVIG can also be used in treating vasculitis.  
• 127 pages of medical records were sent to Mayo clinic.  They will review his case, and if they accept our case, we should be able to be seen sometime in November or December.
• MRI done last night, and today they called to tell me that the "the MRI shows no radiologic evidence that the tumor is causing the progression of his symptoms.

His diet is going well. (We are working on the steroid weight gain, and happy to say he has lost 9 pounds over the past two weeks.)  Calorie counting, and no processed foods, and lower carbs, and lots and lots of vegetables.   Side note: cauliflower mashed potatoes are YUM!

Braeden-ism of the day yesterday.  Braeden and I listen to podcasts together.  Last night, he chose the episode about Woodrow Wilson from the show Very Presidential.  With in the first moments of the show, they talked about President Wilson's failing health.  One of the first things mentioned was his right hand weakness.  (Umm, sound familiar?)   They went on to say that he ended up being blind in his left eye. (Seriously? Braeden is blind in his left eye.)

Braeden looks at me and deadpans, "I am so Presidential and I didn't even know it."

My head and emotions are in a tailspin.  The year  2020 has not been kind to him.

Much love to all.

#BraedenBrave

#MrUnlucky