After 2 years and 4 months of cancer treatment Swassie finally rang the bell on October 9th, 2020. It was a highly anticipated moment by us and many others. Due to COVID-19, there was not a big celebration but we did celebrate this joyful moment with her 11 close friends by hosting three small parties outside. It took up the whole weekend, but Swassie loves a party!! She got spoiled by friends, family, and neighbors. The Sweethearts stopped by with a huge basket and Swassie was relishing her moment of glory.

Thankfully the chemo treatment came to an end, but like many other cancer patients, there are still some side effects she is dealing with.  Unfortunately in her case, these are quite significant.

We thought Swassie would move to survivorship. As silly as this sounds, but mentally this is a big deal. Going to the clinic we would always pass the door where it says survivorship. We were totally expecting that was our next place to be for the monthly check-ups, but nope they are keeping us two more years in the clinic. So for the upcoming year, we will go back monthly where they check on her blood counts. Fingers crossed the cancer doesn't come back.

So now we are dealing with recovering from the side effects.

Swassie still has a major tremor in her left arm and barely can use it. I added a little video to show there really has been no improvement. But we saw a neurologist in Houston who gave us great hope. It looks like my 15-year-old girl will be beating me to the Botox! Apparently with Botox injections they can help this tremor. She might need injections every three months but we are willing to give this a try. She better has good healthcare later in life because this "Botox thingy" might be a lifelong treatment!

Sadly her right wrist is a much bigger deal. The blood supply to her wrist was affected by the chemo and therefore the lunate bone died off. She was diagnosed with Keinbock's disease which is also known as avascular necrosis of the lunate. In February the wrist surgeon was optimistic that with surgery this could be fixed but she first needed to be done with her Chemo treatment. Swassie couldn't wait to get her wrist fixed and pick up tumbling/cheer again. So we saw the surgeon immediately after her last treatment. New X-rays showed that the Scaphoid bone now also is in bad shape and that her wrist is close to collapsing. Arthritis is knocking on her door and seems to be inevitable. We were unaware that this could happen, and the wrist is apparently beyond the possibility of reconstruction. Meaning no more tumbling and cheer. It was a very, very bitter pill to swallow and there were tears. While writing it down I'm honestly fighting back mine. I don't think it's fair but I have no control. So I bravely told my girl we can't always control what happens to us, but we can control how we react!! I'm not sure if she really gets that this part of her life is over. There is another surgical option that will help with the pain.  Three other bones will be taken out (don't ask me details I'm not quite there yet) but the function of her wrist will be limited. We are seriously considering checking out one more specialist just to make sure there is no other option.

A third side effect we are dealing with has really been very serious and has affected her and our life big time. For a few months, Swassie has major involuntary muscle contractions that cause repetitive movement. It affects her whole body. Luckily the absent seizure-like moments have pretty much vanished. So that's a big relief. Her EEG also showed she doesn't have epilepsy. So that is all good stuff. 

About a month ago we saw a neurologist in Houston who is specialized in movement disorders. While we walked in the Texas Children hospital in Houston I noticed these banners that mentioned that over the past 5 years this neurology department was awarded 2nd and 3rd best treatment place in the USA. While I'm not thrilled with what my little pumpkin all has to endure, I'm very grateful that we live so close to one of the top hospitals in the nation and possibly the world. Just keeping it real, but thankfully we are not living in Timbuktu (nothing against this beautiful historic place in Africa).

Swassie got diagnosed with Functional neurological symptom disorder and OCD. The fact that she has been exposed to death way too much, combined with the whole COVID-19 pandemic, has caused her such great stress that her body is neurologically acting out. The good thing is that with medication, treatment, and patience she can recover from this, but this will likely take a while. We already have tried three different kinds of medication but so far it didn’t have the results we had hoped for. We are starting treatment in about two weeks and it honestly can't come soon enough because she is pretty much attached to my hip. Her episodes of involuntary muscle movement are exhausting and really debilitating her. So while we pretty much locked her up during the first months of COVID she seemed fine, but when we went on our road trip she felt unsafe, and subconsciously that triggered it. She has been unable to get the episodes under control. For example, people not wearing a mask close to her causes her great stress and is one of the triggers. The past months have been very challenging and I have been walking the line between hope and discouragement a lot.

Now while this all sounds a little gloom and doom, I want to share that Swassie has picked up a new hobby. She has become a passionate cook. The cleaning up part still needs attention, but I'm very impressed with her resilience. The chapter of cheer and tumbling might be closed but for now, it looks like she has opened a new door. It's a fattening hobby for mom, but I will take it.

So we have to remember how far she has come

and not focus so much on how far she still needs to go

She is not where we had hoped she would be,

but neither is she where she used to be.

Much love to all of you!