Wow!! what a past month and a half it has been! I started this summer off taking 12 credits at my college everything was going great! I was going to accomplish my summer goal of completing my greatest fear.... Statistics... everything started out fantastic!!! In fact I loved that class, my other class was also amazing and I loved it to be honest my schedule for summer quarter could not been any better... it is when everything is going great and you don't listen to that small still voice telling you not to take summer classes, but I did it anyways
About a week after I started summer classes I came home from school and sat on the couch, within five minutes my father called on the phone stating that my mom and I needed to arrive at the hospital because we needed to make some decisions about Anthony's... let me tell you we stormed out the door crying and driving to the hospital..it felt like 20 hours to drive 9 miles to Seattle Children's hospital. My dad sounded scared but would not tell us what was happening...
By this point Anthony had been in the Intensive care unit for a month due to the puffing up in his face from the blood clots in his chest, so much that we almost lost Anthony if had not been in-tubated when he had then within 30 minutes he would of passed, test and ultrasounds showed that Anthony's blood veins where clotted off but they had some medicines that the doctors could try but they where not without risk... the first medicine is known as TPA, which it it like roto rooter for your blood vessels cleaning and breaking down the clots. The tpa worked in his legs and some with helping to allow a small amount of blood flow to go through the blood clots. Anthony had just got off of his second round of TPA and we where under the impression that morning that if the TPA didn't work then we where faced with having to sign off on the surgery that Anthony would have a 50/50 chance of making but most likely he would pass on the table, we knew this before showing up to the hospital but the reality of how sick he was would sink in.
when we arrived at the hospital my father pulled out a picture that showed Anthony's veins and the blood clots where still completely blocked the flow of blood and the collateral veins that where forming but then closing off..what we were looking at was a picture showing us that Anthony would not be able to sustain or live life without a miracle..that night was a hard and sad night... our pastors, friend Becky, and aunt and Uncle came to visit Anthony.. we prayed over his body laying our hands on him asking God for our miracle... Then the Doctor came and my parents have known her since we first got Anthony placed into our care with a Tear in her eye she said that she did not think that Anthony would make it, that she had been wrong before but she was pretty sure he was going to pass on... we cried and cried and prayed...The Amazing thing about God is that in that room I felt a peace and presence of God that I have never felt before, he was there in that room holding my family up as we wept and cried over sweet Anthony, who was fighting and not wanting to stay sedated, in fact he woke up saying mama and Elmo. My mom wanted to leave the ICU unit and visit the Cancer care unit to see if the nurses that have taken care of Anthony where there, there are a few nurse that have taken care of him since day one of him being diagnosed with HLH, it is also rare that all of them are working on the same shift but when we walked in within minutes all those nurses that we have grown to love where surrounding us and hugging us the tears that they let fall down their face where healing and touching to us. The tears that the Doctors and hospital staff cried showed us that Anthony was more than a patient to them but rather the wanted the same as we did, For Anthony to be able to live a life! to be able to walk out of the hospital and go home... In the past two year after all the times Anthony had been sick and the amazing strength that he has shown, these blood clots where going to take him? it was unfair....
The team set up another care meeting for 3pm the following day. My mom and I came home and tried to rest but we where at the hospital early that morning with Starbucks coffee in hand. It was on that Tuesday that I realized there was no way I could continue with summer quarter and prayed and prayed about what I should do and without a doubt in my mind did I end up dropping summer quarter, I had a letter from the Anthony's Social worker and Doctor. One of the girls on the Cancer floor named Louisa whom my mom and Anthony have gotten to know on the floor and loves all the little baby's. my mom wanted Louisa to be able to say goodbye to Anthony so we snuck her in the back to say goodbye, when I saw her cry and weep over my brother I saw a bond and love between them that still makes me cry, I will never forget sweet Louisa in that moment that was so tender, as she said goodbye I stayed with Anthony and just held his hand, crying out to God "WHY"... all I could do was look at his frail body and ask "WHY?" he has overcome transplant and was doing to sooooo well with all his transplant...it is and was soo unfair.... during rounds that day my parents made it clear to the doctors that they where not wanting to give up on Anthony and did not want them to either... we wanted to give Anthony any fighting chance..the tears of my father touched everyone there.. the Tears of my dad who for so long held up my mom as she cried touched me... the Tears of my dad where a fortress and showed everyone there we where not wanting to give up.
The day went on in a fog, we asked for Anthony's Favorite nurse to be at the care givers meeting and she was given a no pay...The love that Amy has for Anthony is beyond words and the love we have for her is beyond word... In so many ways she has become more that a nurse she has become a part of our family, a rock and a strong voice in advocating for Anthony's health. Another person that we requested was Dr, Anne who has also become a strong voice and has known Anthony since day one.. the commitment that she has to Anthony shows, she came in on her day off. As the care givers meeting came about we had no idea what was going to be said. when we first arrived there was a tension and heart ache that surrounded the table we all went around and stated who we where and all the different Doctors that stated that they could not do the surgery without him most likely passing on.
Then our hope came Dr, Mathews the top Hematologist at Children's said that she had been in contact with a colleague in Denver Colorado and together they created a care plan, the plan would be to give Anthony a drug called Fondaparinux that would be given by a shot every day and every other day he would be given some aspirin to thin his blood. The hopes in this treatment is to allow his collateral blood veins to form and mature without closing off. although little is known about this treatment Dr, Mathews colleague suggested this because of her work with other children who had clotting issue and it had worked. This treatment is not without risk.
On Anthony's Caring bridge I posted a post about the day and I ended it with this:
"God is still in the business of making miracles and although his road is long from over the hope we have for Anthony is enough to keep fighting."
In six weeks Anthony has made leaps and bound in his progress! he left the ICU within days of being extubated, he was talking, laughing and blowing kisses.. the strength and courage that Anthony has is amazing! To be able to hold him and know that we are on our last chance but yet so far we believe that the medicines it working... and the best news is.....
After 138 days in the hospital Anthony is coming home tomorrow!!
It is true, God is still in the business of miracle making
He is still here to prove it.
