So My Kid Has Cancer

I guess it takes my kid having cancer to update my blog. Austin has cancer. It is so hard to write those words. I feel like it couldn't be more unfair. We've already almost lost him once and now facing it again is almost unbearable. Austin has PTLD (post transplant lymphoproliferative disorder).  The week before last he was complaining of pain while urinating. We called the nephrologist and they said that they would check it out and were not worried. The next day I watched him pee and it was very uncomfortable. Called the Dr's and told them we needed to do something a little more urgently. The next morning on Friday he collapsed at school from pain. I will always remember that day. We took him to the pediatrician and she said that she thought it was just a pulled muscle. I told her no, we need to get imaging done like the nephrologist suggested. She wrote orders, I argued with the imaging place and they squeezed him in. That is when they found a mass the size of a baseball by his bladder and something in his liver. We then rushed down to UCLA to have a CT scan. On Saturday morning they told us it was cancer. Ben and I were devastated. How could this be? His labs have been beautiful and he had been stable for about 2 years. How could he have so much cancer in him? We told them that we wanted to be treated at Boston Children's since we were moving to Massachusetts in a few weeks. They said either we get a biopsy that day or we fly out to Boston the next day. So that is what we did. We went home, did laundry, went to a wonderful going away party hosted last minute by our friends the Sayers and left the next morning.

    We arrived at the hospital Monday afternoon and he was admitted. They did a biopsy of the mass found by his bladder, a lumbar puncture, and a bone marrow biopsy. He was in good spirits and eventually we were able to talk to him about having cancer. It was really hard, especially when he asked me if he was going to die. How do you answer something like that? Stare into the face of your sweet child and answer in a way that won't terrify him? I asked him if he felt like he was going to die. He told me no. Then he asked if he could die from it and I told him that if it went untreated that yes he could and that was why we were at the hospital. We got out Friday and were able to spend the night together, Ben, Austin, and I, before Ben left to fly back to California. He flew back to get Henry, Emma, our two cats and to supervise the movers packing up the house. Austin started to have a horrible headache and back ache from the lumbar puncture. The back ache has subsided but the headache has not. He is on Oxycontin right now to help with the pain. He still has to lie down most of the time or he is in terrible pain. 

     We got news yesterday about the type of PTLD. Austin's is somewhat advanced. He will be admitted on Thursday to have a port placed and then the will start Rituximab that same day and keep him there to monitor him. The medicine is not chemo. It helps to break down the B-cells and get rid of the masses. The only problem is if you get rid of too many B-cells at once the toxins that are secreted by the killed off cells can hurt the kidney. That is why we are staying in the hospital, to see  how his body reacts. If it goes well he will get that once a week for 4 weeks total followed by chemo. Ben is flying with Emma, Henry, and the two cats on Thursday. I am so excited ot have our whole family back together again. 

There have been some pretty amazing and somewhat miraculous things that had to happen to make us be in the right place at the right time. I have seen Heavenly Father's hand in so many ways. When I came a few weeks ago with Ben to see our new house and town I really felt that I should come and tour the hospital. I was able to get in contact with someone and made an appointment. I also met who was to be our transplant coordinator and started the process of switching over to Boston Children's way earlier than what UCLA was planning on. On my way back to the car I received a very distinct impression that the reason why we were moving here was because of the hospital. I thought it was weird and didn't really grasp the meaning at the time. But now I do. When I was at the imaging place and had no idea what to do, who walks in but one of our pediatricians with her daughter for something totally unrelated. I was able to talk to her, get a quick hug and figure out my next step. When we went to our room at the hospital we just happened to get the nurse we usually have at our monthly infusions. We know her really well, and Austin really likes her. We also knew the lead resident from our last stay in the hospital, also another person we like and trust. We are currently staying with our good friends parents that happen to be Drs. I feel safe and loved here. Our new ward has done so much to reach out to us. Our bishop's wife drove over to pick us up and take us over to her house to hang out. Having friends from home visit us in the hospital while we wait for test results and bring us goodies. My cousin just happened to call and to tell me he was is in the area when we needed help. We have good friends here that are loving and supportive, always checking on us. We have received a ton of support from back home though calls, texts, and emails. The very fact that we are moving here right when we find out about all of this is amazing. It blows my mind that Ben happened to get a job at Boston Scientific at the beginning when Austin was sick the first time, just so we could be here at the right time. Heavenly Father has a plan for us. Some of these things might not be miraculous but at this point I really need to count every blessing. It helps to put things into perspective. 

Thank you everyone for your support. Please do not get offended if I do not call, text, or email back.  I will try and get back to everyone. I will be posting updates on here if you want to know what it going on. This may sound weird but I feel like I give away a little bit of myself whenever I have to explain the news. I have to re-live the pain, and the anxiety. What I really need from you is not questions but messages of support and love. Or a phone call to just tell me what's new at your house. In a sea of uncertainty having anything normal, even just a conversation, is great. It's distracting. It remind me that there is a world outside of all this other stuff of Dr's, treatments, scans, and news we don't want to hear. Austin loves to FaceTime other kids if your kids want to visit with him. Thank you for your understanding and your support. We are grateful to all of you.