Mucositis

It has been a hard week at our house. Austin was able to come home last Saturday. Most of the time he felt really crummy and there was maybe an hour a day that he acted like himself. He would sleep a lot and we would watch  him like a hawk. Last Wednesday he started to get a fever and he was complaining of his mouth hurting. It got worse and he was having a hard time swallowing without pain even with oxycodone. We called and had us go in. That was a stressful car ride. Austin was burning up and half way there his breathing became fast and he started to pant. I kept wondering if I should pullover and kept trying to talk to him, I decided to keep driving as long as he responded. There are not a great number of hospitals close to where we were so with a bit of California style driving and a prayer we finally got there. They accessed his port and started antibiotics while we waited for his blood counts. He all of a sudden started to cry that the left side of his mouth hurt and I could see it starting to swell. He said that it felt like a nerve exploded in his jaw. 

Sometimes I think the hardest part about this is not being able to see our little boy as he is a shadow of himself right now. You start to wonder how in the heck is he going to get through three more rounds of this? Am I going to get a chance to see him be himself again? I know, I know, everyone says one day at a time, but man, this sucks. How in the heck is he going to be able to get through this? He needs the chemo, and it is working. We just have to support him to get through this. If you are wondering what to pray for please pray that his body can have enough strength to push through the side effects so he can keep getting his treatments. 

My cousin came to the hospital and stayed with him till the weekend, switched off with Ben for the weekend, and then my cousin Jared stayed the night again. During that time Austin developed severe mucotisis. Chemo affects the cells that turn over quickly in your body (hair, mucus membranes). Basically Austin's mouth was completely covered with inflammation, cuts, and sores. It can affect your whole GI tract from your mouth all the way down to your bum. Because Austin was also complaining of his stomach hurting and urinating was painful they believe he did have it all the way through his GI tract. Austin's left cheek swelled up and they switched his antibiotics to cover a possible infection in his cheek. His cheeks and lips were so swollen he couldn't close his mouth. They put him on a continuous morphine drip with a button to administer extra when needed. Austin went 4 days without eating and getting minimal fluids by mouth. When his white blood cell count started to come up (with some assistance from Neupogen) his mouth started to feel better and he could start to eat and drink. We are still waiting for him to pass a stool. That brings us to today and his first ultra sound since the start of treatment. The baseball sized tumor is completely gone and the multiple masses in his liver that were 3 cm have come down to 1cm. It looks like we are on the right track and we are cautiously optimistic at this point. It's good to know that we can remain on this regiment and not have to start over with another set of drugs that are even harder on the system. And it's a morale booster that all of this is actually working. He will still need to complete the other 3 rounds of chemo. This lymphoma is the fastest growing lymphoma out there and can get into the central nervous system. It is important to hit it hard and not allow it any time at all to spread or to grow. 

Austin has been in good spirits despite everything. He might be able to leave the hospital for a few hours tomorrow and will start his Rituximab in the clinic on Thursday. Then he will be admitted for his 2nd round of chemo. He started to loose his hair, instead of loosing it all over his pillow, bed, shirt he decided to shave it off (he told us it was itchy). Ben is going to shave his too, along with some other very supportive family and friends! It was so hard to see him go through the pain of this last round. As parents its hard to feel completely helpless and know that he has to go through this 3 more times. The doctors are going to take some preventative measures to help minimize the mucositis with this next round. I think having a good attitude can really make us or break us. It has been amazing having all the support from family and friends during this time. From having my Step-Mom here (and helping in California to get us here) and my cousin to switch off with us at the hospital, to receiving meals from the ward, donations to Austin's GoFundMe, to packages in the mail, texts, and phone calls we feel extremely humbled, and grateful for all of you that have reached out to help. We could not and cannot do this without you. Thank you everyone, you have all been so great. My thoughts sometimes go to dark places and my friends and family are who pull me out of that. We hope one day to be able to give to others as much as has been given to us. 

Emma is doing well in school. She still struggles some, this has been really hard on her. My hope is that she can find some friends and we can get her some playdates. She might go to camp and go visit some friends this summer. We just need to keep her busy. Austin received some really fun mail. The Mariners baseball team sent him a box with a bobble head, shirt, beanie, baseball hat, and pictures signed by players. Thank you to whomever let them know about Austin being sick. He thought it was pretty cool and loves to wear the beanie. We just finished un-packing the house. I am so grateful for that. If this last round of chemo was supposed to be easy I can only imagine what might lay a head of us. Having a house that is organized and functioning will make it easier, so I have stayed home and let others go be with Austin. Thank you for everyone that sent mail to us! It has been up lifting. We have received some gifts through Amazon that did not say who it was from, but I can assure you that my kids have loved every single thing. It has been so amazing and thoughtful to have people from both our pasts that have reached out to send their love and support. There have been many happy tears shed as we feel your love.