Doing great!

Mac started on his new chemo last Thursday. It is called Zolinza or Vorinostat. So far he has been doing great with it. We have not seen any side effects which is a welcome relief. His hair has starting growing in along with his eyebrows and eyelashes. Although he is still a little unsteady on his feet at times and his had tremors still cause him some frustration he is fabulous! It is so nice to see him with the mischievous sparkle in his eye. He doesn't talk much about his feelings but he does tear up when we talk about him repeating 1st grade this year. I feel bad that he is so upset about it but in my heart know that it is the right place for him.

Liam was able to have his 1st conversation with the social worker last week. We were almost able to physically see a weight lifted off his shoulders. He went to bed that night and slept til 12:30 pm the following day! He did stress with the social worker how much he wanted their conversations to stay private and not be discussed with anyone else. When she left I reiterated to him that I would only know what they discussed if he told me. It took a couple of days but he did tell me he was afraid Mac was going to die. This is a conversation no "baby book" prepares you for. I told him the same thing we told him back in January before the 1st surgery. We talked about about how everyone dies and that we were doing everything in our power to help Mac. I think just saying the words helped him. Hopefully, the more he talks to us and the social worker the more his mind will be put at ease. At 9, he should not have to be constantly worried about his little brother dying.

I still have days when the tears seem to never end. It is so hard to live our lives from one moment to the next never knowing what or where we will be. It is especially hard when I know that we will never know why this happened to Mac and what caused the tumor. I am a planner and have never been one for enjoying the unknown and that is all our life is now. I feel and look exhausted all of the time these days. This "new normal" is VERY hard to get used to.  Baby steps they tell me.

"If it weren't for cancer, I'd say I have the perfect life. If it weren't for cancer, would I even realize this?" - Phill

July 25th

Things are going great! Mac is starting on a new oral chemo tomorrow that will hopefully go as smoothly as the last one. Mac's hair and eyelashes have started coming back. I'm not sure if they will stay or fall out agian with the new chemo, but just seeing the peach fuzz is exciting! Mac has started getting ready to return to school in September or rather thinking about what kind of backpack he wants! 

We are going on a boat ride tomorrow night around Boston Harbor with the Cops for Kids with Cancer that both boys are looking forward to. Also, the social worker returns tomorrow to talk with Liam. He is so excited about this and seems to have a lot he wants to talk about. I couldn't be more proud of him. It is so nice to see him recognize the stress he is under and want to talk about it rather than hold it in and allow it to manifest itself in destructive ways.

This has been an emotional week for me. I started packing up my classroom yesterday and was surprised at how hard it was on me. In my heart I know I am doing the right thing for both my family and the children who would've been in my class by not returning. At this time I could not give them the dedication they deserve in a teacher nor the reliability. It's funny how since I was a child I wanted to be a teacher. I got scared by the idea when I was younger and my life took another path. After Mac was born and about to start preschool I returned to get my Master's degree and License. It seems like I finally had it all. The happy and healthy family, great job and a plan for my life. How quickly things change. I don't even know what to expect for tomorrow let alone next week or year. I just pray for direction in finding a more flexible position that will be even partially as fulfilling and fun as teaching has been.

July 15, 2012

We have all enjoyed another week at home with no hospitalizations! Although it was a bit busy. We had the visiting nurse come on Monday, an Occupational Therapist on Tuesday, clinic on Wednesday, and a nurse and social worker on Thursday. I'm not sure if I will get used to all the visitors we now have, but so far they have all been great for the most part. The week went well with no big issues which is great. Mac began a round of 5 consecutive days of oral chemo on Wednesday. I am more and more thankful for his g-tube with each day that passes! I was able to administer the chemo myself here at home by just opening the capsule, mixing it with water, and just putting directly in his tube. So great to be home and it was even better he didn't have to taste it because from what I hear it is HORRIBLE. Mac is doing well swimming in the pool or rather canonballing into the pool. He is up to 50 lbs and is getting not only stronger but happier with each day he spends at home.

Liam is still struggling. He has asked to see a therapist to talk about his feelings. During a conversation he told me he feels angry, sad, mad... all these feeling all the time. He also said he has not felt happy since Mac was diagnosed with cancer. So the visit from the social worker on Thursday could not have come at a better time. They are going to be coming or setting him up with other services from professionals and volunteers that come right to the house. I can't begin to imaging what he is feeling. Liam has carried the weight of the world on his shoulders his whole life. He feels empathy like no one I have ever met. It has been so hard for him to have his whole world torn apart, watch his little brother vomit, lose weight and go bald, see Mac get frustrated with the constant tremors in his hands, and learn that Mac can no longer do the things that used to come so easy to him. We have never instilled in Liam a feeling of responsibility for his brother because we never had to it was just always there. Liam is so protective of his brother and I fear for all of our futures... this disease could destroy us all in an instant.

I continue to be thankful for all of our good days and pray for Mac to make a recovery. Thank you all for your continued support.

1st Vacation

We just returned from our 1st family vacation after diagnosis. We have been going to Cape Cod for the past several years with my family. We were so looking forward to getting away for a little bit and spending time together away from reality. On the outside it looked like the perfect vacation. We rented a house with my parents, brother, sister and her family. It was less than a 5 minute walk to the beach. We could even see the ocean from the roof top deck. The weather was perfect every day. It was exactly what I was hoping it would be. Until we got there. I struggled all week with an emotional roller coaster of emotions. At the same moment I was feeling so happy and grateful that Mac was with us and feeling good I was so incredibly sad to see him sit out swimming at the beach and playing with his cousins. He had always been the 1st one to run into the ocean and the last one dragged out at the end of the day. He had been planning on catching a seagull for a few years setting up traps and waiting patiently for them. He had no interest this year. It was so painfully obvious that Mac is not and will never again be that carefree kid he once was. I am grateful for every moment we have with Mac, but am devastated over the loss of childhood he deserved. He should not have to go to bed every night hooked up to a pump be get nutrition because his appetite is gone and taste buds are destroyed from radiation and chemo. He should not have to worry about getting sand in his g-tube. He should not be so cold on the beach he wraps up in 2 towels because he has lost so much weight.

Please don't misunderstand. We had an amazing week and really great time. Its just that it seems like every time I think I have a handle on the fact that our life will never be the same I feel like I am slapped in the face with another example of just how much has changed. I think right now I am ok with the conflicting feeling of gratitude, happiness and overwhelming sadness at times. It is a lot better than feeling angry. I imagine these emotions have become my "new normal" and hopefully as time goes by and we get through our "firsts" after diagnosis we will settle into our new lives. I just never expected the happy times to be so hard too.

"Childhood Cancer steals. It steals so much of our past, present, and future. It steals our past because it taints the memories we have of our children--leaving us with the "we should have knowns" or the "if onlies." It steals our present because childhood cancer and its treatment are so monopolizing, ... consuming so much of our time... and energy. It steals our future because 

when our children survive, we are never the same and forever faced with the real possibility that it could return. When they don't survive, we're also forever changed and robbed of the future with them all together."