Latest scan results

Saturday Mike had treatment. We had to go into Dana Farber on Friday for him to get his labs done and to be cleared for treatment for Saturday. Luckily all was good to come back the next day. That night we rushed to get home to take Ava to her school for a father daughter dance. He wasn't feeling great but he made it happen like always. He's such an amazing father to Ava. On Saturday he finally started to receive his two chemo's again. We were very glad for him to be back on both. However his body wasn't as glad as we were. He was miserably sick for 3 days and struggled the next few. He had been doing so well after treatments so it was tough to see him so sick again. He also didn't have much turn around time before his next treatment (only 5 days).

Today Mike received his 42nd treatment. It was a very long day. We headed to DF at 9am and didn't get home until 8pm. He started the day off with a scan before his chemo. Since Ava is on school vacation this week she asked if she could come in with us. She really enjoys coming in. She loves to be involved with Mike and his treatments and likes to help out in any way she can. Her therapist and our social worker have always highly recommend her coming in. The research on this topic is extensive and agrees. When dealing with sick parents and children it is so important to keep the children a part of the process. It helps them learn, cope, and feel like they are included. Of course every family and child is different and it is always up to the parents and child to make those decisions. For Ava it has been VERY helpful. She is able to learn things in an appropriate and safe environment. The nurses and doctors are always so happy to see her. They are gentle with her. They take the time to explain things to help her understand. She even asked them questions all on her own. It makes Mike so happy when she comes in with us I love it too. She's my little side kick and helps me make Mike comfortable and at ease. Today Ava even got to help the nurse out by scanning the meds into the computer. She felt so important and it was truly a priceless moment. She had a huge smile on her face and wanted to help out more!

A few weeks ago Mike, myself and Ava got the opportunity to go into Dana Farber for a Parenting with Cancer group. It was put on by the social workers including ours. We were happy she finally got to meet Katelyn, our social worker. We met other families in the same situation as us. Ava had the opportunity to meet other children her age who had sick parents. We had separate sessions (kids had one group and the adults had another). Then we all came together and did a group session. We worked on an activity with our families. We decorated walking sticks. It went along with the theme of the kids session. They drew pictures of getting over a mountain of obstacles. The walking sticks represented our family tool to help us get over the hard times.  Ava also got balloons, books and lots of pizza... oh and I can't forget about the endless cookies! She was so happy to meet the other kids. She said it made her not feel so alone being the only kid with a sick parent. Overall it was a great experience and we all would highly recommend it to other families in similar situations. Dana Farber does a great job helping children who have sick parents. They provide many great resources and are always trying to help in any way possible.

Working on our project.

Showing off our project! Our family walking stick.

Today we had a lot of time in between Mike's scan and his treatment. We went to the café for lunch. Then stopped by the resource center. Ava picked out a book to take home and we went to the arts and crafts room. We made bracelets and paper flowers. Ava made a paper flower for Dad's doctor, his nurse and our social worker. The flower she made for his oncologist was even his favorite football teams colors. The Jets green and white! As we went through our day she passed her gifts out. She got tons of compliments in the elevators on how pretty her flowers were. She is so adorable.

Hanging out in the craft room

Ava with her flowers

After Mike got started with his treatment our social worker Katelyn came by to visit. Ava already loves her and has proceeded to tell her she's pretty many times she also told the receptionist she was pretty too, who then have her a cupcake rubber ducky. Ava's always handing out compliments and making everyone feel so good! Ava showed Katelyn all the good stuff she packed in her bag to keep her busy, including her cd collection.

Ava with our social worker

When her CD player batteries ran out the nurse came back with a baggy full of new ones. Such amazing staff. After Katelyn left we went to pick up Mike's medications at the pharmacy. We also stopped in the gift shop and got matching bracelets that read "Never never never never never ever give up". She picked out a kids activity book too. Back in the infusion room we colored together before grabbing dinner. Once Mike finished treatment we headed home. As we got into the car Mike started to feel sick. He started dry heaving. I always look to Ava when she's around and this happens. In the past when Mike has started to throw up she gets very upset and starts to cry as she hides her face in my tummy. Today was the first time she looked at me and said, Mommy I'm okay. A few days ago when I picked her up I had told her dad was at home resting not feeling well. She quickly asked was he throwing up. I said yes. She said, "It's okay I don't want him to feel like he has to hide being sick for me, I understand." I was blown away. As I sit here and write this it brings tears to my eyes. I hate how she has been forced to grow up so quickly but I am so grateful that she is in my life. Instead of her running away and hiding when Mike starts to get sick she now jumps in and says how can I help. Whether it's a cool cloth, trash barrel, or drink she's there. Sometimes I forget she's only 8 (well today she told every one she was 9 because her birthday is coming up. Her reasoning was it was easier to say 9 than 8... not sure what her logic was with that one!). She is so mature, brave, and strong. I tell her all the time. We talk about daddy's illness a lot when we are alone. We NEED each other. We both couldn't go through this without one another. Some days she needs me and others I need her. His illness has brought us so close together. We have an amazing bond that I am eternally grateful for. Between her and the puppy I'm never alone sometimes I feel like I have my own entourage when I walk in the room. Mike always laughs and calls us the trio.  

Chemo selfies

So here is what you all have been waiting for... Mike's scan results! Since we have been in this fight for a while now I have learned how to manage my scanxity (for now). Knowing Mike's tumor markers have been very low almost not detectable in his labs and knowing he has been feeling relatively well. I wasn't very anxious about this scan report. Something was telling me my feeling was right. Mike on the other hand was not feeling so good about it. He felt like being off of one of the chemo's for so long was a recipe for disaster. Luckily today my feeling was right. His scan showed no new growths and the current ones had decreased. Of course having it all disappear isn't exactly in our cards it was still a great thing to hear. Like I have mentioned in the past we live scan to scan. Now we feel like we can breathe easy for a couple of months. Thank you for all your prayers as always! Our support is truly amazing. My YouTube video has received over 1,600 views and this blog has over 40,000 views!

Our fear is always when will this treatment stop and we're at the end of our road. I shared this concern with his doctor today and he talked us through it. He even said there was a drug that Mike would be eligible for if his current treatment stopped. Unfortunately even he could not pronounce the drug name. It was all I needed to hear to get my focus back in check.

Mike and I have an amazing marriage built on love, communication, honesty, trust, and loyalty. We were one of the lucky ones to find our true love. Many don't get this opportunity or are stuck in toxic relationships. The cancer life is tough but our relationship makes it a little bit more manageable. My job in life right now is to care for my family. I give Mike and Ava my ALL. Even when my needs are not met and why is that? Because they deserve it. When their needs are met it allows me to lay my head down to sleep at night. The relationship that Mike and I have helps us lead by example for our daughter. Though cancer may be teaching her the hardest lesson possibly in her life that she will have to learn but it also teaches her one of the greatest which is true love. I can't make it all go away but I can make them comfortable and as happy as possible. The choices our family makes while WE are on this journey maybe not everyone agrees with but that's okay because we don't care what other people think... no one can break us. We have endured a lot through hell and back and nothing is going to stop us from the love we have for one another not even... CANCER!

On that note, NEVER, NEVER, NEVER, NEVER, NEVER EVER GIVE UP

This is an older photo but one of my favorite ones of our family.

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