MRI Results

Well, we met with the doctor this morning to learn the results of the MRI Mac had on Tuesday. It was not the news we had hoped for, but it may have been a little unrealistic to hope of a miracle that the tumor was all gone with no trace left of the cancer. We were surprised to learn the scan was a bit “inconclusive”. I didn't know that could even happen. It appears from what the doctor could see that the volume of the tumor has definitely increased. In other words, the tumor has grown since the last scan on April 20^th, but is still smaller than the original tumor at diagnosis. The doctor also said he saw black area in the tumor which may indicate an area in the tumor that is dead. We are hopeful that this is the case! His doctor is going to try to get a new drug for him to try that is more effective than the one now listed on his protocol. The major hurdle is cost. Apparently, this drug is very expensive so some insurance companies will not pay for it. This was probably the most disturbing thing I heard today. Who would have thought in one of the richest countries in the world this would ever be said to parents. The thought of Mac not getting the most effective treatments to help him rage this war against his brain cancer because of cost makes me sick to my stomach. His doctor is optimistic we should be ok with our insurance though.

So although the results are not as good as we had hoped they could have been a whole lot worse. Mac is home, happy, and thriving right now and that is the most important thing for us!  

We have been having a wonderful week again with Mac. He is up and about and feeling good. He continues to improve daily and smiles more often. We were given a special gift on Sunday and were able to take the boys to their first Red Sox game! We went on a tour of Fenway which was fantastic. We were even able to watch batting practice from the field. The boys had an amazing time and so did Billy and I! It was so nice to forget about meds, IV's and cancer for an afternoon and pretend to be the family we were prior to January 17th. Some days are easier than others to pretend we will some day be able to return to our normal lives when the fact is our normal will never be the same. We have seen too many hurting children and met too many families broken by this disease to ever go back to who we were. Before I would have not given a second thought to people paying $40,000 each to have lunch with the President, now it makes me so angry that families have to beg friends for money and children sell lemonade to fund research for Pediatric Cancer. This just seems so wrong.

Liam is enjoying his vacation. I was so proud of him taking the past couple of rainy days to finish one of his Summer reading books. It is usually such a battle to get him to sit down with a book. I can still see the anxiety on his face over his brother's future but being home seems to have lightened it a bit.

The MRI is scheduled today at 2:45. Thank you for all the prayers and thoughts!

MRI

Mac's next MRI is scheduled for next Tuesday. We will meet with the doctor on Thursday to discuss results. Please keep us all in your prayers,

Great week!

Sorry I haven't updated recently. I have let time slip by and have been enjoying the past week at home with Mac. He did great during his last round of chemo. He was even able to participate in the Harbor Walk & Run last Saturday, the day after he was released from the hospital. They have changed the formula he gets at night and increased the volume by more than double. He is tolerating all of his feeds and there is a remarkable difference in his energy level!

Last Wednesday, Mac received an award at school. With very little help he was able to climb the stairs to the stage and accept his award to a standing ovation. I was overcome with emotions, pride in Mac, gratitude for the support from our school family, and sheer joy to see Mac with a genuine smile on his face for the first time since his diagnosis in January.

Although Liam has only been on vacation 3 days and 2 of them Mac has been in clinic he seems to be doing really well. You can almost see the physical change of stress be released off of him. I love to wake up in the morning and hear the two of them chatting and laughing together. There is no sweeter sound then the sound of children laughing.

We will find out tomorrow what day next week Mac will have his next MRI. I am trying to be cautiously optimistic but Mac has been more of himself this past week then he has been in 6 months. I pray that this is a sign of good news next week and great things to come for him.

June 8, 2012

Mac has completed 4 of the 5 days of chemo. He will finish up tonight and hopefully be home tomorrow. So far things have been going great (knock on wood)! Mac has been sleeping a lot in the hospital. He took a 6 hour nap the other day. I think this is helping him recover a lot. His little body has been through so much I think the sleep is what he needs. We were doing his mouth care yesterday. Which is cleaning his mouth with little sponges with saline water at least 3 times a day. He ha s come to greatly dislike this part of his days. When he spit yesterday a tooth came out! He was so excited the tooth fairy was going to come. The child life specialist came in and brought him some spy gear, which is a little handheld thing that shoots nurf like discs. He was thrilled! Dad came in last night to spend the rest of his stay with him and his face just lit up! He LOVES spending time with his dad. All in all this is been a really good week for Mac, considering all the chemo has been getting. His spirits are high and he is still smiling so we couldn't ask for more.

Liam is holding up well. He is so excited for school vacation and I have to admit I am too! I cannot wait to spend whole days doing nothing but spending time with my boys.

I am having a much better week this week. Last week was rough. I had a bit of a breakdown after hearing of the passing of one of the kids we met through clinic. I am finding this the hardest part. It is as if a piece of my heart breaks with every one I learn about. My heart breaks for the families and friends of these remarkable children and my fear grows for the future of my own. It was different when just reading statistics of glioblastoma   multiforme because I would always just say "but that isn't my Mac". Now as I see these strong, courageous children become angels I know that each and every one of them is somebody's "Mac".

Please continue your prayers for all the children, families and friends who lives have been affected by this awful disease. Thank you all for your continued support. I could never express how much it means to know that people are thinking about and praying for Mac. Thank you all for being my light.

Packing

I just finished packing for our next stay at the hospital. Mac has an appt tomorrow morning at 8:45 for an ECHO/EKG. I am hoping we will get to stay on the 6th floor in the Cam Neely Bone Marrow Transplant Unit again. If not, we will be on the 7th floor with all pediatric patients. Mac's team of nurses on the 7th floor are phenomenal but I do prefer being in the BMT where I feel more comfortable taking Mac out of his room for a little walk or bike ride. He will start chemo at some point tomorrow. Hopefully, sooner rather than later, but it seems this chemo never starts before 7 pm no matter how early we get in there. If all goes well Mac should be able to be discharged on Saturday. Sunday is the Harbor Walk and Run. Thank you all who have signed up for our team or donated in any way. It is greatly appreciated! There is still time to join the team or donate if anyone is interested!