04/23/2013

I wanted to take a quick minute to thank everyone for the overwhelming support and kind words we have received over the last week. We will continue to need your help and support during the last days of Mac’s life and even more in the years to come when we need to learn how to live in a world without him. He has always been the final piece in the puzzle of our family. I will never understand why Mac was chosen to take this journey or how we got so blessed as to have him in our family. We seem to have gotten control over his seizures and a good schedule for his medications to keep him as comfortable as possible. He was able to open his eyes yesterday for a couple of minutes and played a few rounds of thumb wrestling. Liam has been very quiet this past week. We have talked with him about what is going on but I think that he is trying to be the rock of the family and be strong for us all. I hope he will be able to talk to someone soon about his feelings but don’t know how to get him there yet. His social worker is coming Thursday so she may be able to get him to open up. I will try to keep everyone updated as best I can, but I am physically and emotionally exhausted and find it takes all my strength just to get through each day. I am struggling to even understand the emotions of fear, pain, and anger I feel and am at a loss for words as to describe our current world.

Mac is still resting. He had another seizure this morning. According to the hospice nurse she estimates his time here on earth to be only a few more days to a week. We have talked with Liam, but I am not sure how much he really understands, because to be honest, as an adult I don’t understand how this happens. Never would I have ever dreamed that on my 37th birthday that I would be calling our priest to arrange the sacrament of Anointing of the Sick or calling a funeral home to make final arrangements for my 7 year old son. I don't even know how to wrap my mind around the knowledge that Mac will never turn 8. The decision to bring Mac home the single most difficult decision we have ever had to make. In my heart I believe it is the right thing for him. The last 2 weeks Mac has not been himself. He has been weak, tired and unstable on his feet. Even before that he started getting very upset at the thought of going to see the doctors. He had had enough. The MRI on Wednesday showed regrowth of the 3 tumors he had surgery on last month, the original tumor is still there, and at least 3 new tumors have started since last month. He is in and out of consciousness so we continue to be able to tell him how much we love him. We have decided that continuing to pump poison into him because we were not ready to let go yet would not be in his best interest. Thank you all for the overwhelming words and acts of support and comfort during the start of our most difficult days. We will continue to need them over the next years because soon our family will be broken in a way that can never be fixed.

Heavy heart

It is with a very heavy heart that I update all of you. Mac will be discharged tomorrow and be brought home on hospice. We are going to try to make his little time left as comfortable as possible. Please pray for peace for Mac and strength for all of us during this incredibly difficult time.

HARBOR WALK & RUN

We have started putting together a team of walkers and runners for the Tufts Medical Center 2013 Harbor Walk & Run. Our team name is the Super Mac Attacks. Anyone interested in donating can follow the link to our team page. Any and all support is greatly appreciated!

Super Mac Team Page

Super Mac t-shirts!

Please consider purchasing a Super Mac t-shirt to show your support for Mac. All proceeds will go toward the Super Mac Attacks Floating Hospital Harbor Walk team at http://teespring.com/supermac!

Rough Day for Mac

It is never a dull day in our home. Yesterday Liam was sick so I kept him home from school. He seems to have recovered quickly and is back at school today. Mac on the other hand is really struggling. He has yet to recover from the stomach bug he had on Monday. He is so weak, shaky and unstable. He spends his time on the couch watching tv. Yesterday, he was left alone for a minute and this was when he decided to get up for something. I heard the loud bang and the screaming. When I ran in to see what was wrong I found Mac face first on the floor. He had a huge egg on his forehead, scrapes under his nose and his mouth was bleeding. Once he settled down he seemed to be ok, but still very unstable on his feet. A few hours later he vomited. I called the clinic and was advised to take him to the ER. After a little more than 6 hours, a chest x-ray, and a ct scan we were told the scans showed no major changes and cleared us to go home. Mac has a follow up appointment with his neurosurgeon and the clinic on Monday. As we sat in the ER, I could not help but wonder how our life got here. How is it that as a mom of 2 boys a slip and fall can stop my heart and sucker punch me in the gut? How is it that every resident that walks in here I already know and knows Mac? How is it that my rough and tumble son is so weak and small lying in the hospital bed? Today was a rough day that scared the life out of me. As Mac’s Nana and I walked him out to the car and got him settled he reminded me so much of the last time we all walked Papa out to the car. I am praying that this weakness is just due to his body being tired from being sick Monday and he will recover. Right now he cannot be left alone for a second for fear he will try to walk on his own again. Any time we leave the house it will have to be in his wheelchair because he is so weak and tired. Today I feel tired and overwhelmed.

04/08/2013

I have not posted in a while because things have been going so well. There have been days that we have been able to pretend we are a “normal” family. Of course, that is after we administer all of the medications, have the nightly feed ready to go, and my purse is packed at all times with syringes and Tylenol in case Mac gets a headache. Mac is eating so we can go out without me having to worry about timing it around his day time g-tube feeds and Mac’s energy has been high enough for short outings as a family. We have actually even to make plans for a few days out without feeling like we will jinx something. If there is one thing we have learned though it is that with every high comes a low. Our low came this morning. Mac woke up vomiting. This went on for about 45 minutes. He had a headache but was unable to keep down his Tylenol. He finally fell asleep on the couch after I was able to sneak in a little Benadryl hoping his runny nose and post nasal drip is the cause of the vomiting. He is very shaky this morning and a bit unstable on his feet. As you know his only symptoms pre-diagnosis were headaches and intermittent vomiting so this morning brought back all those fears about the tumors rapidly growing. I am calling the clinic this morning to see if the test results are in from the tumor marker testing and with these new symptoms feel they may have us come in regardless of whether or not the report is in. I am not really sure how to even express my feeling right now. I sat down and had a big cry once Liam was off to school. It seems like with every bad day we have the fear in the pit of my stomach gets bigger and I can actually feel my heart breaking a bit. I refuse to go back to the angry feeling I had briefly at the beginning of our journey but the fear and sadness never really goes away. I am so fortunate to have so many people supporting Mac and I cannot say enough about the guys on the UMass Lowell baseball team. Mac has been able to go to several games and each time I am more and more impressed by the way they interact with both boys. I am not sure what this journey would be like without all of our new friends. When we are at the games I see them as just two little boys watching baseball. It is the best thing for them because on mornings like this when all I see is a little boy fighting for his life and his best friend and brother struggling to understand why his little brother is so sick. This morning I pray for half of the strength and courage that both Mac and Liam have to try to get through this day and hopefully wake up tomorrow with us all at home to try again to pretend to be “normal”.