The 1 Year Anniversary

Today is the one year anniversary of the discovery of Mac's brain tumor. I thought the day would come and go and be just like all the other days of our lives over the past year. But, for the first time in a while I feel like I am not ok. We had a rough start to the day and perhaps that is what is making me feel like I have no control over my life and am not even doing very well managing it.

Mac went in to Boston for another round of chemo. All of his numbers looked good but he has a double ear infection. So on top of all of his regular meds he is now also on ear drops and an antibiotic. I decided last night to keep him home today because he is exhausted and I wanted to get a full 24 hrs. of antibiotic in him before exposing him to the germs of school. I thought I was so on top of things this morning. I had all of his meds ready so once his overnight feed ended I gave him all his meds. I have no idea what I was bed. The tears and screaming started and Mac got up and headed to the bathroom. He took a few steps in; I heard a loud noise and louder screaming. I ran to find him flat on his back. He had slipped. Any parent knows the fear when they walk into a bathroom to find their child flat on their back, when that child also has a brain tumor the fear is indescribable.

Mac seems to have recovered. He took a long bath and will get his meds again shortly. Once I know he can keep them down. Some days I wish I had a child’s ability to rebound so quickly. Today will be one of those days that everything will make me cry. I cry for so many reasons and on most days accept this path we are on and just try to do my best to give my kids the best life I can given our situation, but today I am a little angry. Angry Mac is going through this, angry that Liam is so used to it that he doesn’t even flinch when he hears his brother getting sick, angry that we cannot be a normal family. So today, on this one year anniversary, I will have a little pity party for myself then pick myself back up, administer meds, give Mac lunch in his feeding tube, and continue to pray for a miracle.

January 10, 2012

Yesterday we headed into Boston for Mac’s clinic appointment. We started out the door and as I was closing the door I watched in slow motion as Mac slipped on the ice and slid down our front steps. Luckily, he had a little backpack full of Star Wars guys on that prevented his head from slamming back on to the steps. After a few minutes the screaming and tears ended and we were in the car and on our way. We arrived at 10:45 for our 11:00 appointment. Mac was checked in and then we sat and waited. Finally, at 12:40 Mac’s port   was accessed and his blood work was sent to the lab. Mac went to meet with his psychiatrist and we returned to clinic to find out that his platelet numbers were up, but not quite as high as the dr would like them to begin his temozolomide and lomustine chemo. We will head back next Wednesday to hopefully get back on track.

We are all doing well. Living in one of the “highs” with everything going as we plan and hope without any major setbacks. I am trying so hard not to worry about the day that is coming when we get knocked back to reality and hit a roadblock. We will face it as we have everything over the past year, but for now we are more than happy to keep going as we have.

I worry a bit about Liam. He doesn’t seem to want to do much with kids his own age and is happy to spend time with adults. (This may be because we have the best friends and family in the world who always make him feel so special.) He has always been an old soul, but with all that has happened I just wish there were times he could escape this life for a little while and just be a regular 9 yr old boy playing with “regular” kids who live in “regular” families that don’t have a whole cabinet in their kitchen full of medicine and medical supplies, an IV pole in their child’s bedroom, and talk about g-tube feedings, MRI’s and blood counts in everyday conversation. He is such a great big brother to Mac, but when I look at him now I can see so much worry and sadness in his eyes that was not there this time last year. He has had to grow up so fast and sometimes it just breaks my heart knowing how much he has had to sacrifice because of cancer.

As January 17^th approaches I am focusing on all of the miracles we have received over the last year that has allowed us to all be here, together, doing as well as we are. We have been blessed with amazing people in our lives being in the right places at the right times to not only recognize and treat Mac’s symptoms, but to recognize many of the needs Billy, Liam and I have had along this journey and without a word just doing what needed to be done.

 I have learned so much and changed so much over this year. None of us will ever be the same, and that is ok.  There is so much we know now that we didn’t know then that more people need to be aware of in the world of childhood cancer. I have been following many children’s battles on facebook and am always shocked when I read a parent share that people have been offended by pictures they post of their child in the hospital on “down” days. I think people see the children on commercials for St. Jude’s and other places as the face of childhood cancer. They see smiling children who have lost their hair and think that is the worst of it. Unfortunately, childhood cancer is watching your child lay in a hospital bed as poison is pumped into them. Poison that nurses cannot even handle the bag of without special gowns and gloves. Poison that parents have willingly chosen to pump directly into their child knowing it will make them feel awful in the hopes it will save their life. Childhood Cancer is watching your child get sedated 33 times so that he can be bolted to a table with a mask over his face so that the tumor on his brain can be radiated. It is missing birthdays and holidays because of hospital stays. It is parents trying to balance caregiving for the child that is sick with being there for their other child. It is trying to balance a family budget that now must rely on one income. All while trying to put a smile on their face so that people don’t see the “reality” of what is really happening in their new world of Childhood Cancer.

I hate that my family is going through this. I hate that any child is made to suffer the way these children are made to suffer. Most of all, I hate that all of this could be changed but isn’t. I may never teach in a classroom again, but I will never stop trying to teach others about what it means to a family when they hear the words “Your child has cancer.”