Christmas

Christmas has arrived. I had hoped that what little Christmas spirit I had a month ago would gradually increase. That did not happen. I find myself going through the motions of wrapping gifts and baking cookies when all I really want to do is crawl under my blankets and wake up when it is all over. Nothing is the same without Mac. By this time I should have heard him sing “Santa’s coming tonight tonight. Santa’s coming tonight” at least a hundred times. It seems when I lost by son I also lost the joy and innocence this holiday should bring with it. I somehow got through wrapping Liam’s gifts last night. It is heart wrenching to see only half the number of gifts then there should be. The realization that we no longer had to write names on the gifts to tell who’s was who is yet another reminder of how much we have lost. Billy found our video camera while cleaning out one of the closets. I sat and watched Mac from Christmases past open gifts. His enthusiasm was contagious. My heart breaks into tiny pieces every time the realization hits that I will never see that smiling face with the sparkle of mischief in his eye again. I am again reminded of how perfect our life was once and that we will never feel that happiness again because someone is always missing. This year there is nothing happy about this holiday or merry about our Christmas. I am just trying to get through it. January 17th will bring the 2 year anniversary of Mac’s diagnosis. Please this year take a minute to forget about all the stuff you could not get or all the messes and fighting your children do to just be grateful for them. There are so many families hurting this holiday because of the loss of a child. Pray for us all to be able to breath and put one foot in front of the other.

A letter to my son

My beloved son, Today marks 6 months since I last held you. It has been 6 months since I held your hand as you passed from this life to the next. Six months since I felt your last heartbeat. Six months since our family has been whole. Nothing is the same without you. Our house is void of genuine joy. Where you used to be now is just loss and pain. I wake up every morning and as I open my eyes and look through my doorway, down the hall to your empty bed the pain hits again and again. I am so afraid to forget your smell, the way you felt when you would wrap your arms around me and hug me as tight as you could, and the way the sparkle in your eye would always give you away when you were up to your mischievous ways. We are each dealing in our own ways but are far from getting through this journey with an ounce of the courage you showed in your short life. I would give anything to have you back. You were the best of our family and without you we are lost. Things that used to be so easy like eating and sleeping no longer come easily. Just getting through the day is a daunting task without you here with us. I am a broken shell of a person without your physical presence to teach us how to live each day letting only the truly important things matter. I feel like our family is now a triangle trying to fit into a square peg. Nothing feels right anymore. Please watch over us and guide us through this last leg of your journey. You will forever be one of the loves of my life. I hope you can feel my love where you are and know how very blessed I am to have been chosen to be your mom. You are one of my greatest accomplishments. “I will love your forever, as long as I’m living my baby you will be.” I love you! XOXO Mom

Halloween :(

It has been a very long time since my last post. I have been putting all of my energy into putting once foot in front of the other each day and trying to just make it through the day. Some moments are easier than others but with Halloween approaching it has brought on a new level of grief. Halloween was always Mac’s favorite holiday. He was driving force behind our choice of costumes and the excitement over decorating, getting dressed up and the sheer joy on his face on Halloween morning was one of the greatest memories I have of him. I still have a hard time believing I will never see that smile again. I will never spend hours with him looking at costumes online, while he changes his mind a hundred times until finally deciding on the perfect one. I hate that this year instead of buying him a costume with all of the accessories we are buying things to put around his stone at the cemetery. I am doing my best to get excited now that Liam has finally decided to dress up, but it is so difficult with a piece of my heart missing. The physical pain of missing him some days is overwhelming. Liam has not yet decided if he wants to go trick-or-treating, but in all honesty, I am not sure I have the strength to go with him if he decides he does. Liam has been incredible. He has been the heart of our family for the past 5 months. He misses his brother and is able to talk about him, but has not yet decided he wants to talk about the pain he is feeling with me. Our family is broken and we will never again be who we used to be. Halloween marks the beginning of our first holiday season with Mac. The pain and anxiety over the anticipation of Halloween, Thanksgiving, and Christmas without him is unbearable. I would give anything for just one more day with him to hold him, tell him how proud I am of him, and how much I love him.

Back to School

It has been a long time since I have posted on the blog. I am hoping that if I post some of my feelings over the past couple of weeks it will help to get me out of the funk I am in. I have been so emotional the past couple of weeks, breaking down into tears several times a day. It has been so hard to go the “back to school” shopping with only 1 supply list, one person to buy new sneakers for, and one person to talk up the new school year to. I came across the photo I had taken of the boys last year on their first day of school. They both looked so happy. I guess I always knew in the back of my mind that it was possible that it would be Mac’s last day of school, but had no idea of the heartbreak that would accompany the start of a new school year without him. Each day that brings us closer to Liam’s first day of school, I get deeper and deeper into this dark place I find myself. I am so exhausted at the end of every day. I wake up and for a split second and feel ok. Then it hits. Mac is gone. I spend the rest of the day trying to put the million pieces of my heart back together, knowing one piece will never be found, while at the same time trying to pretend that I can actually handle this life. I know that Mac is now out of pain and in a far more wonderful place than I could ever imagine, but I miss him so much and he took with him his smile, his laugh, and his mischievous grin that can never be replaced. I thought the hardest think I would ever have to do was to tell Mac that it was ok for him to go, that when the angels came for him to take him home to go. I am now finding that living without him his by far the most excruciatingly painful experience.

July

July has proven to be much more of a roller coaster of emotions than I ever expected. I knew the 4th of July would be difficult. It was the first major holiday without Mac. We got up early and I drove Liam and Billy to drop them off for the parade in town Liam was participating in. As soon as I drove away the tears started. I found myself kneeling at Mac’s grave sobbing loudly. This past Saturday we finally had the birthday party Liam has been patiently waiting for since last April. I was so busy getting ready for it I thought I was managing my emotions. That was until I found myself alone in my car running an errand. The tears came uncontrollably again. I have begun to recognize some of my triggers but know I will never know all of them. At a recent wedding I was having a great time. They started the father- daughter dance and suddenly I found myself on the verge of an anxiety attack. I went out to get some air knowing what came next. I would never be able to stand there and watch a mother –son dance without having a complete meltdown. We are on a new journey now, but much like Mac’s journey with cancer this one does not come with a roadmap either. Mac’s birthday is next Monday. He should be turning 8 years old. Instead of singing happy birthday and buying him presents we will be sending him balloons in heaven. I believe in my heart that Mac is in a better place. I know I will see him again and until that moment I have decided to get up every morning with 2 goals for myself for the day. The first is to get through the day so that at the end of it I can feel like Mac is looking down on me proud to say I am his mom. The second is to get through the day without Liam ever feeling for one minute like he is not enough. I get up each day and continue moving forward. Some days are easier than others, but I have no choice. I have 2 boys that need their mother. On July 22nd please try to take one moment to think of both Liam and Mac. Say a quiet happy birthday to Mac and ask that he watch over his brother as we struggle to get through the first birthday without him.

07/01/2013

It has been awhile since I have posted on here. The truth is I am not really sure what to write anymore now that I have no updates to post about Mac. We are adjusting to life without him, and with the start of July so many emotions have begun to flood through me. July is the month we have always taken our family vacation, Mac has always loved the 4th of July, and on the 22nd we will celebrate what would have been his 8th birthday. When I say I miss him terribly it does not begin to describe how much I ache to hug him, here is voice and kiss him while he rolls his eyes at me. I have accepted that my heart is broken and will be forever. I am so blessed to have so many amazing friends who allow be to talk about Mac while they listen and share their own stories. I am blessed to have Liam who has shown me what true faith is about. I will continue to talk to Mac each day; I just wish he were here to answer me. I know he is with me, watching out for me. I draw my strength from that knowledge, but there are days I would give anything to have one more moment with him. I believe there was a reason he was chosen to carry such a big burden on his little shoulders and I believe he is happy hanging out with his Papa now, because the truth is if I didn’t all of the pain we are feeling right now would be for nothing and that is just not something I could live with.

06/11/2013

I cannot believe a whole month has gone by since I last held and kissed my baby. When he was diagnosed I tried so hard to only cry when I was alone so as not to scare either of the boys. I know he is with me when I cry now. Especially during those times when I lay on his bed clutching his favorite Iron Man sweatshirt in one hand and the radiation mask he wore that is molded in the shape of his face in the other, crying so hard I lose my breath and feel sick to my stomach. I know he hears me when through sobs I cry out for help to have the strength to not only go on without him but live in a way he would be proud to say I am his mom. The last month seems so long I cannot imagine what a lifetime of missing him will feel like. I am so grateful to have such an amazing group of friends and family who would give up their Sunday to walk in his honor, donate in his memory, and most importantly not only allow me to keep talking about him but to have never stopped saying his name in front of me. For that I can never thank you enough and because of that I know I will get through this and come out the other side forever changed but not forever bitter. The world has continued to go on regardless of our grief but to have so many people surround us who stop and drop everything and allow their world to pause for a moment to hold me up when I am falling and hug me even when I push them away is a gift I can never repay. Thank you to all of you who have accepted the “new me” with open arms and have helped us to honor Mac over the last month and hopefully will continue to over the many years to come.

06/06/2013

Well, Tuesday will mark the 1 month of life without Mac. I miss him more and more with each passing moment. It truly has been a roller coaster of emotions. I go from fully functioning to being unable to breath from sobbing so hard to back to functioning in a matter of moments. Our house is so different without him here. I have been busy trying to make plans to keep Liam busy all summer so that the loss of his best friend and confidant is not apparent every moment of every day, but that is like putting a Band-Aid on a broken bone. We are walking in the Floating Hospital Harbor Walk on Sunday. I am overwhelmed by the number of people who have signed up to walk with us in honor of Mac. I am not quite sure how I will feel that day though; seeing so many of the people who have become integral parts of our lives throughout Mac’s treatment but we no longer see. Last year we walked as a family. Mac was right out of inpatient chemo, but we were together. This year I know Mac will be with us, but I miss his physical presence. I hope he sees how many people are there walking to honor him and the way he lived is life. I hope he sees how very proud I am to have been chosen to be his mom. Most importantly, I hope he knows that even with all the hurt and heartache I feel now, if given the choice to do it all over again, knowing how painful it would hurt in the end, I would say yes in a heartbeat because every moment with him was worth it. There is still time to join the Super Mac Attacks on Sunday or make a donation. 100% of all donations will go to the Pediatric Hematology/Oncology Clinic. The link is below: http://www.harborwalkrun.org/faf/search/searchTeamPart.asp?ievent=1059496&lis=1&kntae1059496=C84098F6D61B4371A5CAECC6624D8F03&team=5447416

05/22/2013

I cannot believe it has already been a week since we said our final good bye to Mac. I miss him every day, think of him every minute, and love him every second of every day. I would give anything to just be able to hold him one more time. There are moments in the day when I feel motivated to continue the work he started of living every moment of every day seeing the joy and love in it. Then there are moments when I walk into his room and can still smell him and feel him. Every day for the split second when I wake up, before I remember the last month, I think he is still here with us. Then I become crippled with fear for a future without him and pain for what we have lost. I know he is flying around up in heaven in his Iron Man costume doing all of the things cancer robbed him of doing in the last 16 months of his life. I just wish I could hear him tell me he is happy and that the choices we made for him were the right ones. I never expected to feel all of the guilt that comes with child loss. Guilt over lost moments that phones and computers could have been put down to watch SpongeBob, guilt over not being able to pick myself up at times to show Liam we will be ok, and guilt over trying to put together a life without him. Mac is the first person I talk to every morning and the last person every night. He is the person who completed our family and showed us all the true meaning of being a hero. I miss him so much it is unbearable at times, but the time we had with him was a gift that I would not trade for anything in the world.

05/17/2013

I have started to write a new post many times over the last several days but after two or three sentences I find I cannot continue. I have nothing to say. There are no words to explain the feelings we are all going through here. Heartbroken doesn’t seem quite right because it almost implies that someday our hearts will be repaired. I feel like my heart has been shattered into a million pieces. Over the next several months and years I will work to gather up all the pieces and put them back together. The only problem is one of the pieces will be missing. My heart will never be the same. I will never be the same. My family will never be the same. Someday I hope to be able to think back at all the good times with Mac and look at his pictures without bursting into tears. That day is not today or anytime in the near future. I know it will take time but the thought of living so many moments without him is excruciating. So today I will try to pick myself up and get through the day that seems so long while pretending I am ok.

05/12/13

I want to thank you all for the many prayers send on our behalf. Mac passed away last night surrounded by love. I hope at some point this will bring me comfort. We will all now try to move on while thinking of Mac every day, missing him every hour and loving him every second. From this day forward I will try to take the many lessons of courage, strength and love that Mac has taught me to become a better person and fill the hollowness I now feel. We are devastated by the loss and ask that you continue to pray for our family.

05/11/2013

Thank you to all of you for the continued love and support. Mac took a turn for the worse on Wednesday night and his hydration was stopped. When the hospice nurse came on Thursday morning she advised us that all signs pointed to him passing at some point during the day. It is now Saturday and Mac is still fighting on. We have had a couple of incidences where we thought it was his time, but he came back to us both times. I have no idea what is keeping him here. I had been praying for peace for Mac when his time came but quickly learned there is nothing peaceful about watching your child die from cancer. With each passing moment it gets more and more difficult to see him in this state. His coloring has turned blue, he has sores all over his body from being in bed for so long, he has lost a lot of weight and although his body is here still fighting, Mac, our Mac, left us a while ago. I am trying to come to terms with the fact that I will never see him smile again, never hear his voice, never watch him roll his eyes at me. I would give anything to change places with him. I would give anything to have 1 more day before he got sick to spend together as a family before knowing all we know now. I am forever changed by the many lessons Mac has taught me and feel so privileged to have been chosen to be his mom. As Mother’s Day approaches think about all the moms who have lost their children and spend some quality time with the children in your life.

05/06/2013

Mac is still hanging on. I don’t know why I am continuously surprised by the sheer strength and determination of such a little person. We have had to significantly increase the number and dosage of his pain medications. Even the smallest of movements cause him to moan in pain. Today we had oxygen delivered since his numbers were down. The nurse advised me this would not prolong things, just keep him more comfortable. I thought when the decision to bring him home on hospice was made that it was the most difficult thing I had ever done. Now as I sit next to him, holding his hand, watching him struggle to breath, wither away to nothing and cry in pain I realize THIS is the hardest thing I have ever done. The scariest part of knowing that is the realization that this is NOTHING compared to having to learn to live without him here with us every day. Liam was the first person to teach me what unconditional love felt like. Mac was the one who taught me how to just enjoy every moment of life, regardless of who was watching. He would break out into a dance anywhere and everywhere, he wore costumes year round and he pushed every button in me at one point or another just because he knew he could. To see him so lifeless and unable to communicate is breaking my heart more and more with each day. I pray for a peaceful transition for him and the ability to make it through this devastating experience and come out the other side with the ability to still be a good mom for Liam.

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”.

Happy Easter

Mac is still home and eating us out of house and home! He has been doing so well over the past week. He has had a few headaches which responded very well to just Tylenol. Wednesday morning he woke up and had a headache. I gave him Tylenol which did not seem to touch the pain. After about a half an hour I gave him some Ativan. We don’t have didn’t have anything stronger for the pain. He seemed ok after a little while. We traveled into Boston for his appointments. His headache returned when we were at clinic and quickly escalated to the point of him screaming and crying. No one at clinic had ever seen him in so much pain. The Neurologist quickly came in and ordered some morphine for him. He said there is no reason for anyone to be in pain for something they can quickly fix. He slept for a few hours while the sutures from his head were removed and I met with his doctor. We decided to go ahead with the Vincristine chemotherapy that was scheduled for the day. I also got a prescription for a pain medication to have on hand, but was told to call and come in if the headache returned with the same amount of pain. At that point they believed his brain was still trying to settle down after be manipulated in surgery and the fact that he was not at home and surrounded by people he did not know very well was the cause of the pain. If the headache returned they would do a CT scan but were pretty sure they would not find anything. Mac has not had a headache since and is in great spirits. Yesterday the boys were officially drafted onto the UMass Lowell River Hawks baseball team through Team Impact. They attended practice and Liam participated in batting practice with a lot of help form the guys. They were given their own lockers and are looking forward to attending the first home game on Monday! I had a nice chat with Liam yesterday on our ride home from school. He asked me if I missed teaching. I explained that I did miss it but am glad I am able to be home to take care of them when they are not feeling well. I also told him that most of all I missed our old life. He said “do you mean before Mac got cancer?” I said yes. He looked out the window and said sadly “me too”. I have been doing a better job of living in the present and not dwelling on the life we used to have or what the future hold for our family. The tears still come, but no longer daily. I felt so blessed this morning to be woken up my Mac in my room asking me for breakfast because he was hungry. When I came downstairs both boys were sitting together on the floor playing Legos. I could not help sheer joy I felt. Even with the dirty dishes, piles of laundry and bills to be paid, and all the cleaning my house needs I thought “this is what life is all about”. We used to take so much for granted in life, worrying about the trivial things. This year instead of stressing over having the perfect Easter all we hoped was that we would not be coloring eggs in the hospital and that both boys would wake up together, at home. We pray the Easter Bunny this year will make one stop at our house instead of having to make a 2nd stop for Mac at the hospital. I cannot help but feel selfish for this, knowing we should just be grateful to have Mac with us at all. So many families will wake up Easter morning with a hole in their heart that will never be filled. Too many families will just try to get through the day missing their angel who was taken far too soon. This Easter please keep Mac, our family, and everyone whose lives have been touched by Childhood Cancer in your prayers. Hug the children in your lives a little tighter. Most of all be grateful for all the miraculous things in your life instead of thinking of what you do not have.

3/21/13

Mac is home after a very long week! I cannot find the words to describe the joy I was feeling driving out of the parking garage yesterday when I looked in the rearview mirror and saw Mac’s smiling face. He is still uncomfortable with the bandage on his head covering the incision site and has been having headaches. Liam was a little surprised when he saw the bandage and had a long talk with Billy last night about some of his thoughts and fears about Mac and his cancer. Last Friday was one of the hardest days of my life. Watching Mac have a seizure they could not bring him out of and intubate him was one of the worst things I have ever experienced. I could stop the thoughts in my head from questioning if we had done the right thing in putting his little body through another surgery. Should we have just done the proton radiation? Should we not have pushed so hard to try to get samples in order to get tumor makers? Did we just go too far this time? There is nothing worse for any parent than looking back on a decision and wondering if you did the wrong thing. Mac has been having some headaches. Yesterday he had a pretty bad one and was crying. I climbed into bed with him to hold him. I knew it was bad when he let me lay with him. He said “Why is this happening?” I had no answer for him. I do not know why he has to go through this and may never know. For now we are just trying to get through each day with as little pain as possible. We are trying to get his strength back up so that he can start chemo again, which will put his body through a new hell. We are so fortunate to have so many people supporting us and helping keep Mac’s spirits up. We now are holding our breath and praying this year we will be able to color eggs for Easter at home and both boys will wake up on Easter morning together at home where they belong instead of separated because Mac is in the hospital.

Another good night

I just got an update from Billy. Mac had another good night. He is having a hard time sleeping with all of the leads for the EEG on his head and is still sleepy from all the meds and sedation but besides that doing well. He was very happy with the gifts from the leprechaun! The plan today is to clamp the drain that is in his head to drain his spinal fluid to watch to make sure the pressure does not build up in his head. If all goes well they will remove the drain tomorrow. They will also remove the EEG leads so hopefully he can get some rest. If all that goes well he will be moved out of the Pediatric Intensive Care Unit and into the Bone Marrow Transplant Unit if they have a bed for him. If not, we will be going up to the 7th floor. Fingers crossed the BMT has a bed! I had a great day yesterday with Liam. We watched a couple of movies and Cousin Carragh brought over a full corn beef and cabbage dinner for us! One of the movies we watched was Rise of the Guardians. I hadn't heard too much about it, but Liam and I loved it. It also could have been that it has been too long since I have put everything aside, cell phone, computer, and any other distraction and just watched a movie with him. I will definitely be doing that more often! This morning I am gong to be packing up for another week in the hospital with Mac. I hear we may be getting another storm and kept help but hope for another snow day for Liam! He has standardized testing this week and I'm not sure if his head will really be in it. Also a bit saddened to learn he will still have homework this week. With all he has been through I was hoping he could just come home after school to relax and be a kid while our family is apart and our schedules are all off. He has been through so much... Thank you all so much for all the prayers. I know they are being heard and have faith they will be answered in a way that will bring Mac home soon and feeling good. He has a lot of UMass Lowell baseball games to attend to cheer on the River Hawks!!

Overnight

I just spoke with Billy about how Mac's night went. I went home yesterday to get some rest and spend some time with Liam. Mac was stable overnight and surprised everyone with his ability to follow commands under sedation. He was even able to communicate to Billy when he had to go to the bathroom! His brain is telling his kidneys he has too much sodium so his body is not producing enough at this time but they are giving him supplements. They seem to have gotten his temperature under control and did not suffer any new seizures. The plan for today is to remove the breathing tube and bring him out of sedation. Hopefully it will be smooth sailing here on out!

3/15/13.... A scary day

Today I can only describe as one of the roughest of my life. Mac had been experiencing some high temperatures and intermittent seizures that were lasting a few minutes at a time. Each time Mac’s eyes would deviate toward one side and he would become unresponsive. This morning after the seizures began to increase in severity and number they decided to send him for another CT scan. Then they were getting ready to bring him down he began with another seizure. Only this time regardless of the medication they gave him they could not bring him out of it. His temperature spiked to 105. They had to intubate him to stabilize his breathing and sedate him. The scan showed no area of concern which put aside the fear of a major bleed or stroke. At this point they believe he has an infection causing the high temps. The high temps may be the cause of the seizures. They started an antibiotic and were able to get his temp down to 99.5. He continues with the breathing tube and remains sedated to rest comfortably. He will have an EEG overnight since there is no way to know if he has another seizure now that he is sedated. The doctors are hopeful Mac will not experience any long term effects from the seizures. We pray they can get the infection under control and put an end to these episodes.

Day 2-post op

Mac gave his nighttime nurse quite the send off this morning. During his hourly neurology check she noticed his eyes were off to the right a and he would not look when his name was called or respond to commands. His blood pressure and temp also went up. She immediately paged neurosurgery who ordered a CT scan and were here in minutes to examine him. It was feared he had a large bleed in his brain, had a stroke or seizure. Upon review of the scan they said everything looked as expected. He has a lot of swelling due to the surgery and this is around the time the swelling peaks before starting to go down. They increased his dose of anti-seizure medication and will be given platelets as those are low too. His poor nurse finally got to go home over an hour late but not before coming in to kiss him goodbye and say she was off for the next few days but would call in to check on him. Hoping this was just a quick bump in the road and we will continue with a smooth recovery!

Today's Surgery

As usual, Mac was extremely strong today. After five hours in surgery, his neurosurgeon came in to report that Mac did very well and that they were able to remove as much of the three new nodules as was safe. They will send samples out for testing to help inform Dr. Wolff's decisions around a new treatment plan.

Mac looked great when they brought him up after recovery. When mom and dad called his name, he opened his eyes. He was, however, still exhausted from his exciting week in LA, so he spent most of the afternoon resting with "Gorilla 1" and "Gorilla 2." Dad had a stack of Tom & Jerry DVDs ready to go whenever Mac was ready and mom was heading out for ring pops, which was Mac's first request upon opening his eyes.

While we were waiting for Dr. Heilman this morning, mom got an e-mail from Robert Downey Jr's team asking when was the best time for Robert to call Mac tomorrow. It is so amazing to know that so many people, some of whom Mac has only recently met, and many of whom have never met him, are thinking about him. Thank you to everyone who has joined us on this journey. Your support and prayers are appreciated!

Hopefully Mac will have an uneventful evening in the PICU and be ready to be moved to a new room tomorrow.

Amazing Week!

What a week we have had! I cannot thank everyone enough for all the support in helping Mac have his wish to meet Tony Stark/Iron Man/Robert Downey, Jr come true. We are so blessed to have met him incredible selfless people who had never even met Mac extend themselves to make it happen. We learned on Wednesday afternoon that we had been given the go ahead by Dr. Wolff (oncologist) and Dr. Heilman (neurosurgeon) to fly to LA on Thursday morning. We had the privilege of going to a reshoot of a scene from Iron Man 3 and meet Robert Downey, Jr. I was not sure what he would be like in person as compared to the talented man seen on screen. He was just as amazing in person. He was funny, empathetic and just a genuinely kind man. We are forever indebted to him for bringing such joy to Mac. While we were in LA we also spent some time at Universal Studios and went to the Santa Monica Pier. We all got a chance to put our feet in the Pacific Ocean for the first time. It was an amazing weekend that we will remember with fond memories for the rest our lives.

We finally got home at 10pm tonight. I am just waiting to throw some clothes in the dryer then off to bed. We will be heading into Boston tomorrow for surgery. We have to be there for 6 am then surgery is scheduled to begin at 7:30. He will also have his ear tubes replaced before the neurosurgeon begins. Surgery should last about 5 hours then he will be sent up to the PICU for recovery. We are hoping to just spend 1 night in there and then be moved to a room elsewhere. If all goes as planned (which we know rarely happens) he should be discharged on Saturday. Then we will wait a couple of weeks for the tumor maker testing results to come back. Once Dr Wolff has that information he will put together his new protocol.

This week will be a long one. My body is not going to know what time or day it is going from east coast time to west coast time then back to east coast time and tomorrow we will be on hospital time. I will try to keep this blog updated as much as possible but as long as he is in the PICU I will not have internet access.

Thank you all for the many prayers!!

03/05/13 Update

Yesterday was a big day for us. Nothing really happened medically, but Mac stayed in school for the whole day! I cannot remember the last time that happened. When he came home he said he had a good day and although he was not happy to have to go back again today he did. I am so glad he is feeling well enough to spend some time with his classmates before being out of school for a bit.

I had a long talk with Liam and when I say talk I really mean I pushed and pushed until he was in tears. I try to let him come to me when he has something he wants to talk about but I knew there was something going on. I have been trying to get him to spend time with some friends outside of school and have offered to invite people over to the house but he always says no. Finally, through tears he told me he didn’t want anyone from school coming to the house because he is embarrassed. He doesn’t want the kids at school to see his house and be around Mac because it is so different than everyone else’s. He is embarrassed when Mac cannot find the right words when he is upset and throws a fit, embarrassed that our house is so full of medical equipment and our routines to help Mac include IV poles for g-tube feeds and embarrassed that when we do go out as a family it usually means leaving early because Mac has had enough and is not feeling well. It was heartbreaking to see him feel so bad about expressing his feelings because he did not want to have them. I explained to him his feeling were never wrong. He has a right to feel whatever he feels. I know that no child in his class would ever say or do anything to make anyone feel bad about our situation, but an almost 10 year old doesn’t see that. He just see’s that our life in no longer “normal”. So this is my new “project”. I am trying to think of ways to help Liam see that although our home is not the same as most it is still a place for him to feel safe to express his feelings and I am hoping if we can do some activities outside of school with a few kids then maybe he will feel comfortable enough to invite them over.

Mac has surgery a week from today at 7:30 am. It should last about 5 hours and his surgeon explained it is not as complex as the previous surgeries but it is still brain surgery. Never in my life did I ever expect to be planning and prepping for brain surgery for my son, let alone a 3^rd one. I am not sure how or why our life has gotten to this point but for now we are managing ok. We have such an amazing support system between our family and friends I cannot even imagine what this would be like without all of you. As I think back to our life pre-diagnosis and I realize we really did have it all. It’s just too bad it takes risking losing it all to make a person realize it. So today I am going to grateful for another day and thankful for the chance to continue making our “new normal” as comfortable as possible.

02/25/13 Update

We all had a wonderful school vacation week. I was really hoping to get one more day with the boys at home today, but the storm was nowhere near what was originally predicted. They had a great time on Saturday night at the UMass Lowell hockey game meeting all of the Star Wars characters.

We have a somewhat busy week coming up. Tomorrow morning Liam is going for an orthodontist consultation….hoping that the situation with his teeth will be something to just watch for a little while an not one where action is needed immediately. Mac has his occupational therapy tomorrow evening, clinic on Wednesday, and then we head back in to Boston on Friday for all of his pre-operation blood work, meet with the neurosurgeon & anesthesia, and another MRI. If all goes well we are still scheduled for surgery on Tuesday, March 12^th.

I have to make a call into the clinic this morning. Mac has been experiencing a lot of stomach pain and vomiting since starting on the new medication, Metformin, last week. I am not sure if this is a usual side effect or something that needs to be addressed. It is heartbreaking to watch him wake up every morning screaming and vomiting into a bucket because of medication that is not meant for children, but is our best hope at the moment of fighting his cancer.

It is sometimes hard to think back about our life “pre-cancer”. So much has changed that has made us better people in some ways but so “abnormal”. We spent our vacation going to so many doctor appointments while I see so many posting about time spent tubing and swimming at various places. I could probably take the boys sledding, but until I have a bubble to put them in my fear far outweighs any fun they may have and public pools are out as long as Mac has his port. Things I would have never thought about before. I know in my head that what we are going through was unavoidable, but all parents know even those things that are out of your control can cause guilt. Guilt over not being able to plan fun outings because of restrictions based on Mac’s health and medication schedule, guilt over not being able to give the boys a more normal childhood, and guilt over not being able to make things better for my boys.

Still waiting to hear from Make-A-Wish about Mac meeting Iron Man/Tony Stark (Robert Downey, Jr). We were hoping to do it before the surgery so that Mac would be feeling good since after surgery we have no way of knowing the effect the new protocol will have on his little body. Since his wish was made back in October and we still have heard nothing it doesn't look like that will happen. We talked to Mac about making another wish and this is all he wants. I am not sure if RDJ will grant the wish or not, but for now we will just sit and wait. I still believe in the good in people and am hoping he either has not gotten Mac's information yet or is just busy.... I would hate to have to boycott Iron Man 3 ; ) I don't know how to get his attention so if anyone has any ideas please let me know!!

I will continue to update as we get closer to the surgery. Thank you all!

02/20/13 Update

Today we met with Mac’s Oncologist and Neurosurgeon. We have taken Mac off the oral chemotherapy he had been on since his cancer has built of a resistance to it and it is no longer effective. We are going to go ahead with surgery to remove what we can of the new tumors and send off samples to Texas for some tumor marker testing. I am not sure of an exact date of surgery yet, but if surgery goes as expected he would recover for one night in the Pediatric Intensive Care Unit and then be moved elsewhere for another 3 nights. Until the genetic testing information is available we are going with a new protocol that as his doctor explained “is just picked off the shelf”. He is starting today on his new medication, Metformin. My understanding is that this is generally used to treat diabetes but has started to show positive results in cancer patients. He cannot start on all of the new drugs at once in case there is a reaction. It is much like introducing babies to food. You can only do one at a time so that if there is a reaction you know which one caused it.

I will post as soon as surgery is scheduled. Thank you for your continued support.

Roller Coaster of a Week

This week has been a roller coaster ride to say the least. We have had our ups and downs with the week starting with us feeling very up because Mac has been feeling better than he has in over a year. The down came with the unexpected MRI results showing the reoccurrence of 2 new small tumors. I am happy to say our week ended on a great high though. We had the pleasure of meeting Coach Harring and some of the members of the UMass Lowell Baseball Team yesterday.

Mac has been paired up with them through an organization, Team IMPACT. They match children who are sick with college athletic teams. They describe themselves as a cross between Make a Wish and Big Brother/Big Sister. When I was originally given the information from the organization I decided it would be a great way for Mac and Liam to have some experiences that would take their minds off of all that was going on here at home while at the same time having some fun.

I am not sure what I was expecting when the coach and players arrived, but they are one of the most impressive group of men I think I have ever met. They came over and talked to the boys about videogames and superheroes. At times, some people feel very uneasy around Mac knowing how sick he is, but these young men acted as if he was just like every other 7 year old. It was amazing to see. Not only have we earned a whole new group of friends, but we have been given the great opportunity to add some remarkable people as an integral part of our support system.

I had always been a believer in the saying “God never gives you more than you can handle”. I now think it is more accurate to believe that when God gives you too much he also sends people to help you carry the load. We are looking forward to getting to know Coach Harring and his players and forming lasting relationships.

We are still waiting to hear more about the new plan for Mac. His neurosurgeon will not be back until Tuesday. Upon return he will look over Mac’s scans and decide whether or not surgery is an option to either remove the new tumors or try to take a portion of them. As soon as we know more I will pass the information along. Thank you all for the continued prayers and support.

Valentine's Day

Happy Valentine’s Day from the bottom of my heart to all of you for the prayers, supportive words, and kind acts you have all shown us. We would never have gotten through this past year without you all.

Valentine’s Day this year has taken on a new meaning to me. The focus is no longer on romantic love, but on the unconditional love between a parent and child. This year my heart is so sad. I am not as discouraged by yesterday’s report as some may expect. I have complete faith and trust in all of the doctors, nurses and staff at the Floating Hospital that they have the expertise and passion to come up with a new plan for Mac that we pray will be more effective. For those of you who have children in their lives you know the helpless feeling you get when they are sick; that is what I feel every day when I look at both of my boys. Except in a “normal” family when a child is sick you know in a little while they will feel better and go on living their childhood. I see my boys and know they will never get “better” they will never get their childhood back. Cancer has stolen that from them with all that they have seen, experienced and felt. When I look at Mac I pray that he will get better instead of worse. I pray that both boys never feel as scared as I do about the future.

I would give anything in the world to trade places with Mac. I would give anything to take away the past year of surgeries, radiation, and treatments from Mac and the experience of watching his little brother and best friend go through hell for Liam. I feel so helpless, so for now I will just continue praying in the end all this pain will be worth the reward we will enjoy as a much closer and more appreciative family.

Unexpected MRI Results

Well, Mac continues to amaze me more and more every day. They were running about 2 hours late at the MRI for the sedation piece so Mac agreed to give it a try with it. He went in with Billy and was AMAZING! He laid in there listening to the banging of the machine for an hour. He only had to have the last picture redone because he had had enough, was bored and wanted out. I couldn’t believe when he walked out and told me “it was a breeze”.

We then met with Dr. Wolff. The results of the MRI were not what we expected. The new pictures showed that 2 additional small tumors have started to grow. We are going to move ahead with having some tumor markers tested and from that information we will start on a new protocol. Dr. Wolff will also meet with the tumor board and neurosurgeon to discuss possible surgery. We are hoping to know more of specifics over the next couple of weeks.

We continue to be optimistic and will keep praying for our miracle. Please continue to keep us in your prayers.

MRI TOMORROW

Tomorrow is Mac’s MRI. We have an appointment at clinic at 9 am for his central line port to be accessed and blood work. At 10 we will head over for Mac to meet with his psychiatrist then down to MRI. He is scheduled to go in at 11:30. The MRI lasts about an hour; because he is sedated he will then spend about an hour in recovery. We will then head back up to clinic for his check-up and to meet with his doctor to look at the pictures from the MRI. It will be “unofficial” results, but we should be able to see if the tumor is stable, still shrinking or if there is regrowth.

I was so nervous 2 weeks ago about this MRI. His “road map” was thrown a bit off track for the first time with the low platelet counts and Mac just seemed to be more tired and lethargic than normal. However, the last week has shown a complete turnaround in him. He has been showing us more and more glimpses of the Mac we knew prior to diagnosis. He has been more active, sometimes silly, and dancing again! Those of you who have had the pleasure of spending a lot of time with Mac know he used to make up the craziest dances and would bust a move anytime and anywhere. For such a shy child I was always amazed at his inhibitions when it came to dancing.

We are going into tomorrow’s MRI cautiously optimistic. I have been trying so hard to get out of the funk I have found myself in lately. I think hitting the one year anniversary of diagnosis and always having in the back of my mind the words “the average lifespan from diagnosis is 2 years” have left me fearing and wondering with every day “Is this the last time he will play in the snow” or “Is this the last time we will fill out Valentine’s for his class”. I know Mac is anything but average and continue to pray for continued success with his treatments but have yet to learn to live from my heart and not my head. I just don’t know how to push my fear aside.

Please say a special prayer for Mac and all the other little heroes who are battling this war. Please also pray for their families who live in constant fear everyday of what tomorrow will bring.

Today is my rough day...

Today is my rough day. I saw Mac at 11:30 and he looked and felt great and decided to stay the whole day in school!

I, on the other hand, cannot seem to stop crying today. I don’t know if it is all the anxiety of next weeks MRI or something more. Last week I got a call from my cousin. I haven’t spoken to him in years and his call came at just the right moment when I needed a little more support.  I cannot begin to tell you how much his reaching out to me meant. I couldn’t help but think it was my Nana’s way of letting me know she is with me. Then today I ran into my dad’s cousin at the grocery store. Another person I had not seen in many years. I immediately thought of my Nana again. I definitely feel like she is sending me a message. I just don’t know what it is. I want to believe that she is just saying she sees me struggling lately and wants me to know she is with me. I am just so afraid that she is here as support for what may be coming. I hate living in constant fear of tomorrow. I hate living  so afraid of what my family will look like next month or next year. I don’t know why life happens the way it does or why we were chosen to travel this journey, but today is one of those days that I am just trying to survive until I can pick up my boys and go back to pretending everything is ok.

Please continue to pray for the strength and faith we all need to get through our journey.

Make Some Noise!

I just got home from picking Mac up from school. He has been spending less and less full days at school and so much more time at home. I never know what to do about it. Should I push for him to stay at school or should I just bring him home to rest? I don’t really think he will learn much at school if he is not really feeling well but having him home so much is such a reminder of how different our lives are from “normal” and I wonder how much of it is really not feeling well vs. just don’t want to be there. He has quickly learned that all he has to do is say he has a headache and my PTSD kicks in and we are out of there in a matter of minutes, usually with a big smile on his face. He is having his next MRI next Wednesday, February 13^th so I guess we will know more about these “headaches” then.

As many of you know Billy and I attended a fundraiser Saturday night for Make Some Noise: Pediatric Cancer Research Foundation. I am in constant awe of the support system we have, so many of our family and friends came out to support not only the great cause, but our family as well. I was asked to share Mac’s journey and have attached a clip for anyone interested. I will keep everyone posted of any upcoming events for those interested.  

I am almost ashamed of how little I was aware of Childhood Cancer until it invaded our family. I am now Mac’s full-time caregiver and advocate. I would like to join the many people out there trying to bring awareness into every home and to those who can make a difference. September is Childhood Cancer Awareness Month; if anyone has any creative ideas or if you know people in positions of authority who can join in the crusade to “Go Gold in September” please spread the word and help save our children.

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.”