December 28, 2012

As January 17^th approaches, I have been reflecting on all that has happened this last year. I will never forget the look on the doctors face in the ER when he came in, turned off the tv, closed the door, stood over Mac sedated in the bed, placed his hand on my shoulder and said “These are words I never want to say to parents. Mac has a very large mass growing on his brain.”  The next couple of weeks went by in a haze. I remember watching Mac sleep with bandages on his head, a breathing tube, catheter, and his arms strapped to the bed. He looked so small. Then the pathology report came in. Through tears the doctor explained Mac had Stage IV, Glioblastoma Multiforme and that the prognosis was not good. I cannot even explain the fear in the pit of my stomach or the anger in my heart when I heard those words. Then we met with Doctor Wolff. He explained what he had planned for Mac and treatment. Billy asked the question I was too afraid to ask. How much time did we have with him? His doctor explained he could not possible begin to say because every person is different. All he could give us were statistics and generalizations. He told us the mean or average lifespan for this type of tumor from diagnosis is 2 years.

Over the past year my fear still exists, but most of the anger is gone. I believe in my heart I will have more than one more year with him because quite frankly our family does not work without him. I have learned so much from him in this past year and have said before how honored I am to be his mom, but he really is one of the most remarkable people I have ever met. He has a quiet and compassionate soul and faces each new obstacle with courage and grace. He is the person I hope to be someday.

Now I now must just put my trust in God’s plan and pray it is the same as mine. I also pray that someday our government will see that they have the power to change the horrifying statistics of Childhood Cancer. I thank God for all of the support we have received from so many and hope to have a New Year filled with more good days than bad and more laughter than tears.

Happy New Year to you all!

Christmas 2012

Well, it appears another Christmas had come and gone. I had a great day staying home with the boys and just relaxing. Although, to be honest, I was just not feeling the Christmas spirit this year. I never got around to putting our outdoor lights up, half of my decorations never made it out of the boxes, and once the boys finished unwrapping their gifts from Santa I was ready to take down the tree. I’m not real sure why I am so anxious to get back to our “regular” life or why this year I never really felt like it was Christmas. Something just seems to be missing and I’m not sure what it is. It could be that Christmas is full of magic and excitement because of the way kids experience it. It may just be my perception, but it seems some of that “magic” is missing this year because of all my boys of seen and experienced.  They have had their whole lives turned inside out and had to deal with depression, fear of loss, and the day to day side effects of cancer treatments that no children should ever have to deal with.

As we enter the New Year I will continue to try to take each day as it comes. January is historically a difficult time with the 15^th being the 2^nd Anniversary of Papa’s passing and the 17^th is the 1 year anniversary of our trip to the ER at the Floating Hospital which began this journey. We have learned so much that we could have lived happy lives without knowing this past year. So much has changed who we are as individuals and as a family. We are forever grateful for each day together, but I still long for those “pre-cancer” days when my heart didn’t stop with each cough or pain Mac experiences or the sadness I see so often in Liam’s eyes.

Tomorrow we head back into the clinic for counts and a check-up. Tomorrow I will see many of the faces of childhood cancer who have forever touched my heart. Tomorrow I will cry again for all the carefree childhood memories that were stolen from my boys and so many others. Tomorrow I will again begin to work towards making this world a better place for these children. 

December 18, 2012

I am not really sure where to begin this post. I have no new news to share in regards to Mac’s treatment. He is still doing well and amazing everyone with his strength and courage. I have been overly emotional, especially since the horrific events of Friday, recently. I have been crying a lot more, but to be honest, I have cried every day since January 17^th for one reason or another. I have found myself thinking so much about the parents whose hearts have been ripped out of their chests, siblings who lost their best friends, and families who will never be the same. The unfortunate thing is that these thoughts did not start on Friday. They started many months ago as I met and watched as children fought cancer bravely and heroically and when too many of them became angels.

This is our first Christmas since Mac’s diagnosis and so much has changed. I have always wanted to give the boys the perfect Christmas, what has changed it just what the “perfect Christmas” is. In years past this meant making sure the tree looked perfect, the lights were up outside, and all the gifts were perfectly wrapped and under the tree. This year our “perfect Christmas” has already started. We got great news about Mac’s MRI, my brother as able to come up to visit, and we have started spending time with our amazing family and friends. We are so blessed to have both our boys with us and not a day goes by that I do not remember that. I am trying my best not to think about our future and what next Christmas may be like. For now I will enjoy every moment with my boys.

I have listened to this song that I have heard before, but has taken on so much more meaning to me over the past year.  I wanted to share it because of how it so perfectly summarizes my feelings.

December 12, 2012

Well today we received better than hoped for news. We learned that Mac’s tumor continues to react unexpectedly to treatment and continues to shrink. I cannot even begin to explain the feeling of seeing the scans, seeing the HUGE smile on his doctors face, and just feeling hope. This is the best Christmas gift we could have ever received.

I also want to thank all of you that contributed to the gift card drive. I dropped off over $2,500 in gift cards today and still have some coming in. I have been overwhelmed by the generosity and compassion we have been shown throughout this last year. We could never thank you enough!

December 10, 2012

We have just returned from an especially needed family vacation. I was a complete stress ball for the first few days. I was a nervous wreck about getting all the meds through airport security, which proved to be no problem at all, and then spent the next few days worrying that Mac was going to get sick from all the germs on the plane. He wore a mask in the airport and on the plane, but those things are an illness just waiting to happen. I was so scared he would catch something and I would not know what to do with him down in Florida. Luckily, my prayers were answered and everyone stayed healthy! The boys had a great time at LEGOLAND and Universal Studios (although they spent more time in the gift shops than anywhere else). They spent most of the rest of the time in the pool at Nana’s. It was so nice to see them just be kids again. Mac spent most of his time smiling and chatting like I have not seen him do in many months. I can’t begin to explain the feeling of looking at your child, knowing all the pain and suffering they have been through and all the worry and stress they carry on their little shoulders, and seeing the look of pure joy on their face as they swim and splash in the pool. These are the things that I once took for granted, but now pray that we all have the chance to experience more of, together.

Wednesday is a big day for Mac. He has several appointments and will be going in for an MRI at 12:30.  I continue to hope and pray for a miracle for our family, but regardless of the results, I know that with my family, friends, and faith we will continue down this journey we have been thrown on, together. Please continue to pray for us all and as the holidays approach please do not lose focus on what is really important in this life. Hug all those children in your lives extra tight and never forget to be thankful for the many lessons they teach us and any amount of time we are granted to share with them. They are the true miracles in this world.

November 27, 2012

Sorry for the delay in posting. I am happy to report that I have nothing to report. Mac is doing so well. He still tires easily, especially at school, but other than that he is great. I am finding it easier and easier to look at him and see Mac, my son, and not Mac, my son that is battling for his life.

 With the holidays here it is so easy to get caught up in the commercial aspect of shopping and decorating and forget what the season is really about. One of Mac’s greatest gifts to us is his ability to see the magic of the season without questioning it. In his world, magic and miracles happen every day. He is teaching me how to enjoy today, and let tomorrow come as it may.

I still believe everything happens for a reason. As our family navigates through this journey the reason is still not clear, but we are adjusting, learning, and in many ways becoming better people because of it. As I think back over my life, there is nothing I am more proud of than my two boys. They are two of the most compassionate, loyal, and good people I know. They have allowed me to learn how to live with Mac’s cancer as an aspect of our life instead of continuing to focus on it as the center of our life on my own time. I know as we have our ups and downs all of us will continue to battle with feelings of resentment, anger, and disappointment for all of the “could have beens”. I don’t know if I will ever come to accept what has happened to our family, and hope that many of you will not either. There is no reason for so many of our children to be forced to rage war on their bodies with so little being done to stop it. Please continue to keep us and all families affected by Childhood Cancer in your prayers and thoughts, and please continue to talk about Mac and all the children who bravely smile through tears of pain and disappointment so that someday the research that could save them will get the funding and awareness our children deserve.

November 13, 2012

Thank you to all that have committed to sending gift cards to share with the families at the Hematology/Oncology Clinic at the Floating Hospital for Children. Please know you are not only bringing joy into the lives of children, but are also relieving a lot of stress that parents of sick children feel when money is so tight and the holidays are approaching.

Our family is doing great. Mac is back to feeling and acting like he was pre-cancer. Liam seems to be doing well also. We seem to have been going on as a “normal” family, well, as normal as any family that has a visiting nurse come on a Saturday to change out a g-tube or any other parent that  goes to their child’s school daily to pour formula down the g-tube so they don’t go all day without eating or drinking. These have all become part of our life. It’s funny how such unnatural things can become such a natural part of everyday life so quickly.

Halloween proved to be an incredibly emotional day for me. Halloween has always been Mac’s favorite holiday. The boys put on their costumes and we all headed out to trick or treat. We made it to a few homes on our street before Mac got tired. We put him in his wheelchair and pushed him from house to house. He walked on his own, well with his brother, up to each door for his candy. Candy that he was so thrilled to get even though we all knew he would never eat any of it. As I watched him and the sheer joy of childhood innocence on his face I could not help but think about his and our futures. What would next Halloween look like for our family? How much longer would he be able to celebrate all the things kids do that make them such special little people  without all the skepticism that we carry around as adults? After talking about my fears with some great friends and taking their words of wisdom I decided to live in today and try not think about the future and how different it is going to be for both my boys than anything I would have ever wanted for them and so different from what they deserve. I was really doing well and starting to feel more human.

I should have known better to think it would continue for more than a few days. My “new life“ slapped me back to reality today. I went to feed Mac his lunch to find him waiting in the office. As soon as he saw me the tears started. He had a terrible headache. In any other child a dose of Tylenol and nap would be all that was needed. But, our “new normal” life means taking a temp to make sure he can have Tylenol, putting him down for nap, then crying and worrying about what this new pain may be. It is probably nothing more than a 7 yr. old boy who was a little tired and needed a break from school. Of course for our 7 year boy it could mean so much more…

I can never thank anyone enough for all of the love and support. Please continue to keep us all in your prayers. 

Holiday Gift Card Drive

Dear family and friends,

As you all know, 2012 has been a challenging year for our family, beginning with Mac’s diagnosis of brain cancer in January and continuing through the past 10 months of radiation, chemo, scans, blood draws, joy over the reduced size of the tumor, fear over the unknown journey ahead, anger and sadness over the significant changes in our child – from weight loss to hair loss, nausea and anxiety.

Since January, we’ve put so many things in perspective and truly reflect on what matters in life like time with family and friends and making lasting memories.

The holiday season is a time to be thankful for and to celebrate what we have. We are so lucky to have our support system of family and friends – new and long-term – who helped us get through every day since January 17. We’re so grateful for all you have done for us!

We would like to ask our community of support to help others this holiday season. As you know from our experience, it is almost impossible for families to continue living the way they did prior to their child’s diagnosis. This obviously has emotional implications and financial impact as well. Many times, having a child with cancer means losing an income while also adding expenses to traveling to and from Boston, not to mention the medical costs.

We would like to collect gift cards for the parents of the children in the Hematology/Oncology Department to help with the stress that having a sick child and the holidays may bring. The gift cards can be for a gas station, a grocery store, or any store.

Help us alleviate some of the stress for these families during the holiday season so they focus on what is really important – celebrating every moment with their families – not worrying about whether or not they can afford to put together a holiday meal or purchase a special gift for their children.

If you would like to help, please send all donations by December 10, 2012 to:

Super Mac’s Support
c/o Bill & Rebecca Connor
2 Delmore Drive
Chelmsford, MA 01824

Again, thank you for all that you’ve done for us – and all that you may do for others whom you haven’t even met!

October 24, 2012

I know I have talked about my days being constant ups and downs and today was no different. Mac is feeling good and at home so that should be good enough, except it isn’t. We have settled into routines that consist of Mac missing school at least once a week or being dismissed for not feeling well. I can never tell if he just needs a break or is really not feeling well, and to be honest it doesn’t really matter. If he is tired and needs a break he is not going to learn anything at school anyway. So today started out as usual with me dropping off the boys at school then running to the store to get Mac the Ironman Arc Reactor (the glowing thing on his chest) that lights up. The phone rings at 9:30 and it is time to pick him up because he got sick and his stomach hurts. This usually would not change my mood that has been up and down so many times already from the many Facebook friends I have met whose children are also battling this horrific disease or have earned their angel wings far too soon, so I pick him up and bring him home. I pick Liam up at 11:30 because it is early dismissal and explain Mac is not feeling well so we will not be able to go out for lunch and to the movies as previously planned. He is so disappointed, but Liam being Liam while holding back tears says “its ok mom, I understand”. When we get home I go to sign his homework planned only to find he had written in “see movie with Mom and Mac” in today’s to do list. My heart physically hurts. I am so mad that he has learned to accept disappointment so easily. I have learned to make plans but always be flexible knowing things can change at any minute. I am so angry today that my boys have to live this way. I don’t know why any child would have to live battling this disease or any child would have to watch their family torn apart as a sibling physically rages war on their own body. I have accepted this as our life, knowing we will have highs and lows but our lives will never be what they were or even ok again, but how do you explain this to children. How do you explain how great it is that Mac is feeling well and looking awesome, but it’s not good enough? We have learned to be thankful for our time together and live every moment as if it was our last, but wow is that exhausting.

So hug your kids extra tight tonight and remember the laundry and work will always wait for you….your kids cannot.

October 10, 2012

I am completely drained after today’s visit at the hospital, but in a good way. It was a long ride in this morning. It took us a little over 2 hours with traffic, but Mac fell asleep for a bit which was good. He is so tired lately. Our first appointment was with GI. We talked for a bit and they are changing his prescription from Pepcid to something I can’t pronounce and then we will go back next Wednesday for an ultrasound of his abdomen and scope to see if there is anything going on in there causing his daily vomiting. From there we went to our next appointment for his psych evaluation. We had a little trouble finding it and when someone asked me if I needed help I told them the floor and wing I was looking for. She said “That’s the psych ward” with a weird look on her face. I just said “That’s what we are looking for”.  Finally, we stumbled upon it. I have been seeing someone about my feelings about Mac’s diagnosis, but it was a whole different ballgame having Mac with me. I have to say I could not have been more impressed with this psychiatrist. We started talking about what Mac was like prior to diagnosis, and then the topic changed to school. I was explaining how he was in first grade when his tears started flowing. I explained how Mac was still struggling with the idea of repeating grade 1. Mac was able to tell him that he was sad about staying in first grade. Through a series of question he was able to get from Mac that is has nightmares that do not wake him up but scare him. Somehow, Mac ended up sitting on my lap crying and communicated that he is scared most of the time about something happening to him but was not able to yet share the specific fear. I have never felt so heartbroken, sitting with tears in my eyes, with my baby on my lap crying uncontrollably and hurting so much inside. I cannot say for sure what Mac is afraid of but I know my own fears. I guess up to this point I was living in la la land thinking because he was only 7 he would not think about the future or begin to worry if he even had one. His psychiatrist explained that just like we are going through the mourning process for the normal life we wanted for Mac, he too, is mourning the life he used to have. I guess up until recently I have been so focused on his physical needs that I did not think about the complexity of emotions he is struggling with. I have read the poem “What Cancer Cannot Do” a hundred times. Cancer has broken my heart, made me feel sadness and fear to my core, but it has also shown me just what an incredible gift my children have been to me and allowed me to see the beauty in the everyday mundane things in life I used to take for granted. The sight of seeing my boys sitting on the floor playing a game and laughing, talking and even arguing a bit has become one of the most beautiful sights in our home. I am thankful for every moment we have together, it is such a shame in life how it usually takes such a tragedy for us to realize and really see the beauty in our lives.

October 4, 2012

It has been a while since our last update.  I’m not really sure even where to begin. Physically Mac is doing great. Although his Dr. has some concern he may be developing an ulcer so we will have that checked out next week. Emotionally, we all seem to be on the edge of full blown nervous breakdowns.

Liam was devastated when hearing of the loss of the little girl who had been on the news and met Justin Bieber. He has cried several times over various things that seem to get blown out of proportion and because of his heightened sensitivity hurt his feelings.

 Mac seems to be falling into a depression. I started to notice a difference in him when school started, but it has gotten progressively worse. He has been able to share with me that when he cries it is because he is sad, but does not know what is making him sad.

 I feel like every time we have a few great days and I start to feel like I really got this “new normal” life down, something happens. This new life will never compare to our old life, but we are all still home and together so what is there to complain about, right? That is when I fall apart. That is when something will happen like the doctor suggesting a psych evaluation because clearly Mac is struggling with everything, and who wouldn’t be? That is when I feel so helpless. I just don’t understand why all of this happens to children, why they are made to suffer so much, and why parents have to sit back and watch their children hurt physically and emotionally. It is just so unnatural. I hate that I cannot help him. I hate that I am always one wrong word away from tears. I hate that my children are so sad a lot of the time. Most of all, I hate that I never realized how absolutely perfect our lives where and how I took for granted the joy of having 2 healthy children.  I have learned to let go of planning and have started to try to live in the moment. I will never stop praying for a miracle nor give up on my faith. I just wish I could find some way to get past the sadness and guilt for not being able to give my children the childhood they deserve. 

A Day of Yellow and Gold to Support Childhood Cancer

I would like to share with you campaign that has begun on Facebook. As I’m sure you all know by now September is Childhood Cancer Awareness Month. A page has been started on Facebook entitled “A Day of Yellow and Gold to Support Childhood Cancer”. I have listed the information below. I ask that you please spread the word and consider showing your support for all Children who are fighting, have fought, or may fight this horrific disease in the future.

About

On September 28th please wear yellow or gold clothing to raise awareness for those children who are currently fighting cancer and for those children who battled so valiantly. They deserve all the attention we can possibly bring to finding a cure!

Description

I created this page, "A Day of Yellow and Gold to Fight Childhood Cancer" in order to bring attention to the need for much greater awareness and funding to eradicate all forms of childhood cancer. I don't want to bombard you with statistics but simply state that not enough is being done by our government, pharmaceutical companies, and institutions such as the American Cancer Society to put an end 

to the suffering of children who face the horror of cancer. If enough of us can do something as simple as wearing yellow and gold on the same day (September 28th) I believe that this could get the ball rolling towards creating enough media attention. This could put pressure on those institutions I mentioned above to do more to help our children. I dream of the day when Major League sports teams choose a day and wear yellow and gold to help raise awareness for childhood cancer as they do for breast cancer awareness by wearing pink. I dream of the day when the American Cancer Society gives a much more equitable amount of research funds to childhood cancer, as of now they only allocate one cent of every donated dollar to our children. I dream of the day when no other mothers, fathers, sisters and brothers have to feel the searing pain of losing a son, daughter, or sibling to the monster that is childhood cancer. Please share this page with your friends throughout the world; our little Heroes’ and Angels deserve all the attention we can possibly bring to fighting Childhood Cancer. There is strength in numbers and if the numbers are great enough they will not be ignored!
"Smile, Be Happy"
Tony Stoddard

September 16, 2012

I’m not really sure where to start this post because I am happy to say we don’t have much going on. We are starting to fall into regular routines with the start of school. I am having a hard time finding ways to keep my mind off things while the boys are at school. There is plenty of housework to do but can’t seem to motivate myself to do it. I am really enjoying out time together after school though. I LOVE that I can now sit down with Liam every afternoon and really do his homework with him. Previously, I would be busy doing schoolwork and would check it over quickly. We actually sit together, just the two of us, and talk about his day and what he is working on. I never realized how much I was missing that one on one time with him. I also have been thinking a lot about how much our life has changed and although there are many times I feel I will be completely engulfed in my pain and sadness over the loss of the childhoods both my kids are missing, just those few minutes a day with Liam seem to rejuvenate me. I am so thankful and blessed that I have him in my life. He has a way of teaching me about gratitude without even knowing it.

Mac is really adjusting well to school. He seems to be finding it easier and easier to go in the mornings.  I am shocked at his stamina and energy. After all he has been through I thought he would have a harder time getting through the school days. We are going into Boston this Wednesday to change out his g-tube button. The one he has now has started to leak a bit and is getting gross. I am hoping it will be a quick trip since we do not need to go to clinic for a couple weeks!

It’s hard for me to say how I am doing. It all depends on what moment of the day you are asking. Every day I go through a roller coaster of emotions. I get so sad at times when Mac struggles to do things that used to come so easy to him or I can see on his face how badly he wants to eat one of his favorite foods that taste just awful to him now. I am so happy at other times when I think back to all that he has been through and the awe inspiring courage he has shown. I am grateful I was chosen to be the mom of two boys that have taught me more about life then I could have ever dreamed to teach them. But mostly I am scared. Scared for what tomorrow might look like for our family, scared for what may or may not happen. I wish I was one of those people who lived in the moment with no thought to the future. I think this is the only way to truly enjoy and be grateful for each new day that we have together and at home. This is my new mission, to try to look at my children and see not two kids who have been robbed of the innocence and naivety that is childhood, but to see the two people in the world who have knowledge beyond their years and the ability to make my day or break my heart with just one little look.  Mac carries the physical scars of cancer while Liam carries the emotional ones. I will never understand why our family was chosen for this journey, but when I look at them and hear their laughter it gives me the hope that we can come through it.

September 6, 2012

Well, we could not be happier with the MRI results from yesterday. I find myself looking back over his original MRI and seeing how far he has come. The fact that the tumor is continueing to get smaller is a miracle for our family. We cannot say enough about the people at the Floating Hospital. With the start of Childhood Cancer Awareness Month I find myself reflecting on our journey. It is funny how there are certain parts of our journey that I will never forget. I remember the ER doctor coming in while Mac was still sedated and sleeping, shutting off the tv, closing the door and saying “These are words I never want to have to say to parents. Your son has a very large tumor on his brain.” While saying this he put his hand on my shoulder to steady me and in a way offer his support.  I remember the very first nurse in the PICU giving us a tour of the unit and letting us know what to expect overnight.  She then turned to me and said “I know he is your son, but while he is here he is ours too.” I will never forget the feeling that came over me when the doctor sat down to give us the results of the pathology report. With tears flowing down her face she turned to us and said “Mac has a grade IV Astrocytoma. I’m sorry. The prognosis is not good.” When they say at the Floating Hospital they treat every child like their own it is absolutely true. In a way, January seems so long ago and so much has changed, but at the same time it seems like just yesterday. I know we have just started on this journey and that the road ahead will be paved with ups and downs, but for today we are celebrating this up and thanking God for all the people we have met and gotten closer with throughout this journey. 

September Slideshow

Please take a few minutes to watch this slideshow of pictures. It is our journey with Mac through Childhood Cancer from January through today.


http://youtu.be/Llq1dR8f4ME

September is Childhood Cancer Awareness Month

Today is the start of Childhood Cancer Awareness Month. I feel like I have been posting so much about it on Facebook, but am not sure what it means to most people. I can tell you what it meant to me last year. The start of September meant the start of a new school year for the boys and for me. It meant the start of numerous Fantasy Football drafts for Billy and the beginning of my favorite season. I read a little about childhood cancer and donated to St. Jude’s. I thought about childhood cancer as a tragic and horrific thing that happened to other people. Never in my worst nightmare did I think it would touch my family.

Since last September so much has changed for us. I have met countless heroic children battling this disease with a grace, dignity, and courage that is unmatched. I have met their siblings who have grown up far too soon and seen far too much pain and suffering within their families. Childhood Cancer has a whole new meaning to me now!

Today, Childhood Cancer means to me living in fear every day that Mac will get a fever or worse. It means that Liam worries every day that his brother is going to die. It means that we cannot plan a family vacation for next year or even next week because our life is a constant unknown. I am now a full time caregiver for Mac instead of a teacher. There is a constant feeling of stress in our house because we are always watching the clock making sure his meds are given at the right time and his g-tube feeds are started. We have all given up the ability to go anywhere without timing it with the meds and feeds. Mac has lost his childhood. Liam has lost the brother he once knew. We have all sacrificed the life we once took for granted for this one in the world of Childhood Cancer. Our lives and family has been torn apart. We continue to pray and hope that one day we will be able to put it back together but we will never be the same.

This September please take the time to think about the lack of funding for research and resources for these amazing children. If there is one thing I am sure of it is that Mac deserves better, Liam deserves better and all children deserve better. They deserve a chance at life.

 

Sunday, August 26th

Tuesday is the BIG day around here, the first day of school. Both boys will have teachers they already know which makes the transition a little easier. I had the opportunity to sit down with Mac’s teacher and principal on Friday to talk a little bit about his special needs as he transitions back into school. Any anxiety I had was quickly put to rest after speaking with them. The whole St. Margaret School community has gone above and beyond to make sure both boys have everything they need to be successful in the upcoming year.  We will continue to take it one day at a time since there is no road map of what to expect from Mac or Liam.

Although I am excited for them to start the new year and try to get back some normalcy in their lives I am a little nervous for myself. I think about how this time last year I was putting the final preparations together for my own classroom and looking forward to meeting my class. Once school starts I will have a lot of free time on my hands. It seems now whenever I have a few minutes at home alone I use them to get my emotions out and cry. I just do not want to be overcome by this sadness for all that Mac and Liam have lost over the last 8 months.  I would never choose this life for myself or anyone else but feel like as long as I do not live “angry” all the time I can get by. I just hate this life for my boys. They deserve so much better. They deserve to always have “good days” like most 7 and 9 year olds. They deserve to have a mother who doesn’t smile to hold back her tears every day.  They deserve to have a family that can talk about plans for a future without a black cloud hovering over all the time. I just wish I could give them what they deserve. I know what is happening is not a reflection on our parenting or anything that is in our control, but I think all parents want better for their kids than what they had for themselves. It is hard realizing I cannot give that to my kids because they have already seen, heard, and felt too much! I am forever grateful for the fact that Mac is doing so amazingly well but most days feel like it is not good enough for him.

                                                          

 We will never know what caused this cancer or how long Mac had lived with it before it was found. We will never understand why there are so little resources and funding for these little heroes that smile and laugh through their horrific journeys. But I do know it has forever changed me and my entire family.  I only wish I could say it was for the better.

Mac is scheduled for his next MRI on September 5^th. Please keep him in your prayers.

Thank you for following and allowing me to get out my thoughts and feelings.

1 Week until School!

As we enter our last week of summer vacation I am filled with so many emotions.

Liam is slowing slipping into a depression as each day passes and it gets closer and closer to school starting back up. It seems he has grown rather fond of his staying up late reading The Simpson’s comic books and then sleeping until 10. Although this last week will be the first week all summer that I don’t have to constantly nag him to do his summer reading or math since we finished it all on Friday. I don’t know who was happier about it me or him! I literally got up from the table when the last word was written on the final book report and did a jig!

Mac continues to amaze us with this strength and endurance. His hair is growing quickly and he even told his Occupational Therapist he was looking forward to starting school again “a little bit”. I am hoping his need for perfection will relax a bit when he starts school. He is so hard on himself when he makes a mistake. I only wish he could see himself through my eyes and see the constant reminder of courage, faith, hope, and all things in this world, that he is to me.

We have had some of the best times this summer as a family. When Mac was at Fenway Park last weekend and very innocent woman asked what his bracelet was for, when it was explained he would be throwing out the 1^st pitch for the Spinners she responded with “how did you get so lucky?” I know nothing was meant by it but the comment made me want to cry and scream and have a fit any 2 year old would be jealous of. “Lucky” is not a word I would use to describe Mac or the reason he had the opportunity he had at Fenway Park.  “Lucky” is not a word I would use to describe the daily battles Mac faces just to try to be a “normal” kid. “Lucky” is not even a word I would use to describe the good days we have together as a family because for each and every one of those days Mac, Liam, Billy and I fight with everything we have just to get to them and sometimes through them. I am forever grateful for those good days but don’t feel “lucky” to have them.

As the boys return to school most parents have hopes their child does well, gets along well with others, and maybe even finds that one subject that will turn into a lifelong love or career for them. This year, I hope Mac finishes 1^st grade and Liam learns how to be a kid again without so many grown-up worries. Please continue to send prayers and positive thoughts. 

August 12, 2012

Mac continues to do well. They upped his chemo dose from 50% of the total dose to 75% last Thursday. At first he seemed to be doing really great with it but he has been getting sick first thing in the morning the past 2 days. We have no complaints though because after he gets sick he feels good for the rest of the day.

Liam is also doing well. It has been so helpful to have such a great social worker for him to talk to. We are in the process of looking into a boy scouts group for him to get him more involved and around kids his own age. We are hoping this will help him get a break from our "new normal" life too.

We have a great week ahead. We are going on a boat ride on Tuesday night in Boston Harbor with Cops for Kids with Cancer and Saturday is our big day at Fenway with the Spinners for the Futures of Fenway game. We are all looking forward to watching Mac throw out the first pitch and meet some of the Star Wars characters. Tickets are still available if anyone is interested in joining us!

All in all we are all doing really well. I have to be honest my anxiety about school starting is growing a bit. Only because I have no idea what to expect though. I feel so blessed to know that with Mac's return to St. Margaret School he will be re-entering one of the most generous and kind hearted communities I have ever been a part of. I know they will keep me informed and keep his AND Liam's best interest in mind at all times. I just have never been good with unknowns as I have said before. Luckily, I am married to a "go with the flow" kind of person to help balance us out!

Thank you all for continuing to follow our journey and the continued support.

Doing great!

Mac started on his new chemo last Thursday. It is called Zolinza or Vorinostat. So far he has been doing great with it. We have not seen any side effects which is a welcome relief. His hair has starting growing in along with his eyebrows and eyelashes. Although he is still a little unsteady on his feet at times and his had tremors still cause him some frustration he is fabulous! It is so nice to see him with the mischievous sparkle in his eye. He doesn't talk much about his feelings but he does tear up when we talk about him repeating 1st grade this year. I feel bad that he is so upset about it but in my heart know that it is the right place for him.

Liam was able to have his 1st conversation with the social worker last week. We were almost able to physically see a weight lifted off his shoulders. He went to bed that night and slept til 12:30 pm the following day! He did stress with the social worker how much he wanted their conversations to stay private and not be discussed with anyone else. When she left I reiterated to him that I would only know what they discussed if he told me. It took a couple of days but he did tell me he was afraid Mac was going to die. This is a conversation no "baby book" prepares you for. I told him the same thing we told him back in January before the 1st surgery. We talked about about how everyone dies and that we were doing everything in our power to help Mac. I think just saying the words helped him. Hopefully, the more he talks to us and the social worker the more his mind will be put at ease. At 9, he should not have to be constantly worried about his little brother dying.

I still have days when the tears seem to never end. It is so hard to live our lives from one moment to the next never knowing what or where we will be. It is especially hard when I know that we will never know why this happened to Mac and what caused the tumor. I am a planner and have never been one for enjoying the unknown and that is all our life is now. I feel and look exhausted all of the time these days. This "new normal" is VERY hard to get used to.  Baby steps they tell me.

"If it weren't for cancer, I'd say I have the perfect life. If it weren't for cancer, would I even realize this?" - Phill

July 25th

Things are going great! Mac is starting on a new oral chemo tomorrow that will hopefully go as smoothly as the last one. Mac's hair and eyelashes have started coming back. I'm not sure if they will stay or fall out agian with the new chemo, but just seeing the peach fuzz is exciting! Mac has started getting ready to return to school in September or rather thinking about what kind of backpack he wants! 

We are going on a boat ride tomorrow night around Boston Harbor with the Cops for Kids with Cancer that both boys are looking forward to. Also, the social worker returns tomorrow to talk with Liam. He is so excited about this and seems to have a lot he wants to talk about. I couldn't be more proud of him. It is so nice to see him recognize the stress he is under and want to talk about it rather than hold it in and allow it to manifest itself in destructive ways.

This has been an emotional week for me. I started packing up my classroom yesterday and was surprised at how hard it was on me. In my heart I know I am doing the right thing for both my family and the children who would've been in my class by not returning. At this time I could not give them the dedication they deserve in a teacher nor the reliability. It's funny how since I was a child I wanted to be a teacher. I got scared by the idea when I was younger and my life took another path. After Mac was born and about to start preschool I returned to get my Master's degree and License. It seems like I finally had it all. The happy and healthy family, great job and a plan for my life. How quickly things change. I don't even know what to expect for tomorrow let alone next week or year. I just pray for direction in finding a more flexible position that will be even partially as fulfilling and fun as teaching has been.

July 15, 2012

We have all enjoyed another week at home with no hospitalizations! Although it was a bit busy. We had the visiting nurse come on Monday, an Occupational Therapist on Tuesday, clinic on Wednesday, and a nurse and social worker on Thursday. I'm not sure if I will get used to all the visitors we now have, but so far they have all been great for the most part. The week went well with no big issues which is great. Mac began a round of 5 consecutive days of oral chemo on Wednesday. I am more and more thankful for his g-tube with each day that passes! I was able to administer the chemo myself here at home by just opening the capsule, mixing it with water, and just putting directly in his tube. So great to be home and it was even better he didn't have to taste it because from what I hear it is HORRIBLE. Mac is doing well swimming in the pool or rather canonballing into the pool. He is up to 50 lbs and is getting not only stronger but happier with each day he spends at home.

Liam is still struggling. He has asked to see a therapist to talk about his feelings. During a conversation he told me he feels angry, sad, mad... all these feeling all the time. He also said he has not felt happy since Mac was diagnosed with cancer. So the visit from the social worker on Thursday could not have come at a better time. They are going to be coming or setting him up with other services from professionals and volunteers that come right to the house. I can't begin to imaging what he is feeling. Liam has carried the weight of the world on his shoulders his whole life. He feels empathy like no one I have ever met. It has been so hard for him to have his whole world torn apart, watch his little brother vomit, lose weight and go bald, see Mac get frustrated with the constant tremors in his hands, and learn that Mac can no longer do the things that used to come so easy to him. We have never instilled in Liam a feeling of responsibility for his brother because we never had to it was just always there. Liam is so protective of his brother and I fear for all of our futures... this disease could destroy us all in an instant.

I continue to be thankful for all of our good days and pray for Mac to make a recovery. Thank you all for your continued support.

1st Vacation

We just returned from our 1st family vacation after diagnosis. We have been going to Cape Cod for the past several years with my family. We were so looking forward to getting away for a little bit and spending time together away from reality. On the outside it looked like the perfect vacation. We rented a house with my parents, brother, sister and her family. It was less than a 5 minute walk to the beach. We could even see the ocean from the roof top deck. The weather was perfect every day. It was exactly what I was hoping it would be. Until we got there. I struggled all week with an emotional roller coaster of emotions. At the same moment I was feeling so happy and grateful that Mac was with us and feeling good I was so incredibly sad to see him sit out swimming at the beach and playing with his cousins. He had always been the 1st one to run into the ocean and the last one dragged out at the end of the day. He had been planning on catching a seagull for a few years setting up traps and waiting patiently for them. He had no interest this year. It was so painfully obvious that Mac is not and will never again be that carefree kid he once was. I am grateful for every moment we have with Mac, but am devastated over the loss of childhood he deserved. He should not have to go to bed every night hooked up to a pump be get nutrition because his appetite is gone and taste buds are destroyed from radiation and chemo. He should not have to worry about getting sand in his g-tube. He should not be so cold on the beach he wraps up in 2 towels because he has lost so much weight.

Please don't misunderstand. We had an amazing week and really great time. Its just that it seems like every time I think I have a handle on the fact that our life will never be the same I feel like I am slapped in the face with another example of just how much has changed. I think right now I am ok with the conflicting feeling of gratitude, happiness and overwhelming sadness at times. It is a lot better than feeling angry. I imagine these emotions have become my "new normal" and hopefully as time goes by and we get through our "firsts" after diagnosis we will settle into our new lives. I just never expected the happy times to be so hard too.

"Childhood Cancer steals. It steals so much of our past, present, and future. It steals our past because it taints the memories we have of our children--leaving us with the "we should have knowns" or the "if onlies." It steals our present because childhood cancer and its treatment are so monopolizing, ... consuming so much of our time... and energy. It steals our future because 

when our children survive, we are never the same and forever faced with the real possibility that it could return. When they don't survive, we're also forever changed and robbed of the future with them all together."

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!

Our past few days

We were able to spend a great long weekend together. Mac got out a little but chose to stay home on Sunday to rest. Monday we all went to the cemeteries together just as we always do. It was nice to be able to keep one of our traditions. Mac went to clinic today and his numbers all look good. He had a hearing test and his hearing continues to remain stable. We have an ECHO/EKG on Monday morning and then Mac will be admitted for at least 6 days for chemo. This is the last scheduled inpatient chemo on the current protocol, but as    you know that could change at any time.

Liam has really started to show the effects of the cancer on him.  He has been saying he thinks about Mac's cancer a lot and that he feels sad. When we talked a little more he told me that he misses the "old Mac" because he does not act the same way he used to. We all miss the silly, carefree Mac that used to dress in costume everyday and bust out his dance moves! Liam seems so worried about Mac. Last week when Mac was taking a long nap Liam asked me if it was possible that Mac was dead. I assured him he was not and told him how I could see him breathing. I knew this because I had checked on him several times myself.

As summer activities begin I find myself thinking back to last year. Oh how much has changed. Every part of our lives has changed. We no longer can make plans in advance for we never know what the next hour let alone week will bring. But we are thankful for any time we can spend together.

Mac continues to surprise us with his strength and courage. I am so blessed to have such remarkable sons!

Thank you!

I want to start by sending a HUGE thank you to all that participated in the the Dining to Donate yesterday. We were able to raise over $ 1000.00 for our team for the Harbor Walk and Run! It is a bit overwhelming at times to see so many people come out to help and support us. We have been so blessed in life to have so many great family and friends accompany us on this journey.

I have had a great week. Mac has been home and although he is not eating nor drinking, and really not enjoying his daily shot, he has been the happiest I have seen him since the whole thing began. He has been playing tag, hide and seek and ball with his brother. His activity level is the highest it has been. We will return to the clinic tomorrow for lab work. Fingers crossed all goes well so we can spend more family time together this weekend!

Liam and Mac at Applebees during our Dining to Donate to benefit  team Super Mac Attacks!

So much better

It seems all I needed was a couple of sunny days with the whole family at home to really rejuvenate my spirit. Mac is doing really well at home. He is only on 1 of the anti-nausea meds so we are starting to see glimpses of "Mac" return. He is so out of it on the other meds. We have the visiting nurse come daily for his injections of neupogen and check his vitals. So far so good!  Mac enjoyed a short walk with me yesterday. We just walked to the end of the street and back which isn't very far but great to help regain his strength. He is tolerating his nighttime nutrition feeds again which will also help. He still has no interest in eating or drinking so I have been giving him pedialyte through his gtube. The biggest change I have seen has been in Mac. Over the past couple days he has started to laugh again. It is so nice to hear! It has been a long time since I have heard him really laugh.

Liam is doing well, although he hides his pain very well. Yesterday morning I asked him about a recorder concert at school that I just remembered seeing something about but couldn't remember any of the details. I, of course, missed it. I asked why he never said anything about it and his response was "I thought you were too busy" with tears starting to fill his eyes. That hurt!

Hopefully this week we will return to clinic on Monday for chemo, a blood transfusion if needed and hopefully with some luck return home! I am really hoping he is home for the entire week. Liam has his field day Thursday that I really want to be at for him and then has Friday off. I will be sending up some prayers for an uneventful couple of weeks!

Enjoy the beautiful weather that is to come and always remember life is short! The laundry and cleaning will always wait but the memories you can make with family and friends are fleeting!

Rough Week

I sat down to write an update for everyone but have been having a hard time choosing the right words. This week has been one of the hardest ones for me so far. Mac was discharged last night at 8:45 pm. I am so glad to have him home. Liam came running from his bed yelling "Is Mac home? Do I hear Mac?", and greeting him with a huge hug. When Dr. Wolff talked to me yesterday about whether or not to send him home he asked me how Mac would feel about staying another night. I told him Mac wouldn't say anything. He never complains. He proceeded to ask me what brought joy to him. I started crying and said "his brother". I then told him I wanted him home, but would be happy to stay if that was what he needed and what was best. I told him we would do whatever he wanted. Of course, I was still crying. Dr. Wolff said "I want you to stop crying. Well, no, I want you to have nothing to cry about. I think he should go home." I knew I loved this man!

Mother's Day came and went this year like any other day in our new life. I was home with Liam in the morning and then went to spend the afternoon with Mac. Liam was not feeling well so I didn't want to bring him to the hospital as planned. Billy and I spent a few minutes together and then he came home to Liam. It is so hard to always feel guilty being with one child that I am not there for the other. When Mac was diagnosed I knew our lives where changed forever. It just seems like as soon as I get my head wrapped around what that means for us something else happens, that makes me realize as bad as it is, it is going to keep getting worse. I have tried so hard to be a pillar of strength and optimism for Mac and Liam. This week I have felt all tapped out. I am so sad and angry this week and not really sure why all of a sudden it has hit so hard. I am hoping this phase will pass quickly and Mac will be home for a couple of weeks so we both can heal from this last round of chemo that has hit Mac so hard. I just don't understand how we can put men on the moon, watch tv from anywhere on our phone, and design cars that park themselves but no one can get a handle on this horrific disease. I hate that Mac is going through this, but even worse, I hate that I can't help him or take this cross that he bears and carry it for him. I hope Mac recovers quickly and I get out of this funk.

The Serenity Prayer

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him Forever in the next. Amen. --Reinhold Niebuhr

Fundraiser

Please join us for lunch or dinner on May 23rd at the Applebee's located at 50 Drum Hill Rd., in Chelmsford MA. When dining simply present your server with a copy of the Dining to Donate Flyer and 20% of your bill will be donated toward our team, Super Mac Attacks, fundraising total for the Tufts Medical Center and Floating Hospital Harbor Walk and Run. Our team is walking to honor Mac, give back for all the support and care we have received from the hospital, and help raise funds for Pediatric Cancer Research. "If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ~Lance Armstrong

A little scare

Mac seems to be doing ok with the chemo. Although they were a little concerned yesterday because he seems to be a bit off. He gets out of bed but his walk was a little off and he is weaker than usual. A physical therapist has been coming to work with him and neurology was called yesterday for a consult. Neurology recommended a ct scan to take a look at what was going on. It was so scary to sit and wait for the results. If I have learned anything it is we take one step forwarded and two steps back. We are always waiting for the other shoe to drop. Thankfully, the ct scan came back ok and they think the change in him is just related to the chemo and other meds he is on. Its funny how last year when asked what I wanted for Mother's Day I would have had a list of things prepared. This year all I ask is for Mac to do well with this round of chemo and be able to come home on Monday as planned. This journey has not only changed the way I look at life but has opened up a whole new world of fear. Some great friends just had a baby and my usual response of "congratulations" has been replaced with "I prayer for a long and healthy life for him".

This Mother's Day weekend I say a special prayer for all the Mother's who have been down, are on, or will be down this road. There is nothing so helpless as a mother watching over a sick child praying not only for a cure but the opportunity to make more happy memories with them. So this Mother's Day I am taking the time to be thankful for the incredible gift of motherhood and the opportunity to help Liam and Mac grow and reach their full potential. I pray Mac and Liam will be able to some day grow to be the kind of men who will change the world just as their dad has changed our world. It is so much easier to be a mom when you are standing next to such a supportive and unbelievably great dad.

Happy Mother's Day to all the moms out there and all the women who step into motherhood through the friendship of children!

Here we go again...

Tomorrow is our last day at home before heading back to the hospital for another round of chemo. We were so glad to see the sun today. Mac and I spent the morning outside flying airplanes and Mac rode his bike for a bit. Tomorrow we will begin preparations for another week in the hospital. Mac has started to put on a little weight and some color has returned to his cheeks. Hopefully he has regained enough strength to get him through this round a lot easier than the last one. He will have 5 days of chemo so I am hoping he will be home early next week. We will celebrate Mother's Day at the hospital, but these days any day we are home and together feels like Mother's Day!

Loving Life

Mac had his clinic visit yesterday. I am soo happy to say things went well and we spent a few hours there and then went home! I haven't had time to repack the bag that I keep in my car with his pajamas and other things that would be needed if he were admitted unexpectedly. Also, Gorilla was left at home by accident. I don't think there would have been anything that anyone could do or say to get Mac to stay there without him!

Last night we had the pleasure of attending Liam's Art and Academic Fair at school. This is one of the  first times in months we have all gone out together like a "normal" family. It meant so much to Liam to have his brother there to show him all the work he had done. Mac was a bit apprehensive about going. He is so shy and doesn't like to be in the spotlight. You may have guessed this from the way he hid behind Chara during the Cuts for a Cause. He didn't want to go into his classroom to see the work his friends had done, but he did enjoy seeing a lot of friendly faces. Mac even made himself a sundae and ate most of it! The kids at school are so phenomenal! They all offered their support through a wave, coming up to say hi, or a high five as Mac walked by. We are so fortunate to be a part of the St. Margaret School Community. I cannot say enough about the support we have received from so many different school communities such as St. Louis, Franco American, and the Academy of Notre Dame. I have always known that "it takes a village to raise a child", but the real meaning of this has never rang more true than when faced with a child with a serious illness. Never question again if there are good people left in the world because I can say with first hand knowledge that there are!

May is Brain Cancer Awareness Month. Although Brain Cancer is never not on the minds of our family because of the loss of Papa (my father-in-law) last January 15th and the start of our journey this January 17th (Yes, I do believe bears have it right and may join them in hibernation next year) please take a moment to think of all the families changed forever due to this horrific disease.

"I don't think of all the misery but of all the beauty that still remains."

- Anne Frank

Our time at home

Mac is doing well at home. He is still not eating and drinking as much as I would like but he did have a glass of lemonade and a piece of cake this morning for breakfast. The combination turns my stomach but he seemed to enjoy it! I figure the calories in the buttercream frosting alone will help fatten him up a bit! He still tires very easily and is weak but has really enjoyed spending time with this cousins this past weekend and helps Nana water the grass seed every day. It is so nice to see him start smiling more and begin to be more verbal. Liam has enjoyed taking Mac wheelchair "for a spin" around the house!

I am astonished every day by the incredible strength and grace both Mac and Liam have in their daily lives. As a parent I could not be more proud of both of them. I feel like a can take a small amount of credit for the wonderful boys they are growing up to be, but I think they both been born with so many gifts that make up who they are that cannot be taught. It seems long before they were both born this journey was in our plan. They are here not for us to teach them, but for them to teach us how to really live life. I look back to our lives PC (pre-cancer) and I wonder what I was thinking. Things that used to make me crazy like the balance of your saving account or the condition of our home seem so unimportant now. Mac and Liam have taught me to live every day focusing on the really important stuff like making time to just sit and be with them. The laundry and errands will be there tomorrow. I now take the time to thank God for another day with both of them at home and pray for the same strength they have and faith in our future.

 If anyone is interested in joining our Harbor Walk/Run team or can make a donation it would be greatly appreciated. Pediatric Cancer needs the support of communities and people to receive the funding and publicity it deserves. It is such a great and deserving cause!

Thank you to all that continue to follow our journey and pray for us.

home sweet home

Mac was finally able to come home yesterday after 2 weeks in the hospital. He will return next Wednesday for a visit to the clinic and then be admitted the following week for another round of chemo. Hopefully he will remain home for the whole 2 weeks!

The new portacath is working out well. The g-tube is working out REALLY well. It is so nice to have the fights about taking meds! He gets 12 hours of nutrition overnight and we are hoping now that he is home he will start to eat and drink more. Now that we no longer have to battle about his meds our new goal has become to try to fatten him up!

When leaving the hospital yesterday Mac said "I'm glad we finally got out of that place." I couldn't agree more. I felt like I had won the lottery when I was signing the discharge papers. We are all looking forward to some family time and Mac is just happy he is home in time for the release of The Avengers!

MRI Results

We received the MRI results. The tumor is more than 50% smaller than it was after the surgery. His chemo and radiation is working!

Big day

Well, tomorrow is going to be a big day. His MRI was rescheduled from Tuesday to tomorrow morning at 8:30. We will sit down with the dr early next week to discuss the results and where we go from here. Mac is also having surgery on Monday to put a g-tube in and replace his broviac with a portacath. I am hoping he will be discharged next Wednesday in order to spend a full week at home before returning the following Wednesday to be admitted for another round of chemo. We have spent a total of 3 days this month at home all together. Please keep Mac in your prayers and thoughts tomorrow.

What a week

Well the last week has been a roller coaster ride. We were thrilled to have Mac released from the hospital on Easter. We were able to enjoy the afternoon together not doing much of anything. It was great! Wednesday, April 11th, was Mac's last day of radiation. We were so looking forward to getting a break for a few days from the daily trips to the hospital. Not to mention the gorgeous weather and Liam being on school vacation. It was going to be a week of much needed family time. But, if I have learned anything in the past few months it is not to make plans more than a day in advance.

As with any good roller coaster, in order for there to by highs there have to be lows. This week has been one of them. The high dose chemo and 6 1/2 weeks of radiation has really taken a toll on Mac's body. We went in for his last day of radiation on Wednesday to find he needed a blood transfusion, his numbers has fallen incredibly low, and he spiked a fever. He was admitted. We found out he also had c-diff and thrush. He had not eaten or drank anything in over a week. He has lost almost 15 lbs since the beginning of treatment in February. Seeing him lying in the bed feeling so miserable and looking so frail is heartbreaking. The worst of it being the knowledge the that as bad as this week has been it is no where near how bad things will eventually.

The plan now is for Mac to regain his strength so he can return home and schedule surgery for the placement of a g-tube. Mac returns for another round of chemo on April 30th. Hopefully, he will have some time home in between to give his emotions and body a break.

Please continue to pray for a miracle for Mac and for us to continue to have the strength to not just get through each day but to be able to see how lucky we are to have such great care for Mac and such supportive family and friends. Please especially keep us in mind on the 24th when Mac goes for his MRI to see if the radiation and chemo is being effective in treating the tumor.

"And when it rains on your parade, look up rather than down. Without the rain, there would be no rainbow."

-Gilbert K. Chesterton

Liam

Today is Liam's 9th birthday. As I think back to his birth at 7 1/2 weeks early and weighting 3.7 lbs I can remember the mixture of emotions between complete and unconditional love and fear for what the future would bring for him. Now, 9 yrs later, I have those same emotions. He has been such an inspiration of strength, hope, and faith for us all! I wish there was some way for me to express this to him today on his birthday in a way that he could grasp just how much his place in our family is imperative to us getting through each and every day with the smiles and laughs. But, due to circumstances out of our control, I cannot even give him his whole family together to celebrate. Liam is really a special boy. Anyone who has met him can see this instantly. I have always said he is 8 going on 80 because of his incredible wisdom.  So today on this special day I just wanted to take a minute to share with the world this incredible child and thank God for choosing us for the tremendous gift of knowing and loving Liam!

Another round of chemo...

Mac was readmitted to the hospital yesterday for another round of chemo (a combo of 3 different types of chemo) and his last full week of radiation. He is handling everything so well. He is such a "go with the flow" kid! Unfortunately, the Bone Marrow Transplant was full so we are up on the regular Pedi floor. This has thrown off my whole routine, but Mac it taking it in stride. He did spike a fever of 102 this evening, but hopefully the rest of the week will go without any new complications so he can come home Saturday and the Easter Bunny won't have to hide eggs at the hospital.

Mac has an MRI scheduled for April 24th to get an idea of the effectiveness of his treatments. Please continue to pray for him.

Cuts for a Cause

Today we had the privilege of participating in the Cuts for a Cause to benefit Tufts Floating Hospital. I can not say enough about how gracious the Bruins players that participated were to the kids. Mac was very nervous so once the clippers were on hand he did not want to do it. Luckily, big brother Liam came to the rescue and took over. I can't blame Mac. If Chara was sitting in front of me I'm not sure I would have wanted to take clippers to his head either. I have to say, the players today really showed what it meant to be a role model. They were friendly and patient even when some people where pushing past the kids to get an autograph. We made some really great memories today thanks to the people at the hospital and the Bruins!

Busy Week

We all had a busy week this past week. Mac continues to go to radiation Monday - Friday. This week he got chemo as well on Monday. He continues to react well to his treatments. He was actually out riding his bike on Monday afternoon. We also went to clinic everyday. Monday - Wednesday they checked his blood cell counts and hydrated him via IV for a few hours. It made for really long days at the hospital. So Wednesday night a visiting nurse came and got us all set up at home to hydrate Mac overnight with a pump and IV. This also eliminates the need for me to constantly remind him that he needs to be drinking! Friday his red blood cells were a bit low so he got a transfusion. It was amazing to watch the color return to his face after only 10 minutes into the transfusion!

Mac will be home all next week with us!

"Be faithful in small things because it is in them that your strength lies."
Mother Teresa

Super Mac

We are almost half way through radiation! Our final session will be on April 11th. Mac continues to amaze me. He is not really drinking or eating enough so we have been going to the clinic before radiation for hydration. Today he got hydrated, sedated, had radiation, returned to clinic to finish hydration, got chemo and then returned home. I thought he would nap since it was a very long and busy day, but instead he went out to play ball and ride his bike with Liam. I thank God everyday for giving Mac not only the strength to get though his days but to exceed our expectations. He had yet to complain about anything. Although with the new type of dressing on his central line I have to wrap almost his whole upper body in Glad press 'n seal before his baths which he did say he "wished he didn't have to do". He is scheduled to be home the rest of this week and next. I talked to his nurse today and hopefully he will be admitted the following Monday instead of the scheduled Wednesday. He will be in for at least 6 days the first week of April and we are hoping we will be home that Saturday in time to celebrate Easter at home!

Mac's hair is thinning quickly. I have mixed emotions about this. I have no doubt he will be as handsome as ever, but have a real fear about him being bald. Not because of what he will look like but because everyone will know he is a child battling cancer. Up to this point we have been able to go out and pretend we are a "normal" family. The whole world will now be aware of our "new normal" life that revolves around medication checklists, flushing of central lines, and our constant reminders for Mac to drink something. To many this may not seem like a big deal, but it was my oasis. My time away from hospitals and my home with the constant reminders of this horrific disease.

Each day brings another step on this journey we never wanted to travel but could not have asked for more supportive family and friends to walk with. Thank you all for standing by us and continuing to pray for Mac. We could not ask for more than to have our good days outnumber the bad ones and that is exactly what God has given us so far!