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.