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!
Wednesday, May 30, 2012
Thursday, May 24, 2012
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!
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!
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| Liam and Mac at Applebees during our Dining to Donate to benefit team Super Mac Attacks! |
Friday, May 18, 2012
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!
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!
Tuesday, May 15, 2012
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.
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
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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.
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Saturday, May 12, 2012
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!
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!
Monday, May 7, 2012
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!
Thursday, May 3, 2012
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.
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
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