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.