No Surgery

Due to scheduling conflicts Mac did not have surgery today. We did not find this out until 4:30 pm. So, after a full day of fasting Mac has just finished dinner... a bowl of fruit loops, a package of crackers, 2 boston creme donuts, 2 hot dogs w/rolls, a bag of potato chips and some junior mints.

Surgery is now scheduled for Friday at 7:30 am. They are hopeful chemo will begin Friday afternoon.

Tuesday, January 31st.... I think.

Yesterday we met with everybody to discuss the treatment plan for Mac. He will begin chemo this week followed by weeks of testing, 6 weeks of radiation,  more testing and medications. The usual protocol for his situation will not work because of his hemorrhage after the 1st surgery. The plan we will follow is
individualized for him. It takes us through mid-december followed by another year of chemo. At this time, we are holding out hope that Mac will make medical history and be the first to survive this type of tumor! I am told miracles happen everyday so there is no reason to believe Mac can't be one of them.

Today, he is going into surgery to have a Broviac port put in so that he will not need to be stuck with so many needles during treatment. While in surgery they will remove the staples from his head from the 2 previous surgeries and perform a spinal tap. Mac is scared this morning and hungry. So far, this morning has been a bit rough for us. It started after dad left this morning and someone came in to take blood work. It took 4 nurses to get this done. Three to hold Mac down and one to escort me sobbing out of the room. This experience led to a conversation I never in my wildest dreams ever thought I would have to have with my child. Even now as I type the tears are flowing.  Mac and I discussed that he had brain cancer and over the next months that meant a lot of time in the hospital and a lot of time not feeling well. I told him to cry and yell whenever he wanted to because it was ok to be sad, scared and angry.

Sr. Lori, the principal at Mac's school, shared this prayer with the families of the St. Margaret community and I want to share it here. We can not put into words the feeling of compassion everyone has shown. Thank you all and please continue to pray.

Prayer to St. Julie Billiart

Saint Julie, through your great devotion to the Sacred Heart of Jesus, you were miraculously cured and

favored by many graces. By your powerful intercession, obtain for us above all, great trust in God in all the difficulties of life, the strength to accomplish in all things the adorable will of God, and the special grace we now ardently ask of you… that Mac be healed and return to good health. Amen.

Report

 Mac's Pathology report came in today. I think the doctors were as floored by the results as we were and still are. It seems this nightmare we are living in is much worse than expected. Mac has been diagnosed with a grade 4 astrocytoma tumor. It is as bad as it could possible be. We are meeting with the interdisciplinary team on Monday to learn more about his protocol. Tomorrow he will be moved to the Cam Neely Bone Marrow Transplant Ward were they handle all pediatric cancer patients. He will begin his chemotherapy at some point this week. Please continue your prayers and good thoughts... we need them more now then ever.

Thank you all for your continued support.

Family Affair

Mac's Uncle Mike who lives in Raleigh, North Carolina is supporting Mac long distance.  Check out the  link.

http://www.stbaldricks.org/participants/BigMacFight

We promise to post photos of "Muncle Mike" with a shaved head!

We've Moved!

Mac moved out of PICU this evening! It is one step closer to coming home. We are hoping he will be able to come home for a little while to heal completely from surgery before starting his treatments. Although he is not eating as much as I would like he is making progress. Everyday we are able to see more glimpses of our Mac. He went to the playroom today and painted and even played his Beyblades for a few minutes. Tonight is dad's overnight and I just got a message saying Mac has been laughing all night. We had the Star Wars Lego Advent calendar this year and Mac LOVED it. His favorite part was being able to "poke" the door to discover what guy or ship he would build. He told dad today that he felt like the Advent calender...."poke, poke, poke". He may be getting tired of all the doctors and nurses "poking" him!

Many of you know Mac's favorite breakfast is Boston Creme Donuts with cream cheese on top. In an effort to get him to eat I got him 2 donuts this morning (no cream cheese, we are taking things slow). He ate all but 2 bites!

A small update

I went home this afternoon to take Liam to the dentist (where he was treated by THE BEST, thank you Keri Boucher). We are trying to keep his life as normal as possible for the time being. Liam is holding up like a champ. Adjusting as life as we know it changes. He is a constant source of inspiration and strength for us all.

I received a call from dad saying the neurosurgeon came in after speaking with the  pathologist. Mac's tumor was found to be a grade 1, but had some areas had progressed to grade 2. Both are low grade and slow moving tumors. They are going to treat it as a grade 2 with a combination of chemo and radiation. This was the news we were expecting. Tomorrow we meet with the chief of oncology to set up our game plan as to what will happen next. As we receive more information I will update.

Tomorrow they are removing the external drain and hoping a shunt will not be needed. Mac continues to improve and everyday takes baby steps towards returning to the Mac we know and love!

still waiting...

Still no news on the Pathology report. Hopefully tomorrow!

Mac continues to make progress everyday. He smiled and even giggled a little today. He was able to get out of bed and shuffle his feet a few steps with the support of his nurse. He sat in a chair for lunch, although he is still not eating much. We were able to get a smile when he was enjoying his favorite treat, a cream horn!

Mac continues to make tremendous progress. Thank you all for everything!!