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!!

No News ...

Well, we thought today we would know more and be able to build a treatment plan based on the pathology results. Looks like we'll be waiting another day as the report was not yet available.

We're hoping to have some positive news tomorrow.

Small Wins!

Mac had vanilla ice cream with mini m&m's this morning for breakfast. He continued to improve during the day and enjoyed chicken nuggets, french fries, cookies and apple juice for dinner. He just ate a little but we will take it! I just got a text from dad saying Mac has requested I bring his glasses with me tomorrow so he can see the tv better. We are hoping these improvements continue. Although we know there will be good days and bad days we are going to take every small win we can get!

Sunday, January 21

Last night was a scary one.  Mac could respond to commands for touch - he could squeeze Becky's hand but when light was directed into his eyes there was no pupil response.  After being checked by several doctors they opted on a wait and see response.

Today was much, much better!  When we got to the hospital he had already had 'conversation' with his mom.  He first woke up around 5:15 and thrashed - then said "I need my gorillla".  When Becky asked if he could hear her he answered, "yep".  He was able to respond correctly when drs. asked his name and age.  When told he received a new baby gorilla he was able to smile and reach for it.

As everyone knows every 'superhero' must have a sidekick.  For Mac that is Gorilla.   Gorilla is a stuffed animal that he has had since birth.  In fact, Gorilla has had the stuffing loved out of him!  The Velveteen Rabbit has nothing on Gorilla who now has to wear a leather jacket so he doesn't lose anymore of his stuffing.

 Mac is complaining of head pain but that is to be expected!  He is still in PICU - we are awaiting the pathologist report which should be tomorrow. His bed is filling up with stuffed animals - especially gorillas!  Liam gave him a Patrick (from Spongebob Squarepants fame).  He has also received cards and wishes from his cousins and classmates at St. Margaret's School.

Great big thank you to Auntie Beth who had the foresight to bring in sandwiches and drinks for everyone in the waiting room today - Brings to mind our summer Mayflower beach picnics! 

Thank you, all for your prayers and support - Mac is on a long journey so please keep them coming.

Friday, January 20th

Mac had another really great day. Although he spent most of his time sedated he is still able to respond well to questions by nodding yes, wiggle his toes when asked and squeeze your hand. He  HATES his breathing tube and has tried to remove it several times. He wakes up every time it is suctioned out. He really enjoyed having his teeth brushed today! At one point I was talking to him telling him to close his eyes to get more rest. When I told him I loved him he was able to try to mouth "I love you" back.

The MRI showed just what they expected. A little blood pooling that they will continue to drain,some tumor regeneration (this was expected) and a large portion of tumor still present on the left side of the brain. This will be addressed with future treatment. We are just waiting for the biopsy results on Monday and then we will have a plan of attack.

Liam is the ever present supportive brother. The MRI took longer than expected today. As time passed my nervousness increased. Liam said "Why is everyone so nervous?" Dad tried to explain Mac has had 2 major brain surgeries. Liam's response was "He will be fine. The doctors know what they are doing." I like the way he thinks!

I have included a quick little video taken of Mac at Christmas. I know many of you know Mac, but for those of you who don't this captures the free spirit and fun loving kid that he is! Not to mention some really great dance moves.

Thank you all so much for your support. We would not be able to make it though this without you.

A Great Night!

An update from Becky: Mac had a great night. He had no seizures and was able to move all of his limbs and follow the doctors' commands. He even clenched his teeth when the nurse told him she was going to brush his teeth. All this, of course, was after he fully sat up and brought his hand to his head to try to pull out the breathing tube. All great signs!

He has an MRI scheduled for 3:15. The scan of his head and spine will take 3-4 hours. The spinal scan is just to confirm their belief that there is nothing there (his reflexes were great yesterday, which indicated that there was no impact to his spine).

More to come this afternoon once we know the results of the scan...

Super Mac

A little background on our hero, Super Mac, and the beginning of his battle ...

January 17
Mac was home sick with what everyone thought was a stomach bug. He had been up all night vomiting and struggling with a headache. Despite this, he insisted on going to his eye doctor appointment that afternoon.

During the visit, Mac's opthalmologist, Dr. Vicki Chen, noticed something unusual. The nerves behind his eyes were swollen, indicating that Mac needed further assessment because one of three things could be happening: 1) he could have high blood pressure, 2) he could have an infection, possibly meningitis, or 3) there could be a growth in his brain.

After consulting with Mac's pediatrician and her peers at Tufts Medical, Dr. Chen ensured that Mac would be seen immediately upon arrival at Tufts Medical Floating Hospital for Children.

There, Mac underwent an MRI, which confirmed Dr. Chen's - and our - worst fear. Something was growing in his brain. Mac had a brain tumor.

He was scheduled for surgery on January 18 so the neurology team could take a sample of the tumor for biopsy and remove what they could.

January 18
With friends and family praying and sending well wishes, and mom, dad, and Liam by his side, Mac spent his morning preparing for surgery. The team in the Pediatric Intensive Care Unit (PICU) even brought a Wii system to his room to keep his mind off the fact that he hadn't eaten in almost 24 hours...and wouldn't be able to eat pre-operation.

He went in at 3:35 p.m and after an hour of prepping him - sedation, IVs, etc. - the doctors began their work.

Just after 6:00, we received the update that surgery was "going as expected," which was good news as far as we were concerned. Two hours later, we learned that he was out of surgery and that the doctor would be coming up to give us some more information.

We knew that the surgical team wouldn't be able to get all of the tumor in the first pass given its location (in the area of the brain where spinal fluid is produced - and the fact that it was intertwined with veins and arteries) and size, but they took what they could.

We learned that the type of tumor is called an "astrocytoma," and that this type can't spread beyond the brain so its attack is confined (which is good). The tumor was quite large - 3 inches - but the fact that Mac has been so active with no coordination or speech issues indicates that it was a slow-growing tumor (also good).

We won't know more about the grade of the tumor or whether it is benign (non-cancerous) or malignant (cancerous) until later this week.

Overnight, Mac did well - his vitals were stable and he responded physically and verbally to the hourly tests that involved pinching him to make sure he was maintaining feeling in his arms and legs. He certainly was! As Billy said, he woke up swinging a couple of times! He was angry about the constant prodding and the fact that he was stuck with a catheter and IVs....this reaction is GREAT NEWS because it indicates that everything is functioning normally in his brain.

However, despite all this goodness, the spinal fluid was pooling in his brain and causing additional pressure. The doctors determined that they were going to go back in and see if they could relieve that pressure and identify its root cause.

January 19 - morning
Mac went back into the operating room with the same surgeon who had performed the original biopsy and removal the day before. We were all thrilled by this news as this surgeon received high praise from the staff on the PICU floor.

By 10:30, he was out of surgery and the team knew what had caused the spinal fluid to stop draining - blood clots. They determined that they would monitor his blood flow to ensure that it continues to work normally and allow the spinal fluid to drain appropriately.

They also decided that it would be best for Mac to remain sedated over the next 24-48 hours to allow his body to rest and recover.

What's next?
We know that Super Mac can fight this! He is a healthy, strong kid and he's in good hands with the amazing staff at the PICU. The fact that he was able to run, play, think, talk, and throw a dance pa-hty over the past several days and weeks is such great news because it means that even before we knew it, he was fighting the tumor.

More to come on the biopsy results and the neurology team's treatment plan! Keep those prayers coming!

If you have specific questions, submit them to this blog and we'll get answers posted as soon as possible!