Happy Easter

Mac is still home and eating us out of house and home! He has been doing so well over the past week. He has had a few headaches which responded very well to just Tylenol. Wednesday morning he woke up and had a headache. I gave him Tylenol which did not seem to touch the pain. After about a half an hour I gave him some Ativan. We don’t have didn’t have anything stronger for the pain. He seemed ok after a little while. We traveled into Boston for his appointments. His headache returned when we were at clinic and quickly escalated to the point of him screaming and crying. No one at clinic had ever seen him in so much pain. The Neurologist quickly came in and ordered some morphine for him. He said there is no reason for anyone to be in pain for something they can quickly fix. He slept for a few hours while the sutures from his head were removed and I met with his doctor. We decided to go ahead with the Vincristine chemotherapy that was scheduled for the day. I also got a prescription for a pain medication to have on hand, but was told to call and come in if the headache returned with the same amount of pain. At that point they believed his brain was still trying to settle down after be manipulated in surgery and the fact that he was not at home and surrounded by people he did not know very well was the cause of the pain. If the headache returned they would do a CT scan but were pretty sure they would not find anything. Mac has not had a headache since and is in great spirits. Yesterday the boys were officially drafted onto the UMass Lowell River Hawks baseball team through Team Impact. They attended practice and Liam participated in batting practice with a lot of help form the guys. They were given their own lockers and are looking forward to attending the first home game on Monday! I had a nice chat with Liam yesterday on our ride home from school. He asked me if I missed teaching. I explained that I did miss it but am glad I am able to be home to take care of them when they are not feeling well. I also told him that most of all I missed our old life. He said “do you mean before Mac got cancer?” I said yes. He looked out the window and said sadly “me too”. I have been doing a better job of living in the present and not dwelling on the life we used to have or what the future hold for our family. The tears still come, but no longer daily. I felt so blessed this morning to be woken up my Mac in my room asking me for breakfast because he was hungry. When I came downstairs both boys were sitting together on the floor playing Legos. I could not help sheer joy I felt. Even with the dirty dishes, piles of laundry and bills to be paid, and all the cleaning my house needs I thought “this is what life is all about”. We used to take so much for granted in life, worrying about the trivial things. This year instead of stressing over having the perfect Easter all we hoped was that we would not be coloring eggs in the hospital and that both boys would wake up together, at home. We pray the Easter Bunny this year will make one stop at our house instead of having to make a 2nd stop for Mac at the hospital. I cannot help but feel selfish for this, knowing we should just be grateful to have Mac with us at all. So many families will wake up Easter morning with a hole in their heart that will never be filled. Too many families will just try to get through the day missing their angel who was taken far too soon. This Easter please keep Mac, our family, and everyone whose lives have been touched by Childhood Cancer in your prayers. Hug the children in your lives a little tighter. Most of all be grateful for all the miraculous things in your life instead of thinking of what you do not have.

3/21/13

Mac is home after a very long week! I cannot find the words to describe the joy I was feeling driving out of the parking garage yesterday when I looked in the rearview mirror and saw Mac’s smiling face. He is still uncomfortable with the bandage on his head covering the incision site and has been having headaches. Liam was a little surprised when he saw the bandage and had a long talk with Billy last night about some of his thoughts and fears about Mac and his cancer. Last Friday was one of the hardest days of my life. Watching Mac have a seizure they could not bring him out of and intubate him was one of the worst things I have ever experienced. I could stop the thoughts in my head from questioning if we had done the right thing in putting his little body through another surgery. Should we have just done the proton radiation? Should we not have pushed so hard to try to get samples in order to get tumor makers? Did we just go too far this time? There is nothing worse for any parent than looking back on a decision and wondering if you did the wrong thing. Mac has been having some headaches. Yesterday he had a pretty bad one and was crying. I climbed into bed with him to hold him. I knew it was bad when he let me lay with him. He said “Why is this happening?” I had no answer for him. I do not know why he has to go through this and may never know. For now we are just trying to get through each day with as little pain as possible. We are trying to get his strength back up so that he can start chemo again, which will put his body through a new hell. We are so fortunate to have so many people supporting us and helping keep Mac’s spirits up. We now are holding our breath and praying this year we will be able to color eggs for Easter at home and both boys will wake up on Easter morning together at home where they belong instead of separated because Mac is in the hospital.

Another good night

I just got an update from Billy. Mac had another good night. He is having a hard time sleeping with all of the leads for the EEG on his head and is still sleepy from all the meds and sedation but besides that doing well. He was very happy with the gifts from the leprechaun! The plan today is to clamp the drain that is in his head to drain his spinal fluid to watch to make sure the pressure does not build up in his head. If all goes well they will remove the drain tomorrow. They will also remove the EEG leads so hopefully he can get some rest. If all that goes well he will be moved out of the Pediatric Intensive Care Unit and into the Bone Marrow Transplant Unit if they have a bed for him. If not, we will be going up to the 7th floor. Fingers crossed the BMT has a bed! I had a great day yesterday with Liam. We watched a couple of movies and Cousin Carragh brought over a full corn beef and cabbage dinner for us! One of the movies we watched was Rise of the Guardians. I hadn't heard too much about it, but Liam and I loved it. It also could have been that it has been too long since I have put everything aside, cell phone, computer, and any other distraction and just watched a movie with him. I will definitely be doing that more often! This morning I am gong to be packing up for another week in the hospital with Mac. I hear we may be getting another storm and kept help but hope for another snow day for Liam! He has standardized testing this week and I'm not sure if his head will really be in it. Also a bit saddened to learn he will still have homework this week. With all he has been through I was hoping he could just come home after school to relax and be a kid while our family is apart and our schedules are all off. He has been through so much... Thank you all so much for all the prayers. I know they are being heard and have faith they will be answered in a way that will bring Mac home soon and feeling good. He has a lot of UMass Lowell baseball games to attend to cheer on the River Hawks!!

Overnight

I just spoke with Billy about how Mac's night went. I went home yesterday to get some rest and spend some time with Liam. Mac was stable overnight and surprised everyone with his ability to follow commands under sedation. He was even able to communicate to Billy when he had to go to the bathroom! His brain is telling his kidneys he has too much sodium so his body is not producing enough at this time but they are giving him supplements. They seem to have gotten his temperature under control and did not suffer any new seizures. The plan for today is to remove the breathing tube and bring him out of sedation. Hopefully it will be smooth sailing here on out!

3/15/13.... A scary day

Today I can only describe as one of the roughest of my life. Mac had been experiencing some high temperatures and intermittent seizures that were lasting a few minutes at a time. Each time Mac’s eyes would deviate toward one side and he would become unresponsive. This morning after the seizures began to increase in severity and number they decided to send him for another CT scan. Then they were getting ready to bring him down he began with another seizure. Only this time regardless of the medication they gave him they could not bring him out of it. His temperature spiked to 105. They had to intubate him to stabilize his breathing and sedate him. The scan showed no area of concern which put aside the fear of a major bleed or stroke. At this point they believe he has an infection causing the high temps. The high temps may be the cause of the seizures. They started an antibiotic and were able to get his temp down to 99.5. He continues with the breathing tube and remains sedated to rest comfortably. He will have an EEG overnight since there is no way to know if he has another seizure now that he is sedated. The doctors are hopeful Mac will not experience any long term effects from the seizures. We pray they can get the infection under control and put an end to these episodes.

Day 2-post op

Mac gave his nighttime nurse quite the send off this morning. During his hourly neurology check she noticed his eyes were off to the right a and he would not look when his name was called or respond to commands. His blood pressure and temp also went up. She immediately paged neurosurgery who ordered a CT scan and were here in minutes to examine him. It was feared he had a large bleed in his brain, had a stroke or seizure. Upon review of the scan they said everything looked as expected. He has a lot of swelling due to the surgery and this is around the time the swelling peaks before starting to go down. They increased his dose of anti-seizure medication and will be given platelets as those are low too. His poor nurse finally got to go home over an hour late but not before coming in to kiss him goodbye and say she was off for the next few days but would call in to check on him. Hoping this was just a quick bump in the road and we will continue with a smooth recovery!

Today's Surgery

As usual, Mac was extremely strong today. After five hours in surgery, his neurosurgeon came in to report that Mac did very well and that they were able to remove as much of the three new nodules as was safe. They will send samples out for testing to help inform Dr. Wolff's decisions around a new treatment plan.

Mac looked great when they brought him up after recovery. When mom and dad called his name, he opened his eyes. He was, however, still exhausted from his exciting week in LA, so he spent most of the afternoon resting with "Gorilla 1" and "Gorilla 2." Dad had a stack of Tom & Jerry DVDs ready to go whenever Mac was ready and mom was heading out for ring pops, which was Mac's first request upon opening his eyes.

While we were waiting for Dr. Heilman this morning, mom got an e-mail from Robert Downey Jr's team asking when was the best time for Robert to call Mac tomorrow. It is so amazing to know that so many people, some of whom Mac has only recently met, and many of whom have never met him, are thinking about him. Thank you to everyone who has joined us on this journey. Your support and prayers are appreciated!

Hopefully Mac will have an uneventful evening in the PICU and be ready to be moved to a new room tomorrow.

Amazing Week!

What a week we have had! I cannot thank everyone enough for all the support in helping Mac have his wish to meet Tony Stark/Iron Man/Robert Downey, Jr come true. We are so blessed to have met him incredible selfless people who had never even met Mac extend themselves to make it happen. We learned on Wednesday afternoon that we had been given the go ahead by Dr. Wolff (oncologist) and Dr. Heilman (neurosurgeon) to fly to LA on Thursday morning. We had the privilege of going to a reshoot of a scene from Iron Man 3 and meet Robert Downey, Jr. I was not sure what he would be like in person as compared to the talented man seen on screen. He was just as amazing in person. He was funny, empathetic and just a genuinely kind man. We are forever indebted to him for bringing such joy to Mac. While we were in LA we also spent some time at Universal Studios and went to the Santa Monica Pier. We all got a chance to put our feet in the Pacific Ocean for the first time. It was an amazing weekend that we will remember with fond memories for the rest our lives.

We finally got home at 10pm tonight. I am just waiting to throw some clothes in the dryer then off to bed. We will be heading into Boston tomorrow for surgery. We have to be there for 6 am then surgery is scheduled to begin at 7:30. He will also have his ear tubes replaced before the neurosurgeon begins. Surgery should last about 5 hours then he will be sent up to the PICU for recovery. We are hoping to just spend 1 night in there and then be moved to a room elsewhere. If all goes as planned (which we know rarely happens) he should be discharged on Saturday. Then we will wait a couple of weeks for the tumor maker testing results to come back. Once Dr Wolff has that information he will put together his new protocol.

This week will be a long one. My body is not going to know what time or day it is going from east coast time to west coast time then back to east coast time and tomorrow we will be on hospital time. I will try to keep this blog updated as much as possible but as long as he is in the PICU I will not have internet access.

Thank you all for the many prayers!!

03/05/13 Update

Yesterday was a big day for us. Nothing really happened medically, but Mac stayed in school for the whole day! I cannot remember the last time that happened. When he came home he said he had a good day and although he was not happy to have to go back again today he did. I am so glad he is feeling well enough to spend some time with his classmates before being out of school for a bit.

I had a long talk with Liam and when I say talk I really mean I pushed and pushed until he was in tears. I try to let him come to me when he has something he wants to talk about but I knew there was something going on. I have been trying to get him to spend time with some friends outside of school and have offered to invite people over to the house but he always says no. Finally, through tears he told me he didn’t want anyone from school coming to the house because he is embarrassed. He doesn’t want the kids at school to see his house and be around Mac because it is so different than everyone else’s. He is embarrassed when Mac cannot find the right words when he is upset and throws a fit, embarrassed that our house is so full of medical equipment and our routines to help Mac include IV poles for g-tube feeds and embarrassed that when we do go out as a family it usually means leaving early because Mac has had enough and is not feeling well. It was heartbreaking to see him feel so bad about expressing his feelings because he did not want to have them. I explained to him his feeling were never wrong. He has a right to feel whatever he feels. I know that no child in his class would ever say or do anything to make anyone feel bad about our situation, but an almost 10 year old doesn’t see that. He just see’s that our life in no longer “normal”. So this is my new “project”. I am trying to think of ways to help Liam see that although our home is not the same as most it is still a place for him to feel safe to express his feelings and I am hoping if we can do some activities outside of school with a few kids then maybe he will feel comfortable enough to invite them over.

Mac has surgery a week from today at 7:30 am. It should last about 5 hours and his surgeon explained it is not as complex as the previous surgeries but it is still brain surgery. Never in my life did I ever expect to be planning and prepping for brain surgery for my son, let alone a 3^rd one. I am not sure how or why our life has gotten to this point but for now we are managing ok. We have such an amazing support system between our family and friends I cannot even imagine what this would be like without all of you. As I think back to our life pre-diagnosis and I realize we really did have it all. It’s just too bad it takes risking losing it all to make a person realize it. So today I am going to grateful for another day and thankful for the chance to continue making our “new normal” as comfortable as possible.