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Again, where has the time gone? So much has happened in the last couple of weeks and we have lots to report on. It was JB’s idea to write a “Thanksgiving message” for Mac’s website and it was me who fell down on the job and never got the post up last week. Better late then never, right? The day before Thanksgiving we woke up early and started to talk about all the things that we have to be thankful for…you could see the wheels turning in JB’s head. He so poignantly noted, “We have a lot of things to be thankful for.” I agreed. We took turns saying what we were thankful for and JB’s list, not surprisingly, far surpassed ours. Marshall and I said things like we were thankful for our family and friends who love us and for Mac’s doctors. JB’s list included the following:

I am thankful for my family and really Mac; I am also thankful for Dr. Carrye and Dr. Nick (Mac’s doctors); I am thankful for my school and my house; I am thankful for the balloon fairy (who drops two balloons on our doorstep every Tuesday after chemo); and I am really thankful for all these presents and especially for Toy Thursday from Karen (and David) Landsdowne.

I thought it was a pretty good list.

We had a great Thanksgiving dinner with all of our family together. Usually, between the Campbell’s, the Breit’s, and the Wilhelm’s, there is a cast of thousands at holiday dinners. This year, because of Mac’s condition, we scaled back. Although we missed all of our guests, it was nice to be low-key… and to serve a gourmet meal on paper plates (my brilliant idea that Mar and Ga agreed to!!).

About three weeks ago, Denver had a week of brutally cold weather. Up until that week, Mac and I had been getting out for walks regularly, since otherwise we were cooped up in the house all day. Well, with the frigid temperatures and Mac’s counts being down, we spent that entire week inside – literally, all week, with the exception of chemo, without a trip out. So, by Friday night, when Marshall came home from work, the boys and I told him that we must get out. Marshall’s response was that we weren’t supposed to take Mac out. I knew that and thought – to hell with the rules tonight, we are going out! Both boys knew we were breaking loose and were so excited!

At 8pm that night, when most reasonable parents are putting their kids to bed, we were bundling our kids up and taking them out! As we loaded into the car, we called Mar and Pa (Marsha and David) to either one, say goodnight, or two, invite them with us on our jail break. They were in! So we picked them up and all piled into our car for an adventurous Friday night! We went to a great Mexican restaurant that we love and we had an awesome dinner. I was nervous about bringing Mac out in public and planned to wipe down our table and the highchair at the restaurant with my Clorox wipes. We discussed on the car ride over how I would tell the waitress who seated us that we mean no disrespect to them by sanitizing their furniture, but that we had a sick baby and needed to do it. As we were being seated, I told the waitress just that. JB then chimed in “Mac has cancer and chemo and is bald and that is why he can’t be around any germs and why we needed to disinfect his highchair.” Oh boy. Such a talker he is! I then explained how much we just needed to get out of our house and this was the place we wanted to come. The next thing we know, a round of margaritas was delivered to our table from the owner. She told us she was honored that we chose her restaurant to come to, especially given the circumstances. It was so thoughtful… and of course, brought tears to my eyes.

And the waterworks continue for me these days… I find myself tearing up (or down right crying) more and more. Whether it is looking out my bedroom window to see my neighbors raking our leaves, or going into JB’s classroom for the Thanksgiving lunch and seeing a basket the size of a trash can filled with “chemo day” presents, food, and gift cards from all the kids and families in JB’s classroom, or finally being able to return to work where I could not ask for two more incredible bosses or a more supportive group of colleagues, or standing in the elevator at Children’s holding Mac when a random woman nods and says to me that God only picks the children with perfectly round heads to get cancer, because they still look so beautiful even after their hair falls out. I never use to be a crier… for better or worse, that has now changed.

One of the things that has been really difficult for us over the past several weeks (that we were just recently able to articulate) is that we are now “on the other end.” Both Marshall and I are usually the ones meeting others, our clients, who are in crisis, who have hit their rock bottom, and who desperately need our help, our advice, our counseling. Often, they are the ones crying. We are the ones in control, who provide guidance and expertise to those in need. Although not a truly accurate comparison between these legal and medical realms, the tables have now turned, and we are the ones who are desperately seeking help and guidance and advice from Mac’s doctors. We are not in control of this situation and it is such a hard thing.

In the interest of not turning this “update” into a novel, here is my last story. Earlier this week, a nasty stomach flu hit the older generation at our house. I was the first one down, and Marshall followed the next day. It was brutal and thankfully the boys never got it because we were able to ship them each to a respective grandparents’ house for 48 hours. Again, what would we do without Mar and Pa and Ga and Gumpy who step up to the plate on a moments notice. I was even too sick to take Mac to chemo on Tuesday so my mom, Marsha and David stood in. They were incredible – they texted a play-by-play, all Mac’s lab counts, everything they knew I was at home wondering anxiously about. They called themselves “Chemo Team B” — I call them Chemo Team A+.

Through all of the pain, grief and heartache we have been hit with, I wonder, everyday, how it is affecting our boys. At times I try to convince myself that Mac is too young to remember this when he gets older, but I have a feeling that no child who goes through cancer, even a child of Mac’s age, escapes this experience without it somehow being ingrained in who they are. Mac has such a sweet, strong spirit – even on really tough days. He is gentle, but he is a fighter. I know he will beat this cancer and he will go on. What will JB take away from all of this? I think what he will take away is how many people love him and his family…that generosity and kindness to others are good things and make the world a better place… that even when life gets really, really hard (because cancer f*u*ing sucks), you still go on…

Erin has been encouraging me to “chime in” on the blog for the last month.  I have been reluctant to do so as she tends to have a better way of finding the silver-lining in the tough situation that we face.  Regardless, this is my attempt to contribute.

The last week has been really difficult.  JB came down with Strep Throat on Saturday.  For the last 6 weeks, we have been hyper vigilant about germs in hopes that Mac would not get sick. Given his compromised immune system, a common cold can be a serious issue for him. While we knew that Mac would eventually get sick in the coming year, unrelated to the cancer, we have tried to do everything possible to delay the inevitable.  In some ways, our efforts seem ridiculous in that JB is in pre-school around 100+ little kids 3 times a week, Erin and I are frequently in and out of jail (for work), and Mac is at the hospital every week.  Nonetheless, we were not prepared when JB finally did get sick.  The anxiety of not knowing where this could go or what it could mean was rough.  Fortunately, it all ended well.  Our pediatrician is amazing and had JB examined, diagnosed and on antibiotics by 10:30 Saturday morning. Our parents, who have been rock solid, jumped to action and helped us keep the boys separated for the weekend.  We dodged a bullet in that Mac did not get Strep – but the experience underscored how fragile he is right now.

Mac had his third “big” round of chemo on Tuesday.  Erin and my mom had him at Childrens by 8 am and they were there until 5:30 p.m.  Mac was a trooper, like always.  He was smiling, playing with every expensive piece of medical equipment he could get his hands on when nobody was looking and even was able to overlook “hospital food” wolfing down anything and everything he could get his hands on.  Chemo days are draining.  It is hard keeping Mac occupied in a hospital room for 10 hours, trying to process everything the doctors and nurses are saying, and most difficult of all, seeing all the sick kids. It only takes about 2 minutes on the pediatric oncology floor to put everything into perspective. It is a really difficult place to ever feel “comfortable.”

Erin would say “Mac really struggled with chemo this time around.”  I would say it differently.  I would say, the last three days f*c*ing sucked.  Mac was hardly phased with the first two big rounds of chemo.  So, I am guessing that the cumulative effect finally caught up with him.  Within an hour of getting home on Tuesday, he turned ghost white and was vomiting violently.  That lasted all night and well into Wednesday. His longest interval of sleep was maybe 20 minutes.  Erin literally never left his side and was calm and in control. I wish I could say the same for me.  At one point in the middle of the night, Mac was so physically exhausted that he was not even waking up when he got sick.  We were scared he would choke on his own vomit, that he was getting dehydrated and whether or not this was a normal chemo reaction or something different.  Mac’s oncologist, whom I am beginning to think might actually be a saint, was on the phone texting with Erin throughout the night, walking us through things.

Mac is coming around, but it was scary how sick he was.  The hardest part of the last couple days for me is seeing him so sick and vulnerable and being totally helpless.

The “protocol” for this type of cancer, for somebody Mac’s age, calls for 40-some weeks of chemo followed by “local control” – either surgery or radiation- usually at 12 weeks.  We are on week 7, so we have decisions to make in the coming weeks.  Both surgery and radiation are effective against this type of cancer, however, each carries with it its own risks and consequences.  We have talked to many different doctors about our options.  We have also tried to do our research.  Unfortunately, there are a lot of unknowns and no easy decisions.  This is a rare location for this particular type of tumor and Mac is younger than most of the other kids who have to go through this.  That all translates to there are no black and white answers, which in turn, translates to frustration and anxiety for us.  We are overwhelmed by the magnitude of the decisions that we are going to have to make in the coming weeks.  Balancing quality of life concerns with a desire to be as aggressive as possible in attacking the cancer seem to be objectives at odds with one another. With that said, I remain confident that we will get this figured out.  Mac’s doctors are amazing.  Their constant willingness to dig deeper, talk to more people, and look for more answers is incredible and inspiring. Erin and I already feel that we have incurred a debt we can never repay for everything they have done for us, and more importantly, for Mac.

In closing, Mac is incredible and cancer sucks.

It has been almost two weeks since our last update and we have good news to report. After last week’s ultrasound of Mac’s bladder and prostate, we learned that his tumor is responding to the chemo and it is shrinking. Because the tumor shrunk enough, the doctors were able to remove Mac’s catheter in hopes that he would be able to pee. And he peed!! We have never been so excited to change diapers in our lives! Although Mac did great navigating life with a catheter in for a month, it was definitely an added stressor that was hard to manage with an active 13 month old. The night that the catheter came out he slept so soundly… and through the entire night, which had not happened since his diagnosis.

Mac had his long day of chemo last Tuesday and another short day of chemo yesterday. He has been tolerating the treatment well and continues to have a smile on his face at each appointment. After last week’s treatment he was more tired than usual and had some vomiting, but nothing that we weren’t able to manage at home. Fortunately, Mac still loves to eat, which I love to see. He also loves to crawl around the house, read his books and play with his brother. Sometimes I have to remind myself that he can still be a “normal” little boy and that he isn’t just a cancer patient. It is amazing how all-consuming a diagnosis can become – and as we adjust to our “new normal” we try each day to appreciate all that Mac can do, even with cancer. On that note, last Friday we dressed the boys up and went trick-or-treating around our neighborhood. We had lots of fun! At literally every house, JB would say trick-or-treat and then promptly follow-up with, “Also, can I please take a piece of candy for my baby brother, Mac?” Good thing Mac has someone looking out for him! When we got home, JB wanted to count all of his candy – 103 pieces to be exact. When we reminded JB about how nice it was to collect all that candy for Mac, and inquired about half the candy technically being Mac’s, JB said that the candy had too many grams of sugar in it for Mac, and that he better keep it all. Again, what would Mac do without JB… and what would JB do without Mac?

Throughout the last two weeks we have continued to meet with different doctors/specialists about Mac’s diagnosis and potential courses of treatment. It is unbelievable how exhausting it is just sitting in a doctor’s office or hospital exam room with a doctor for a consultation like this – you’d think we were training for a triathlon! It is usually a toss-up as to who looks more spent when we leave… Marshall or me. What we have begun to realize is that the doctors don’t have all the answers. Mac’s age, type of cancer and location of his tumor is a scenario that is proving to be more unique than we thought, which is tough for us as his parents. I met another mom of an 18 month-old girl with leukemia yesterday at clinic. As Mac was flirting with this sweet bald baby girl, the mother and I started to chat about our babies with cancer – when were we diagnosed, how’d we know something was wrong, what was the course and length of treatment, etc. This mom said that one of the best things for them was that everything has been so streamlined – the type of chemo, the length of treatment, everything, was all mapped out for them on day one when they received her daughter’s diagnosis. She said that they didn’t have to make any decisions, that the course of treatment and what to expect was very well defined – black and white. Never in my life did I expect that I would be envious of another mother with a child who has cancer, but yesterday I was. I thought to myself how much I wished Mac’s situation were black and white… that the doctors could tell us exactly what we needed to do in terms of treatment for the best outcome. Do this chemo on this date; do this surgery on this date. Period, end of story, as JB would say. I wished that we, as Mac’s parents, didn’t have to face so many choices, so many “options,” and so many unknown outcomes. For us, nothing seems black and white, instead we are living in the gray area. We will continue to collect as much information as possible so we can make the best decisions we can for Mac going forward. As overwhelmed as we feel at times, we try to also remind ourselves that Mac is an incredible baby. He is strong and he is a fighter… and he will get through this. Please keep sending love and prayers – we know they are working!

We have had another very busy week and I’m not quite sure where the days have gone.  Most importantly, Mac has remained healthy this week and we have been able to stay at home. We went for his “short” chemo treatment on Tuesday and he was a rock star.  Mac’s blood counts were surprisingly good again this week, which is great news. Even when the nurses are accessing his port for blood draws and to give the chemo, he is smiling…and Mac’s smile lights up the room. He is getting good at sticking his pointer finger out for the pulse/ox machine and he opens his mouth and says “ahhh” on command when the doctors need to take a look inside. It is a toss up as to what provides him with more entertainment… the automatic Purell hand-sanitizer dispenser or the doctor’s stethoscope! We are learning the routine on our “chemo days” and are so appreciative to have a grandmother or aunt with us to help. Next Tuesday we go in for our long day of chemo, so are already planning how to attempt to keep him occupied. 

Our families continue to be amazing and help more than we ever thought possible. Our friends and colleagues also continue to reach out to us and support us, which makes a world of difference. We are so touched by all who have sent messages or emails or phone calls – the outpouring of kindness from our communities is unbelievable. After enough time at Children’s, and seeing what other families are going through (some with little support), we are again reminded about how fortunate we are. Marshall and I also talk daily about how incredible the staff at Children’s has been. The doctors are always available to us when we need them or have questions, the nurses at the clinic are great, and one of our close family friends, who happens to be a veteran doc at Children’s, has literally been our life-preserver, keeping us afloat, since Mac’s diagnosis. 

Christmas in October…
Almost every day since we have been home from the hospital something has arrived at our house. People have been so generous. The meals that have been delivered are delicious (and all three of my boys are thrilled that I am not cooking!).  The groceries that miraculously arrive in our kitchen have spared me trips to the store and Costco. And the gifts for the boys have been a welcomed distraction. At one point last week, I contemplated taking some of the gifts and stashing them away for Christmas, or taking them to the hospital to donate to other kids in need.  But when JB woke up from his nap and came down to find his second gift-wrapped package on the front porch and said, “Mom, this is like having Christmas, but it’s October!!” I decided to stop worrying about too many gifts at once or the boys getting spoiled or stashing gifts away.  I think, if anyone deserves Christmas in October, it’s these two sweet boys. 

Late night hair cutting party…
Mac’s hair started to fall out last Sunday… Hours after we took some great family pictures at our park. Just like they told us, one day it would just start coming out in clumps. There was hair everywhere. Yesterday, after chemo, we were eating dinner and Mac started coughing. He had put a handful of food in his mouth that was also accompanied by a huge clump of hair. As we came to his rescue and tried to fish the hair out of his mouth, he started to laugh. Marshall was almost in tears, but Mac was smiling. Mac reached his hands up to his head, while looking straight at Marshall, and pulled another big chuck of hair out. Still smiling. Mac was telling us that it was ok… It’s only hair… And that it is a nuisance now.  After dinner, Auntie Polly, JB, Mac and I went outside and cut what was left of Mac’s hair. Marshall stayed inside. Mac looks darling “as a bald,” as JB calls it. Who needs hair to be incredible?? Not Mac! 

Assistant for a day…
Last Friday, Marsha took JB to school and there was a note on the classroom door. The note said that one of the kids in the class had strep throat earlier in the week. Marsha did not let JB into the classroom and immediately called me and asked what to do with JB. My first thought was to bring him home as we cannot risk exposing Mac to any illness at this point. Then, I remembered how excited JB was about “shabbot sing” at school and I thought about how disappointed he would be if he had to leave school. How was I going to explain to JB that because his brother has cancer, he can’t go to school today – doesn’t seem fair.  In buying myself a few minutes to make up my mind as to what to do, I asked Marsha to talk to the school director (who knows JB well and knows about Mac) about the situation and call me back. My phone rang 5 minutes later and Marsha said, “Handled.”  The school director instantly handled the situation.  It took her about six seconds to come up with a plan. She looked at JB and said she needed as assistant for the day. She needed help in the office, she needed help researching owls (a fascination of both of theirs), she needed help setting up the auditorium for shabbot sing, and she needed a special friend to eat lunch with her in her office. JB’s eyes lit up and without missing a beat, he was her man for the job! What an impressive school director, I’d say. How lucky and special I felt that entire day… that she was willing to do that for my son… And for my other son.  Thank you. 

Mac was released from Children’s Hospital last Monday night, 10/6, after he received his first dose of chemo most of Sunday. As we had been at the hospital for a week with a combination of aunts, grandparents, and us always at Mac’s side, it took a few hours for us to pack up the hospital room and head home.  Seemed like we had been living there for months! Mac seemed very relieved to be at home, in his own crib.  He slept for nearly nine hours his first night home, which was a drastic improvement from his sleeping patterns at the hospital.

We are adjusting to our life at home with Mac’s diagnosis.  He has a catheter, which has been stressful for Marshall and I to tend to without a nurse’s supervision.  Also, due to his chemotherapy treatment, Mac is very susceptible to infection.  We sterilize our house from top to bottom multiple times per day.  JB took quickly to the new routine of using hand sanitizer, taking off shoes, then washing hands whenever we enter the house.  He is quick to remind all of our guests to do the same and always assures them, “it’s for my baby brother Mac, so he can stay healthy.”

Mac had another chemotherapy treatment at Children’s yesterday, 10/13.  We were there for a few hours and Mac was a star patient as usual. The nurses accessed his port and he did not flinch. So brave. The doctors said he looked great and after receiving his blood work, were pleased to see that his counts were good. Mac will get almost a year of chemo (in three week cycles, with shorter treatments every week). Again, we remind ourselves that this is a marathon, not a sprint. There are still several decisions about his course of treatment that need to be made. We are so fortunate to have such incredible family support and an amazing team of doctors that are helping us with these tough decisions every step of the way.

People are amazing…

-Last week after Mac’s first chemo treatment we got to come home. Obviously, it was great to be home, but we were so nervous about taking care of Mac without the security of the nurses being two minutes away, or just down the hall. JB obviously picked up on my stress surrounding Mac’s catheter, and caring for it properly. During one diaper change, I realized we had run out of the gloves I was supposed to be wearing. I called for Marshall to help and both Marshall and JB came running into Mac’s room. As Marshall and I discussed what to do and where to go buy more gloves, JB quietly stood back and assessed the situation, and then he was gone. I assumed he didn’t care much about our “glove problem” and returned to playing with his toys, or writing down his numbers. But, within a couple of minutes, he came back into Mac’s room with something in his hands. JB said, “Mom, I know you are out of gloves to change Mac. I got you this seran wrap from our kitchen to put all over your hands and fingers so you won’t get pee on you when you change Mac’s bag.” I didn’t know whether to laugh or cry when JB said this to me. Way to problem-solve, right? Three year olds are awesome. Who needs sterile gloves when you have seran wrap?!? Thanks, JB! You are amazing.

-Our first day being admitted to the hospital was rough. Between the sleep deprivation from being up all night in the ER the night before and the overwhelming news that Mac’s tumor could be cancer, we were in rough shape. Most of that day was a blur, but one thing, we will never forget. After we got Mac situated in his hospital bed crib and oriented ourselves with all the equipment in the room, the nurses station, etc., we noticed a purple card sitting on the counter in the room. In black capital letters, the outside of the card read, “PAY IT FORWARD.” I opened the card and read… tears started to stream down my cheeks. The card was from the mom of the little boy in the hospital room a few doors down from Mac. She had seen us moving in and saw what a hard time we were having – her message said that she has been in our shoes. She wanted to offer her support and tell us that as hard as this is, we will get through it. She included $40.00 in cash in the card – she said “I know it’s not much, but hope it helps a bit.” A complete stranger, who had never even met us before…dealing with her own tragedy with her son, and still was able to do this for us. I have kept her card and the $40.00. Some day, I will be able to pay it forward. That mom is amazing.

-We have been home for just over a week now and we are all hanging in there. Some moments, we are hanging by a string, but we are still hanging! Everyone has been so thoughtful and we appreciate it so much. The cards, the food, the gifts, the calls, the texts, and all the positives thoughts to Mac have been incredible. Thank you. Mac has done surprisingly well and his spirits remain high. His laugh and darling smile still light up our world everyday. I don’t think it is any coincidence that Mac has learned to kiss this week since being home. He kisses his Lovey, the characters in his books, and anyone and anything he can get his hands (or lips!) on. He is a smart little boy and he knows how much people love him… he can’t talk yet, but I know he wants to make sure he tells people how much he loves them too. Mac is busy sending kisses. He is such a trooper – and completely amazing.