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.
Bonnie
Erin and Marshall, the families you come from our smart and strong and loving; those are spectacular (and I am calling them genetic) qualities to have and to pass down to your children, JB and Mac. They are strong and smart and loving; that gives each of them a leg up on whatever comes their way. I love you guys all so very much and am sending it out into the world every day with Mac’s smile on each loving thought..xox Bonnie
Oct 15, 2014 @ 01:26:05