Here is a long overdue update! Noah has had three treatments with his new protocol and he is doing well. There have been no serious side effects, with very little visible side effects at that. His appetite decreases a little after each treatment, and he seems a little more irritable for a few days after, but it is nothing compared to the other treatments he received. We are so glad that we have to go every other week for an outpatient infusion instead of spending at least one week every month in the hospital. Staying at length on the hem-onc floor was taking its toll on me, and I worried constantly about John driving from Athens to Birmingham so many times a week. Noah no longer requires a daily shot to boost his blood levels or weekly lab tests. This new treatment is definitely better, but still not without concern. Because there are no side effects, John and I find ourselves wondering, is this working? Will this help to keep this tumor from coming back? Noah is due for another MRI at the beginning of January. We don’t have a scheduled date yet, but please begin praying now for a good report and for John and I not to worry too terribly much about it.
Our family has had a very good holiday season so far and we expect that to continue. We had so much to be grateful for this Thanksgiving; the one year anniversary of discovering Noah’s tumor was November 21. I am just ecstatic that one year later he is doing so well. He is still developmentally on track and loves going to his nursery class at church to play with his buddies there. He runs pretty fast, is talking a mile a minute (some words are still intelligible but that will develop with time), and he can play the heck out of a drum set. This Christmas season has been great since he understands more about Santa and how that situation works. Last year he didn’t want to even be near Santa. (Bless the sweet “Santa” who paid us a visit at our home last year shortly before Christmas - Noah ran crying from him!) This year he mustered enough courage to sit with me while sitting next to Santa, and told him he wanted a “big truck to ride on” for Christmas. I do believe Santa will be able to fulfill that one request.
John and I are proud to announce we just celebrated our five year wedding anniversary. I jokingly tell people it feels like ten, in some ways good and in some ways bad. We have had to deal with some difficult situations that could have threatened our marriage if we hadn’t taken measures to protect it. Many of you know the strains that life in general can put on a relationship, and some of you know what happens when you throw a sick child into the mix with lots of stress and traveling and separation from one another. We enrolled in an 8 week course called Dynamic Marriage, which helped us to place a much needed focus back on each other while caring for Noah. It was very effective for us and we recommend it to any couple that is, well, married!
Lastly, I have to write about an experience I had while Christmas shopping last week. I’m sure a lot of you have noticed that many stores are accepting donations for St. Jude’s Hospital, among other organizations. I was in a particular store that was supporting St. Jude’s, and a customer in the check-out line in front of me was asked if she would like to donate. Her response, with a laugh, “No, Honey. I’m not at St. Jude’s.” She continued to talk about how all her purchases were for her, and it’s “all about me.” I felt like she had slapped me in the face. I was angered, red-faced, and wanted to tell her what horrible things I thought about her. I got so discouraged, thinking, five dollars, lady…that’s all it takes. Even one dollar. You just spent two-hundred and you can’t give five to a child that is dying. I left the store in tears because I realized how many selfish, uncompassionate, self-serving people are in this world. And then I remembered you, reader. I remembered how many letters of encouragement, donations, gifts for Noah, offers to clean my home, gift cards for dinner, acts of kindness, blood donations (I could go on) that were given to my family in honor of my little guy, and I praised God for you. I then decided that for every person that feels no need to help support a sick child and his/her family, there are at least 200 more that make the decision to give. That has to be the ratio, based on the love and generosity my family has received. After much thought about that one woman, I prayed for her, asked forgiveness for thinking the horrible thoughts I did about her, and moved on.
So thank you all, again, for helping my family through a very difficult time. I pray God will return the blessing to you times one hundred. I pray you have the most amazing Christmas season, and that you know joy, peace, and comfort in the midst of whatever it is that is trying to steal all of the above. Even though the world seems to be dying at times, I think about people like you - who give - and I see that His Spirit is still alive. Merry Christmas and much love to you all.
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.