It has been over a month since I’ve sent an update on Julian, so it’s high time! These past weeks have just flown by and part of the reason I haven’t put an update together is that it’s been nice simply not having to think about clinic appointments and medical “stuff” for a while. The number of visits we’ve made to CHOC lately has really dropped off and it’s been nice to just have time for some normalcy. I’ve actually caught myself having moments when I had forgotten Julian had cancer. Of course, those are usually followed by a deeper realization that my child has cancer and thoughts about what would happen if a future scan shows a recurrence, but then the stuff of life pushes those thoughts away again and we get busy doing the things we need to do. We’ve gone to the snow for a day (an absolutely perfect day), to a jazz concert, to a few of Nolan’s basketball games, to the park, to church, to the movies and to the store to pick up some decorations. (Julian loves to decorate the house for holidays and had fun with Valentine's Day. The house is now decorated for St. Paddy's day. You'd think we were Irish or something!) Our outings are short and we usually have to go home early, but it’s been great to get out as a family again.
Julian is now in his final week of his 6-week recovery period from his last chemo. His hair is just now beginning to grow back. His skin color is looking better and he has more energy. He is also starting to eat a bit more and joins us for a meal or two each day. His “meals” still consist of only a bite or two, but he is trying different foods and it is nice to have him at the table with us. It will be a few more weeks until we can justify having the NG tube removed since he still needs the calories he gets from the night-time formula feeds. When we go to places where there are other children, there usually is a child who will ask him what the tube is for. Maybe those questions will also motivate him to want it removed.
He still has his catheter port (aka “his tubies”) in his chest and will probably have it removed after his next MRI which is in April. After that, he’ll have to be poked when blood draws are required or if an IV needs to be started. That will be tough, but on the other hand, he’ll enjoy the freedom to go swimming this summer and not to have to protect his tummy likes he has to now. He still needs to have two more infusions of antibiotic, as well as blood draws every two weeks for now, so it’s very convenient and pain-free to have that port right now.
He has also received a set of hearing aids. He picked out a bright red color and seemed to perk up that first day he wore them; he certainly could hear better with them. But he’s been reluctant to wear them around the house since he can function quite well without them. His audiograms continue to show that there has been no further hearing damage since November. But when school starts in the fall, and when he’ll be in an environment with lots of competing sounds, it will be very good to have those hearing aids for him. Yes, we are planning to get him ready for first grade! I hope and pray that all will go well with that adjustment and that he’ll have exactly the kind of teacher he needs. Julian seems to be on track with Kindergarten reading and math. His challenge is using his right hand for writing and it will probably continue to be a challenge for him in the years to come. He compensates with his left hand, but doesn’t have the control with it since he is naturally right-handed. He gets a bit tired of the work, so his endurance levels will definitely need to increase to handle a full day of first grade. Right now he has a teacher who comes to the house three times a week about 90 minutes each visit.
The other thing we’re working on is helping him make some friends. All his peers go to school during the day and his close neighborhood friend just moved last week. Since he has more time on his hands now, we’re exploring some home school groups and will try and meet a group for a park play date this week so he’ll hopefully meet some new friends his age. Nolan’s been a great big brother to Julian and plays with him as much as possible, but Little League is starting and that is Nolan’s big love so he’ll be busy with that for a while.
And finally, we have been meeting with the Make a Wish Foundation and they are working on a wish for Julian. I don’t have all the details yet, but I’m excited about it!
I am thankful for these past weeks and for your prayers. Thank you so much for partnering with us in prayer through this journey.
With love,Andrea, Rich and boys
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