Help the Barbers Help Julie
Update on Julie-
Julie got out of surgery last night (11/21) around 6:00pm. She is such a trooper. She went into surgery asking about her cat and came back with the same concern. He is a good distraction for her. Nothing would make her happier than knowing that her friends and family are helping to cover the cost of O"Malley's surgery. She believes that they need each other. I do too.
Here is what we know…the doctors were able to remove half of the tumor because that was all he could get to safely. They have sent it off to pathology and we are hoping to have the results back on Monday.
She has a tough night. Her pain was intense while the doctors and nurses tried to determine the right mix that would take away her pain without making her so sleepy that the doctors couldn't wake her every other hour to examine her. Because they needed to open her spinal cord to get to the mass, it has affected the lower half of her body. She currently does not have any feeling from just above her belly button down. As you can imagine, this is very scary for Julie. The doctors are hopeful that she will regain what she has lost. There is no guarentee that she will get any of that feeling back. We wait….and pray....and wait.
She is right now having her 6th MRI to see what is going on in there. Julie will be in the hospital through next week. After the results come back, we will be able to make a plan to move forward. Julie may need to go to a rehab center before we go home. We will need to make our house handicap accessible so that Julie can come home with a wheelchair if needed.
There are a lot of "what if's" in front of us. We are going to try our best not to waste our energy on thinking about them. We are going to focus on the "what is" and take each day as it comes.
Thank you all for the amazing support and love that you have shown to our family. Julie is humbled by all of the messages and well wishes. If you have sent me a message and I haven't responded yet, please know that I have seen it, I appreciate it and I will respond. Sleep is not something that we get much of but I am hopeful for a better night tonight.
There is an uphill climb ahead of us both financially and spiritually but Julie is strong and has not lost her sense of humor. Please keep sending your prayers and good vibes in her direction. <3 Gratefully, Kate, Tom, T.J., Julie, Lily & Greta
Thank you to each and every one of you for taking the time to donate to Julie during this crazy time.
Her new space is well under way and should be completed in the next month. We can't wait to have her home♡
Keep it going...the more the merrier...
First off, sorry for the confusion, we are indeed still in Boston. Julie's HS hockey team was playing a game vs a team that is right on the MA border, so we went on a field trip. We weren't sure if we were going to be able to go to the game until just before it was time to leave. As soon as the game ended, we headed back to the hospital. Thank you Sara, Scott and Hunter for bringing us to and from.
Julie spent a month on the Pedi floor and is now two floors down, on the spinal cord injury floor. We have only been on this unit for a couple of days but it is clear that this is where she needs to be. In hindsight, she should have come straight to this floor. I don't know who made the decision to have her go to the Pedi floor, but I am not going to waste energy being angry about it now. I believe that everything happens for a reason. While it was extremely frustrating at times, we met some wonderful people over the past month. They were kind and loving, they just didn't have the ability to teach Julie the skills she needed to learn to be independent.
Now....moving forward...Julie has an amazing team on the SI unit. She is so excited after her therapy sessions. I can see her confidence growing as she practices the new skills she is learning. Like how to do wheelies in her chair and dressing herself from head to toe (not easy to do when your lower body refuses to cooperate).
We were told today that Julie will not be going home on January 26th, as we had been thinking. Her new doctor would like her to stay a bit longer so that she can have more time to work on being as independent as possible. We are all anxious to have Julie home (no one more than Julie herself), but we are excited for the opportunity she has here, so we won't rush it. We will go home when she is ready.
Julie's spirits are high, she is focused and ready to work hard. As soon as we get a new date of discharge, we will let you all know. Julie will be celebrating her 17th birthday here in Boston on January 29th. If you would like to send her a birthday card, I'm sure she would love it. :) The new address for her here is
300 1st Ave. Room 626
Charlestown, MA 02129
Thank you all for the continued love and support. Our whole family will be forever grateful for all of you!
We are getting settled in. Julie is very tired but otherwise doing great. Thank you all for your continued love and support. More later..
It's late and my body is tired, but my mind won't let me sleep. I need to reach out the only way that I can right now, through another long message. Please excuse the typos that are sure to be found through out this message...
Thank you. I will never be able to say these two words enough to adequately express the immense gratitude that I feel towards all who have reached out to our family. My heart is aching tonight because it is so full. Family, friends, neighbors and strangers near and far have filled my heart to overflowing.
Julie is doing amazingly well. She has been working hard to be able to do all of the things that she is learning in OT and PT. Her IV's came out today and her incision is healing nicely. If all goes as planned, we will be going to Spaulding Rehab Center in Boston the first part of next week. Where she will spend the next 6-8 weeks learning how to be independent. So that she can come back home and be a kid again.
She is full of questions and concerns like, what will it be like when I go back to school. When can I drive again and of course, how long before I can get in a sled and get back on the ice. I have no doubt that Julie will tackle all of these challenges the same way she has been tackling every new obstacle that has come her way in the last 4 weeks...bring it on! Nothing gets her down and nothing gets in her way. I love to watch the wheels turn as she is faced with a new challenge. She takes a minute to access the issue and then tackles it head on. I have heard her say to herself more than once "I'll just figure it out."
Only time will tell if Julie will find herself on her literal feet again. But figuratively, she is already there.
Hi Julie - we don't know one another but thoughts are with you and your family. Our 4 kids all graduated from Lebanon lots of years ago, so maybe than can make us "kind of family". They were very active in sports too and music too. Our thoughts and prayers will be with you.