Justine W.
Diagnosis: Osteosarcoma

Hello MACS followers,
                                 

Another three months has passed and Justine has been very busy this summer.  Justine is getting ready to start school and enter the 8th grade. Justine went to Hole in the Wall Gang Camp in Conn. She had such a good time and it was only fitting that her counselor was an above knee amputee herself as she had the same cancer when she was just 9 years old. I was so happy that Justine had somebody she could talk to and that could say to Justine “I know how you feel” or “I have been where you are”!! Justine has done so many amazing things since she started this journey at age 10. 
 
Justine turned 14 this past July and had a nice Birthday party with Friends and Family. She also went to two different camps this summer for kids that have had cancer or have cancer. Justine finally got to enjoy going and being able to do the things she had been waiting to do for so long. Justine also had to get a new socket this summer as she out grew the one she had. She picked a really nice pattern to have for her socket and it had purple stars and had glitter around them. The guys that make her sockets were telling her what a great pattern she picked out. 
 
Justine played volleyball last spring and her team came in third place out of 14 teams. She also played softball and her team came in second place which resulted in a trophy and Justine was upset as she felt she did not work hard enough to get first place. I tell you it was amazing to watch her play and see all the hard work she did for years in physical therapy pay off!!  I am excited to see what this year will bring for her and what wonderful things she will do in the year ahead as she gets ready to go to high school.
 
As always we thank everyone that sends cards and gifts to Justine to encourage her to keep going and to let her know that others are thinking about her. Justine and I  smile and love that so many people are cheering her on. Thank You again for the love and prayers and for following  Justine and us through her journey.

Jane (Justine’s mom)

 

I don’t know where the time goes…… I know that Justine keeps us so busy that three months just fly. Justine is doing very well and it’s been just over a year now since she got her first walking leg and has now gotten herself a fancy hydraulic leg. Justine was finding it very hard to make progress while trying to learn how to play her sports again and move the way she wanted to. Justine was able to borrow a leg from the people that make her sockets and do her prosthetic leg. Justine was so excited to try the leg and was told that she could use the leg for a few weeks. Justine had me call them the next morning to tell then they needed to order her that knee right away. Justine did have her new knee a few weeks later and found it was a much better way to be able to play volleyball and now softball.

 

Justine was able to play volleyball this winter and spring for the first time and she loves it! Justine learned how to pancake in volleyball and has been working on trying to learn how to run again. I am sooooooo proud of her and to see her play her sports shows that all her hard work in physical therapy paid off. Justine’s team came in third place for the season and she was treated just like everybody else. I really enjoyed watching her play and have fun as did so many others in the gym on the nights they played. We also want to say thank you again to Bucknell Softball Team for finding Justine here on MACS and for making us part of your family. We had so much fun staying with you all in PA and watching you play and getting to cheer you all on. We look forward to seeing you all again next year!

 

Justine is still having phantom pain and they had to go up her medication to help with it but it seems to be doing the trick. I would have never thought that she would still have phantom pain this long after her surgery but I know that some people do have this happen to them for a long time. Justine is coming up on her three year mark for being cancer free this July and she will also be turning 14 in July.  I can’t believe when all this happened to her and she got cancer she was just 10 years old I then watched my very mature daughter make the biggest decision of her life at 12 years old to have her leg amputated and now a year and half later she is finally starting to seem like a normal teenager doing all the normal things that kids her age do.

 

Justine still is trying to learn how to ride her bike and get on and off it. She still wants to learn to run as well. This has been a bit hard for her as we have not had Physical Therapy since March. Our insurance has said no more and we are trying to fight it but they view it as she can walk again and that she has gone for so long so they are done. I don’t understand how they can cut her off like that but we are trying to get her a bit more so we can work on the last couple of things that she really wants to do. I know we are trying to work on it with her but it’s not the same for her.

 

Justine will go in July for her x-rays and scans and blood work and to see the Ortho Doc to check in on her. She has also in the last couple of months had to deal with finding out she has a curve in the top of her spine and she was fitted for a brace at night. This happened as it just keeps curving more and more since they found it. Justine does not like it, said she can’t sleep good with it and does not want to deal with it. I just keep hoping it’s not making her back worse since she will not wear the brace. I know she has been through so much already and this was just another thing for her to deal with. I told her it could have been worse and to just look at it as another bump in the road we are on, however we are still right on course!!!

 

We again want to thank everybody for all the cards and letters, pictures and gifts that are being sent to Justine. I just can’t seem to keep up with the thank you’s to everybody. I tell you it really does put a smile on her face to read the well wishes and see something that was made for her, or see the great socks that she gets. I am so grateful that my daughter and other kids have this site to cheer them on when they have been fighting so hard in their young lives. Thank You again everybody at MACS and to all the wonderful people that have been keeping up with Justine. We really do feel blessed by all the love and support..

 

Thank You again,

Jane (Justine’s mom)

Justine W.
Diagnosis: Osteosarcoma

Hello Everyone,

There is so much to tell you about and what Justine has been through in the past three months. We had a wonderful Christmas this year and Justine got so many beautiful cards and gifts from her MACS family! I can’t express to you all how wonderful it is and how nice that so many are thinking of Justine. I know she tries to keep up with her thank you notes but she and I are having a hard time as there are just so many. If we don’t get one to you please don’t think we are not grateful for them, we very much do appreciate the thought and love in all that Justine is sent in the mail.
 
As for Queen Justine she just celebrated her one year anniversary of having her leg amputated and let me tell you it has been so incredible to look back and see how far she has come in a years time. Justine still shows no signs of caner and that is a blessing. Justine has been working hard in physical therapy and decided that it was time to take on another sport that she has been longing to play. Justine was cleared to play volleyball by her doctor and so Justine started a developmental program in volleyball. Justine’s biggest idol in volleyball is her sister Trudy and has been watching her for years. Justine wanted to play so bad and decided that she was ready to try. Justine was very nervous but she did go and she is still going and loves it. Justine was finding that moving was hard with the leg she had. I know she was ready to move more and was up to the challenge and we then went to see the man who makes her legs and shared with him some of Justine’s frustrations. Justine then was given the option to try a hydraulic knee that can be adjusted to what resistance she wants. I think you can see where this his going……. It was a huge hit and the next day she made me call to see if our insurance would cover this and when can she have it!!
 
The doctor sent a letter to them with a new prescription and the leg was ordered. They said it very well could be justified that she was ready for this and needs this to be able to be more active and doing what she is looking to do. This leg was much more in a reasonable price range as the C-Leg is about 32,000 and not covered by our insurance. We hope to be picking up her leg the first week in March. The other thing that has been going on with Justine is that we found out she is now going to need a brace for her back. Justine has a curve near the top and bottom and they want to stop it from getting any worse. It was upsetting for Justine to hear but the good news is she will only have to wear this at night and we can only pray it stays that way for her. I know she has been through so much and just did not want to have to deal with this as well.
 
Justine had also lost a lot of weight and we were getting really nervous about that. It seems to have stopped for now and she looks good and even put 5 of it back on. The doctors were happy to see that as they could not find out why she lost so much weight so fast. Justine is still having a hard time getting caught up in school but she keeps putting her smile on and getting through it all! I am very proud of her and all that she is achieving despite all the set backs she has to deal with.
 
Justine is also looking forward to playing softball again this spring and is all signed up and ready for that season to begin. Justine is going to be visiting the Bucknell University softball team that found Justine on this site. We met the team last year in MA when they were playing and we are going to be going down to PA in April and staying for the weekend to watch them play that weekend. They are also putting us up on the college campus and Justine, two of her sisters and I are looking forward to seeing the girls and coaches again and getting to cheer them on as they have done just the same for Justine.
 
It’s hard to believe that Justine is going to 14 years old this summer and thinking back to when Justine’s life was forever altered at the age of 10. Justine has had to endure things most of us will never know or have to know and yet she keeps smiling and pulling through it all. I know that she has had so many people cheering her on the way and this site has been so amazing to Justine and our family. I love that most every day in the mail Justine gets a note, card, letter, pictures or little gifts that let us all know she is being thought of. It really does help to know that when she is down or feeling like it’s just too hard that she has so many cheerleaders all around her. 
 
Thank You for checking in on Justine and we hope we have more great news for you in a few months and call tell you how well she did with volleyball and how softball season is starting out for her. Justine is going to be very busy now until June with her sports and being a kid! It’s something we only could dream about a year ago and look at her now!

Jane (Justine’s mom)