Wow it’s been some time now since I have blogged. Although I have often thought about it I just didn’t seem to have the time to really say everything that has been going on in the Cuichings life.
So since I blogged last Ellie officially finished 3rd Grade. Although she started the school year off strong with pretty good grades they did slip this last semester. Not sure weather this is do to her memory loss, things getting more difficult, change in teachers or missing so much school. Probably all of the above played a part in this. But I am still so proud of her because most kids with brain tumors while doing treatment probably have a hard time holding a C average.
Right after school finished the same week we had a MRI checkup. And I am pleased to report the tumor is still stable. It has not grown and the doctor even said it looked slightly smaller to his Nuero oncology eye. The Brain tumor board that review Ellie’s case including all her doctors have decided to give Ellie a break at the end of August from chemotherapy. Basically what happens is she will stop treatment and do MRI’s every 10-12 weeks. If there are any changes in the tumor they will start treatment up again. This is a lifetime battle for Ellie there will not be a day when they don’t have to do MRI’s and check her tumor. But I am thrilled that she will get at least 10 weeks off. This chemotherapy is emotional exhausting for our family and we can really use a break.
We did have another huge step that took place this summer. Ellie went to One Step Camp (A camp for children that have or had cancer). She cried that she did not want to go and I would have to say it was the hardest thing I have every had to do sending her away to camp for a week. Well that’s what I said but my mom reminded me that it truly was not the hardest thing I have ever had to do as a mom. I struggled back and forth weather to send her but I truly felt like this was a huge important part of her life that needed to take place. I felt as if she needs lifetime friends that have gone and are going through what she is going through. With Ellie being sick since she was 6, I feel as if our family as a whole, rightfully so, hoovers over her and she needed to be more independent. So the camp is a pretty amazing camp located on Lake Geneva in Wisconsin. It almost feels like a resort. They have one counselor to every three kids, one nurse for every group, doctors from the actually hospital on staff during the camp. I had several people approach me about sending Ellie. Most of the camp counslors are previous campers who had cancer as children. But what I notice about this camp is the counselors have made life time friends from camp as kids and every year have a reunion at camp. Several of them told me that it was the best thing there parents ever did for them. I cannot say enough about this camp. They start as early as 7 years old but it took a while for me to send her. The drive to pick her up was the longest drive. Everything went through my head what if she hates me and had a horrible time. Well luckily she was all smiles when I picked her up. She spoke of the Dance they had, Fishing, boating, swimming, a carnival & and a magic show. You name it they did it in one week. One the way home she did not stop talking about camp and all her friends. When she came home I have noticed her coming out of her shell a little. I really feel that I made a great decision in sending her and am looking forward to sending her again next year. I have a feeling it might be another fight in the beginning but after a few days I think she will get in the groove and after a few visits to camp she is going to beg to go..
Lastly next Thursday is Run for Gus downtown, all proceeds benefit Children’s neurology oncology research. Dr. Goldman did tell me there are a few new studies’ that children’s are conducting that look very promising for brain tumors. If only they could come up with a cure some day. Think of all the life’s that could be saved. I will include the link to the Run for Gus Family event downtown. Like I said it is a family friendly event. Cuichings are planning on doing the one-mile walk, I know several people that are planning on doing the run. Either way if you can make it down it would be great to see familiar faces.
Lastly I just wanted to touch base on the young lady that is the cover girl that lost her battle with cancer this week. I posted a picture of an interview were she said a little fishy told me “Just keep swimming.” Well that is how I feel every Wednesday. I just keep on telling myself “Just keep on swimming” We will keep on swimming. What is the other option? Sink! and that is not an option for us. So we are swimming along and don’t plan on stopping.
I hope everyone has had a wonderful summer and are enjoying it as much as we have been.
FOLLOW THE FOLLOWING LINK TO REGISTER FOR OUR TEAM FOR THE RUN FOR GUS.. Ellie's Angels..
A mother with a battle ahead of her.