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Jacob’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated about our little guy, Jake.

Visit often to read the latest journal entries, view the photo gallery, and write us a note in our guestbook. Get started by reading "My Story".

In September of 2010 our 6 year old son Jacob found a lump on his lower left leg, after getting cleaned up from the day. I was at parent teacher conferences earlier that day and my son stayed with his Pappy and picked pumpkins at their market (Newby's Market). I figured it was probably a spider bite, not knowing for sure what to do. I called the pediatrician and was told to bring him in the next morning.

We arrived at the doctors office the next morning with my other 2 children and 2 nieces and was told it was definitely not a spider bite, it needed to be x-rayed. So I shuffled the children along to x-ray and awaited the results. The nurse came to get us and I shuffled the children back to our room when I saw our pediatrician's face. He told me the nurse was going to stay with the children while I looked at the x-ray with him. I began to cry when I saw the lump on his leg. My heart sank. Jacob kept looking at me and saying don't cry, mama, it's just a spider bite. It will go away. It doesn't even hurt.

Well, through a lot of different doctors and extensive testing we found out Jacob has Stage 4 Alveolar Rhabdomyosarcoma at his lower left leg, lungs, and abdomen. We have been told that Jacob's treatment are going to be very long (54 weeks) of chemo, radiation, and surgery and that his cancer is very hard to treat at this stage. We sometimes have extensive chemo 5 days a week and it just breaks you and shakes you to the core. We make daily trips to Riley and we will begin staying inpatient starting in December.

Going through this roller coaster, words can't describe. Only God knows how we all truly feel. I believe in miracles. Jacob is a fighter. He's strong and a normal boy who likes frogs, dinosaurs, fishing, swimming, and playing outside. Even though we have no idea why this has happened to our son we are hopeful in an unhopeful circumstance. We will stand and fight this every moment of every week. God is good and I tell Jacob every day. Every time God hears somebody say Jacob in one of their prayers, God smiles and puts his arm around Jacob. If God can heal the blind to see and walk on water, I believe He has the power to cure Jacob. We don't always understand why we have to do the things that are thrown at us. But in this circumstance, we will stand strong and praise God for every moment we have together. We will overcome every obstacle, like swallowing 6 chemo pills a day. We will smile at every morning that we're made anew.

Thanks for all your prayers. Don't be afraid to talk to us. If you see us. We love all of you and want you to be apart of our journey.

Latest Journal Update

4 years

Dear Friends,
      I didn't want to update on the three year anniversary date, because frankly, I just wasn't very positive and I didn't want to seem negative and lash out at the rest of you. Today though, marks the 4 year anniversary of Jake's "Diagnoses day." I thought maybe I wouldn't have such a hard time with it today but man it has hit me like a ton of bricks for the last week. I still remember all the details of the day. I was told that Jake would be taken into surgery to do a biopsy of a tumor on his left leg. That was all that was supposed to occur during surgery. I thought that a biopsy was going to be no big deal. The Surgeon would go in and take a small piece of it and send it off for observation, right? No....that's not how it went.
      When we arrived at Riley, I went through the motions. First, I got on the elevator, holding Jake's hand and reassuring him that he would be okay. When we stepped off the elevator there was no room in the waiting area. The area was full. I signed in and the lady said to just wait a minute and a nurse would take us back to prep Jake for surgery. I knew something was wrong. I had that gut feeling like something wasn't quite right but I dismissed it because no mother wants to have to prep her baby for surgery, no matter what the age of their child. The nurse called us back and Jake was given his surgery pjs to get changed into. I remember him sitting in the chair and watching Spongbob, so calm, so quiet. Before, I knew it all the doctors and team of people started swarming in. First Dr. Wurtz, the surgeon, came in a discussed briefly what he was going to do with the biopsy. Then, the anesthesiologist, sign off on this and that form. Then the oncologist, hey what? What is this doctor and what does she want? Up to this point, I was not told that Jake had cancer for sure and that it was as serious as what it really was. All I could here was the word cancer. My mind went numb, my heart sank, and I was suddenly left in this room crowded with all these people, how I didn't pass out I have no idea. I heard her tell me about the central line and the spinal taps, but it didn't sink in. I looked at Jake and thought, this boy doesn't have cancer, there is no way. My blond hair sweet funny boy, does not have cancer. I almost felt like I had to ignore her and just tell her, "I don't know why you are bothering me, if you didn't know my son is going into surgery any minute and I just need to be left alone so I can hold him in my arms and reassure him that he is going to be fine, just like his baby brother when he had to have eye surgery. All was going to be okay. I just wanted to tell him, you have to go to sleep, but just for a few minutes to look at the bump on your leg, you may have a little bandage when they are done, but it will all be okay. There is nothing wrong. I will take you home when they are finished in about an hour and we will stop and get you whatever you want to eat and go home and watch movies the rest of the day. No big deal.  My life shattered before me eyes. Jake's life shattered before his very eyes. When they took him back, I was so scarred. I just kept thinking, no parent should ever have to do this. 
       I was so numb, so angry, so sad, all these emotions were just flooding. I felt faint. Ben's uncle was there and I just asked him to take me to the chapel. I went into the tiny chapel and sat on the floor and balled, cried, prayed. I have never felt so desperate in my life for God to hear me. I have never felt that way before. After I cried and cried in that chapel, I thought, I don't know why this is happening, I don't really remember what I said or did during those long surgery hours, but panic. Ben went to work that day. Since it was just a small biopsy, I thought I could handle going with a few family members. Can you imagine having to call your husband and tell him what the doctor told me? I just didn't have the right words to even make sense at those moments. All I kept thinking was, that it was all going to be okay.
      After waiting and waiting for hours for the surgery to be over, I was finally told that I could go back to recovery and see him. I went back and my heart sank. What the oncologist said was true. He looked like a child I didn't know. He had foreign tubes hanging out of him, central line, and his leg was completely bandaged from his knee down to his foot, and he had huge bandages on his back from the bone marrow aspirations. Shocking. Absolutely shocking. I kept thinking, what in the world am I going to say to him about all this. I had only prepared him for a bandage on his leg. I didn't know ahead of time about all this other stuff and how was I going to explain what the doctors have done? I just knew I was going to have to be very careful with him. My momma bear claws were about to come out. I also, worried about Gracie and Jonathan. How would I explain all this to them and how I was going to keep them away from him until he recovers. i just didn't get why? Why did this have to happen? 
      I don't know how the rest of that day went. I know I got him home and I just wanted to hold him and never let him go. I wanted to hold all three of my babies and keep them in a bubble for the rest of their lives and just never let them out of my sight. Somehow I managed, with lots of friends and family. I am sure everyone remembers that day differently than me. 
      Today we remember, my grief is huge today, but tomorrow is a new day. i have hid my tears from the kids, they went off to school and they don't remember what happened four years ago and that's okay. i want them to be happy and the kiddos are finally at the point where they are laughing and joking, play, and have a ton of fun again. I thought at one point last winter that I had lost Gracie forever. She lost her "Sparkle" as her favorite teacher at Monon would tell her. She lost her bubbly personality and completely shut done. She isn't that way anymore. She has grown so much. She is very kind and loves her baby brother. Jonathan adores her too. He is a smart little boy. Both of these kids have a bright future and I am lucky to be their Momma. Even though, we only had Jake for a short time, he changed me life. He changed my life in more ways than I can tell you. I am a better person today because he came into my life when I was 19. I miss him so badly it hurts some days, but I know he is happy and healthy in Heaven.
      As for how we are doing, besides this 4th Anniversary, like I said the kids are great. They are liking Bloomington a lot better now. They both have really good teachers and are making a ton of friends. Living on Campus has been fun and a new adventure. Gracie is still into art, anything art related, she loves. She is an awesome painter. She loves to write and play school with her being a bossy teacher! Jonathan is big into his ds like his brother was and the iPad. How to Train your Dragon is still a priority in our house. He enjoys playing with action figures which is different form how the other two have been. Jake loved dinosaurs, Gracie loved stuffed animals and horses, Jonathan's thing is action figures, transformers. 
        Ben is doing fine at work. He enjoys it more now that he knows everyone. Being the locksmith for a college campus, keeps him very busy. He works a lot of hours. He still fights his headaches that he has had now for a few years but I believe they have gotten a lot more bearable. He spends a lot of evenings playing games with Jonathan. Well, Jonathan driving him crazy until he plays games with him. 
        I am going to school and loving it. I have worked very hard this semester to achieve great grades. It has been very hard starting out. I expect a lot out of  myself, sometimes too much. There are days that all I do is sit in front of the computer. Study and doing homework has become a full time job. Everyone has adjusted slowly to me going back to school. We all have to work together a lot harder to get everything done around the house. I made a promise to Jake I would go back so I could make a difference and that is what I am going to do. End of story. I may drive myself batty and everyone else around me. I may sleep at the computer and wake up with post it notes stuck to my face, but I am determined to excel and be able to move on from this and make a difference in the world. Since I have started school, I just feel determined. Happier than I have in a long time because I feel purpose again. It keeps me motivated for sure. 
     I will leave you with this quote that I found on Pintrest.
"I want a life that sizzles and pops and makes me laugh out loud. And I don't want to get to the end, or to tomorrow, even, and realize that my life is a collection of meetings and pop cans and errands and receipts and dirty dishes. I want to eat cold tangerines and sing out loud in the car with the windows open and wear pink shoes and stay up all night laughing and paint the walls the exact color of the sky right now. I want to sleep hard and clean white sheets and throw parties and eat ripe tomatoes and read books so good they make me jump up and down, and I want everybody to make God belly laugh, glad that he gave life to someone who loves the gift. ~Shauna Niequist

I want people to realize that life is a journey. Sometimes the walk gets long and hard, you feel broken and battered. Sometimes life hits you so hard that you don't think you can make the journey anymore, but friends, the sun does rise again. There is a new day waiting, you just have to wait for it. Stay in bed, ball your eyes out, stomp your feet, punch a pillow, go for a run. Do what you must, but don't quit. The sun does shine again. It has taken me this long to find Tosha. This Tosha has never been stronger, she is a warrior in her own right. She will stand her ground and battle the storms, because she knows, the sun will shine again. She may look weak, she may cry, but don't question her, she is tough. We all have a journey to live. Jake made the most of his 7 years. I plan to live the rest of my life, however long it is, by being happy. By showing up for the day. Living and making mistakes, not letting the small stuff irritate me. Just living, hoping, dreaming again. If I can do it, y'all surely can.

29 people hearted this


7 Comentarios

Ashley Brown
By Ashley Brown
I thought of you the other day. I knew it was a struggle but I didn't know how much of a struggle. You are a good writer Tosha! You should think about doing that long term :-) Even though this post is almost a year old, I know you are still feeling pain but happiness at the same time. I hope you and the family are doing well!
Karen Alessandrini
By Karen Alessandrini
Tosha....it is so good to hear that you and your family are doing well! I miss Gracie and I cried (well...I cried harder since I was already crying) when you said Gracie was back to her old self again! I'm so glad to hear that! She's a tough cookie....just like her momma! Give her my love and know that you guys are always in my thoughts and prayers!
Dale Walker
By Dale Walker
Tosha, I have missed hearing about you and your family. Happy for you that your back to school. May you know whether or not you attended school you have made a difference. Your openness and honesty has helped me more than once. Only wish there was more this reader could of done to help you. I will continue to pray for you and your family.
Jeanie Braunschweig
By Jeanie from Elk River, MN
Wow. Just wow! Beautiful journal ...
Mel Carpenter
By Mel Carpenter
I still pray and think of your sweet family often....hugs and love to all of you!
Ann Theriault
By Ann Theriault
I'm so glad to hear you are all doing better now. I think of you and your family often.
Donna Kolby
By Donna Kolby
Tosha, I don't know if you remember me, but I worked in Radiology at Riley. I think about you and your family quite a bit. Jake was such a sweet little man. He made me smile when I saw him. I pray for peace and comfort for you all. I know Jake is no longer in pain.
4 people hearted this