October 27, 201

Jon has been doing well, nothing has really changed so I haven't had much to write. He continues to notice side effects such as, hair loss, joint pain, fatigue, nausea, and vomiting from the Zelboraf. We saw Dr. Miller today and she was pleased by this because it means his body is absorbing the Zelboraf drug. She brainstormed a little and adjusted a few different meds to see if some of the symptoms could be relieved. She felt Jon's stomach area where the tumors are located and felt that nothing has really changed since the last time she saw him. She seems to think that the zelboraf has stopped the tumor growth, and is not getting larger. Jon did not have scans to verify this and will not have more scans for at least another month.  

Everyone's first question for me is if Jon is eating…He has become obsessed with cooking shows such as Chopped, and Iron Chef and he dreams about all the different places he is going to eat when he is able. He is not on a special diet, but is cautious what he chooses to eat. Some days are better than others, when his stomach is feeling okay he eats small amounts of food. This week he got brave and ate a few sushi rolls, avocado, as well as cucumber and avocado. He also has had a little chef boyardee spaghetti, and his favorite stuffing with a little gravy. He also has been watching the world series and has picked up his love for "seeds" again. He has multiple favors which include, regular, BBQ, ranch, dill and I just found another flavor for him to try chili lime. he says they give him flavor with out putting anything in his stomach. 

We are continuing to take it day by day.

I hope this catches you up :)

Baby Bruce update…

She is very active and I have been able to feel her move and I even received a kick or a punch yesterday for the first time! I can't wait till it is hard enough for Jon to feel! We are both doing well :)

October 19, 2011

We had a very exciting day today! We had our sonogram appointment today and found out Baby Bruce is officially a girl :) Jon got to hear the heartbeat for the first time, and we watched her roll around, punch, drink, and pee. The doctor said we are both healthy and that she is growing perfectly.

As for Jon, he is doing okay. There haven't really been any significant changes, so there hasn't been much to update. He has been extremely tired this week, and we are thinking it is from the medicine. We also noticed he has lost a little more weight since being home. We called Dr. Miller today, but she didn't seemed concerned about the weight loss. We are waiting to get the results of his blood work to make sure he is not anemic. They should have be available tomorrow. As soon as we know the result, I will try to update it on here.

If I don't post regularly, please try not to worry. Assume that no news is good news. Now that I am working again, it's harder for me to look at a computer once I am done work. :)

Thank you everyone for your thoughts and prayers :)

October 6, 2011

Dear friends and family,

Please forgive me for staying away so long! I am still adjusting to my school/teaching schedule and we have Alex and HoChang (our Korean foreign exchange student) both playing soccer but on different teams so there is a lot of driving at the end of each day to get both boys home.

Jon had an appointment today with his oncologist, Dr. Miller to get the results of his first scan since he started the Zolboraf.  The news was mixed. Jon's lungs are improving, his belly is staying the same and his liver is worse.  The good news is that, clinically, Dr. Miller is encouraged by Jon's improvement. He is much more active, his breathing is better and he has gained weight.  Because of this, Dr. Miller wants Jon to continue with the treatment and give the drug more time to work.

Thank you for continuing to pray for Jon and our family. He has been able to get outside some this week and has been taking walks around his neighborhood. He is able to eat bites of food but is still getting his nutrition through his pic line. He generally feels stronger but is dealing with nausea and vomiting from time to time. Anne and Baby Bruce are doing fine. Our little grandbaby is now the size of an onion.  Anne has an appointment for a sonogram later this month. Jon is hoping to go with her to find out if they are having a boy or a girl...so exciting :)

Prayer requests:

Jon will continue to improve and get stronger

Nausea and vomiting will decrease

The tumors will continue to shrink

Anne and the baby's continued good health

Love and blessings,

Susan, Sue, Susie, Mom and Grandmom

October 5, 2012

We had a great day yesterday! Jon started his day with a visit from the home nurse. She comes every Tuesday morning to draw blood, take his vitals and change the dressing on his Picc. She was shocked when she didn't see Jon in his bed in the living room. Jon slept upstairs on the second floor for the fist time since being home from the hospital Monday Night. Once the nurse left, Jon rested for the remainer of the morning, and afternoon.

Around 5:00 Jon wanted to get out of the house and decided to call his dad to see if he was coaching football practice. Jon wanted to watch, but they have a bye this week so Barry gave them the night off. So his dad suggested meeting at Morgan Run. We packed things up and headed to morgan run for a few hours and Jon loved it! He sat by the river, spitting his sunflower seeds, and talking to all of us. Jen and Riley were able to make it as well as Grace, Landon, Cole and Shawna. When we came home Jon was very tired but it was a good tired. He went to bed shortly after taking his zelboraf and slept well.

He has physical therapy today and also would like to have another outing today.

October 3, 2011

Today started a very big week for us, Jon went for his first CT scan since being on Zelboraf. Everything went smooth, we have figured out a system to get out the door more smoothly. We arrived at 9:30 and we were back home by 11:45. Once we were home Jon got comfy and took a nap. I took care of paper work and different appointment stuff while he napped.

Tomorrow he has his home nurse coming in the morning and then a quiet afternoon. Wednesday is physical therapy, and then Thursday we find out the results from his CT scan. I hope to post about the results thursday evening. Please don't think the worst if I don't get to post till Friday :)

Hope every one is enjoying this fall weather, I know Jon is :)

Update on Me and Baby Bruce

Many of you have been asking about me and have been concerned with my stress level and the health of baby Bruce. I am doing good, I am staying positive and taking each day as it comes. I am the biggest cry baby on a normal day and I have no idea what has happened, but I have cried but not as much as I thought I would. I have not thrown up at all, yes I have knocked on wood many times. Jon keeps saying god has taken mercy on us and giving me a break.

We had an appointment Monday afternoon for a check up, Jon was going to try to go but decided it was too much. It turned out to be a good idea for him to conserve his energy because it wasn't too exciting of an appointment. I did the hear beat which is always exciting! It was beating at about 150 the Dr. said. Jon is planning on going October 19th when we find out what we will be having :)

We did have a little scare this week, I started to get snotty Monday night and woke up Tuesday very snotty and tired. I drank tons of orange juice and stayed hydrated and took it as easy as I could. Jon told me he was very nervous when he saw me laying next to him in the recliner. I am not one to sit still or lay around I like to keep busy. I woke up Wednesday and felt back to normal, still a little snotty but felt so much better.

There is no need to worry I am taking care of myself, Jon makes sure of it! He makes sure I am eating my veggies and drinking lots of water.

October 2, 2011

Wow I can't believe it's October already!

We have had a pretty good week, this was the first week since being home we did not have to visit St. Agnes! This week will be a little different, he will be very busy this week. Jon has an appointment tomorrow morning to get CT scans to see if anything has changed. We will not get the results till Thursday when we go back to St. Agnes. In between all the hospital appointments he also has physical therapy and a visit from his home nurse.

Jon has started to see and feel some of the side effect from the Zelboraf. He has noticed more fatigue than normal because of this he had to cancel physical therapy on wednesday because he was so tired. We rescheduled it for Friday which turned out to be an amazing day for him. He took a good nap through the morning. Then around 2:30 I gave Jon his anti nausea, a couple minutes later they came right back up. About 10 minutes later the physical therapist came! I was concerned that Jon wouldn't be able to push himself as much as he likes to since he just got sick. However, when the physical therapist mentioned taking a walk outside Jon's eyes lit up and he said "I would LOVE to take a walk outside!" Once everything was ready Jon stood up to move to the couch to put his shoes on (thats a big deal too, he hasn't put his own shoes on in a while!) the physical therapist started the stop watch. He times Jon to monitor his progress. Shoes are on, Jon grabbed his really cool sunglasses that go over his glasses and we were out the door! I sent out a text to many people with this news which made them think I wasn't walking with him. I wouldn't have missed it for the world! I sent the text as he was putting his shoes on ;)

Jon walked down the side walk to the next building over and was talking the whole time. He was not out of breath and moving at a good pace. He said it felt good to walk and be outside. He walked outside for 11 minutes! When we got back to our house the physical therapist said "that was awesome!" Jon rested for a few minutes to give his legs a break then the plan was to work on "Everest." He climbed the stairs a few times and did exercises on the stairs as well. Then he cam back down to the first floor and dis a few more leg exercises standing and walking in a straight line! He was even talking about another walk later that evening. He was on a roll Friday, you would have never known he had gotten sick an hour before.

Once the physical therapist left we had a few visitors, his mom came over and my mom as well. Jon ate a little of my french onion soup from Panera Thursday evening and said it was the best thing he has tasted in so long and kept it down!  Friday he asked for more french onion soup, so I ran out and got him some, by the time I got back he had gotten sick again. He still attempted the soup but couldn't do it so he had me save it for him. He also said the other walk will have to wait. For the rest of the evening Jon rested and we watched home videos of when Jon was 3-5 years old fishing!

I will do my best to post often this week to keep everyone updated with his CT results.