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.

September 26, 2011

We had a little bit of a bumpy road this weekend. Jon was very tired and started to get sick from the antibiotic he was on. We were able to talk to the doctor and she recommended we stop the antibiotic to see if it was making him sick. Sure enough, he hasn't been sick since he stopped it. :)

Sunday was a really good day, he slept for most of the morning only waking up to take his meds. Once it was football time he started to wake up and stayed awake the rest of the day. He watched football the whole afternoon with Seth and Ben. He was able to eat a scrambled egg and kept it down! He really enjoyed watching the Raven's win. Yesterday was the first time he was commenting each play! It made me really happy to hear this and watch him enjoying football. :)

This morning he was very tired again and his urinary tract infection symptoms seem to be coming back. We immediately called the nurse who told us to call Dr. Miller to find out how to get the antibiotics back in him. We are still waiting to hear from Dr. Miller to find out what to do. I think we might be visiting St. Agnes this week to try and get this straightened out. I will keep everyone posted on Jon's status through the week.

We have a baby Bruce appointment today and will hopefully get lot of pictures for Jon to see. He has decided to stay home and rest. 

September 22, 2011

Good evening everyone, I wanted to give you all a quick update on Jon (with Anne's help). He had an appointment at St. Agnes today with Dr. Miller. Jon's weight and oxygen levels are up, which is good. Dr. Miller was happy with the air flow in his lungs. He does have a urinary tract infection which will be treated with antibiotics, but she was generally pleased with how good he looked. She was also glad that Jon had put himself back on a liquid diet to reduce the vomiting, and didn't' seem overly concerned about how tired he has been. Unfortunately, as soon as they got home Jon was sick to his stomach. Jon seemed to think that he had eaten too much ice (he loves the hospital's crushed ice). Anne says that he's been sleeping most of the evening. Anne continues to take wonderful care of Jon and she now has a little baby bump. Thanks again to you all for your continued support. I don't know what our family would do without you. Prayer requests: Tumors will shrink Jon will gain strength That the antibiotic will not upset his already tender stomach Continued strength and good health for Anne and the baby Lots of love, Susan, Sue, Susie, Mom and Grandmom :)

September 20, 2011

I am really slacking when it comes to posting! I write them, and then have my awesome sister in law look over them (she is an english teacher) and then I forget to post. I should be caught up now.

We are continuing to take each day as it comes, everyday is something different. Jon was doing really well at the end of last week he was starting to eat a little more. He was able to keep a piece of toast with jelly down one day, and then a poached egg another day, and some scrambled eggs over the weekend. He really enjoyed the scrambled eggs and you could tell after he took that first bite. Then towards the end of the weekend he trowing up. Jon has decided to try and stick to mostly a clear liquid diet to try and keep things down. He has been napping quite often and doesn't have a lot of energy but seems to be more comfortable. He is in less pain which is a good thing but it is still hard to tell if the Zelboraf is working. He was scheduled to have a CT scan on Thursday but Dr. Miller has decided to give it more time before they put Jon through the process of a CT scan (even healthy people don't enjoy the contrast liquid). Jon has 2 physical therapy appointments this week. Jon told the physical therapist he wants to be pushed. He would like to get active as quickly as possible. He did mention that the pain in his legs seemed to be a little better yesterday which was good to hear.

I started typing this before the physical therapist came, I am now finishing it after he left and Jon walked outside today for about 15 minutes! I went to the dentist this afternoon so I was not here for his walk but Jon said it felt good to walk outside. Jon said Landy, his physical therapist was very pleased with how good he did! Jon seemed to be in a good mood when I got home and seemed excited to tell me about his walk :)

Now it's 8:45 and it's time for Jon to be unhooked from his TPN gotta go :)

Tuesday 8/13/11

We woke up early to get Jon unhooked, so I thought...I opened the TPN bag and realized it was still full! I messed up and for got to unclamp the TPN, was nervous to tell Jon. I told him and he was very calm and said we should call them and see what we should do. So I did like he said and called the TPN company and our nurse, good news was the TPN was good for 24 hours! Jon wanted to switch the TPN to daytime so it worked out well. I started TPN pump and then we started the day. I got Jon in the car with the help of my mom, and we were on our way to the hospital.

When we got to the hospital I got Jon checked in (just by walking by and waving, he is like a celebrity there!) The nurse Linda had his fan, and bed all set up and was waiting for him. She immediately started working on unclogging his picc line. it took a little time but eventually she got it! While we were there we were able to have Jon's labs done while we were there, as well as see Dr. Miller which was a bonus! She listened to Jon's lungs because the home nurse was concerned when she heard some crackling. Dr. Miller listened because Jon was concerned as well. However Dr. Miller was pleased because Jon had not had crackling before and now he is, she said this means the crackling that sounds like rice krispies is from his lung, its the sound of it expanding and she was pleased at the improved air flow. We waited for the lab results to come back before we left.

The results came back and some of the levels were borderline low. Dr. Miller came by and said she didn't think he needed one because the levels were borderline. But after talking to Jon and hearing that he was pretty tired she decided against her first decision and wanted Jon to get a blood transfusion. She said it can only help and make him feel better. She scheduled it for Wednesday.

After we made the appointment for wednesday we headed home. Jon was happy to be home and not looking forward to tomorrow but knew it would help him. We had a few visitors throughout the evening and then we did our usual nightly routine with unhooking the TPN and taking care of all Jon's meds.

Jon's home! Sunday September 11, 2011 I wrote this and never posted it :(

Hello Everyone,

First off all, I apologize for not posting for the past few weeks.  We did not have internet in the hospital, and by the time I got home in the evening it was usually pretty late, so I would go strait to bed to do it all over again the next day. So this post may be quite long...  It has taken me 3 days just to type it!

Jon ended his 16 day hospital stay when he came home from the hospital on Sunday afternoon during the Raven's game. He started his Sunday watching all the game day pre-shows. He was able to see the beginning of the game while waiting to be discharged. We were ready to leave around the 3rd quarter. We got all of Jon's stuff loaded up in the car, and then he was brought down. Thank goodness 98 rock plays the game, and we were able to listen to it the whole ride home. We arrived safely, and Jon got reacquainted with his recliner and then checked out his new bed in the living room. He saw last few plays of the game once he got settled. Once we got everything situated, Jon rested while I put things away and tried to get a little organized.

The rest of the evening was pretty hectic. We had to figure out medicines, as well as meet with a nurse. On top of all this, we had to make sure Jon was comfortable. His mom stayed for a while to help me with everything, and it was very nice to have a helping hand. After a while, we heard from Jon's home nurse when she let us know she was on her way. I was pretty nervous because she was going to show me how to hook Jon up to his TPN (Total Parenteral Nutrition) through his Picc line. She arrived with quite a few boxes and got right to business, walking me through mixing up his "steak and eggs in a bag." There were a lot of different steps to remember. I felt okay doing it with a nurse but was even more nervous once she left and I realized I was on my own to unhook him in the morning. I tried not to freak myself out and focus on the steps in my head.

Once the TPN was all hooked up I went back to the kitchen started walking myself through it in my head to calm my nerves. I sat down for a few minutes until it was time for Jon's premeds. These are the meds that Jon takes an hour before the Zelboraf medication. These include anti nausea meds and Aleve to help him stay comfortable. We were able to get through the first evening and night. I slept on the couch so I could be near him in case he needed me during the night. The night went well, and we woke up early to unhook the TPN. I started to unhook the TPN and realized the one line was clogged, so we called the nurse. I continued to unhook the line with the TPN and accidentally squirted Jon a little in the face when I unhooked it! I tried not to laugh but couldn't help it. The clog was the only issue I had that morning and the nurse that was coming in the afternoon was going to try to fix it. We continued the daily routine of TPN, Premeds, and Zelboraf and hoped we could get the line figured out later. Then I took a much needed nap (any one who knows me knows I hate naps!). I was so worried about Jon the night before I woke up anytime he moved. I think my body need a little more sleep.

We received many different phone calls that day from all the different people that were making appointments to see Jon this week. It was extremely confusing to figure out who everyone was and what they were planning on doing. We had different nurses, as well as a physical therapist and an occupational therapist. As the day went on, I continued to help Jon do whatever he needed and get him whatever he needed.

The nurse came that afternoon and went over paperwork but didn't seem too worried about the clogged line, Jon joked with her a little, saying that was all he wanted her to do. He was a little worried that she wouldn't be able to do it. Unfortunately, it was too big of a clot for her to fix without medicine. For the remainder of the evening, we did our best to figure out a way to get the medicine to our house. No such luck. Dr. Miller said to come back to St. Agnes where they would take care of it. Jon was not happy about having to make that trip, but he does whatever needs to be done without complaining. After the news about having to go to the hospital in the morning, I started preparing Jon's TPN and got him hooked up with the supervision of the nurse. After starting the pump, I did the normal night meds, and then we watched TV till we went to bed.

September 14, 2011

Hi Everyone,

I just wanted to give everyone a quick update. Jon was able to come home Sunday late afternoon. It was so good for him to be home but it was exhausting getting everything set up for him to be comfortable. Anne missed her calling and should have been a nurse. She very quickly learned how to set up Jon's IV nutrition. It's a very complicated procedure and she jumped right in. I am her back-up and hope that she's always there because I'm not as nearly as confident as she is.

Since being home, they have had to go back to St Agnes two times. Once to unclog Jon's picc line and the other to get a blood transfusion to give him more energy. Jon is happy to be home and it's nice to see him and Anne able to rest at home and have some time together. We are asking that you contact either Anne or myself if you would like to visit. Jon has very limited energy at this point and really needs to be able to rest to keep up his strength.

Anne and the baby are doing well. Jon's home care nurse made a prediction about the sex of the baby...we'll have to wait and see if she's right...:) God has blessed us with an amazing daughter in law. Anne continually amazes me with her grace, strength, intelligence and love. She is very funny too and I am constantly in awe how she takes each day and it's challenges and finds a way to smile and make it all work. She is going to be such a good mother! She and Jon are a great love story. Even in times such as this, they are fun to be around!

As always you are a blessing in our lives. Thank you for all that you do for our family.

Prayer requests:
Jon will be able to eat and keep down food
Jon's breathing will continue to improve
Anne and the baby Bruce's continued good health
Physical comfort for Jon
Shrinking of tumors

Lots of love,
Susan, Sue, Susie, Mom and Grandmom:)

Sunday 8-29-11 I wrote this and never posted it! It is old but you might be interested in it.

The past few days have been a step in the right direction. Jon is still very weak and doesn't have much energy but he has said because he felt so bad the last few days the slightest improvement has made him feel better. The last time he weighed himself at home he weighed 150, the nurse weighed him this morning and he is already back up to 164! Each day we pray he gets a little stronger and a little more energized. He was able to start introducing clear liquids back into his diet today. He started with jello, and then some orangeish/redish broth that he said "tastes like there is squash in here." He had a little more chicken broth later in the day but wants to take it slow. Jon doesn't need to stress about eating now because he is receiving "food" through a PICC line. The Doctors want him to just start slowly, and get as much as he feels he can handle with out feeling bad. Dr. Miller said because he really hasn't had a full meal in months, his stomach is very small and can only handle a little at a time. Over the next few days he will continue to get "food" through the PICC line but also continue to increase the actual food intake gradually to help get him eating again. Dr. Miller predicts that Jon will be in the hospital a few more days to get him a little more healthier before he comes home. Jon is very happy where he is because he can feel his body getting a little better each day. He will keep his picc line in when he comes home to continue to get his "food." We will get a visit from a home nurse regularly to help us change the dressing and keep it clean.

His stomach pain was controlled for the majority of the day and he was able to stay awake and visit with his many visitors. Ian, Hillary, Justin and Katie came by after lunch. As soon as they left uncle Russ, and aunt Lauren were in the area and wanted to see how he was doing. By the time his dad and Shawna arrived he was pretty worn out, he took a little nap. After his nap for the rest of the evening we shared stories and just talked. It is really nice to see Jon smile and get excited over small things like Scratch-offs. I may have created a monster, or the other way around because I never used to buy them. Jon has always LOVED scratch-offs but has limited his amount so he would not lose money. I had some a few weeks ago in my wallet (I never have cash). I know he likes scratch-offs so I figured I would get a few to give him something to do. When I brought them home you would have thought I had the coolest thing in my hand. His eyes lit up and he was so happy. He proceeded to scratch them over the next few days and they were all winners!! He was very proud of me for getting him winners. He ended up winning like $12! So of course next weekend when I was going back to Martin's he asked me to cash in his winnings and get more. I did, and this week he won $40 he was so excited! It has been just as fun for me watching him scratch them, as it has been for him scratching them. Watching him today scratching away was really nice to watch, he was concentrating and really studying each card and getting excited even when he wins $1. Seeing Jon smile is one of the best things in life right now.

Hi Everyone!

Although it's still too early to tell whether the Zelboraf is truly "working," Jon seems to get a little stronger each day. He's very focussed on taking things one day at a time and is content to remain at St. Agnes until his doctors feel that he is physically ready to go home. The wonderful nurses and doctors at St. Agnes take such amazing care of him and watch him closely. They seem to legitimately care about Jon and our family and want to see him healthy just as much as we do--well, almost :)

Jon and Anne (and the rest of our family too) appreciate so, so much all of your prayers, happy thoughts, well wishes, cards, scratch-offs (one of Jon's new favorites), and visits. In spite of how challenging this ordeal has been, Jon and Anne have both maintained the high spirits and happy natures we love them so much for--and your support has had quite a bit to do with this. We can't thank you enough.

If you're thinking about stopping by for a visit, please make sure you give one of us a call or text first. Jon is frequently out of his room for testing or PT--sometimes for long lengths of time--and we'd hate for you to sit around waiting for him to return or to wake up from the nap he needs afterwards.

Thanks again for all of the support you've shown our family. Jon, Anne, and the rest of us are lucky to have people like you in our lives.

Jon's Surprise

Jon's nurse practitioner was able to pull some strings and brought a doppler machine to Jon's room so he would be able to hear his baby's heartbeat. However the baby didn't cooperate and we were unable to hear it, so the wonderful nurses decided to bring a portable sonogram machine up to his room and Jon and I were able to see the baby for the first time together! We received our first pictures of Baby Bruce. We also got to see it move for the first time, it was really exciting and made Jon's day! He told all of his doctors and the nurses about what happened. I think almost every nurse came to Jon's room to see his new picture. He was like a celebrity that all the nurses were talking about. It really lifted his spirits and he has had good day ever since :)

Yesterday he worked with the physical therapist and they showed him how to safely go up and down steps once he comes home. He started with 2 stairs and said "okay now whats next?" they were pretty easy for him. Then he went to a full flight of stairs, he was able to do the whole thing slowly! He was out of breath when he got to the top but he did it! 

For now we are just hanging out in the hospital getting stronger. 

Thanks you for all of your support!

Anne

Last week's update

Dear family and friends,

Jon was admitted to St. Agnes Hospital on friday the 26th for hydration and nutrition. Because of his continued stomach issues, he had been unable to get enough in to sustain him. After a few days of IV's Jon is feeling stronger and getting some color back in his cheeks. In case you missed it, the medicine that you all have been praying for arrived Saturday and he has been taking it twice a day without any noticeable side effects. We are not seeing any positive response at this point either, but it is still early. We have had a couple of bumps in the road this week. Jon asks that you please pray for his emotional strength as well. I can only imagine how exhausting all of this is for him but he continues to smile at his nurses and make jokes. He will be in the hospital for a few more days at least. They are talking about maybe Tuesday, Sept. 6th.

Please keep our family in your prayers, Jon is fighting the good fight. He has continued to be encouraged by your cards, texts and letters. Anne has been there with him every step of the way except for last tuesday morning when she went to hear the baby's heartbeat. She was able to record it on her cell phone for Jon to hear when she got back to the hospital. Please remember this precious baby she is carrying.

Dr. Setya called me yesterday to let me know that Zach's mole definitely needed to come off but he got clear margins so no further surgery is needed. We'll just need to keep an eye on him.

We are so grateful to have all of you in our lives.

Prayer requests:
The Braff drug starts to shrink Jon's tumors
pain management
Anne's health and the baby
a good transition from hospital to home
encouragement and peace

Lots of love,
Susan,Sue,Susie, Mom, Grandmom :)

We recieved great news yesterday afternoon. The zolboraf drug was scheduled to be delivered to our house before 12:00 noon Saturday!!!

It is now 12:35 on Saturday, and we are currently waiting for the pharmacist to check it in and for the anti-nausea medicine to take effect so he will be able to keep it down. It is 12:43 now and he just took the first pill of the first dose! He is very happy to have this drug in his possession :)

Thank you everyone for your support through this difficult journey!

Anne

Dear Friends and Family,

Jon was admitted today to St. Agnes Hospital to receive intravenous Nutrition and Hydration through a pic line. He has lost a lot of weight and was getting very weak so his doctor wanted to "build him up" so we can get the potential best benefit from the new Braff drug. "Zolbaraf" is not a cure but it is supposed to reduce tumor burden so Jon will feel better and hopefully regain some strength. He should be in the hospital for a few days.

We did get the good news this evening that the drug will be delivered to Jon and Anne's house tomorrow by noon. Thank you all for praying. This was truly a miracle since so many things had to fall into place to receive this newly approved drug that literally just arrived in the United States this week. It is being shipped from North Carolina so please pray that the coming storm doesn't cause any delivery problems on this end. Many people have offered to drive or fly across the country for us to try to get this for us...we thank you from the bottom of our hearts.

Jon is truly touched by all of your prayers. Please continue to keep our family in your prayers. Zach leaves to begin his sophomore year of college tomorrow. He also had a suspicious mole removed from his back yesterday so We ask that you pray for a good lab report. Continue to think of Anne. She is almost through her first trimester and has a tiny baby bump that makes me smile whenever I see it! Jon is taking good care of her, insisting that she eat more vegetables. Anne, of course takes amazing care of Jon.

In the midst of each day's struggles we continue to feel God's comfort and experience His mercies. Your prayers have allowed me to have the strength to put on my "super Mom" cape each day and attempt to serve Jon and Anne as they walk through this journey together.

Love and blessings,
Susan,Susie, Sue and Mom (Grandmom:)

--

This message has been verified by LastSpam (http://www.lastspam.com) eMail security service, provided by Micro Performance
www.microperformance.com

Tuesday evening

Good evening everyone!

This has been a crazy week...of course we had an earthquake!!

Jon had a pretty good day today. He had eaten his breakfast and we were having a nice visit when the water in his glass started to shake. His whole house felt like it was rolling...he knew immediately what it was. I thought it was the construction workers across the street! Anne was texting us within minutes giving us updates. She shared with me that she initially thought that it was a weird feeling from being pregnant! :)

In the meantime, Jon's Dad Barry was trying to get some clear answers about when we can expect the "BRAFF" drug. Basically Dr. Sharfman and Dr. Miller are doing everything humanly possible to try to get it for us as soon as possible. Please continue to pray that we can cut through the red tape and that all obstacles will be removed so we can get this medication this week.

Thank you so much for continuing to pray for and support our family. Some of you are asking again for Jon and Anne's address. Jon LOVES cards! Thank you so much for all of you who have encouraged him in this way!

Jon and Anne Bruce

1901 Lennox Dr.

Unit 37

Sykesville, MD 21784

Lots of Love,

Susan, Sue, Susie, Mom :)