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:)

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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 :)

I received so many messages from many of you this morning....thank you!

We had our appt with Dr. Sharfman from Johns Hopkins yesterday at noon. He was very gracious and saw us during his lunch hour. Dr Sharfman thinks that Jon will get relief from the newly FDA approved "BRAF" drug. We should know by the beginning of next week if Jon is able to receive the drug. Please pray that Jon is able to get this drug and it arrives quickly. Basically, BRAF reduces "tumor burden" in the body and is very fast acting which would give Jon some relief from his symptoms. It will allow him to regain some strength and feel better so he can get further treatment.

I know I keep asking but our family would greatly appreciate you praying that we are able to get this new drug by early next week. Thank you so much!

Skin Cancer Treatment Approved

Check out the link above if your are interested in understanding more about "BRAF" :)

Lots of love,

Susan, Sue, Susie and MOM :)

Dear friends and family,

Many of you have been asking for updates but there really hasn’t been much to tell you. Jon continues to try to rest and recover but has experienced lots of stomach issues, which have made it difficult for Jon to function normally and gain weight.

Jon’s doctors aren’t happy with the condition of his cells so they are regrouping and revamping his treatment plan. Some of that involves meeting with a new doctor form Hopkins tomorrow to try to get a drug that “reduces tumor burden” in the body. Interestingly enough, this drug was just approved by the FDA yesterday.

Please keep us in your thoughts and prayers. As we navigate these next few days and weeks, we pray for wisdom for Jon’s doctors as they try to decide what’s best for him right now. Please pray also that this new drug would be available to Jon quickly and that it is effective for him. Please also pray for physical strength and comfort for Jon. These appointments can be exhausting.

Don’t forget Anne! Most of you know by now that I am going to be a grandmom again and we are all looking forward to celebrating a new Bruce baby in March! Anne has been feeling pretty good considering all that is going on right now. She is healthy and is a little tired but all seems well with her and the baby. She continues to take good care of Jon while working as much as possible. That’s a lot for a new mommy to be!

So many of you have sent cards and letters, made delicious foods and brought treats for Jon to help him gain weight. He has a new comfortable chair and game to keep him entertained. Thank you all! Right now what he needs most is relief from pain , so he can sleep and eat.

Thank you all so much for supporting our family. Your prayers, cards, letters, kind words and encouragements mean so much to us.

Love,

Susan, Sue, Susie, MOM J

These past few weeks

I know it has been a while since my last post. I will try to post a little more often to keep everyone updated. I want to thank everyone for the cards, postcards (Karen Decker), flowers, and balloons. They really make Jon smile when he gets them! Thank you everyone for caring so much :)

Having Jon home is wonderful! I love being able to come home from work and have him waiting for me. He is doing okay, still very low energy and not much of an appetite. He has been trying to eat as much as possible and make sure whatever he eats is as fatty as possible. It is very convenient to have so many fast food places close to home. 

Everyday is different.  He has been having bad days, good days, and even a few great days. He went for almost a whole week without a fever, but then last Monday it came back which took a little wind out of his sails. He has been able to get out of the house a little this week which is good for his spirits. When Mom Mom Bruce asked what dinner she could make him, he requested turkey, gravy, stuffing, and the rest of the stuff that comes with Thanksgiving. He also said, "How about we come to your house to eat it!" She was so excited to make this for him, and we scheduled our dinner date for Tuesday. When I got home from work Jon was very excited to got to dinner. When we arrived, he was surprised by how many people were there and also very happy to see everyone. Everyone was happy to see him out and extremely happy that he requested this great dinner. We all sat down and fixed our plates. Even though Jon's plate was totally full, he finished almost all of it! It was great to see him happy about food. Of course, she sent us home with leftovers and Jon ate them for the next 2 evenings! 

The next 2 days were okay. He wasn't feeling great but did make it out to his Mom's house on Thursday and enjoyed being out of the house. On Thursday evening, Ben came over to visit and watch the first Raven's preseason game. Jon wasn't very happy about how the Raven's were performing, but he kept telling himself that is it was just the preseason.

Friday during the day, he had two of his usual visitors: his Mom and Jen. His mom went to NIH to pick up sleeping pills to help him rest better and dropped them off around lunch time. Then in the afternoon, Jen stopped by with a Butterfinger Blizzard from Dairy Queen. He seemed very happy by this frozen treat because, when I called him after I got off work to see how he was doing, one of the first things he told me was that Jen brought him a Blizzard. 

Once I got home from work Friday, we had another visitor: my best friend Alex who came up from the beach to spend the weekend with us. We went to Five Guys for dinner and picked up some KFC mashed potatoes with gravy and macaroni and cheese for Jon. Then we watched the Redskins first preseason game (I am a Redskins fan). I was the opposite of Jon; I was EXTREMELY please with how the Redskins looked! We can't wait for the real games to start!

On Saturday, we had another wedding event to attend.  Jon's grandparents (Richard's parents) were having an anniversary celebration to celebrate 60 years!! Jon was feeling okay and stayed for about 2 hours. Then he started to not feel good. We made it home, and he rested on the couch for the rest of the evening. 

And now we are at Sunday, and my step dad Donnie is installing a ceiling fan that will make Jon more comfortable when he is able to sleep in our bed again. 

I will do my best to have another post in the next day or so.

Weekend

On Friday evening, Jon took a shower and changed his bandages. This took a lot of his energy, but he seemed to feel better. We watched TV and relaxed on the couch for the rest of the evening.

We had a relaxing Saturday. We watched TV and movies all day with our parents stopping by to drop things off and make sure were doing okay. Jon is doing alright, but he is sill in a lot pain. He has been up walking a little around the first floor of our townhouse but not as much as he was in the hospital. 

Sunday was much like Saturday. We had a few visitors and watched TV.  It was finally cool enough for Jon to take a longer walk outside! We walked around our building and around another! It was really nice to see him walking more, and he was happy to be out of the house. Once we got back to the house we watched "Little Miss Sunshine" on TV. 

Thursday

Good evening,

Jon had an appointment at NIH today. The chest X-ray showed that his lungs have improved since last week. Jon's doctor's want him to do everything possible to gain weight! At this point he's lost almost 20 pounds so calories are important. He needs to force protein and fats. For those of us that want to lose weight, this is hard to imagine but Jon's doctor wants him as strong as possible before his treatments begin. We were brainstorming on the way home today asking Jon what foods appealed to him and he mentioned his Granny's pumpkin cake and macaroni salad among other things. :) If you have any ideas about how to temp his taste buds I'm all ears.

The necessary cells are growing and we'll know more later, but we are currently looking at beginning treatments in about 4 weeks.

Jon and Anne have been receiving lots of cards each day! Thank you'll so much. Jon sits and reads them each afternoon and finds comfort and encouragement that so many are thinking about, and praying for him. We are so grateful for all of your support!

We are looking forward to being together as a family this weekend to celebrate Jen's marriage to Dave. God is good!

Love,

Susan,Susie,Sue,Mom

Pictures

I have added a few pictures to some of the older posts if you would like to go back and check them out :)

Thursday

I woke up Thursday morning to a text message from Jon asking for sunglasses, the ones that will go over his glasses! Then about 10 minutes later another text asking for pillows. He seemed very anxious to come home :)

I got myself ready and headed out the door, 3 pillows in hand and an empty bag to bring home all of his belongings. Headed to CVS to get his cool shades then I was off to bring him home! Every time I have driven down there traffic hasn't been terrible. Of course the day he gets to come home there is an accident on 495. I finally made it to NIH, and to his room. His nurses were in his room explaining his medication to him, and giving him all the info we needed to get him his meds from the pharmacy so we could be on our way. I headed to the pharmacy to retrieve everything he needed (5 different types of medication). I finally returned to his room about a half hour later to a not so happy Jon Bruce. He wasn't feeling very well, the nurses seemed to think it was all the medication mixed with not eating much. he decided to take it easy for a little while before we tried to tackle the ride home. Around 1:00 he started moving and said he was going to the bathroom then he needed me to put his shoes on! I continued to gather all his things and help him with whatever he needed. He sat down and was ready to put his "chucks" on, I put them on and he was ready to start walking towards the door. I wheeled him down the hall as all the nurses were yelling good bye :)

We made to the car and got Jon all settled in with the pillows that he requested. He leaned on one, as well as held on on his stomach to help with the bumps. I never realized how many large bumps you hit from NIH to Eldersburg! He did great, stayed awake looked out the window in his stylish new glasses, haha! He was pretty cute in them :) 

We pulled up to the house and he practically ran to the door! He went straight to the couch and tried to get as comfortable as he could. I handed him the remote then continued to unload the car. I brought everything in and was beginning to unpack everything and Jon looked at me and asked me if I gave Fisher (our cat) away! Oops! I forgot to let him out! I climbed everest and let him out. He came running down the stairs and ran right past Jon to go to the pantry where his treats were ;) 

Since it was time for another pain med I wanted to get him to eat first, I asked him what he wanted and he said Arby's! He ate more than half of a medium beef and cheddar sandwich. After he ate that he watched TV and rested. 

It was almost dinner time so I asked him if he was hungry and he said a little...again I asked what he was thinking sounded good. He responded with ice cream! Then it went to milkshakes...and finally he wanted a root beer float. After "dinner" he decided he was going to attempt "everest" he went all the way up and all the way down. He said it felt weird because he hadn't done steps, but it didn't seem to hurt him. He made his way back downstairs and we caught up on our shows that we had recorded on out DVR. 

Jon slept on the couch because he was afraid our bed would be too hard, he said he slept ok, but woke up a lot. Hopefully everyday will get a little easier.

Wed 7/27

Jon is almost ready to come home! All of his tubes and I.V.'s have been removed and he is transitioning from I.V., epidural pain medicine to oral pain medicine. I guess we didn't realize how much the epidural was doing!

He's very sore but still determined to walk and move (which makes his doctors very happy) and is looking forward to going home.

We still covet your prayers as he rests and recovers. We have seen God's mercies in so many ways, from caring and compassionate nurses to smiling parking garage attendants who give us encouragement each morning! Your cards, emails, phone calls and texts encourage and touch our hearts. Thank you!

Prayers requests:

Jon's pain will be manageable when he comes home

Strength and encouragement for Anne

Good appetite and freedom from any colds or viruses

Peace for Jon so he can fully recover his strength