Help Jon and Tiffany!

Long awaited

2010-10-22T01:14:00.000-06:00

I know I said I would write every month, but I decided I don't want to. I will keep trying because I know so many are still thinking for us and want to know how we are coping, so this is your you.

Wednesday marked 7 months since Jon's passing. I can't really believe it has been that long without him here. I don't even know where I have been. I guess I just starting blocking out large portions of my life, which is really sad because I don't want to forget memories or new moments with the kids, but I guess it is a strategy my brain is doing to keep itself safe.

I feel like I have really lost myself. I don't know how to be alone without Jon. I don't know what I like anymore. I seem to be doubting myself more, which I have heard is normal, but still hard to except. When you are married you always use the words "we" and "us", but now I have to use the works "I" and "me". How do you switch? If someone knows please let me know because it sucks!

I have been making friends with other widows which I like very much. No one quite understands it when I tell them and they seem a little weirded out by it, but it's helping. I am the youngest usually, but we can relate so well and I don't feel alone in my struggles. I sometimes think wow I must be going crazy, but then I talk to another widow friend and find out she went through the same thing. Either we are both crazy or it must be normal, right ? Its very validating to have someone feel the same way and be able to bounce ideas off one another.

Max started school at the near by elementary. He is loving kindergarten. He is so smart and learns things so quickly, just like his daddy. I get to volunteer on Mondays for an hour. What a delight for me. I am the luckiest person to be able to drop off that little boy and then pick him up and have him run to me with excitement.   I am so blessed to have him.   He is such a good big brother. Kenadee just loves him and calls him "honey" now, and he gets so mad. I love it. It is so cute when they start talking like you and resembling a mom. Max has been to a friends house to play twice since school began which is huge for him. I had to completely talk him into it and then drag him up to the front door, but hopefully now he knows its not so scary.   Baby steps right...

Kenadee is just wonderful. She is such a little sweetheart with a mind of her own. She wears Maxwell's backpack all over the house and says she is going to school. She got her first hair cut from the little neighbor girl, and so we cut her hair into a little bob to help it. Very cute I think.

They are both growing up to fast. We are excited for Halloween, but not the cold weather, except for skiing. :) Kena wants to be a princess of course. (Cinderella because of the blonde hair) Very cute and Max told me he wants to be a "dead zombie" or "half wolf half dead".. (I am not even sure exactly what that is) Sounds a little scary to me and I have no idea where to get that outfit. I am still trying to tell him super hero is the way to go. But, what do mom's know?

Well that is about all to report. We are coping and sometimes living, so that is okay for now. I love going to the temple and feeling the wonderful Spirit. I loved reading the ensign this month about temples.
President Thomas S. Monson wrote. " How far is heaven? I testify that in the holy temples it is not far at all - for it is in these sacred places that heaven and earth meet and our Heavenly Father gives His children His greatest blessings".
Wow!! I just had to share. That meant so much to hear. Why is it that the ensign always has something for everyone in it? Its the Spirit of course. It is such a wonderful magazine and so inspiring.   We love you all and pray that we can all be thankful and have gratitude in life's little things.

2010-07-17T23:52:00.001-06:00

Wow time is just flying by for us. Tuesday will mark 4 months since we were seperated from our sweet daddy and best friend. I can't believe its been this long. We are trying to stay busy and have been having a pretty good summer so far. We went to the swimming pool for the first time on Friday. It was super fun, but I felt worried and paranoid the whole time with staying in the the sun for 2 hours straight. Max is used to letting me put sunscreen on him every 15 minutes now. I use SPF 90, but still I feel like it needs to be applied always. I think about Melanoma way to much. Everyone out their please do not tan or not use sunscreen. You will die and make me very angry!!!
On a brighter note. The wonderful Elder's Quorum from our ward is helping out with finishing our basement. We will have a family room down there with two extra rooms. We need the space so badly and so it will be great when its done. It will probably be a slow project, but done right. I feel so blessed to live where we do and have the support from the ward. What can I say. They are wonderful and truly a blessing for my family.
I got a new calling at church. I am the new secretary in the RS. I am loving every minute of it even though it keeps me busy and on my toes. I am so glad I get to stay in RS. It is my favorite time during the church block.
Max and I just ended T ball last Saturday and he informs me he liked it but is so glad it is over because he needs a break. You know life is so busy when you are 5. He is still seeing a therapist and is actually doing well with it. He seems like a pretty well rounded kid. He is having some anger issues and just lately starting having some bad dreams that we are working on.   He just learned the last two weeks how to ride a two wheeler bike. He can't stop riding now. All he wanted to do is ride his little bike 24/7. He is so excited and I know Jon is so amazed by him and his little strength he has. Jon is probably clapping his hands right beside me and cheering him on.
Kenadee is just so happy. She has started none stop talking and thinks she gets everything Max does. She has a little lisp and sometimes I can't understand a word. I have to tell her to show me and she does. :) Everyone caters to her because she is so cute and tiny.   Her hair is so blonde and cute. My sister cut her bangs because her hair was always in her eyes and now it makes her cheeks even rounder. She is a sweet baby. I am in no hurry for her to grow up.
Last Saturday we were able to go up to the cemetary and see Jon. I only cried for the first 10 minutes or so, which is really good because before it was the whole time.   Now I can sort of stop and play with the kids and actually laugh a little. Max always wants to write secret notes to Jon and has a little secret hiding place he has been storing them so they can make it to heaven to his daddy. We saw little rabbits up there last time and the kids chased them up the hill.   Maxwell was saying "Holy Cow" mom look at the bunnies and Kena started saying "Oh cow mom, Oh cow" because she couldn't say holy. It was a laughing moment.
I am so grateful for everyone's thoughts and prayers on our behalf. I haven't really felt alone and have been able to feel Jon's spirit so strong lately and of course The Spirit as been my constant companion. I couldn't do this alone and I feel like my prayers have been answered in a way. I am getting more comfortable with being alone in the house. I am not so scared anymore. I am being strong for myself and the kids. I made up my mind that I wasn't going to be scared and it was weird but then I said it to myself it really worked. Thanks for all the support and encouragement. We love all of you and hope your summer is filled with special moments with your families. Please take care and keep in touch. If I don't call you back, please just keep trying and give me time. I just can't pickup sometimes.

2010-05-16T23:18:00.000-06:00

I don't know exactly what I want to say on here anymore. I know everyone wants to know our family updates and how we are doing, but I have just lost all desire to do this blog anymore. I am sorry to those of you who haven't received call backs or thank you notes from me. I just can't do it all and I am now just finally realizing it myself and coming to terms with it. I am now really doing the work of two people; time is not on my side anymore. I want to post a few things and I will try to do an update once a month for those of you who want to check the blog.

Well its been 8 weeks since Jon's passing. Every Saturday marks another week that I have to live without my partner and best friend, but time just keeps moving and I can't stop it. I talk about him every day with the kids and some days the tears just keep flowing, but over all things have been going pretty steady. I have to say everything is falling into place and we have really been taken care of. Our family, our ward, our neighbors, our friends, they have all been here for us and supporting us every step of the way. I had a few things to do around the house and I had so many guys from my ward step up and volunteer to help, that it was more then enough help. Its just been an incredible journey.

Sadly, even when you don't want life to move on, it still does. I am trying to come to terms with this concept. I still have to get up everyday and feed the kids and clean the house, and I guess just live. I know people have not forgotten, but the eight weeks have really not made things any better or easier. It still is very much an open wound to me and I feel very much hurt. Jon and I talked about me having to live life without him and he told me he would be so mad if he was looking down on me and saw me so sad and staying in bed all day. He told me I had to get up and be a mom and live life and be happy. I say now "Thanks Jon easier said then done though babe".

Nights are still the worst. I can keep myself busy for the most part during the day, but at night I really feel the aloneness and the sleeping is bad. I started sleeping with little Max and of course he loves it and I actually do to. Sometimes because of the kicks in the head, I don't get the full night of sleep I need, but overall its okay. I do love it. He is my new little cuddle buddy.

Jon's headstone will be up by Memorial day and I am very happy about that. I think I found a good design for the headstone and I know I will be very happy with it. Max is playing T-ball right now and I get to be the coach for the team that we just named the Mesquito's. He is loving the baseball and is really a little natural. Kena is just as happy as always. She is just a great little girl and really easy for an almost two year old. We are going to be starting some family therapy sessions because I want to make sure the kids are as well rounded and I guess as okay as possible. I want them to have as little issues in the future as realistically as I can, so I thought a little therapy can't hurt work out some of the kinks.

Thanks so much everyone for your kindness and patience with me. I really do feel blessed in a weird sort of way. My testimony has grown so much these last few months and I feel so much stronger in faith. I at times had some big rocks to go over with my anger issues with God, but now I am leveling out the wrinkles and have come to realize even though I don't understand His will, I know there was a reason and lesson to be learned from this and I respect that. I pray for understanding every night and I think that is one of the reasons why my anger kind of disappeared. I will keep in touch, but for right now that is all I have to say. My little guy is curled up next to me sound asleep and I have to go be with him and finally put him to bed. Please take care and know I pray for all of you and hope The Spirit can be with you always.

Jon's Obituary

2010-03-25T13:38:00.002-06:00

Jonathon Harold Moroni Unander, 31, passed away peacefully at his home in Provo, Utah, March 20th, 2010.

He was born on November 18th, 1978 in Fort Collins, Colorado to Gary Unander and Jayanne Edwards Unander. Jon went to school in Riverton, graduating from Bingham High School in 1997. Jon was an Elder in The Church of Jesus Chris of Latter Day Saints and served a mission in Guayaquil, Ecuador. He was employed at the Utah State Drivers License Division as a Hearing Officer in Orem and was currently attending Utah Valley University. Jon had a passion for structural design and had the dream of being an Architect.
Jon married his true love and best friend, Tiffany Gardner on August 15, 2002 in front of family and friends. On September (), 2003 they were sealed for time and all eternity in the Timpanogos Temple. They were blessed with two very special children. He has a son, his best buddy and shadow, Maxwell, age 4, that loved to do everything with daddy and was his little helper. He shared a very special bond and many of the same unique characteristics with Max. He also has a beautiful daughter Kenadee, age 1, who is a true daddy’s girl. She loves her daddy so much and walks around saying “Hi, Daddy.”

Jon had many talents and hobbies but his greatest gift, and cherished love, was his family. Time spent with them was what he lived for. He was a loving husband and a wonderful father. He was always so fun and slow to anger. He loved life and lived it to the fullest extent possible. He always had an optimistic attitude and kept that until the day he passed. He loved playing soccer, drawing and playing board games with his son, chasing, holding and snuggling with his daughter, and just being around the wonderful extended family that he loved so much. Jon was a true family man and will be missed by all who knew him.
Jon is survived by his wife and children, parents, parents-in-law, a sister, grand parents and many other wonderful extended family members who love him very dearly.
A viewing will be held at Berg Mortuary in Orem on Thursday, March 25th, from 6-8 pm. Funeral services will be at the Bonneville 12th ward in Provo (1289 E. 300 S.) on Friday, March 26th at 11 am. Jon will be layed to rest at the East Lawn Cemetery. In lieu of flowers, donations will be accepted by the family at any Wells Fargo bank in the name of Jonathon Unander.

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The original obituary that was in the paper can be viewed here:
http://ads.heraldextra.com/articles/2010/03/24/obituaries/356315.txt

Obituary for Jon

2010-03-25T09:03:00.000-06:00

I will be posting Jon's obituary in just a little while for all of you who didn't see it in the Daily Herald yesterday. I also have a bunch of pictures to post, I just need a little help with them :)
The funeral services are being held on Friday March 26, 2010 at 11 am at our chapel. (around 1200 East 300 South, Provo). All friends and family can come to Berg Mortuary in Orem tonight from 6-8 pm. to pay their respects and condolences to our family. I have chosen to lay to rest Jon at East lawn Memorial Hills right after the funeral services. It is a beautiful place that I know my children and I can go for peace and mediation in months and years to come.

Check back in just a few hours and everything should be all updated. Thanks so much for all of the support and love my family has received. It has been one busy week, but somehow we have managed to get through all the planning and preparation work that comes along with funerals. I know from all of the prayers we have received on our behalf.

2010-03-22T00:17:00.000-06:00

This week has been the hardest and most trying time of my life. My husband, Jonathon passed away at our home on Saturday after his 6 month battle with Melanoma. We as a family are deeply saddened by this, but know Jon is in a better place with his Heavenly Father and other family members who have passed on. He is no longer in pain and back to his wonderful, happy self. He will be greatly missed by so many including of course our little children, Kena and Max.

A viewing will take place on Thursday night from 6-8pm at the Orem Berg Mortuary at 500 N. State St. The funeral will be on Friday at 11 am. at our church house located on 300 S. just a few blocks up from 9th East on the north side of the street. All friends and family are invited to attend. I would love to meet some of you that I have only been emailing. I love to meet new supportive people.

Thank you everyone for all of the support we have received from all of you these past 6 months. Our family has been so blessed, that I really can't be mad at God right now for taking my husband. All of the prayers have helped us so much these past weeks and months. It has really made everything a little more bearable for my family. Thank you again to for the donations. We greatly appreciate it and please know they will be put to good use with my family.

Continue please to pray for me and my children. We need to feel the love of Our Lord, Jesus Christ and feel His strength in our lives.

Love, Tiffany

To Everyone

2010-03-15T23:39:00.000-06:00

I have not wanted to write what I am about to say on this blog and that is why it has taken me a few days to try and adjust a little, but Friday we went to our Oncology appointment we thought to discuss our treatment options and found out far more then we wanted to at this time.

The doctor could tell Jon's cancer was still progressing because of the measurement growths that seemed to have doubled in just over a week even though we were taking the Temadar chemotherapy. We were hoping to seek additional advice on treatments, but the doctor could tell how weak Jon had gotten and sick since the last visit which was about two weeks ago. He thought Jon had a Pulmonary Embolism because his heart rate for the last week has been in the 130's-140's and his oxygen saturations in the 80%.

He said he wanted to do a CT scan in order to diagnoses the Pulmonary Embolism and the best option would be to check into the hospital and get it done faster while Jon got to just rest in bed. So we said fine and checked into the fourth floor and I went home to gather up things and get a doggie sitter for the dogs.

Well I could tell something was wrong when I came back to the hospital because Jon's parents were there and everyone had teary eyes including Jon. At that point Jon told me that our doctor had come in a little while before and the results were not good. The doctor told Jon that it was not a pulmonary embolism affecting his breathing and heart rate, it was the cancer.

The cancer had grown so much these past couple of weeks that it now completely enveloped both lungs, is pressing on his heart and all the main arteries suppling his brain and upper arms. Jon can hardly swallow at this point because of two tumors in his neck. The doctor said he was so sorry and that the cancer was to progressed to go any further with treatment even if he had any to give, which he didn't.

So We came home on Hospice and said goodbye to Huntsman and to our doctors. We are praying for understanding of why this has occurred and know it must be for a very good reason. Jon is needed on the other side very much and has to leave us, even though I just can't believe it and don't understand one bit.

I feel mad and frustrated that we didn't have more time. We have been fighting this cancer for 6 good, hard long months and still nothing has been able to stop or even slow it down. Jon thinks that Heavenly Father has answered our prayers and granted us more time together here on earth and that a miracle has taken place. He feels like that is the reason he is still alive right now and the doctors couldn't explain why he is still even breathing with so much cancer. I guess he is right, it just wasn't exactly the time I was thinking of.

Jon would like to see anyone who would like to see him. The doctor has given him maybe a few weeks left of life and so time is precious to us, but if you would like to stop bye for goodbyes all friends and family are welcome to come for a short visit. I would like everyone to call ahead of time, just to make sure Jon is feeling up to it. He is very tired and weak. If you don't have our phone number please just email me or call my sister Kristen at 801-222-9506.

Thank you everyone for your loving support you have shown us through our battle. We please ask to continue your prayers on our behalf and ask The Spirit to be with us and to comfort us. I am trying to take one hour at a time and pray for strength and support from Our Father in Heaven. We love you all and ask for the spirit to be with you all as well.

Truly Your Tiffany

Coming Home

2010-03-01T14:08:00.000-07:00

Hi we get to come home today. Jon is still receiving radiation to his lumbar spine and will continue to do so as an out-patient for the next couple of days. They have also put him on a strong steroid, so hopefully no more damage will occur to his spinal cord. The IV pain medications have really helped to get this pain under control. We are so happy to go home. Neither of us has been able to get any sleep here because the nurses never leave us alone. I guess I can't blame them for doing their job.
Our Oncologist, Dr. Grossmann is unsure right now if this whole ordeal is an indicator as to the non-effectiveness of the chemotherapy drug, Temodar we were taking last week or not. There are a couple different areas on Jon's body that are superficial nodular cancer tumors that we can measure and feel, so we can determine their size. The plan is for me to check the measurements of these areas in one week and if there is any differences in size then I am to let Dr. Grossmann know. If they are growing then we will try a different treatment asap he said. I hope that is true however and there will be no more of a waiting period because we are really getting down to the wire.
Thanks to all of those who fasted with us and are praying for us on Jon's behalf. We are feeling good today. It's always good for me to have a plan and then a back up plan for my mind to be able to get some peace. We are staying positive and are still praying for a miracle and understanding of this trial. Thanks for all of the support everyone has given to us. Its wonderful to know how much we are cared for by so many.

Hospital stay

2010-02-27T22:17:00.000-07:00

Hi everyone. We had some scary news on Friday that ended us in the hospital, but luckily it seems like we might have caught it in time. On Thursday Jon had an MRI done of his left leg because of an increase in his pain lasting over two weeks that has been hard to control and because he has decreased feeling and sensation as well. He has been using a walker now at home and has had two falls in the last week :(

We got the call on Friday what exactly was causing it. The MRI showed that Jon's lumbar region of his spine has cancer and it was starting to press on his spinal cord. The Doctor was really concerned that Jon could if not treated ASAP loss all sensation to his leg along with the bowel and bladder control. So the first step was getting him checked into the hospital and getting treatment done as soon as possible. After discussing all of our options we and the Doctors decided on some radiation to his spinal cord and a strong steroid that will help with any inflammation in that area. We got started on the radiation today (Sat) and will have a total of 5 strong radiation treatments. The Doctors think that of course the radiation should help the pain and also that over time will shrink the tumors, but unfortunately the damage already done to his spinal cord is non-reversible.

He thankfully is more stable and started on treatment so, the Radiologists think there is nothing that should be holding us in the hospital any longer then tomorrow, but ultimately its up to our Oncologist. We want to go home and hope it will be tomorrow, but right now its not decided.

We are trying to stay positive and keep praying for a miracle. My in-laws have been researching some very promising clinical trials that are going on around the United States right now that I am going to ask our doctor about the next chance I get and continue to research on my own. I feel strongly that we are going to have to take more of an active role in Jon's treatment and have a back up plan just in case. We are not giving up the fight easily!! and we are not just going to do what the doctor says, we are going to do what's best and benefits us. We are going to pray and do what we feel we have to at this point.

My family and I have decided to hold a fast for Jon tomorrow. I don't feel like waiting until next Sunday because we need the blessings now. I know it is late notice, but if you would like to participate please do. Our little family is suffering and we need some positive thoughts and feelings in our spirits to keep us strong. Keep praying and stay positive for us. May the spirit be with you all and thanks for the support and love we have received. We couldn't ask for better people to be associated with then all of you.

Finally time for an update!!

2010-02-19T23:41:00.002-07:00

Sorry it has been so many weeks since my last post. We have been so busy with seeing so many different specialist's at Huntsman and with life in general that no time has been made for the blog.

We finally have been able to start the treatment at Huntsman. If you know us personally then you know that we have been having a lot of trouble with our insurance company approving treatments or even some prescriptions and chemo drugs. It has set treatment back and really wasted precious time that we don't have. Right now though luckily they have approved the next treatment thanks to our Oncologist talking on the phone for many hours and writing letters to the top people at the company.

We talked with a couple of Neuro-surgeons and the best option for Jon's small brain tumor was to do a newer procedure called Stero-tactic radiation surgery. It was a one time treatment that was as strong as three combined radiation rays. They said it had a very good chance of working with Jon because the tumor was about the size of a pea. They do not guarantee that additional tumors won't show up, but they said we can always do this again to another area if they do show up in the future. Hopefully we don't have to worry about that right now:> We start the chemotherapy tomorrow and will keep taking it for 5 days and then have two weeks off and then back on for 5 days. At the end of that time we will do all the mapping and scans again and hopefully the cancer will be stable at that time. We will keep going with this same treatment if it shows that it is working and until we can get onto a B raff clinical trial which is our best option.
The word around the Melanoma clinic is that Huntsman is finally getting this B-raff clinical trial and it should be available starting in about 2 1/2 months and that would be just in time for us, if we play our cards right. Right now with everything going on it seems too good to be true, but it would be just perfect. I talked with our doctor's nurse today about the B-raff treatment and she told me that they have another male patient that is about 6 years older then Jon and who was in as much pain as Jon and that after starting the B-raff clinical trial for 6 days he had no more pain because the cancer tumors were shrinking so rapidly. Wouldn't that be like a complete miracle if that happened to us. I would be without words.

So right now we just keep praying and keep hoping for a miracle to take place. We know it would be possible if Heavenly Father intended it and we sure hope He does. We are trying to hang tight and be patient for this treatment to start working. The doctor said to try and not measure any of Jon's tumors until 4 weeks have gone by, but its hard not to touch them and assess them always. We have been praying for understanding of this trial that has come upon our family and for time together. Please remember us and keep us in your prayers. We have such a long road ahead that it is hard to see the light at the end of the tunnel. It seems like it is a long way off for us. Take care and may we all have the Spirit to be with us.

Results on Jon's MRI and CT scans

2010-02-07T22:38:00.000-07:00

Jon had to do another round of scans to determine the cancer's size and locations yet again before we start a new treatment. Very bitter sweet. You want to start the new treatments, but on the other hand we have started not wanting all the details anymore about how bad the cancer is getting and how sick, sick, sick Jon is. That seems like the only thing we are getting right now is "oh look the cancer has doubled in size in this location" and "oh look the cancer is now here and in multiple other areas". Can you tell I am sick to death of hearing this from our Doctor? I don't know how much more bad news I can honestly take people.

Anyways, I will get along with all the results... First the good. Jon's pelvic bone and surrounding tissues that were affected with the tumor have actually shrink in size by a small bit. The Doctor thinks this is because of the radiation that was done in Dec. (that was good to hear because the damage their was very significant) Now the bad... The CT scan showed growth in the lungs and liver and new growth and spots now in the pancreas and spleen. Some new growth was expected because Jon has not received any treatments since the last scan. I should be happy that the cancer has only grown a small amount in some locations and not taken off the the races like it has done and Melanoma tends to do this, but again its bitter sweet.
The MRI scans this time did show growth measuring 7mm. in Jon's occipital lobe located at the back of Jon's brain. The Doctor thinks that because its so small and only in one location that there is a good chance to catch it, so we try and stay hopeful. This means now though, we will not be doing any other clinical trials until we can get this brain cancer treated and stable for 3 months.

The new plan because of the cancer showing up in the brain is to do a radial radiation treatment to the location. Jon will then be starting a pill form of chemotherapy. The chemotherapy is called Temodar. It is one of the few chemotherapy drugs that crosses the blood-brain barrier, meaning that it will help the cancer in the brain and will help the body. The chemotherapy has an okay reputation with side effects and keeping the cancer stable. Not so good of a reputation with actually shrinking tumors, but keeping the cancer stable at this point would be okay with us. :> We will be staying on this drug if it works for 3 months. We will get new scans every 8 weeks and just go from there. Our next appointment with our Doctor is scheduled for Wednesday and Radiation and Chemo. are both suppose to be started this week.

Thank you everyone for keeping us in your prayers. We both have been having a hard time with all the bad news coming one after another, but are now feeling the spirit and still having hope. I have a strong testimony in the power of prayer and I know that the spirit will comfort us and be with us during this hard trial in our lives. Someone left us a sweet Valentine message on our door and lawn this past week and I wanted to thank whom ever did it. It really made us feel special and feel really loved. So Thank you so much. Everyone take care and have a safe week. May the spirit of God be upon you.

Got the news today. Not a good thing..

2010-02-01T21:32:00.002-07:00

Dr. Hong from NIH called and informed us today that Jon's TIL harvest was unsuccessful. They were not able to get any TIL from his cancer and so sadly we will not be able to continue with that treatment. We really felt hopeful about the treatment and it did seem almost too good to be true, but now we won't ever be able to find out. We are sad and are both having a hard time remaining positive with the future. Our future is very much unknown right now and right now we just need something to give us time. She gave us the option of trying another treatment at NIH that uses lab created TIL and full body radiation, but she was not clear on any of the data because it was in an early clinical trial and just kept saying how dangerous it was and it was the strongest treatment they had and she had no idea even if it worked or not. We of course were very scared after getting off the phone with her and didn't feel good about the treatment at all.

We wanted to talk this treatment over with our doctor, Dr. Grossman because we very much value his opinion and he usually keeps up-to-date on all new data for Melanoma treatment. After talking this option over this afternoon with him, we decided it was not for us at this time. Dr. Grossman said that he thinks we still have options here and that Jon's cancer isn't bad enough yet to try that clinical trial. He thought that particular treatment was a joke and way to dangerous and showed almost no positive results.

So now it feels like we start at step one again.....

Dr. Grossman gave us an option of maybe joining a B-raff clinical trial if we can get in. He said that there might be a B-raff mutation phase 2 clinical trial option for us in L.A. at the UCLA. Dr. Grossman has a collegue down there that is doing this study and thinks he might be able to get us in this week. The B-raff treatment does show promise is shrinking the cancer, but really only for a short period of time. He said it would just be buying us time and that is all we have. We need to again do all of the scans and another MRI of Jon's brain and that will all take place this Wednesday up at Huntsman's. Hopefully the new treatment outline will be shown to us Wednesday.

If we are not able to get into a B-raff clinical trial this week, then we will be forced to start one of the terrible chemotherapy's this week instead. (the ones I talked about on a previous post) We have to do something now and can't delay anymore.
Please keep praying for us. We need strength right now and we need to feel comfort so badly. I am sorry about the bad news and hope and keep praying myself that something will finally touch this cancer and stop it. Even if it was short lived I would take it right now instead of nothing. I love my little family so much and feel so desperate to keep it. Man, its been one hard day :< I think I will go to sleep now and hopefully it will be a better day tomorrow. Take care everyone and may the spirit be with you. Love, Tiff

Update After Surgery

2010-01-20T19:22:00.000-07:00

Hi everyone. I just wanted to post that everything went very well with Jon's surgery on Tuesday morning and today his pain is very well controlled. The surgery was alot more complicated then the Drs. had originally thought. The cancer on Jon's shoulder that was removered for the TIL harvest was actually under a major muscle and in between another, so in order for the Drs. to get to the tumor they had to resection and take a large amount of two muscle groups on his shoulder out. Because of this complication they wanted Jon to stay a few more nights in the hospital to get the pain and everything else under control before getting on the airplane to go home. If everything is on schedule we should be able to go home on Friday night which we are very much hoping because this has been alot longer then we had hoped and we are both so home sick for our kids. Thank you everyone for your support you have shown to us. We are so happy and lucky to have such a strong support system that has backed us up every step of the way. We appreciate everyone remembering us in their prayers.
I just found out a couple nights ago that My sister's father-in-law Ken Marshall passed away after his long battle with his cancer. Jon and I are so sad for his family. I know it was expected and Ken was ready to return to his heavenly father, but at the same time it's hard for us here on earth who will greatly miss him. My prayers are with you Maxine. Ken was a wonderful person who was always kind and very friendly to Jon and I. He will be missed.
Take care and may everyone have the spirit to be with them.

Maryland.

2010-01-16T18:34:00.000-07:00

Hi everyone we are still in Maryland and will be until Wednesday night of next week. Everything has been going very well. I know that some people know what is going on and what happened at the hospital and some don't so, I will just quickly fill everyone in.
We saw the Doctors and Nurses at NIH on Thursday and nothing could have gone better. They approved Jon on Friday for the Tumor Infiltrating Lymphocytes (TIL) harvesting and treatment and he became their patient :>
We are so happy and feel so so blessed. So many people in our same situation were turned down, so its kind of a happy sad thing. We are happy it was us, but sad that everyone can't get this new treatment. They are starting quickly on his cell harvesting and have scheduled for one of the cancer tumors on his shoulder to be removed on Tuesday morning. Sadly, he will have to be in the hospital starting Monday night and going through Wednesday. Both of us are not too happy about this, but what can you do. It's for safety issues and to make sure the cancer and pain are both controlled.

The Doctors have explained the TIL treatment to us as followed which is a little different then we were expecting but still okay because we are getting the treatment right?
The tumor and cells are harvested in a lab and clinically enhanced into TIL cells which takes anywhere between 4-6 weeks. After they are grown out into the millions they are then put back into Jon's body, but first they will be giving Jon inpatient chemotherapy drugs for one week solid to clear out his own immune system and pretty much completely put him at zero. After that one week in the hospital they will start infusing the TIL cells into his body followed then by some Interleukin II treatment. After another week of this treatment, he will then have to stay in the hospital an addition two weeks in order for the immune system to calm down a little and get some strength up and get over all the side effects.
The Doctors have said that this treatment is a one time deal and that its strong enough and made to be once in a life time and hopefully put you in full remission for a while. Because this is not FDA approved and still in phase 2 of the clinical trial process this treatment is not certain to work and the numbers are not clear enough if it is a long term survival treatment, but.. BIG BUT, this treatment has been out for a few years with testing and has shown to have great results with Melanoma cancer and so we are happy to receive it and hope for the best.

One thing we are very scared about is not receiving any treatment on the cancer for another month. We don't want the cancer getting out of controll and taking over Jon's body before this treatment is given, but the doctors have tried to reassure us that the TIL cell treatment will work and take care of everything and that it's not a big deal to wait the 4-6 weeks but I see Jon getting weaker and think we need something now. Unfortuately because of the clinical trials you cannot have any treatments for 6 weeks prior to this one. They call it a "Wash out period". So please keep praying for us to get this under control and strength to go on. We will be very happy to be coming home and be with our children again. Thanks for everyone's support and prayers.

Very excited to announce.....

2010-01-04T17:07:00.001-07:00

I am very happy and pleased to announce that I talked with Dr. Grossman earlier this afternoon and found out that Jon's MRI scan of his brain came back completely normal and .... We got excepted at the National Institute of Health in Maryland. We have an appointment to start the TIL cell harvesting on January 14th.
We cannot begin to tell everyone how happy and blessed we feel right now. I have a strong testimony of prayers and fasting and I know that it really helped us with these results we got today. Thank you so much for everyone's prayers and all of the fasting that took place yesterday on our behalf. We made it happen.
Now all we have to do is find a flight, get a babysitter for the kids and dogs and puppies, find a hotel, Rent a car, ect... Well everything will just fall into place right? We have a week, so no stress. All I am thinking about is the great medical treatments that are offered there and what a blessing it is to be one of the few that gets to receive it. Thank you. Keep the prayers coming and until next time, everyone stay safe and may the spirit be with you.

2009-12-31T21:35:00.001-07:00

Unfortunately we didn't get any news today about going to NIH in Maryland. The lady who is our contact out there was out of the office today. Can you believe that? It wasn't even a holiday and she had to take a day off.. Who does this?? So we will get the final answer on Monday.

Many of the people who pray for us like to be very specific with their prayers, so I got to thinking that I would let everyone know what Jon and I are praying for and what we want to happen, so if you wanted then you could be praying for the same thing. We are praying for a clear test result from the brain MRI. We don't want cancer here people. For obvious reasons. :> and also we are praying that the National Institute of Health will give the okay for Jon to start the TIL harvesting out there and one of their clinical trials for the B raff mutation. THis is our hope and prayers. We think this is the place we need to be right now and that this will give us a future.

Good news and Bad news are always suppose to go together, right? Well we have received our bad news, and now it is time for the good news. Thats not too much to ask and I think that our Heavenly Father will try and give that much to us "> Everyone take care and don't forget the fast on Sunday.

Test results and Our new plan

2009-12-30T22:44:00.001-07:00

I have so many things to say in this post that I hardly know where to begin. First I will start with how our little patient Jon is doing and then the test results and then what the new plan is.

Jon is still having a lot of fatigue. A shower in the morning wears him out and after he has to take a little rest. He has experienced a lot of nausea, vomiting and upset stomach, which makes it very hard to keep down food and calories. He is trying a lot harder however to make himself eat because of the significant weight lose he has experienced (28 lbs. total). The good news though is that he is in pretty good spirits and seems to want to do a little more now, like getting out of the house for the movies, little shopping trips or just playing legos with Max. Some days are worse and harder then others, so we just live one day at a time and usually nothing is planned in advance anymore. Which I like the planning, so its been another adjustment for me.

We got the results from Jon's CT scan this afternoon and they were not very encouraging. The cancer in Jon's pelvic bone and liver have both nearly doubled in size from the last scan that was done 7 weeks ago. Also, there is 5-6 new spots of cancer in his lungs which is really crappy news for us. That said this means that Interleukin II did nothing to even stop the cancer from spreading at all and so we will not be doing it again up at the Huntsman Center. Also, because Melanoma cancer has a tendency to go for soft tissues, we worry again about his brain, so we will be doing another MRI of his brain on Saturday.

We have mentioned before the Tumor Infiltrating Lymphocytes (TIL cells) on an early post as a possible treatment option for Jon and now that is one of the major things our Doctor is looking into. Its a treatment that is not yet FDA approved and so they call it a clinical trial, but has shown very good results. What they do is harvest the TIL cells from your cancer in your body and then grow it in a lab for 7 weeks and then they put them back into your body while you are in the hospital for three weeks at time and they infiltrate the cancerous tumors and kill them. We were trying to get into MD Anderson in Houston, TX. to start this treatment, but they are so over booked that the first available opening is a month from now, which we don't have that much time to let the cancer grow, so our Doctor thinks that the National Institute of Health in Maryland is a better option for us at this point. Also, MD Anderson has a co-pay to start treatment down there of $40,000 and Maryland is almost entirely covered by the clinical trial part, except for the traveling and hotel costs.(so we have heard) Obviously, Maryland although further away is a better fit for us. We should know if the TIL cell harvesting is a possibly by tomorrow.

Some of you might now ask what do we do while the TIL cells are growing out for those 7 weeks? We don't have time to waste on this cancer, so in the meantime while these TIL cells grow, we have a few different options to consider. Our doctor gave us three choices.
1. We can start on a chemotherapy called CVD Interferon. This is three chemo-therapies in one, so everything is three times as bad. Its given up at Huntsman in their lab 5 days a week for 21 days, then one week off and then start again. Its very toxic to the body and sometimes hard to recover from. It would make Jon loss his hair, all energy levels and also make all his labs very low. The Doctor said it also might make the labs drop so low that the TIL cells wouldn't be an option right away. On the upside it has a response rate of around 60% which is very high. This response however can be short lived.
2. Another chemotherapy called Carbo/Taxol. This is two chemo-therapies in one, and so not so bad as option one, but still kind of miserable. Its only given one day a week. All of the same side effects that you would expect with chemo. Its response rate is only around 30%, but it might just buy us enough time to get the TIL cells harvested and ready to go.
3. At the beginning of Jon's treatments some cancerous lymphatic tissues were extracted from Jon's shoulder and sent to the lab. We have just received word that after examining those cells is was discovered that Jon has a B raff (+) mutation in his melanoma. This is good because 60% of melanoma patients have this mutation and so its more common and there is more clinical trials out there for it. Our doctor has the hope that maybe we can get into one of the clinical trials that are strictly for the B raff patients. They are being offered in many locations including Colorado, Texas and California. This would be kind of a dream come true if we could get into one of these trials, but the waiting list is extremely long. Some places have 12 spots and like 30 patients wanting to get in. It is a benefit for us that Jon is young and in good health other then this stupid cancer, but still it might be too hard to get in.

If we get the go for Maryland for the TIL cell harvesting we will be on a fight next week. Jon would then have to heal up for two weeks from the surgery, but then we have to get started on some type of treatment ASAP. Our doctor has said that Melanoma cancer is a very hard one to fight because once you have it, it takes off like a rocket and can spread so quickly, which we have already learned.

This is our wish list and hopefully everything will just fall into place. I think I prepared myself better for these test results because although I didn't like them, I actually felt okay with them and feel like everything is going to be okay. One of these treatments has to work right?? That is what I keep telling myself and praying for. I have a really good feeling about the TIL cell treatment and know it would be a good thing and maybe where we are suppose to be right now, so that means we better be able to go. I feel very scared with the unknown and don't like not knowing what's going to happen, but I keep praying and asking for these things to work and hopefully all of our friends and family are too on our behalf. (I know many are praying for us and we appreciate it so much. It has touched us so deeply and it is wonderful to have the spirit comforting us all the time)

I would like to do another family and friend fast for Jon on Sunday and hope everyone will join in for our family. We need the blessings so deeply right now to help us stay strong and get through these hard times ahead. I will post again tomorrow as soon as I know if we can go to Maryland or not. We will have the results of the brain MRI on Monday. I hope this wasn't way to much to read and overwhelming :> Everyone have a good New Years and stay safe. I hope 2010 brings us all great blessing and a little fun.

2009-12-19T21:58:00.000-07:00

Hi everyone.
We have been out of the hospital for a week now and so happy to be home. Jon started Radiation to his pelvic bone this week to help with the pain he has experienced. They have scheduled him to have 10 treatments, which is one a day for 10 days in a row. It seems after his second treatment that he has already experienced some pain relief in that area, which has been great. But, it has taken all of his little energy that he had completely out of him. Its like he can't get enough good sleep even though he is sleeping all the time.
Monday he will start the new chemotherapy drug we mentioned in an earlier post called Zometa. He will be getting this drug every 6 weeks to help with the bone destruction that has occurred because of the cancer.
I have mentioned before that Jon's gallbladder has been acting up some during treatments and that has continued to bother him. He always has a sick stomach and lots of nausea and vomiting. Even though he is eating now he just lost another 3 pounds. We are going to get this problem hopefully checked out on Monday also along with his chemo and radiation treatments that are scheduled. I am not sure yet what will exactly come of it.
Jon has his next pet scan and CT scan scheduled for December 28th. It has already been 6 weeks.. Time is just flying by for us. We will not get the results until December 30th but we will be sure and post something soon after. I can honestly say that I am so scared to even see results at all and keep hoping that it won't be bad news like the last one.
Thank you everyone for your support you have given us. We didn't know we were so loved by so many. We have been able to meet so many good people that it has been just amazing for us. Thank you for everyone who has donated to us also. I wish I could send everyone a personalized thank you note to say how really blessed and thankful we are, but hopefully everyone can understand that I just don't have the time, but I do care and thank Heavenly Father every night for such wonderful people in our lives. All of you have helped us so very much. You give us strength to keep going everyday instead of just laying in bed and crying.
Well, that is about everything for now. I will keep everyone up to date about this next week. Take care and have a Happy Holiday season with your family.

Another treatment session at Huntsman Cancer Institute

2009-12-08T21:43:00.000-07:00

"So far so good.. Jon received his 5th doses of IL-2 around 5 pm. tonight. He is doing extremely well and the doctors are very happy. He is scheduled for his 6th dose at 1 am, if everything stays the same.
All of his vital signs are good so far and he hasn't had to be put on any blood pressure medication. so far so good huh?? His gallbladder is starting to act up and his bilirubin level has risen a lot just since yesterday. Dr. Grossman says we can either put a drain in the gallbladder if it gets to bad or just push through it. He was very happy how Jon's gallbladder last time got better so quickly, so he thinks its worth it to just keep going with the treatment.
Jon is remaining pretty content and happy this inpatient treatment. He is just going to "push through it" he says. He is staying in good spirits and not getting to homesick. We talk to our kids everyday on the phone. :)
The new plan: After talking with our specialist Dr. Grossman today is that during Jon's home stay after this week, we will be going back up to Huntsman to do some outpatient Radiation treatments to his pelvic area to help with the pain that has been pretty much unbearable. (This is one of the reasons he cannot work because he cannot sit for long periods of time or even walk for that matter) The radiation will be everyday for like 5-6 days in a row. (counting the week of Christmas). During that radiation Jon will also be receiving some chemotherapy medication called Zometa. Zometa is primarily used in patients that have had breast cancer and have had their cancer spread to their bone, but Dr. Grossman has a good feeling that this Zometa will stop the cancer from progressing any further in Jon's bones. (Unfortunately, the IL-2 treatment has not had good results with treating cancer in the bone, so something else is needed to help with that cancer) We will start receiving this chemotherapy every 6 weeks along with the IL-2 and radiation.
Thank you for all of your thoughts and prayers. I would also like to add to all our friends and family that we really appreciate everyone that has been spreading the word about what we are going through because it has helped us make new friends and also with getting donations. We love everyone and thanks again for thinking about my family during this holiday season. Tiffany"

Updates of the past week and a half

2009-12-04T21:13:00.000-07:00

I have some updates to post and I know it's been a while since the last post so bear with me! I received lots of updates from Tiff in an email so all of the following news is what she sent to me.

"Review of the Interleukin II therapy - Jon was scheduled to have 14 doses of IL-2 while at the hospital and the doctors and nurses, usually say "the more the better" when it comes to how many doses, but your body is what tells them the "stopping point" (since it is different for everyone) and when it is too dangerous to continue. Jon's body gave out after the 7th dose. He had a major gallbladder attack so they were not able to complete anymore doses. Luckily they did not have to remove his gallbladder, they just gave us a very expensive antibiotic (5 pills at $32 a pill after insurance). Also Jon's bilirubin level was at a 7 when normally in your body its like a 0.1, so he was very jaundiced and that was another indicator of his body's stop point.

Dr. Grossman, our specialist and oncologist, said that during our second IL-2 (which is this Sunday Dec. 6th) if anything like his gallbladder attack happens again this time around that maybe removal of his gallbladder or putting some type of shunt into the gallbladder to drain off the toxins might be our option so we can continue with the treatment as much as possible.

Overview of this past week and a half at home -
Jon has been very tired still and is sleeping about 18-20 hours per day. He lost all of the excesses fluid all over his body every quickly (within 4 days) after discharge, but had a hard time losing the extra fluid in his lungs and had to go on another antibiotic to help aid his body in recovery and prevent Pneumonia. (Oh great, more money in antibiotics! Luckily the good old insurance covered a bit more.) He has not had an appetite at all and has a hard time eating (lots of nausea and vomiting). When we first went to Huntsman on Nov. 1st Jon weighted 164 lb. and now he is down to 141 lb. He really can not afford to lose anymore, and that is what the Doctors say also, not just his wife! If you know Jon at all, you will know that he is very stubborn and this has been a very hard thing to get him to eat. If it doesn't sound wonderful then he won't eat. If anyone knows of suggestions of high calorie, high fat foods I would love to receive them!

This past Monday and Tuesday have been a little bit better and he has a little more energy to play with the kids, go out a little, etc. He was able to do some Christmas shopping for the kids and kind of just have fun.

I don't want to get anyone's hopes up or anything but I just have to share this news because it has really given me hope for this treatment of IL-2. I don't want to jinx myself and think this is something great and then get bad news at the Pet scan at the end of December.....but while Jon was receiving treatment and the first 5 days out of the hospital, he had no pain in his pelvic bone and didn't have to take any pain meds which was a big thing for me because lately he has had to have pain meds non-stop to cope with the pain. So then not having to have any of them for a little while really gave me hope. Also, on Jon's left side of his back you can feel the cancerous lymph node and I swear it got a little smaller. I am really not sure if any of this is an indicator of the treatment working, but really I didn't think I would see any changes and seeing these small things has really made me have hope. :> I just hope there are no more disappointment at the Pet scans.
We are scheduled to go in this Sunday to stay at Huntsman to start the last part of the first scheduled IL-2 treatment. We will be up there for the whole week and they will try to do as many doses that his body will take.

On a side note: I talked to Jon's boss at work and we discussed a leave bank for Jon that all State employees can donate their sick leave time to. Jon will completely run out of all his annual and sick leave right before Christmas and he has to at least have 5 hours per week in order to keep his insurance. Which of course is vital to us right now! (The first 5 days at Huntsman for treatment cost $67,000 we just the bill that was sent to our insurance!) Also, Jon will be going on short term disability in January which is only 60% of his income, so if state employees will donate time to him then he can have more paid leave and more treatment, so will please everyone donate time if they have it."

That was the end of the email. Thanks to everyone who has been so helpful and caring to Jon and Tiffany and their family. And please know that your prayers, donations and anything else you can or have sent their way are very much appreciated! I am so glad that so many people are stepping up to help them, and I am so glad that they get to see how much they are loved! We love you Jon and Tiffany (and Max and Kena too of course :D )!

Day 2 of the IL-2 treatment and some more pictures

2009-11-17T16:32:00.003-07:00

Tiffany just emailed me this update: "Jon is just about to receive 5th dose and his body is tolerating the IL-2 great. The Dr. is very happy with all the results so far. He has been able to maintain normal B/P and heart rate. Getting a little puffy in the eyes and tummy :> which is completely normal and expected to gain a lot more. He seems pretty happy and alert right now, but doesn't have an appetite at all."

So, so far so good! Keep those prayers coming everyone!

Tiffany and Jon had some AMAZING family photos taken by the fabulous Clara Jerome . And they would like us to send a great big THANK YOU to her! Take a look at these. Have you ever seen a more beautiful family?

Everybody please join us in prayer...and an update from Tiffany

2009-11-16T21:06:00.002-07:00

This is an email I received from Jon's aunt Barb. I think this is a wonderful idea and am going to be emailing this to all of my family and friends and hope that you will do the same.

"Hello Family and Friends,

As many of you know, my nephew Jon Unander has been admitted to the Huntsman Cancer center today to begin his first week of treatment for his melanoma. We have fasted and offered our prayers in his behalf and for his wife and children. His name is in the temple.

Wednesday is his 31st birthday. We want to do something more for him. So we are asking that everyone and anyone who knows and loves him, or knows someone who does, will stop whatever they are doing at 7:30 p.m. (Mountain time) (That would be 6:30 pacific time and 9:30 eastern etc.)and kneel in prayer to ask that the Lord will give him strength, comfort his family and especially that the treatment will have the intended effect. Please forward this email to any of your family and friends that all can participate if they would like to. Jon’s family will greatly appreciate our efforts in asking for these blessings for Jon and Tiffany, Maxwell and Kenadee. Let’s exercise our faith together as family and friends! Thank You, Barb"

I hope everyone joins us in this! Set an alarm on your cell phone, alarm clock, watch (or ANYTHING) to remind you to pray at 7:30 MST.

Next, I have a letter from Tiffany that she sent to everyone on the Facebook page today. I thought I'd paste it here for everyone to see and read also.

"Thanks for all of those sweet messages that everyone put on the facebook page for us and thanks even more for the thoughts and prayers. We are really feeling the prayers today because we have strength and are holding tight.
Jon started the IL-2 at 9:30 am this morning and will get a strong dose every 8 hrs. until his body can no longer take it and it bottoms out. (meaning no more urine output and heart rate goes over 200 and blood pressure is lower into the 80's/40's.) So far though his heart rate has doubled and is in the 120's with blood pressure staying within normal limits and only sometimes going low. He is having hot and cold flashes and has a lot of tremors here and there. Also, the doctors said he will get sort of a sun burn look which is already forming.
Please keep us in your prayers and thanks for all the support, Its great to know we have such a great support network to lean on during this hard time. Tiffany"

Here are some picture updates from Tiff:

Bad News: November 13th Update

2009-11-13T18:20:00.000-07:00

This update was just sent to me by Cheryl one of Tiffany's sisters:
"I just talked to Tiffany and have some BAD news to relate... Jon just had several more tests done at Huntsman including a PET scan which showed that the cancer has spread to his liver, pelvic bone, hip, and femur. They are, of course, devastated by this news.

The plan is to admit Jon to Huntsman this Sunday night to start treatment with an immunotherapy drug called Interleukin-2 (IL-2). This is a substance that is normally produced by the body during an immune response. It works with the body's immune system to stop or slow the growth of cancer cells. The prognosis with this treatment is 10%. During administration he has to stay in the hospital as the drug is very toxic. It can cause flu-like symptoms that are quite severe. It is known to be much worse than chemotherapy in its side effects, but at this point it is the last resort.

He will stay for one week in the hospital while getting this drug and then will be home for 2 weeks, then will go back in for 2 weeks of treatment then home for one week, then back in for another week. At that time he will be reevaluated and have more testing done to see if the drug is working as intended. If not, another round will begin. During the first week he is home he will be going to Huntsman for daily radiation of his hip and pelvic bone to help decrease the pain. Right now he is in so much pain he has to use a cane to walk and cannot sit for very long.

The doctors are also in the process of finding out if he is a candidate for another investigational and rare therapy that is only done in Maryland and Texas. It is TIL cell(tumor infiltrating lymphocyte) harvesting and replacement. With this procedure Jon's lymphocytes would be harvested (removed) and then cultured for 7 weeks in the presence of Interleukin-2. After that time period the "activated" lymphocytes would be transfused back into his body. The goal with this treatment is that his body would then be able to fight off the cancer. He would have to go to Texas to have this done in between sessions of Interleukin therapy at Huntsman. The prognosis with this type of treatment is 25%."

I also cannot stress enough how much they need help in the way of monetary donations. He cannot work anymore and the bills are really going to start piling up. So of course they have that stress on top of everything else. Please spread the word about this need and also donate as much as you can. Thank you.

Update on brain MRI and the next step in care/November 3rd 2009

2009-11-03T10:46:00.001-07:00

The MRI done on Saturday shows NO brain involvement. This is great news! The pelvic MRI showed a quarter size spot of cancer with a larger surrounding area with potential "early" cancer cells. This may change the surgical treatment as more bone may need to be removed. The next step is to do a biopsy on the affected pelvic bone to find out what type of cancer it is. This will be done next Wednesday, Nov. 11 and the results will be given to Jon and Tiffany on Monday, Nov. 16. At that point the plan is to have the oncology team at Huntsman get together and have a discussion regarding the plan of care.

Also a 6 week follow up PET scan will be done on November 13 to make sure the cancer hasn't spread and that everything still looks the same as it did 6 weeks ago.

This next part applies to any local family and friends that would like to help out: Right now Jon continues to work and go to school despite being in pain and feeling very tired. The bulk of the family responsibilities is falling to Tiffany so anything we can do to lighten her load will be very helpful. A few of Tiffany's sisters have been going by (and plan to continue to do so) weekly and helping with cleaning, organizing and any other household chores. Anyone that would like to come by also is welcome to! The more the merrier. Some people have brought in meals and the plan is to set up a schedule for this so that they are getting help with meals on a regular basis. If you would like to bring by a meal please contact Tiffany by phone, or email us at the blog and we will let you know how to contact her.

Newest info as of Oct 28, 2009

2009-10-28T18:56:00.001-06:00

The plan is to do a brain MRI on Saturday to see if the cancer has spread there. Then they will do another pelvic bone biopsy to make sure the cancer there is from the melanoma and not another cancer altogether (like a sarcoma). The doctor is 95% sure it is metastatic melanoma in his pelvic bone, but they want to make sure as it would change treatment. Once all of the testing is done they want to take out the affected pelvic bone and all of the lymph nodes on his left side. After the surgery the plan is to give him an immunotherapy drug called Interferon. It is a one year treatment every few weeks. It's intended to act with his body's immune system to fight the cancer. The prognosis with all of these plans is 25% which is the best possible at this point.
Tiffany and Jon both seem to be in good spirits and have positive attitudes about the plan.

About Jon and Tiffany

2009-10-28T15:06:00.002-06:00

Jon (30) and Tiffany (26) have been happily married for 7 years. They have two adorable children, Maxwell (age 4) and Kenadee (age 1). Jon was recently diagnosed with stage 4 metastatic melanoma. (Find more information about this cancer here.)

About 7.5 years ago Jon had a suspicious looking mole removed from his back. It turned out to be melanoma, a very dangerous and potentially deadly form of skin cancer. At the time they attempted to remove the cancer from the area by removing some nearby lymph-nodes and the mole. They thought they got it all and for the last 7 years his blood work has looked "normal".

5 months ago Jon noticed a small, tender lump under his arm. He waited for it to heal and get better (hoping for the best) but the lump only continued to grow. A biopsy was done and they found out that the lump was actually melanoma; apparently there were some cancerous cells left from the original site and it has now spread (metastasized).

Soon after this was discovered, Jon experienced some tenderness in his leg/groin area and then cancer was discovered in his pelvic bone also. This is believed to be melanoma as well, but a bone sample needs to be taken before that can be verified. The type of cancer that is in his bone will determine how the doctors will treat the cancer.

The outlook isn't great. Even with all of the best treatments (and "best case scenarios") Jon has about a 25% chance of a cure. Jon is a strong person and he is not going to give up! He is an amazing daddy and a great husband and isn't about to leave his beautiful family without a fight. And the doctors have told him that he definitely is in for the fight of his life.

Jon has already had many medical procedures done, with many MANY more to come. They do have insurance but the deductibles and their out of pocket costs are starting to (and will continue to) pile up. We can help this amazing young family by donating money, spreading the word and offering our prayers and support.

Please help however you can!