Friday, October 22, 2010

Long awaited

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. 

Saturday, July 17, 2010

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.

Sunday, May 16, 2010

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.

Thursday, March 25, 2010

Jon's Obituary

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.

The original obituary that was in the paper can be viewed here:

Obituary for Jon

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.

Monday, March 22, 2010

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

Monday, March 15, 2010

To Everyone

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

Monday, March 1, 2010

Coming Home

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.

Saturday, February 27, 2010

Hospital stay

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.

Friday, February 19, 2010

Finally time for an update!!

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.

Sunday, February 7, 2010

Results on Jon's MRI and CT scans

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.

Monday, February 1, 2010

Got the news today. Not a good thing..

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

Wednesday, January 20, 2010

Update After Surgery

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.

Saturday, January 16, 2010


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.

Monday, January 4, 2010

Very excited to announce.....

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.