April 27, 2012

Following is the message given at Jack's headstone unveiling. It was a wonderful tribute to Jack and an opportunity to share his beliefs which helped him fight his battle with cancer. 

Wisdom from the Midrash 

(compilation of homiletic teachings on the Bible)

Rabbi Levi comments “On man’s departure from this world, as compared to and contrasted with his entry into it: Of two vessels sailing on the high seas, the ship which has come into port is in the eyes of the wise much more an object of joy than the ship about to leave the harbor. Even thus should we contemplate man’s departure from this world without sorrow or fear, seeing that at death he has already entered the harbor – the haven of rest in the World-to-Come. 

 

 

Eulogy Highlighting  Jack’s Character, Passions and FaithI want to share a few words and phrases taken from Jack’s Memorial Service that describe who he was, his character and his passions:

Friend, brother, father, husband, son, man of faith, confident, prince of a man, generous, caring, smart, quick witty sense of humor, courage, determination, growing sensitivity, tender humility, came alive with a guitar in his hands, he totally rocked, beaming smile, passionate, overprotective, attention to detail, respect he showed others, well qualified, intelligent, a leader, team player, loved his employees and customers, great talent as a manger, professional guitarist, enjoyed quality time with his family, performed & produced music, an enormous asset to his company, brilliant & honest businessman, a great listener, showed great integrity, always ready to serve, great voices & celebrity impersonations, his values were of clean living & clean fun, a beautiful spirit, impeccable manners, looked like Gene Kelly, a passionate perfectionist, loved music, loved playing guitar, loved jazz, loved worship music, did not give up fighting, never gave up & never became angry, Jack was a family man, he loved his wife, he loved his girls, he was a happy & content man . . .

These words and comments do a great deal to give us an understanding of the type of man Jack Aknin was. 

 

During this Passover Season and this Season of Resurrection, we come to honor and remember our brother Jack with the unveiling of this headstone. There is much in Jewish tradition that surrounds this ceremony, but today, I want to focus on what it was that was the foundation and motivation for Jack’s life – his belief in the resurrection because of his faith in Jesus Christ, the Passover Lamb.

The Scripture tells us that “Christ, our Passover Lamb, has been sacrificed for us” (I Cor. 5.7b). This verse is overflowing with significance, for it looks back to the Exodus, the deliverance of Israel from the bondage of Egypt, secured by the sacrifice of a lamb, without spot or blemish, whose blood was put on the doorposts and lentils of each Israelite house so the judgment of God would ‘Passover’ that house and secure the life of the firstborn of Israel. It also broke Pharoah’s chokehold on the Israelites when judgment was brought to his house. The purposes of God will stand, and no man, army or government can thwart His purposes.

This lamb whose life was given in exchange for the lives of the Israelites, was a type and shadow, looking forward 1,400 years, to that Lamb that was to come – Jesus Christ, who shed His blood for the redemption of the world.

John the Baptist, who came in the power and spirit of Elijah said of Him (Christ) when he came to be baptized, “Behold, the Lamb of God, who takes away the sin of the world’ (Jn. 1.29)

You see, Jack placed his trust in the sacrificial death of Christ, the Lamb, given in exchange for his life and therefore, Scripture tells us, he was a ‘son of Abraham’. For Abraham wasn’t justified before God by his ‘works’, but by his faith in God and His promises, for it tells us in the Book of Genesis that, “Abraham believed God, and it was counted to him as righteousness” (Ge. 15.6). This is the faith, trust and belief that Jack confessed and was the foundation upon which his life was built.

This celebration today is a recognition of the fact that as this cloth is removed and the headstone is unveiled, so Jack will follow in his Savior’s footsteps and be raised to newness of life. For two thousand years ago saw the ultimate “headstone unveiling” when Christ, our Passover Lamb (after He had made sacrifice for sin once and for all), burst forth from the tomb that first Easter morning as a declaration to the world that all righteousness had been fulfilled, and that by virtue of His resurrection, He became the first-fruits of those who have ‘fallen asleep’! There is therefore now no need for continuing sacrifice for sins. For the entire sacrificial and priestly system of the Old Testament was a type and shadow of the reality that was to be fulfilled in Christ. It is this same Jesus that was the Rock and Foundation of Jack’s faith!

Jack put no confidence in his own goodness, for the Old Testament tells us that our righteousness is as filthy rags – that was the reason of the entire sacrificial system – that we were so unworthy to be in Gods’ presence because of our sin, that another had to die in our place to allow us access into the Holy of Holies – the very presence of God. This pointed to the day when Christ came – as the perfect, spotless Lamb of God, to die once for all, so that all that is required of us is to believe and accept what God did for us in Christ -- that which we couldn’t do for ourselves!

If you look all around us now, we see evidence of Springtime – new life breaking forth out of the dead of winter. As we just celebrated the Passover Seder with all of its attending symbols we see the promise of redemption and deliverance in the midst of despair. One of the things we do as part of the Seder meal is to dip the green parsley into salt-water – representing the promise of new life, hope and deliverance mixed with tears.

We stand here today with that same hope in the promise of new life, yet mixed with tears of sorrow, remembering Jack, and yet joyfully looking forward to the resurrection – the New Springtime of the New Creation!

Jack believed that we live in a broken world! But the world was put on notice two thousand years ago that there’s been a cosmic change, a tremor in the Force if you will, when Christ was raised from the dead as the firstfruits of those who have fallen asleep. This is the Christian’s Hope, that the body that dies, will also rise – not in some mysterious way, but in a real, bodily, physical fashion! For the Scriptures tell us that Christ died for our sins in accordance with the Scriptures, ⁴ that he was buried, that he was raised on the third day in accordance with the Scriptures . . . 

³⁵ But someone will ask, “How are the dead raised? With what kind of body do they come?” ³⁶ . . . What you sow does not come to life unless it dies. . . . ⁴²  So is it with the resurrection of the dead. What is sown is perishable; what is raised is imperishable. ⁴³ It is sown in dishonor; it is raised in glory. It is sown in weakness; it is raised in power. ⁴⁴ It is sown a natural body; it is raised a spiritual body. . . . ⁵¹ Behold! I tell you a mystery. We shall not all sleep, but we shall all be changed, ⁵² in a moment, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, and the dead will be raised imperishable, and we shall be changed. ⁵³ For this perishable body must put on the imperishable, and this mortal body must put on immortality. ⁵⁴ When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written:

“Death is swallowed up in victory.”
⁵⁵  “O death, where is your victory?

O death, where is your sting?”

⁵⁶ The sting of death is sin, and the power of sin is the law. ⁵⁷ But thanks be to God, who gives us the victory through our Lord Jesus Christ. (See I Cor. 15)

 

Scripture tells us that to be absent from the body is to be present with the Lord. Jack is now experiencing this ‘presence’. But one day this tombstone will be ripped away – as the stone was two thousand years ago on that first Easter morning, and Jack will be raised, an imperishable body and experience the New Creation that God originally intended.

Let us rejoice today in God’s great and precious promises and KNOW that Jack is in the very presence of the Savior he loved and lived his life for. AMEN!

Let me finish by quoting The Apostle Paul, who summarized what I’ve been trying to say (regarding the resurrection) in his first letter to the Thessalonians (4.13-18):

¹³ But we do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope. ¹⁴ For since we believe that Jesus died and rose again, even so, through Jesus, God will bring with him those who have fallen asleep. ¹⁵ For this we declare to you by a word from the Lord,^[d] that we who are alive, who are left until the coming of the Lord, will not precede those who have fallen asleep. ¹⁶ For the Lord himself will descend from heaven with a cry of command, with the voice of an archangel, and with the sound of the trumpet of God. And the dead in Christ will rise first. ¹⁷ Then we who are alive, who are left, will be caught up together with them in the clouds to meet the Lord in the air, and so we will always be with the Lord. ¹⁸ Therefore encourage one another with these words.

I encourage you with these words about our brother, Jack and I want us to continue encouraging one another with these words – for this is our hope – that the body that dies is the body that will rise.

“Thanks be to God for his indescribable gift!” (II Cor. 15) – Amen!

 

El Maleh Rahamim [O God, Full of Compassion—a prayer] 

 

Transliteration: 

E-l malei rachamim,
shochayn bam'romim,
ham-tzay m'nucha n'chona
al kanfay Hash'china,

b'ma-alot k'doshim ut-horim
k'zo-har haraki-a mazhirim,

et nishmat (Name of the Deceased)
she-halach l-olamo,

ba-avur sheb'li neder etayn tz'dakah
b'ad hazkarat nishmato.

B'gan Ayden t'hay m'nuchato;

la-chayn Ba-al Harachamim
yas-tiray-hu b'sayter k'nafav l'olamim,
v'yitz-ror bitz-ror hacha-yim et nishmato,

Ado-nay Hu na-chalato,
v'yanu-ach b'shalom al mishkavo.

V'nomar: Amayn.

 

Translation: 

O God, full of compassion, Thou who dwells on high.

Grant perfect rest beneath the sheltering wings of Your presence,

Among the holy and pure who shine as the brightness on the heavens,

Unto the soul of Jack Raymond Aknin, son of Joseph Aknin, who has gone to eternity,

And in whose memory charity is offered.

May his repose be in paradise.

May the Lord of Mercy bring him under the cover of His wings forever,

And may his soul be bound up in the bond of eternal life.

May the Lord be his possession, and may he rest in peace.
And let us say: Amen

 

 

 

 

 

 

 

 

 

 

 

January 23, 2012

Click here for recent photos.

 

Dearest family and friends,  

 

It has been almost eight months since Jack’s death. There are so many of you that were a part of Jack’s battle. So many that we wanted to wish Merry Christmas and Happy New Year to with a hug. We decided updating Jack’s site is the best way to reach those of you in Germany, Kenya, France, India, New York, Israel and San Jose!

 

Our lives~

The girls are strong, resilient and busy. I’m so proud of them and since this is Jack’s site, I know that is what he would want to say too.

 

This year~

Chloe auditioned for Foothill Jr. College’s Theater Conservatory Program and was accepted with 19 other students. A few of her classes are Acting, Dramatic Lit and Theater Make-up. (See pictures in photo album.) Chloe was a huge help at SJDT’s The Nutcracker helping me in the boutique and guiding tours. She is also taking a leadership class at church and in the spring she will be directing and choreographing The Music Man for a K-12 school. She purchased season tickets to Broadway San Jose for her sister’s birthday and they are loving their night’s “on Broadway”. 

 

Margot is a senior and has decided to pursue ballet professionally. She geared up over the holiday break  for company and summer auditions which began in January. So far, she has been invited to join Pittsburgh Ballet’s summer and year round graduate program (her top choice) and has more auditions almost every weekend through March. We are very excited. 

Anyone want to go see Pittsburgh with me? She and Sophie will be performing Cinderella in Los Gatos Ballet’s production this May.

 

Sophie is a Freshman and going to school full time. She is a straight A student and has joined 3 or 4 school clubs. She has Jack’s gift of musicianship and is taking Jazz piano. I love hearing her practice and hearing the piano in our home again. She’s starting out with Vince Guaraldi’s “Peanuts Christmas” which is no easy task. She also nailed her parts in The Nutcracker and will be going away this summer for a ballet intensive. I am so proud of her determination and energy. Next year she wants to audition for shows at school and is trying to convince me that she should get her license before the Aknin required age of 17. I’m thinking about it...

 

All three girls have the discipline, drive and the same commitment to perfect their craft that Jack had. They all remind me so much of him in that way. 

 

As for me, A friend perfectly described the way I feel by saying “It’s kind of like the nuclear winter that follows the damage from the initial blast.” A “haze” has settled over me and I have no idea how long it will last.  Chloe and I love the Broadway show “Next to Normal” which is a good description of me! 

I’ve joined a partner loss group and it’s been helpful to be with a group of people experiencing the same things. We laugh, cry, show pictures, brag about our spouses and everyone listens. I am also sorting through things that weren’t touched for the two years that we dealt with Jack’s illness. I am filing papers, cleaning cupboards, fixing up the house and, driving the girls of course! Margot said she thought I was “going crazy” with forgetfulness but I told her “No, I’m just loosing my mind and eventually it will come back”, hopefully before I am so old that it will be time to loose it again! 

 

There are so many things I have learned these past eight months and conclusions I have come to. A few are:

 

• Grief is internal and mourning is the verbal sharing of that grief. People have said to me that they are afraid to say anything to me about Jack because they don’t want to make me sad. I am sad but as I have learned in my grief group, there is nothing we would rather do than hear stories and talk about our loved one. Many people are grieving the loss of Jack and need to mourn by sharing their memories and thoughts. Share them with me or whom you choose. It helps! 

• The fact that a person is gone from earth does not change your love for them. When we marry we say, “The two shall become one”. When we loose a spouse, it’s not just a separate person that dies but also a part of ourselves. In time, new life will grow but it can’t be forced and those of you that know me know I am not an advocate of GMO. I guess that goes with my own life as well. I just have to allow the process of new life to take place slowly and that means living through the winter.

• God our heavenly father has cared for us in more ways than we could have ever imagined. While we miss Jack’s presence (and jokes) we know that God loves us and has provided for us the way Jack would want to do himself and more.

• Jack provided for us in a way I never imagined~ through relationships. His integrity and care for people has come back to bless us one million fold. I hope Jack can “see” the care we have received from so many people. I have started many a sentence when talking to the girls with “Well, once again, because of Daddy, so and so wants to help us by....” His legacy impacts them today and will for the rest of their lives.

• And... a special thank you to you men that came to the Nutcracker. I know that would really bless Jack as watching his girls was everything to him. I know he was smiling while you sat through the Pas de Deux! 

 We wish you lots of love, and a happy new year!

 

 Barbie, Chloe, Margot and Sophie~

 

 You have helped us:

• buy cars
• sell cars
• carpool
• with meals
• set up a college fund
• with financial planning
• taken pictures of us
• hung Christmas lights
• mowed the lawn 
• taken me to dinner
• sent us away on trips
• painted rooms
• taken out the trash
• done yard work
• electrical stuff
• helped me figure out the computer
• grocery shop
• organize
• replace batteries
• move furniture
• watch our dogs
• get out and have fun

 

 

 

Wednesday, April 27, 2011

 

Our friend, brother, father and husband died peacefully this morning with his family at his side.  In the midst of the great sadness we all feel over losing such a dear friend, there is peace in knowing that he is now restored to perfect wholeness and will never again experience the difficult challenges he has faced these past two years. 

Arrangements are being made for a small funeral for the immediate family. A memorial service is being planned for everyone that knew and loved Jack. Please check back for updated information.

In lieu of flowers, a college fund is being established to help with the Aknin girls college tuition. A memorial  can be sent to the "Fight Back For Jack" fund with "college fund" written on the memo line. Donations can be sent to c/o John Isaacs, 4481 Faraone Court, San Jose, CA 95136. Donations can also be made by Paypal on the donation page.

Thank you ALL for the many prayers and loving support you have shown the Aknin family.

 

 

Thursday, April 7, 2011 (Update from Barbie)

Many of you have asked how Jack is doing. 

At this point, I want to be very honest as things change on a daily basis. 

Jack was admitted to Good Samaritan Hospital on March 12th with a broken leg. It occurred during a fall he had at home but the break was caused by the pressure from a tumor that had weakened the bone. He was transferred to UCSF in San Francisco for surgery to repair the broken bone in his leg and then transferred to St. Mary's in San Francisco to receive his next IPI infusion while he was recovering.  However, he has appeared to be getting sicker and sicker each week. The doctors at St. Mary's did a MRI on his brain last Thursday and informed me that he had some new brain mets (tumors) and a "blanket of tumor-type liquid" surrounding his brain that could not be treated. He has not been eating now for over a week, has been very nauseated and continues to grow weaker and weaker. 

The doctor's decided to take him off all treatments and send him home to receive hospice care as he lived out what little time he had left. They gave said he had maybe two weeks to live.

At my request, I asked them to fax the brain report to his neurosurgeon who is the head of neurosurgery at Stanford. His nurse called me Friday to say the doctor never reads other's reports because they are usually wrong. She asked me to hand deliver the cd to Stanford, which I did  last Friday. Over the weekend I watched him suffer and began to prepare for the worst. My pastor came on Monday and picked me up in San Francisco to bring me home to tell the girls that Jack was coming home on Tuesday but was very sick and might not have very long to live. 

As we pulled into my driveway, the neurosurgeon's nurse called. She said to me, "The doctor thinks his brain looks really good!" He does have one new small, treatable brain met that is in the area of the brain that causes nausea which explains his loss of appetite. The doctor also disagreed with the finding of the "blanket of cancer" saying he didn't see it. The only way to know for sure would be to do a lumbar puncture which would be too much for Jack at this time. After talking to the nurse extensively and Jack's oncologist, we decided to bring him home with hospice and see what unfolds. In addition to the brain, Jack has wide spread tumors throughout his body which causes him tremendous pain.

This next week will be the turning point. It could go quickly either way. The neuro nurse and case worker both told me that many times they have seen people go home without much hope of living and then they see them walk into the office a month later. The case worker got in my face and almost scolded me saying "I have seen miracles! I believe in miracles! Don't give up!" 

So here is our plan:

We are caring for Jack as though he will live. He has been home for 3 hours and already finished a healthy smoothie. We have posted scriptures of life and God' goodness all around Jack's bed along with pictures of his family. For those of you that don't know Jack personally, he is a master guitarist. Over the 20 years that he has committed his life to Christ, random people have prayed over him and said "Jack has the heart of David". David was a worshiper, so we will have worship music on as much as possible. We had worship music on today and we noticed Jack wiggling his fingers and realized he was playing "air guitar" which is a wonderful blessing to see. Even in his sickest moments he is "playing the guitar"! Today Chloe sat by her father and read him scriptures that she had chosen for him. They had a precious time together.

So, we are hoping for a miracle and praying that Jack will begin to improve but we are also preparing ourselves emotionally for the worst. 

Jack is now requiring full time care. I have hired extra help to come at nights to care for him. During the day, it is me and everyone that is driving my children to and fro. My church has set up a meal program if you would like to help. http://www.mealtrain.com/?id=mcl76aexnp5t 

Also, it would be helpful to receive emails rather than phone calls as Jack's bed is downstairs by the phone. We are trying to keep it quiet and, I am struggling to answer the calls.

Thank you so much for your love and prayers.

 

 

Monday, March 28, 2011 (Updated by John Isaacs)

The insurance company finally approved Jack's transfer to St. Mary's in San Francisco and he was moved there on Saturday. He will be at St. Mary's for the next few days and hopefully longer if needed. He is now one week off his schedule for the IPI infusions but will get back on schedule this week. The oncologist nurse visited them this morning and said that they are considering increasing the dosage of the IPI infusions since Jack has not suffered any side effects from the treatment. The higher dosage may cause the tumors to decrease more rapidly and prevent new tumors from developing. The FDA approved the IPI infusion treatment on last Friday and this will give the doctor more options in altering the dosage even though Jack is still in a clinical trial.

His recovery from the surgery on his leg has been slow and he is still in considerable pain. The discomfort from tumors on his spine is making the physical therapy more difficult. The goal of the physical therapy is to get Jack up out of bed and able to walk with the help of a walker. This is critical to Jack being able to go home.

Barbie was able to spend some time this weekend with the girls and took them to San Francisco to see Jack on Sunday. She spent Sunday night in Jack's room and will be with him for the next few days.

Thanks to everyone who is helping with carpooling the girls and watching over them while Jack and Barbie are in the hospital.

Please pray for Jack's physical therapy to go well and for him to get back on his IPI infusions this week. 

Thursday, March 24, 2011 (Update by John Isaacs)

Jack had a successful surgery to repair his broken tibia and is now recovering at UCSF. The surgeon inserted a steel rod to give additional strength to Jack's leg. Jack has been in considerable pain since the surgery and is going to need physical therapy to restore muscle tone in his right leg before he is able to put weight on it.

The current challenge is trying to convince the insurance company to allow Jack to rehabilitate at St. Mary's in San Francisco where he is receiving IPI infusions to treat the melanoma. So far, the insurance company is insisting that Jack return to San Jose and be admitted to a convalescent care facility until he recovers from surgery. If that happens, it will postpone Jack receiving his next IPI infusion. It seems best to everyone except the insurance company for Jack to remain in San Francisco.

Jack has been on strong pain medication for several weeks now and has been on his back due to the broken leg. His recovery from the surgery has been slow and is complicated by the cancer he is battling.

Barbie is tired and is bordering on exhaustion. She has been by Jack's side almost 24/7 since he fell and broke his leg. She has been his advocate with doctors, nurses, and the insurance company around the clock. She will need additional help to care for Jack when he comes home.

Please keep them in your thoughts and prayers. 


Wednesday, March 16, 2011 (Update by John Isaacs)

I talked to Barbie this afternoon and she said that Jack was resting and they are waiting for the surgeon to schedule the procedure to repair his broken leg.  Scans were taken today at UCSF and the doctor said that the bones haven't moved and are lined up just where they should be.  The tibia has remained straight and perfectly aligned since the break on Saturday morning.  They feel confident that the surgery should not be a problem and they are planning to insert a rod to give strength to his leg and assure correct alignment during the healing process.  The surgery should take place soon.

 

Tuesday, March 15, 2011 (Update by John Isaacs)

First the good news!  Jack is back on the clinical trial with the IPI treatments and will be driving up to San Francisco every other week to receive the infusions.  The IPI infusion is designed to boost his T-cell immune response to the tumors and in almost 30% of patients it has proven to be very effective.  Jack has shown some tumor reduction since beginning the IPI infusions which is a really good sign.

Now for the bad news!  On Saturday morning Jack became faint and fell at home breaking the tibia (the lower leg bone) on his right leg.  He was taken to Good Samaritan Hospital and admitted for surgery to repair the broken leg.  The surgery was delayed due to the complications from the location of the break, being where a tumor has been growing.  He also needed a blood transfusion to boost his blood count and had a low grade fever.  Because it was the weekend it was also difficult getting the surgical doctor to schedule the surgery.  By Monday morning the surgery had still not been scheduled and Jack has been in considerable discomfort.  Barbie was finally able to get in touch with Jack's oncologist at UCSF and he immediately took action to have Jack transferred to UCSF where the oncological surgical team there could perform the needed surgery.  The doctor was able to get the insurance company to approve the transfer and get a release from the doctors at Good Samaritan (no small feat).

Now it is Tuesday morning and Jack is still at Good Samaritan Hospital in San Jose waiting for a room to open up at UCSF Medical Center.  They should get the transfer to San Francisco later today. 

Please keep Jack and Barbie in your thoughts and prayers.  This has been a very difficult few days for them both.  They are very happy about Jack being able to get the needed surgery at UCSF but are still trying to negotiate all the complications of getting up there. 

Tuesday, February 22, 2011
Happy Belated Valentine's Day!
 

I wish we could send a Valentine to each and every one of you and thank you for all of your support.

First of all Jackapalooza! Details on the party for Jack will have to wait. I still can’t find the words to express what the evening meant to us. I will tackle it when I have pictures to post.

As for the update: 

We met withJack’s doctor on the second of February. Jack does have some tumors shrinking or gone and, many that have grown. This means the IPI may be slowly beginning to work or Jack’s body may be slowly beginning to respond. 

The doctor feels that because Jack has gone through so much with whole brain radiation, Cyberknife, etc., his body may need more time and more Ipi to really begin responding. This is cautiously good news. 

The doctor insisted that Jack take a month “off” to recoup, rest and gain strength. It is also part of the protocol to have a break in between treatments. In 2 or 3 weeks he will have more scans and the first week of March we go back to see whether there is still shrinkage and find out whether Jack gets to stay on the trial. It will be up to the drug company. The doc also felt strongly that Jack is beginning to respond and he really wants to keep treating Jack.

This all reminded us of the man I mentioned in the 1/14 update. Ipi takes a while to work and things grow in the meantime but you have to wait it out.

To be prepared for bad news, we met with the doctor at UCSF yesterday for plans B, C and D if we need them. The doctor’s comment to Jack was, “I can’t believe you are still here! You look great!” He is in contact with the doctor at St. Mary’s and will come up with some treatment/trial options and get back to us this week so that we can research his suggestions. 

We know that “Jack is still here” because of all of your support and prayers and because we believe it is God’s will! Jack has absolutely NO strength right now which makes the saying “Fight Back for Jack” very poignant and important to us. We feel everyone’s strength, thoughts and prayers are carrying our family through this trial each and every day.

 

 

Friday, January 14, 2011 (Update from Barbie)

Jack is definitely “fighting the fight”. It is getting harder for me to write, as there are so many areas in his body that he is battling.

Now on long-term disability, he has not been working for 3 months and misses the staff, clients and friends.

He has lost his hair, walks with a cane and is weak and tired. It’s hard for me to see him this way but the girls and I do think he looks pretty good with his new “do”!

We met with the doctors at St. Mary’s on Tuesday and he had his 4^th treatment. We asked the doctor “how long do we wait for the Ipilumimab to kick in”. Tumors are growing and Jack is having multiple side effects. The answer was “let’s wait for 3 weeks to see what happens”.

I was ready to abort and moveon to a new treatment but we met a man on Thursday (a friendof a friend) that was diagnosed with stage 4 melanoma four years ago. His own doctors had given up on him when he heard about the brand new (at that time) Ipi trial. It took quite a while but the Ipi kicked in and he is doing well 4 years later. It was very encouraging to both of us.

So, we will wait another three weeks and do more scans andHOPEFULLY the tumors will respond. In the meantime Jack is having radiation on his shoulder, hip, and shin. He is also undergoing Cyberknife on his spinal column and continues to have whole brain radiation. The exhaustion and nausea has him on the couch. The possible side effects are difficult, numerous and scary. 

As painful as this all is, the support and plans for Jackapalooza (fundraiser for Jack) have brought us all to tears. Jack’s clients, friends and music lovers have blessed Jack beyond words by their efforts to see him well. We are blown away and I think he deserves it. People, family, relationships, clients and friends are what Jack is all about. I am so glad that he gets to see what he means to everyone! 

 

Thursday, December 16, 2010 (Update from Barbie)

Hi all, 

Jack has a lot going on and I will try and update you on everything. He will have his 3rd treatment of Ipi on December 21st. (See Dec. 1) We won't know whether it's working until scans in mid January. In the meantime, tumors tend to grow before they react to the medicine. It's a little scary to wait but it's what we need to do. He has had some mild reactions to the meds, mostly a queasy stomach andfatigue caused by his immune system working (hopefully) in overdrive. 

We have also been to the radiologist at Stanford. Jack continues to get small (1 mm) tumors in the brain so the doctors have decided that he should get whole brain radiation rather than continue to pinpoint individual tumors. This will begin on the 22nd at O'Connor. There are minor side effects, mainly more fatigue and he will lose his hair which is a big bummer!

There is also a tumor pushing on his optic nerve which is shutting his right eyelid. Another bummer! This is really bothering Jack as you can imagine and keeping him from driving, etc. The doctors have told us it should correct itself but the brain is a very slow responder so it could be months. We are praying that he gets relief quickly. 

We are hanging out and staying close to home although the girls never slow down!  Jack is doing a lot of resting and I am trying to find foods that sound good to him.  

I put some new pictures in the "Photo Album" link. Our prayers are listed on Dec. 1 of "Prayer Requests" 

Let us know if you would like to stop by and say hi.

 

Wednesday, December 1, 2010 (Update from Barbie)

Dear family and friends,

We are very behind on updating the website and I apologize. I am having a hard time keeping up and Jack’s notes are very short and to the point!

I will try and update you in order of what has been happening:

• First of all, once we foundout the IL2 treatment was not working, we met with Jack’s doctor at UCSF to decide the next treatment. The clear choice was Ipilumumab:  http://www.nejm.org/doi/full/10.1056/NEJMoa1003466  which is a drug that has completed the trial phase and is waiting for approval by the FDA.
   
• Essentially, “Ipi” revs up the immune system, attacking the cancer cells. It is not chemo, which attacks individual tumors but rather a drug that will systemically go after the cancer cells and their growth. The scary part is that because it changes the immune system, it takes awhile to work, (possibly three months) and in the meantime, the tumors may grow. The good news is that some patients have at least a five-year result, which is how long the drug has been tested.
   
• While we wait for results, Jack has to manage the tumors and side effects from those tumors as they come up. He recently finished radiation on several tumors and the doctors are keeping a close eye on him.
   
• Jack will be having another Cyberknife treatment on Friday, December 3rd, as he has one or two new brain mets. He is also having side effects to a previous Cyberknife treatment and has a droopy eye and blurred vision in his right eye. Both of which should correct themselves once the swelling decreases and the tumor shrinks.
   
• Because of the radiation and side effects, Jack is tired! He is enjoying the couch and his dog.
   
• We have also had some special moments this fall. Our dear friend Harmon Parker was nominated CNN Hero and we were able to go to LA to see the taping of the CNN Heroes Tribute that was broadcast during Thanksgiving on CNN.  http://www.cnn.com/2010/LIVING/11/21/cnnheroes.hero.of.year/index.html
   
• This weekend, Jack gets to see his girls in The Nutcracker, all of which have fabulous parts this year. We are looking forward to a fun weekend with family and friends.

I want to thank you for your messages to Jack and me and all of your support. It means so much to us and helps us to get through these difficult days. We are so thankful for each one of you and wish everyone a wonderful Thanksgiving.

I also updated our prayer requests. Thank you for your prayers!

Monday November 1, 2010

Beginning 2nd week of radiation treatments at O'Connor. Scheduled MRI / tests this Thursday at St.Mary's in S.F. for Ipilimumab treatments which are scheduled to begin next Tuesday.

Friday October 22, 2010

Completing the planning phase today for radiation treatments that will begin on Monday and continue for 2 weeks.

Thursday October 14, 2010

We received some very bad news today. The results from yesterday's PET scan indicate that the Interleukin-2 treatment that Jack underwent recently did not work. Worse yet, there is progression indicated by new tumors and growth of existing ones. We are faced with choosing the next course of treatment options as quickly as possible, none of which are great nor without potentially serious side effects. 

In addition, Jack will undergo radiation treatments for tumors that are accessible (face, neck and chest) for probably several days at O'Connor Hospital beginning this coming Monday.

Your continued prayers are much appreciated.

Wednesday October 6, 2010 - Update from Barbie

Jack has been resting and recovering from the last IL-2 treatment. It was brutal and exhausting but he is now doing well. We met with the doctors twice in the last 2 weeks and Jack’s blood counts have recovered and look good. His back is feeling somewhat better each week since he competed the radiation treatment (in late August) and he has lost about 15 pounds. A three-month check up andMRI with the neurosurgeon at Stanford last week showed good results from the Cyberknife treatment in June, but unfortunately revealed two tumors the about the size of a dot in his brain that are very treatable.

He had 2 Cyberknifetreatments last week to deal with the tumors. While having the tumors are disappointing, I was very happy that there were only 2 tiny ones, this after not being on any treatment for 4 or so months. Now we wait. Jack will have scans on the 13th and we meet with his doctor on the 14th to measure the effectiveness of the IL-2 and if the tumors are shrinking. We are also researching other options as a back-up if needed. Jack is now on short-term disability.  He has time to rest, recover and try to strengthen his body. Thank you as always for your prayers, thoughts and messages. They truly hold us up and giveus strength.

Wednesday, September 15, 2010

Jack came home on Saturday and is resting and recovering from his stay in the hospital last week.  The doctors believe he is right where he needs to be in response to the treatments of Interleukin 2.  After a few weeks of rest he will have new body scans to determine how effective the recent treatments have been.  If his cancer is responding to the Interleukin 2 then they will schedule another round of treatments.  If the treatments haven't been working against the cancer then they will discuss other treatment protocols.

Friday, September 10, 2010 at 10:00 am.      

Jack is doing better this morning and his recent blood test showed close to normal range on white cells and platelets.  He will receive one more treatment today and will not need to have a blood transfusion.  Barbie will bring him home tomorrow if all goes well today.

Thursday, September 9, 2010 - 4:00 pm

Jack is experiencing severe reactions to the treatment and due to having a fever of 103 and dropping blood counts they have reduced the dosage from three times a day to only twice a day.  Please pray that the side effects will be minimized in order for him to continue treatment.  He received some oxygen today and they are talking about doing a blood transfusion.  They don't want to stop the treatment prematurely but will have to if his vitals don't improve.  Pray for his blood counts to improve, his fever to reduce, and the side effects to become less.

Wednesday, September 8, 2010

Jack Akninhas made it through three doses of Interleukin 2 since yesterday afternoon. His reactions are more severe this time aroundas the drug is building up in his body. He hasn't been eating or drinking enough to keep his strength up and last night he had difficulty sleeping. Please pray for him to be able to eat and drink more today and that he will be able to sleep tonight. Also, pray that his white blood cell count will not drop below safe levels - if they do, he will have to discontinue treatment. If you want to join the 24 hour prayer chain for Jack, go to this link "24 Hour Prayer".

He will be receiving a dose every eight hours on the following schedule:  12:00 am, 8:00 am, and 4:00 pm.

Tuesday, September 7, 2010

Jack will begin the second round of Interleukin 2 today.  If all goes well, he will continue treatments through Friday, September 10th.

Thursday, September 2, 2010 (From Barbie Aknin)

Dear Family and friends,

I wanted to give an up date on Jack but first I would like to say THANK YOU to everyone for your prayers, thoughts and messages. They have been HUGELY helpful and encouraging to Jack and me.

Jack received the IL2 treatment every 8 hours starting Monday, August 23^rdat 4:00pm. After each dose the nurses would say “This time you will definitely experience side affects for sure” and he would make it through, calm, peaceful and sleeping. Not that it was easy but we really felt that it was everyone’s prayers and support that made it bearable and successful. We told the nurses that he has people praying and thinking of him in India, Germany, Kenya, Canada, France, San Jose and more! Several of them told us that they had never seen anyone make it to 12 doses andmost make it to around 7 out of the 14. He did have stomach issues from the IL2 and primarily from radiation but that has subsided andhopefully will be easier this next go-around.

Since he has been home, he has been sleeping a lot and slowly getting his appetite back. This is what we expected as his immune system is hard at work. We also want him to rest up for Cycle A-Phase B, which starts next week. He will go in on Tuesday, September 7th and stay the week. The nurses have said that second time around most people don’t make it as long due to vital signs becoming dangerous but we ask that you continue to pray and surprise the nurses again!

The girls and I are doing well thanks to everyone’s love, support, errands, cards and meals. Margot turned 16 and the girls started school the day Jack went into the hospital but they were well taken care of. We are so thankful for all of our family and friends!

Thursday, August 26, 2010

A special thanks from Barbie and Jack to all of you for lifting them up in prayer.  They were blessed last night by Cindy and Lora Nardibegin_of_the_skype_highlighting     end_of_the_skype_highlightingshowing up in the ICU at UCSF Medical Center to encourage them.  Unfortunately, they weren't allowed into the room to see Jack.  Today, has been a little bit rougher on Jack as the Interleukin 2 treatments are building up in his system.  The main concern for prayer is that his blood platelet count has been dropping and if it continues to decline they will have to discontinue the treatment one day short of their goal.  

Wednesday, August 25, 2010

Jack is now half-way through his first round of treatments with the Interleukin 2 and is doing very well.  Actually, better than expected.  His vital signs have remained strong but are now beginning to show some evidence of the treatments.  Today, he was able to wash-up and take a little stroll around the ICU.

Please check on the updated "Prayer Requests" for a list of specific things to now be praying. 

Monday, August 23, 2010

Today, Jack starts the Interleukin-2 treatment andwill be hospitalized for a week.  The treatment has been successful in the past for people withadvanced melanoma, the kind that Jack has. It essentially turns on the immune system at full power so that it can aggressively attack cancer cells and tumors.  The side effects can be serious andJack will be in the Intensive Care Unit at UCSFMedical Center during this week with his health being carefully watched.

Thursday August 5, 2010

Having experienced severe pain and numbness in my back over the last couple weeks promted an MRI yesterday. Blindsided to say the least, it was discovered that I developed 4 tumors in my spinal column. One in the lower back is presingon the nerve bundle causing the pain and numbness.

I was immediately put on steroids to hopefully reduce the inflammation. I am also beginning two weeks of radiation theapy on my spine to try to erradicate the tumors and praying for no permanent damage. 

Once I complete the radiation treatment it's off to UCSF intensive care for IL-2 treatments. Thank you for checking in and of course or your prayers and support, which I and the family truly appreciate.

 

Saturday July 24, 2010OK, time to get caught up. Visited Docs at St. Mary's in S.F. a few weeks ago to explore a trial with Ipilimumab. A 3-month course of treatment and with no solid indication whether or not it was working until at least 3 months have passed. Side effects are delayed, and could be serious. After a few days of thinking about it, decided that's not what I wanted to do after all.

Back to UCSFto discuss other options. Looks like I will do the Interleukin-2 treatment beginning in late August. It is so intense that it requires 1 week in intensivecare with 24/7 care while receiving treatments followed by one week out, then repeated 1 or 2 times. IL-2 is an immuno-therapy, which revs up your NK (natural killer) cells that in turn go after cancer cells. When it works, it works well and has better durability (lasting results) than most other treatments. I say bring it on...time to kick some cancer-butt.

Thursday July 1, 2010

Met with my doctors at UCSFtoday to discuss my next treatment plan options. It's sort of like needing to get in the water but deciding which cliff to jump off of to get there. Interleukin-2 is back on the table, which would require a total of two x 5 day admissions in intensivecare, with a week off in between. Very intense side effects, but often yields good results. Also a new  chemotherapy clinical trial is a possibility.

Meeting with a new doctor at St. Mary's in SF next week to explore another treatment option that is being offered - a new immuno-therapy drug called ipilimumab. Shows positive results for many, but nasty side effects are possible. It will be decision time real soon since I am not on any treatment at this moment.

Wednesday June 30, 2010

I had 2 Cyberknife treatments at Stanford, one yesterday and one today for two new small brain tumors. It was spiltonto two days so that a lower dose of radiation could be used due to the precarious location of one near my optic nerve. Feeling tired and a bit nauseous, but otherwise OK. Follow up is in three months.

Tuesday June 15, 2010

We got bad news (but semi-expected) today at UCSF. Jack's cancer is growing and has "broken through" the chemo treatment. He has 2 new tumors in his brain and at least several tumors in his body have grown quite a bit. In the midst of the bad news, we are remembering that his cancer shrunk by 90% on the trial treatment and many tumors disappeared. He was one of 2 or 3 people that stayed on the trial for so long and did so well and we are grateful to God for that success.

Now we have to find the next treatment. We’ve discussed new treatments with the doctor. There are 3 or 4 possibilities but 2 in particular that we are looking at.  One is a chemo cocktail mix that is a trial drug but past the trial stage. The other treatment is Ipilumimab, which has gotten a lot of press lately but not Jack’s doctor’s top choice. Also, both treatments are very harsh with multiple side affects.

We agreed with the doctor that we would all think about it for a couple of days and he and we would try and get a “gut feeling” (as the doctor put it) on which treatment to try. The success rate of most treatments is similar so it’s a guessing game as to which one the body will respond to. He will be having another Cyber-knife procedure to deal with the small brain tumors and then possibly have surgery to remove the tumor on his jaw, then, go on treatment.

Tuesday May 18, 2010

An obvious growth in one tumor has raised a cause for concern. We're not sure if it is an indicator of a systemic problem or if it is isolated. The next scans in 3 weeks will tell. there is an option to have it surgically removed, but that could jeopardize my staying in the clinical trial. In other words, we solve one problem but cause a bigger one. They are looking into the rules of the protocol. In the mean time, I began round 12 of week long chemo today and will wait 4 weeks for the news. The stress of this, plus work and other various things is very difficult. I and my family could use your prayers. Thank you.

Tuesday April 20, 2010

After spending the last several weeks and most of today concerned about having possibly hit a plateau or worse and being taken off the trial, we just got some good news. Further reduction in one of my lung mets and another one no longer seen. Several other lesions no longer seen, andno new ones. While this battle is far from over, this was good news. Began round 11 of chemo this week. Thank you for your prayers - they are working! And thanks for all of the encouraging messages - they are uplifting.

Tuesday April 13, 2010

CT scan and MRI today. These may be the most important scans since the first ones as they will most likely determine whether the clinical trial treatment is still effective, and therefore if I will be able to continue or be removed from the study. Meeting with doctors next Tuesday 4/20 to get the report. We are praying for good news. This could be a long week.

Tuesday March 23, 2010

Monthly visit to UCSF andbeginning of round 10 of Chemo for the next 7 days. Scans in four weeks will tell the story whether or not treatment is still working or not. Remaining hopeful.

Wednesday March 17, 2010

Jack had a check-up with his neuro-surgeon at Stanford today to review the most recent MRI results. He was pleased to report that there were no new tumors andthat the three tumors that were treated with two CyberKnife procedures last year are not visible and presumed gone. Any visible minute traces were most likely dead scar tissue. This was a great day. Next visit to UCSF andbeginning of round 10 of chemo is Tuesday March 23. 

Tuesday, February 23, 2010

We had our monthly visit to UCSF today andJack is now on another round of chemo. We had some (possible) discouraging news today.

The good news:
The tumors are measured and a percentage is calculated using all tumor measurements.  In the first seven months, Jack's tumors shrunk a total of 88%!  Many had completely disappeared.  The doctor has been very happy with Jack's response to the drugs. 

The not so great news:
This months scans showed slight growth in some tumors. This could means any of the following:

• The numbers/measurements are slightly off as tumors are more difficult to measure as they grow smaller. 
• They have stopped responding to the meds. or are growing. 
• They may have stopped for a bit but will continue to shrink.

It's now once again a waiting game.  He will have two more months of his present chemo and then there will be more scans in April.  If the tumors have not shrunk by then or if they have grown, we will begin to look at new treatment protocols.  We are going to start looking into several possibilities with Jack's doctor.  One possibility is a new treatment the doctor is really excited about and is planning on beginning in April on other patients.  Perfect timing for us. 

It's hard to hear this as he has had such wonderful response up until now but we know that this is going to continue to be a fight.

We are so appreciative of everyone's messages and prayers. We can't thank you enough. I updated some prayer requests if you are so inclined.

Many of you have asked how I am doing and my response is really well, and a bit tired. I have so much support driving the girls, phone calls, dinners. We feel so blessed.

Tuesday, January 20, 2010

Another clinic visit at UCSF today, and began my 8th round of week-long chemo treatment. It's getting more difficult to take it due to nausea, but I am working through it. Next scans andcheck-up are around third week of Feb. Should havemore news withthose results then. Three month follow-up to Stanford Neurosurgery coming up in March. Please keep praying. Thank You.

Tuesday, December 22, 2009

I had my every-4-week appointment at UCSF today, which included the follow up report to last weeks CT scan andbrain MRI. I begin round seven of treatment for the next seven days.

We got more good news today. I continue to respond remarkably to the treatment. Tumors are shrinking measurably and I have no negative side-effects that we can tell. The best part was hearing my doctor say for the first time that I just might be in that very small percentage group of patients that have a chance to beat this. I've been telling him that since day one...     We all know that my not-so-secret weapon is a thousand people praying for me. Thank you!

Wednesday, December 16, 2009 - Update from Jack

Today I had my 3-monthfollow up for my second (and hopefully the last necessary) CyberKnife surgery at Stanford. We were overjoyed when my neuro-surgeon came in and told us that the tumor had been pretty much obliterated: It was completely gone.Thank You God! And thanks to my amazing doctors, Dr. Chang and Dr. Soltys, you are my heros. I will be back at UCSF next Tuesday andwill learn the results of last Tuesdays CT scans. Praying for more good news, of course. I will start round 7 of treatment then as well. I have an amazing team of doctors and staff at UCSF as well. Your prayers and support are helping to strengthen me every day, thank you!

Thursday, November 26, 2009 - Update from the Aknins

Jack is now on round six. He started Tuesday and will be on treatment for a week. He did not have scans this time so we have no new news as far as tumors shrinking. His next scans are mid- December along with his next appointment at Stanford with the brain surgeon. He then starts round seven on the 22nd on December. Somehow he has ended up on treatment during every vacation, weekend away and holiday. Timing is everything! 

Some good news~ we were all able to get the H1N1 vaccine within one day of one another. That was an answer to prayer and not an easy accomplishment. It was important to Jack's doctor that we make it happen so we are grateful! 

Next week is Nutcracker which as many of you know, is a huge part of our December lives. We are praying that Jack will feel well and be able to come, work backstage and have a wonderful weekend watching his girls enjoy their passion.

We hope everyone has a wonderful Thanksgiving. Give lots of hugs to your family and friends!

Friday, November 13, 2009 - Update from Barbie

Hello dear friends and family,

We are hearing from some of you that there are no updates on Jack. This is my fault. It's Nutcracker season and as many of you know, it takes over our life and I start falling behind on life.

Jack had his Chemo - Round 5 several weeks ago and is doing well. His last scans and reports showed that the tumors are still shrinking and his body is still responding to treatment. The tumors continue to shrink and there have been no new tumors.

He is definitely feeling the effects of Chemo, primarily fatigue. The couch is a friend these days but we are grateful, that at this point, this is the only side affect.

Your messages are such an encouragement. Thank you for you notes to us throughout the weeks.

Friday, October 16, 2009 - Update From Barbie

Jack is doing well after treatment although he is feeling the affects of chemo which is fatigue. We just got the report from his last scans "lesion in pancreatic tail is no longer seen, 2cm lesion in lower left kidney no longer seen, gallbladder lesion has decreased to 1cm." The four page report was full of good news but, we are not anywhere through this fight. 

Tuesday, September 29, 2009 - Update From Barbie

Jack began his fourth round of chemo today which is another 7-day regimen, followed by three weeks off. Fortunately, we got some more good news at our UCSF visit. After reviewing the latest scans, taken Sept 22, It appears that there is further regression, (shrinkage of tumors). He continues to respond to the chemotherapy. We will find out the exact results in a week or so and post the update. Jack will have to get his flu shots and be a little more careful as flu season begins.  He will increasingly be susceptible to illness as the treatment continues. Please check the prayer request for updates if you so choose.

And, thank you for all of your support! Your messages via email, and through the website, are a HUGE blessing, along with the random calls offering to drive the girls, bring meals and etc.. Knowing we are surrounded by a huge community of friends and family is truly giving us strength to continue the fight.

Thursday, September 17, 2009 - Update From Jack 
 
I had another CyberKnife surgery today at Stanford to eradicate a small brain tumor discovered recently. My doctors feel that we should have100% success (well they only give it 99% but...). Being that the tumors treated last time have not only died, but are are gone, we are hopeful for the same results! I will have a follow up MRI on three months to check the results of this surgery. I am so fortunate to have a team of doctors who are the best of the best, and the most cutting-edge technology being used to treat me.

This coming Tuesday I go back to UCSF for a new set of CT scans & MRI's which will be the new baseline for my next round (#4) of treatment (chemo+) which will begin on Sept. 29. I have had excellent results so far andam hopeful that I will continue to improve with continuing treatments (I guess that is somewhat of an understatement).

Thank you all for staying in touch, sending me your encouraging emails and cards, and simply just praying for my healing and recovery. You should know how much you are helping me and my family cope with this.

September 14, 2009 - Update from Barbie

WE GOT THE OK! Jack will be allowed to stay in the clinical trial and have the Cyberknife procedure. This is the most wonderful news!  

We heard from the trial coordinator Friday at 4:00. She wanted to let us know before she left work Friday so that we would have a good weekend and we did!

Jack is scheduled for pre-op Tuesday 9/15 for a CT scan, MRI and his mask-fitting. He will have the Cyberknife procedure this Thursday at 12:30.

Watch the KTVU report to see Jack's two doctors discuss Cyberknife. 
http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/index.html

 

September 9, 2009 - Update from Jack

I had my 3-monthbrain radiation surgery follow-up visit with my Neuro-Surgeon at Stanford today. The two tumors that were treated May 29, have not only shrunk, but are UNDETECTABLE!  Usually they might only shrink to maybe half size or so by this time, and there is no swelling or other symptoms as could have happened. PRAISE GOD!

However, another tumor recently discovered on a more recent MRI that was undetectable at that time, either microscopic, or not yet existent will need to be treated now. It is much smaller (pea-size) than the others were and the doctors are confident that I will have a positive response to another radiation treatment to eradicate it. It should be scheduled by next week.

A Complication:
However, the introduction to another form of treatment (radiation) simultaneously while in a clinical trial is typically prohibited by the protocol. This means that without an exception made by the sponsor, they will not allow me to continue the trial. This would be very disheartening to say that least, being that it is working and working so well! I could continue with straight chemo alone, with no trial drug, but my doctor feels that there is a high probability that it is the combo that is making it work so well, based on his observations of lesser or slower response with chemo only in his previous patients.

My Oncologist, has gone to bat for me with the Clinical Trial Doctor to persuade him to allow my exception. He said he would need a day or two to review and consider his decision, so it's 50-50 right now.

      FOR IMPORTANT TIME-SENSITIVE PRAYER REQUESTS, CLICK HERE

September 1, 2009 - Update from Barbie
"Good news and bad news"

Jack and I met with the doctor today to review his scans and begin his third treatment. There was very good news and bad news (Or at least a set back.)

The good newsis that Jack's tumors in his body from the neck down have decreased by 55.2%. We were thrilled and so was the doctor. This is very good news.  He is responding to treatment. Additionally, there were NO new tumors. One new tumor would mean that the cancer was growing and we would have to abandon the treatment and try something else.

Also, the two tumors that had been treated in Jack's brain are shrinking. This means the treatment worked on his brain and the tumors are dying.

The bad news is that a "new" tumor in his brain was found and is growing along with a few possible new and smaller tumors. This is a tumor that we were unaware of that started outside the brain between the brain and skull. The tumor has now penetrated the white matter of the brain and has grown quite a bit. This was really upsetting to discover. And confusing. As it shows up on the original MRI, we are not sure why it was not treated and why the surgeon did not tell us it existed. 

The issues are: 

• For cancer treatment, the brain is completely separate and responds differently to drugs than the body. The chemo that Jack is taking does travel to the brain but is apparently not as effective in the brain.
• To continue on the clinical trial, Jack is not allowed to be on other treatments. The doctor will be contacting the drug company hosting the trial and ask that they make an exception because the brain is separate and because Jack is responding so well to treatment. The neurosurgery consult team meets at UCSF on Thursday andthe doc is going to present Jack's case to get the best treatment plan for his brain. Also, we meet with the surgeon at Stanford next Wednesday for Jack's brain treatment post-op and we will be able to get to the bottom of this and find out why this tumor was not treated. 
  
  Jack, in the meantime started his third round of chemo today. We are going with friends to Lake Shasta for Labor Day. The doctor suggested that I drive and Jack then requested a prescription for valium!!
  
  For those of you that pray, please see our new list of prayer requests.
  
  And for everyone, thank you for your continued support. This is going to be a long journey and we are experiencing the ups and downs. We could not do this alone!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

• August 14, 2009 - Update from Barbie
  
  Jack's had his appointment today at UCSF and his tumors are shrinking; or at least the ones we can see! There are many internal tumors but many of the visible ones are noticeably smaller. That is great news.
   Also, our trip to Oregon was perfect. Jack felt quite good and we enjoyed several fantastic Portland restaurants, a fantastic hotel and lots of sleep. We were able to see Margot's dance class at Oregon Ballet which was a thrill and very impressive. We also spent some time with the wonderful family that Margot has been living with for the last 5 months. Jack's fever subsided and while he was on chemo, he had very mild nausea and was able to get plenty of rest. Thank you all for your prayers and good wishes.
   
• August 4, 2009 - Update from Barbie
  
  Jack's blood counts looked very good yesterday so Jack is back on treatment. We had a good meeting with the NP and with a cancer nutritionist. We fly to Oregon on Thursday, August 5th to pick up Margot from five weeks of ballet. We are hoping to have a few nice days together enjoying Portland.  For those of you that are praying for us, we have some new requests on the "prayer request" page.  Jack will most likely be tired and nauseous, so we'd like you to pray for that and his continued health as we are going to be on a plane and in public places.
   
  Thank you all for your love and support!
   
• July 28, 2009 - Update from Jack
  I went to UCSFfor my Tuesday visit withthe expectation of starting my second round of week-long treatment. However, my "labs" today showed that certain counts were lower than ideal for treatment, so I will have to wait a week to start again. At that time the doctor feels things should be back to "normal" andsafe to start the next round of chemo. It will be one week on, three weeks off, then a series of scans to check results. We should have an indication at that time if and how well the treatments are working. Thank you for your love and support, and especially for your prayers.
  
  
• July 9, 2009 - Update from Barbie
  Jack finished his first roundof medication on Monday. We had a good visit withthe doctor Tuesday am.  The pill form of chemo that Jack is taking is so strong that he was instructed not to touch it with his hands and if he did touch it, not touch anyone who is pregnant or thinking about it due to absorbtion.. 
  So, now we wait three weeks, then start the second round for a week, then wait three weeks. After that, Jack will undergo another series of scans to determine the effect of the treatment, and we'll go from there. 
  
  He has been very tired and a bit queezybut this should get better in the next few weeks until his next round of drugs.
  
  Because Jack is in a clinical trial, he is having advanced blood work done every week. Next Tuesday, we will be going over the results to better understand what is happening to his body.
  
  Jack is looking forward to playing his guitar at Silver Creek for the Jazz& Wine by the Lake event this Sunday. It is the best medicine for him. He will also be playing with his band (Jack Raymond Group) at the fundraiser that my dear friends from Los GatosBallet are planning.  Jack is excited to perform to sort of give back something for all of the generous people that have surrounded us throughout this journey.
  
  
• July 3, 2009 - Update from Barbie
  
  Jack started his treatment on Tuesday at UCSF. We were there for about 8 hours.  

  Last Friday, Jack was at the hospital for hours as well. One of his tests was a blood test that was packed on dry ice to be flown to LA. Well, Quest never picked it up and it was still at the hospital on Monday. We got a call saying that Jack would not be able to start treatment. After much pleading, the clinical trial coordinator decided to call the drug sponsor and ask if UCSF could do the test so that we would not have to wait AGAIN. 

  They agreed to it and Jack was able to begin. It's funny to think about what can make you happy! One thing we are learning is that being a part of a clinical trial has its perks. Everything must follow strict protocol, so our coordinator, Emily, gave us a three-month calendar with all of our appointments booked. That's a first! Emily meets us at the door. Walks us to appointments, and is very sweet. 

  Jack also had a three-hour blood test after taking his first dose of chemo. Again, part of a clinical trial, he is getting intense monitoring to make sure all is well. All this to say, he is being very well cared for. I also have to mention ~ every time that we havebeen at the hospital on a long, strenuous day, Jack checks his emails or seems to get calls. On Tuesday, right after a blood test, he got a call from his best friend(not sure what men say) Harmon, who lives in Kenya. He then got a call from another friend, Ed Silvoso, and an email from an instructor at the ballet studio that really touched him. These are so encouraging and always come at the right time.

  He is feeling pretty good and has gone to work as much as possible. He has been feeling tired but not nauseous.

  Thank you all for your support and care~

  Barbie

• June 26, 2009 - Update from Barbie
  
  Thank you everyone for all of your messages to Jack and me. They are so encouraging and needed after a day at the hospital. 
  
  
  As Jack mention on the 22nd, the doctor was concerned about the side affects of the treatment (IL2) on Jack's brain.   Jack's last MRI shows that the tumors appear to be shrinking so that is good news!  Once his brain "calms down" andthe tumors shrink, we will proceed withthe IL2 treatment if needed. In the meantime, Jack has signed on to a clinical trial. It tests the efficacy of a new drug in combination with a FDA approved form of chemo called Temozolomide.
  
  
  This is a blind study meaning we will not know whether Jack is receiving the trial drug or just the chemo drug. The doctor felt that this would be a good study for Jack as the chemo drug (which everyone receives) is one of the few drugs that passes through to the brain. 
  
  
  We will spend the day at the hospital Friday, 26th and then begin treatment on the following Tuesday. Jack has had to go through lots of testing and he is tired but ready to start. One good thing about the trial is the amount of rigorous testing "insures" that you are being closely watched. If we see no reduction in the tumors, we will move on to the next plan. 
  
  
  We also have met, by phone, the Chairman of the Melanoma Research Foundation, Randy Lomax. www.melanoma.org  A friend of ours met him at an event andsent us his number. He also happens to live in Los Altos, so we will be meeting him soon for coffee. We believe God orchestrated this introduction! He has been very helpful and full of advice.
  
  
  Melanoma is one of the toughest cancers to treat as everyone seems to respond randomly to treatment. Randy strongly suggested that we get several treatments lined up so that if Jack doesn't respond to one, the next appointment is on the books. That being said, we are planning on visiting Lynn M. Schuchter, MD , Professor of Medicine, AbramsonCancer Center, University of Pennsylvania. Our Doctor agreed with this decision. Dr. Schuchter is one of the top Melanoma specialists in the country and will be able to help us make choices for Jack's treatment. As our doctor said, there are may exciting treatments and research trials for Melanoma right now. We just haveto find the one that Jack's body responds to!
  
  
  Lastly, we had a long, two-hour meeting with the doctor this past Weds.  We showed him pictures of our girls and made it clear that Jack wants to fight and do whatever it takes to be cancer free. We felt that he "got what we were saying" and is committed to really working with us. 
  
  
  A big hug to everyone for your love and support,
  Barbie
  
  
• June 22, 2009 - Update from Jack
  
  The Oncologist at UCSF called Friday to say that he felt that the Interleukin-2 treatment could cause swelling andpossibly jeopardize what progress has been made with the Cyberknife treatment of the brain lesions. He is now recommending a Chemotherapy treatment involving a clinical trial of a new drug as well, as a starting point and possibly IL-2 later. Barbie and I will be be going up to UCSFTuesday to meet with him to discuss my recent scans, test results, and treatment. A decision will be made as I am anxious to start fighting this NOW.
  Specific prayer needs would be that I get the correct and only the BEST prescription for treatment, any other options we should choose are presented and chosen (or not). And of course, that the treatment(s) will work for me!  Also that any other successfully proven treatments, be them at UCSF or elsewhere, are brought forth and we would have clarity as to what to do.
  I hope to have another update Tuesday evening.
  Thanks and God Bless,
  -Jack
• June 17, 2009 - Update from Jack
  
  I will havecompleted all the latest battery of tests by tomorrow afternoon. I am hoping that I pass both the Pulmonary ( done yesterday, looks good ) and the Cardiostress test tomorrow, which will enable me to proceed with the Interleukin 2 treatments. I am scheduled to see the doctors on Thursday, June 25th to go over tests, and etc. If all goes according to plan, I will be admitted to the ICU at UCSF on Monday, June 29thfor the first 5-day round of treatment. 
  Most of all, we should continue to pray that God's will and perfect timing are in motion. We should also be praying that, by His grace and intervention, the treatments WILL WORK and make my body kill ALL of the cancer cells and eradicate ALL of the tumors. We should also pray that the IL2 treatment will be durable and keep the cancer from returning. Ask and Ye shall receive, right?  Thanks for your prayers.
• June 11, 2009 - Update from Jack
  I finally met with the doctors at UCSF today anddiscussed treatment options withthem. I am left with the difficult task of choosing which one.
  
  
  I'm  leaning towards treatment (IL2) that would require my hospitalization a week at a time with two weeks out, repeated in cycles as such. It has a better track record for my condition than chemo.
  I will have to get another PET and MRI to get up to date info for UCSF, as well as undergo some cardio and pulmonary stress tests to insure that I can handle the IL2 regimen. I plan on "passing". Depending on scheduling etc. I could be admitted within two weeks, I am guessing.
  I'm ready to kick this into high gear. Thank God He's driving.
• June 3, 2009 - Update from Jack
  OK...We are in what feels like a scavenger hunt to find and collect my records, image CD's, films, etc. from Stanford. We haveto collect them in order to send them up to UCSF so that I can get an appointment. It is frustrating to say the least. We are feeling led to pursue UCSF, andbarring some roadblock or sign that I should not, I will be going there for treatment. I want to start the "Ground War" and I am anxious from all the waiting, but trusting God that His timing is working.
  
  I have an appointment scheduled for June 11, but we are praying for a cancellation so that I can bee seen earlier.
  
  I want to thank everyone for their emails of encouragement and support, and that I read and try to answer every one of them. I actually look forward to checking emails now. I am so BLESSED!
  
  
• May 29, 2009 - Update from Jack
  The best news is that there were no additional lesions in my brain that showed up on the latest (pre-CyberKnife) MRI, PRAISE GOD!
  
  Everything went well with the CyberKnife procedure today, and I am doing fine.
  
  I knew everything was going to be OK when I walked into the radiation room and Antonio Carlos Jobim and Stan Getz were on the CD player doing "Girl From Ipanema". During the the 2 hour procedure I was mentally on the beach in Rio listening to Bossa Nova. Then it was over. I've had oil changes that took longer. We are praying that we get 100% success from the CyberKnife procedure.  The two tumors in my brain havenow been zapped by high intensity radiation.  We are praying that they completely evaporate.
  
  Part of the way through the second procedure, I began to tear up as I thought about the doctors and technicians in the other room and the amazing work that they do.  Especially for what they were doing for me at that moment. Even in the midst of this terrible storm I am in, I feel so blessed.
  
  
• May 27, 2009 - Update from Barbie
  Dear friends and family. Jack and I want to thank everyone for ALL of your wonderful e-mails. Our computer was down for several days. As we have spent many hours in the Stanford waiting rooms, Jack has been able to download them on his phone and read them all while waiting. It has brought him (and me) to tears many times. He needs this outpouring of love to keep him strong.
  
  There is a lot of information and prayer requests on this site. We are choosing to update everyone and let you see "the real us" because we covet your prayers and because cancer is a disease that needs to be fought, we need an army!
  
  Now that we have a new computer, we will try and keep the updates more consistent.
  
  Our friend Agatha Diepenbrock <agatha@storyfilms.net>  has offered to coordinate meals for us. Many of you have offered to bring us dinner. THANK YOU!!!  If you would like to be on the list, email Agatha. She will send out an email to those of you on the list when the need arises for meals. I will try and not abuse this luxury!
  
  
• May 25, 2009
  I will be at Stanford Medical Center on Tuesday for a high resolution MRI on my brain for planning the CyberKnife Procedure.  I will then havea Consultation with the radiological oncologist who is the other half of the team performing the CyberKnife Procedure scheduled for this Friday.
  
  On Wednesday morning I'll be back at Stanford for a CT Scan, mask fitting, and simulation of the CyberKnife Procedure. On Wednesday evening I will meet with my oncologist to discuss the overall treatment plan for the Melanoma.
  
  On Friday at noon I'll be back to Stanford for the CyberKnife Procedure to treat the tumors in my brain.  Then they tell me I'll be ready for lunch.
  
  
• May 19, 2009 - Update from Barbie
  Jack has two cancer spots in his brain. Both are small, less than 2c. There is a procedure that was developed at Stanford that Jack will most likely have done. I guess at this point, we would just pray that God is with us and the doctors.
  
  They have to treat the brain before (and separately) from the rest of the body. So, we should pray that the cancer does not grow or spread in the meantime. Also that the cancer in his brain responds to the treatment and that he heals quickly if surgery is involved.
  
  The oncologist is researching clinical trials and the best place for Jack to be treated. Most likely it will either be Stanford, UCSF or Angelesin L.A.  We will meet with the oncologist again in a week or so to determine where Jack will be going for treatment.
  
  
• May 15, 2009
  I will find out the results of the brain scan on Monday.