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Friday, July 18, 2014

Bronchitis, Biopsies, and Broadway

Greetings from Philly! On Monday I went in for CT scan because my cough had not let up. At our return visit on Tuesday the doctor explained that it appeared I had a viral infection that had developed into bronchitis. He prescribed an inhaler for when I have coughing fits. He then surprised me and said he wanted to do a bone marrow biopsy right then and there!

Kezman running down our street in Philly.
I wasn't planning on a biopsy but I have been very curious to know how/if the cancer has progressed since I am into my third week without any chemo treatments. I can honestly say I was excited for it - really? excited to have them drill into your hip, extract the marrow and then wrestle out a core of the bone - yes it sounds crazy but maybe I've just grown accustomed to the practice. Amanda and I estimate I've had nearly 20 bone marrow biopsies in the last 3 years and I have the scars on my back to prove it.

This was also a good sign because on Friday last week Doctor Porter said he didn't want to do a biopsy because they still weren't sure when the study would continue. At this appointment he explained that he worked out most of the kinks with the FDA on Monday and there is a very good chance the study will resume next week. If I can kick this bronchitis I may start chemo as early as next Wednesday. It's good to know that they are finally making some headway.


Getting ready for the show to start :)
With the possibility that this may be my last week before I start another debilitating round of chemotherapy and a life threatening treatment AJ and I decided to throw caution to the wind and took the train to New York City to see a play on Broadway. With wifi and cushy seats an 80 minute train ride goes pretty fast. Before we knew it we were standing in line to see the Newsies. Secret revealed; I've been waiting for a stage version of Newsies to show up somewhere since I was in high school. When I caught news that it came out on Broadway two years ago I was extremely excited but feared I may never get to see it. Well, you can mark that one off my list!

I ran into a couple old friends in NYC.
As if that wasn't enough my amazing and talented friend Jessie Davis took the train from Brooklyn and met us for dinner at the London. Her sister works there so the Gordon Ramsay menu prices didn't hit our pocketbook like they would have otherwise. Thanks for the discount Maggy your a sweetheart! We took a walk to central park and Jessie packed her ukelele along.

Trying to play ukelele with numb fingers...
Imagine this; a game of softball winds down across the walking path as you're seated on a park bench listening to a soulful private musical performance, your dream girl by your side, a back drop of the sun sets in shades of orange, purple, and pink behind the silhouette of the city as fire flies begin to sparkle in the grass at your feet.

That was my reality on Wednesday night and for a brief moment I forgot about hospitals and hand sanitizer, tests and treatments, pokes and pills, biopsies and bills, what saves and what kills and the fine line between them in the nightmare that calls itself cancer.

Sunday, July 13, 2014

First Week in Philly

Philadelphia has welcomed us with open arms! Not only do we have an affordable place to stay, the friends of the HEADstrong foundation have provided gift cards for groceries and toys for Kezman. Now if we could just get this treatment underway...

My Lucky Charm :)
We met with Doctor Porter on Friday. He explained that he is meeting with the FDA on Monday, and they are hopeful to get things started. He also listened to my lungs and used the adjectives, "Wheezy" and "Mucky". In hopes to avoid a repeat pneumonia he prescribed some serious antibiotics.

I still have neuropathy in my fingertips. It doesn't completely disable me from playing guitar, but any song that requires a high level of dexterity presents a formidable challenge. It's akin to trying to play guitar with gloves on. Even typing this blog entry is a little tricky - I can scarcely feel the keys and I have to trust my fingers know what they are doing.

Fierce Family
Kezman is definitely a "threenager" now. We are curious to know how much of his acting out is due to the huge change in our living circumstances and how much is typical behavior for a child his age.

Crabby Kezzy
It may sound a little scary or even crazy to participate in a treatment after 3 people just died from it. Keep in mind however nearly 100 other people have undergone this therapy successfully. The harsh reality is that if I don't do something the cancer will win. Although this protocol has its risks (as did my first two transplants) it is the best shot I have at a long term remission.

Wednesday, June 25, 2014

Trial Trials - More Delays

I've heard it said that, "If you fail to plan, you plan to fail." Although our plans for my treatment and recovery are in flux once again - I understand that this is all part of a greater plan. As you probably heard, the clinical trial in PA is on hold once again. They are making some adjustments to the protocol and we have postponed our flight plans for a week.

New Hair Cut :)

I was not pleased with this turn of events initially. Amanda being the scientifically minded of the two of us began to question the study and what risks it involves. My lament was that I had to endure another week of chemo-therapy. In the end I've decided that the Lord's will be done. I'm sure the delays/changes to the protocol are in my best interest.

Water Fight :)
As we entered the clinic on Monday I had one hope, 'please no more chemo'. Ultimately my wish came true because my doctors had planned I would be out of town and the chemo had not been ordered nor was it ready to administer - so I get a little break. It is now scheduled for Wednesday.

Family Outing :)
The scriptures tell us that, "Men are that they might have joy" (2nd Nephi 2:25). God's plan is a plan of happiness. I have been blessed with so many deeds of love and service, moments of elation and delight - roses among the thorns. I often feel my gratitude is waning.

I wish I could thank everyone individually, however these last words of gratitude are dedicated to Joy Gibb for her kind visit, and delicious summer treat.

This weekend Joy dropped by my door with sunshine in her hand. The smile of Summer streamed steadily into my heart. A kind smile, a cool treat, a moment of joy.

The young one wanted shoes then, and a walk outdoors. We wandered round the corner to check the day's mail. A visit from a parting friend brought a message of good tidings; something wonderful lies in my path - tears in my eyes - melancholy mixed with mirth. 

And I still need to thank Joy...

Later we celabrate with Birthday twins - the earth has circled once since their arrival. Porch swings and swimming pools, umbrella's in the shade. The back yard is beautiful and as I admire the fruit trees I think outloud, "Grandma Reese would be in Heaven with all these fancy fruit trees." Then it occurs to me that Grandma is in Heaven... Tears again, the thought of Grandma's fruit leather plants a seed of delight in my soul. 

And I still need to thank Joy...

The Lord's day brings several priests to my home. Carrying the emblems of the Lord's supper. We bless and brake, and I am renewed. A taste of redemption fills my breast, my eyes grow wet once more - solemn felicity.

And I still need to thank Joy... 

Friday, May 30, 2014

Fentanyl Fun

We have had a grueling last few days. Marshall's pain has been overbearing. His pain comes from the leukemia blasts taking over his body and inflaming his bones. Particularly in his ribs, back, joints, and connecting tissue. The blasts have now cause pleurisy. This is where they irritate the lining by his lungs so badly that the lubricant that is usually there against his lungs and body linings has dried up and it hurts him to breathe very badly as well. He has been on a ton of pain medications as a result around the clock and still is in so much pain. It is also very painful to see him right now in so much pain. It hurts him badly to stand and breathe because of the pressure it puts on his bones and joints where the blasts are taking over. The leukemia is so packed in his marrow that they could not get any bone marrow when they biopsied him today. He is supposed to have over 5 percent blasts for the study in PA at biopsy time and I think he dominated that requirement. Also his lumbar puncture came back clean! That was also another requirement for the study. That means the leukemia hasn't made it to his spinal fluid that they can detect.
Marshall's line is now in his arm instead of his chest. He begged them to put it in the left so he could still strum guitar with his right and then they allowed me to watch the whole surgery.

Getting pumped full of blood and platelets (his own body wouldn't survive without this- thank you blood and platelet donors!) before his Philly flight.


Ok, ok. Because Marshall has been super doped up on drugs I wanted to record some funny things he has said today. After his bone marrow biopsy he looked up at the cute little Asian lab worker and said, "Have I ever told you that I just love your big, beautiful smile." She looked at him like a deer in head lights. Then he said, "my wife and I have been discussing eternity" [we were!? Maybe 3 weeks ago!] "and I wondered what you you think happens after we die?" Imagine all these sentences slow and drawn out and the technician looking at him like, "did he really just ask me this...". Marshall then immediately falls asleep after asking such a loaded question. Our cute lab worker was stuck in the room organizing the various blood slides and cores to take to the lab for further examination and results. So she answered the question to me. She explained reincarnation and how she felt that we will go somewhere but we do not know where. And that if someone in this life is really nice to you even if you are rude over and over, they probably owed it to you from a previous life when you were nice to them in a similar way.
Marshall also made the comment after they got 3 pieces of bone out of his back that he is a good, well I won't include that but if you ask me I will tell you.  Then our awesome nurse Tony was gathering up Marshall's chemo later and suddenly Marshall says, "we can't leave Tony, he's making us cheese burgers". Tony gets a puzzled look on his face like, where did that come from."
Now tonight he is lying there in his half asleep phase telling me how he was used as a slide for all the children as they were getting off the airplane at the airport and many other absurd things.


The above was written the week of May 17. It's now May 30th and Marshall is on a plane on his way from Philadelphia back to Salt Lake City with his brother Barry (thank you Barry for taking over as caregiver for a couple days!) He signed the protocol for the CART-19 study. So he is officially in. He also has a cold that he probably caught from his son. Even after we sent Kez to Idaho last weekend on the last day the doctor told me he would be contagious. It was so good to be able to go to Jenson's blessing and take family pictures. Marshall was weak and had to sleep in between everything and be on a ton of pain meds. But I was glad he was there so thank you Marshall for enduring. He actually kinda used family pictures as an excuse for the hospital to let him out a little earlier than they probably planned.
Elina and Kezman


Grandma's birthday

We found out that the patient that died on the CART 19 study (the reason it was on hold when we went to PA the first time) had contracted the flu right before his new T-cells were introduced into his body and that may have contributed to his demise. So we kindly ask that if you have been feeling ill please avoid our family for the next 3 weeks before we go to Philadelphia for Marshall's treatment. We are so tired of avoiding people, heavy crowds, and family gatherings but we must continue doing so at this point. We've done this before so please don't hesitate to socialize with us by online means (facebook, facetime, this blog, instagram, etc.) because we have walked that lonely road before and before the before.
Ready to roll out of bed and hit the Philly hospital every day in a few weeks!


Wednesday, May 14, 2014

We Are Home! For Now...

We arrived home in Woods Cross Friday night without signing the CART-19 (chimeric antigen receptor T-cell) protocol. Right before we flew east to Pennsylvania a man had died from the treatment so the trial was on hold. We could feel the tension from the head research coordinator as we sat down in apheresis for Marshall's vein consultation. The room was freezing and the nurses checked and double checked Marshall's arms to determine if they would be able to collect what they needed. The first nurse needed a second opinion. We were becoming discouraged because the last time they tried to collect his blood in Salt Lake they had to poke him six times. This is not uncommon for patients who have been through so much. Marshall has had 2 stem cell transplants and he's had a central line twice, but each time he has relapsed his central line had already been removed months prior to the relapse, so he has been poked and prodded up the wazoo. And that was just for small blood collections, not a 3 hour T-cell collection. The issue was that because the actual trial was on hold, Marshall had to sign a different protocol. The original protocol would allow for a patient to get a temporary central line if they could not get into the patient's receded veins. Because he could not sign the correct protocol they had to use his arms only and did not have the option of the line in his chest.

Everyone's prayers and fasting must have worked because the next day it took one poke in one arm and one poke in one hand (on the right arm they collected and on the left hand they gave back what they didn't need after centrifuging out the T-cells) and 3 hours to get the T-cells they needed (even after he had been on hydrea since he relapsed)!
only one poke on each side! Hallelujah
the aparatus for apheresis
A super nurse in apheresis prayed out loud with us for quite a while and  it was so awesome! We were so grateful to have Marshall's mom there with us as well so we didn't have to do everything alone.

Felicia was so caring

These T-cells (top yellow line) are being reengineered with a virus to fight every cell in Marshall's body that has a certain receptor (CD19)

So now we are home waiting for the T-cells to be reengineered. It takes 3-4 weeks. In the meantime Marshall will be doing a new chemo to keep his leukemia from taking over and causing him too much pain. He may have to fly out once in that time to sign paperwork and there are a few more tests to be done to insure he is in the study now that it has opened again. We are looking for options to stay near the University of Pennsylvania hospital. Dr. Porter said to plan being in Pennsylvania for two months. We really would like to have our son with us because that was one of the hardest things for us last year in Houston having to leave him behind. But to make that work we will need another caregiver along our side for the times he is not allowed on certain floors or in certain places. We are so grateful for all that have reached out to help us again.

We received a beautiful portrait of the Savior that my Uncle Daryl painted. He wanted to depict Christ more with Jewish ancestry than the Scandanavian approach many artists take.

He painted it mostly on Sundays and it holds such a special and significant place in our hearts during this difficult time. The only way we will find the strength to fight the leukemia again and be separated from our support system again is to rely on His power, the sacred power of the atonement. Just as Elder Bednar discussed with us in our home, we will not find the ability within ourselves, but only from the enabling power of the atonement. My uncle who painted this is acquainted with his own griefs and sorrows and yet he gives constantly. There is one thing that can bring us all together. AT-ONE-MENT. Whether your trial be loss, grief, depression, temptations, addictions, abuse, disease, or any physical or spiritual limitation. If we but rely on each other and the Savior to heal, help, forgive, that is where we can all be one. Let Him in our hearts. He suffered so that we did not need to suffer as much. No matter the outcome of this trial, our hearts will be stronger because of Him. May heaven pour down it's blessings on your lives like it has on ours. 

Tuesday, May 6, 2014

Hope

Monday we arrived and settled down in the heart of Philadelphia. We are renting an old 3 story apartment that's just a few miles from the hospital. It's not quite "West Philadelphia" but that hasn't stopped me from singing the Fresh Prince theme song.

 

When she found out I was from out of town the nurse that drew my blood-work suggested I try a "wooder-ice" (water-ice). I had no idea what that was, but was pleasantly surprised to find it's a delicious fruity beverage. Imagine a snow cone and a slurpy had a baby - boom, you've got yourself a "wooder-ice"!

Our visit at the hospital instilled me with hope. The more we discussed the protocol with Dr. Porter the more I felt that this is the right place to be. Unlike the drug I was treated with at MD Anderson, the modified T-cells will multiply into an army of microscopic soldiers and continue to search and destroy any traces of cancer for months and possibly even years after my treatment.


I understand that this study has many risks and challenges. Although the outcome of my treatment is uncertain, my faith is not contingent upon outcomes. My hope is for a better world.

"Wherefore whoso believeth in God might with surety hope for a better world, yea, even a place at the the right hand of God, which hope cometh of faith, maketh an anchor to the souls of men, which would make them sure and steadfast, always abounding in good works being led to glorify God."

Friday, May 2, 2014

On the Front Lines Again

This is a post that both of us have been putting off and that we prayed would never have to make. Unfortunately the leukemia is back for a third time. There is something I must clarify though. I've heard some people comment saying, "well what is Marshall doing wrong for it to be back again?" The correct way to put it is that the cancer has never left. It just hides out and grows until it is detectable by human testing again. All we know is that this must be an extremely strong strain of leukemia because 1) Marshall's own immune system didn't fight it off 2) Neither did his first donor's immune system and 3) Neither did the second donor's immune system. We are still so very grateful to his donors however because they at least kept the cancer at bay so Marshall could be alive for these past 2 years. Had he not received the transplants, he would not have seen his son turn 2, so we are blessed!

We knew Marshall's leukemia had returned when he started having night sweats. Even after hearing the PA say that it possibly could be an infection causing his white blood count to go so high, we knew. We had heard the exact same thing when he was diagnosed in 2012. Thirty percent of the the white blood cells in his blood were his cancer. That does not sound very high, but it's important to remember that before the blasts travel to his blood they have to fill up his bone marrow first. We have not done a bone marrow biopsy yet because it really does not matter what percentage the blasts are at in his bone marrow, it just matters that it is there growing rapidly and crowding out any more room for normal, healthy blood cells to thrive in his body.

One morning we were reading about a study in New York involving T-cells and HIV. We were about to meet with our coordinator and we were almost sure she would say you have no options after 2 stem cell transplants. She had already told us that Marshall was considered a "fail" on the blinatumomab study. The amazing thing is that the 26 page protocol she handed to us was the very study we had been reading about only it is being done in Pennsylvania. She said the staff there has been interested in the research, they had just never had anyone survive 2 relapses and transplants. We thought it was a good sign that what we had been reading about that very morning is what they suggested.

So here we are with plans to fly to PA in a couple days and Marshall will undergo days of testing to see if he can do another trial. It's very risky. Marshall has to sign permission for autopsy results if he gets in. There are numerous other things that could happen. Marshall is a warrior though and he would rather die trying than just die. We will be missing my brother Karl that I have not seen in 2 years coming home from Japan and we will be putting off any plans for in vitro (we were awarded one cycle after applying for a grant) for now. We pray again that this will be the cure but if not we hope to at least give Marshall more time with his son and maybe even a chance to have another child. When Marshall and I were dating I asked what he wanted to be when he grew up and I was surprised by his answer, "a dad".  We really don't want to be on this life and death roller coaster any more and we are so sorry to our family and friends that have been forced to ride along with us. We love you all and are so shocked at how many are coming together to support us again for yet another battle. We love you