Continuing on....

January 2016

We noticed a few time over the Christmas Break that Zach didn't seem to have as much energy, and was taking frequent naps.  This is his tell tell sign that something is not quite right.  We had Zach's  3 month post Car-T appointment the 4th of January.  This is where they did all the extensive labs, and and bone marrow aspirate.  When they sent us from Clinic downstairs for his Aspirate we still did not have any of Zach's labs back.  It had only been since the 19th of December since he had been to Clinic and had labs drawn, but in my heart the fear was back.  The nurse found me in the waiting room, and gave me Zach's labs.  As soon as I saw them my eyes filled up with tears, all of his counts had dropped, significantly the platelets.  The nurse gave me words of encouragement, letting me know that many things could cause the drop in counts.  I felt like it was deja vu I had had this same conversation 6 months earlier with a different nurse the last time that Zach had relapsed.  She filled me with kind words, and I held out hope but I knew.  Three days later it was confirmed.  Zach had lost his Car-T cells and the therapy had not been successful in achieving long term remission for Zach.  They told me that within the next few weeks Zach would have to under go his 2nd Bone Marrow transplant, and that they would use our 7year old Navy as his donor.  We felt so blessed to have two siblings that were complete matches for Zach.  It made fast tracking this transplant possible.  There has to be under a certain amount of MRD(Minimal Residual Disease) for you to qualify to have a transplant.  Zach was still under this number, and with every passing day there was the possibility that he would go over this number and then the transplant would have to be delayed.

Jeff was out of town when we got the call.  So that night Zach and I faced timed Jeff and we told him that he had to have another Transplant.  He didn't even cry.  He is so strong.  He said "I can do it"  He was bummed that again he would be leaving school 3 days after retruning back at school after almost two years. He is always an example to me of strength and goodness. 

The next week they began the work-up on Navy, and started all of Zach's Pre transplant testing.  It felt like a dream...We couldn't possibly be doing this again, his body has already been through so much....but as a parent you can't not do anything and everything that you can for your child....We love him so much and are full of hope and faith that this will be the treatment that is the final chapter of Zach's battle with Cancer.  We all have grown, have more compassion, and have been blessed by so many.  We have felt the love of our Savior through peace and love.  We know there is a plan, and we continue with a prayer in our hearts that the plan includes our Zach with a healthy, long and fulfilling life.

January 22nd

Today we left on a cruise!  We had spent the last week trying to get everything done for transplant between Zach and Navy, and I had talked the Dr.'s into letting us Take Zach on a cruise.  It was Zach's make-a-wish to go on a cruise, and he relapsed 9 days before we were supposed to leave, and he hasn't been given medical clearance to leave since then.  We talked about the cons, what could happen, how we should be prepared etc. They agreed with me, that it would be good for his spirit for him to be able to fly for the first time, and go on a cruise.  None of us wanted to look back in the future and say..."he should have gone on that cruise."  So 5 days before we left, I booked a cruise for James and Zach to come with Jeff  and his brothers, and some friends.  And it was AWESOME!  We had the best time, Zach felt good the whole time, it was amazing!  We flew to FT. Lauderdale then got on a boat and sailed to the Western Caribbean.  We saw Grand Cayman, Honduras, and Cozumel.  We were supposed to go to the Bahamas, but a storm came in. We ate food of course, played basketball, shuffleboard, played in the pools, hot tubbed, ate more food, played in the sand, snorkeled, fed the fish, and enjoyed each other!

February 1st

We had just returned from our cruise, and were happy to be home to see the little kids, Aubri and Liv. Grandma Ruthie and Papa Steed had been holding down the fort while we were gone.  We are so grateful to have such good supportive grandparents, that have done more over the last few years then any should have to do, but we feel so blessed that they are willing and that they live so close to us.  My kids love them!

We spent the day up at Primary's doing all the last minute transplant prep.  We met with the different departments, and found out the our insurance company had denied our 2nd attempt to get them to pay for the transplant.  We are continuing on in faith that all will work out. We are going to work out a single case agreement with the hospital, But we don't have anything on paper or signed and we go into the hospital tomorrow.  Jeff and I remind ourselves that it is just money, and how we have had so many people, schools, foundations, teams be super generous to our family in the past that has helped us pay for the last transplant, which we are still working on paying for, but have been given the blessing of being able to pay over time. As a parent, it doesn't matter when it comes to the well being of your child, you just do it and know that everything we have come from on high and we are just stewards of these "things" we have here on earth.  All of Zach's labs looked good, he is going into this transplant strong and ready to fight.

February 2nd-February 7th

Zach has been doing intense Chemotherapy this week.  It is the Chemo that kills all of the bone marrow and makes it so that his body will be so hungry for the new marrow that it will start to accept it then reproduce it on his own.  This is called engraftment, and that is when the body starts to reproduce it and his numbers(white blood cell and neutrophil) will start to rise.  He has done so well with the chemo, I have wondered why were are even in the hospital for this part of the transplant.  He has come into this transplant much healthier than last transplant.  He had to have full body radiation for a week last time, and that really took it out of him.  He is on a reduced intensidy regimen this time.    He did not do radiation , because his body could not handle it.  His organs are still recovering from Car-T, and everything else.  He is happy and his spirits are good.  He has had lots of visitors and we got a little basketball hoop in our room, and we play a fair amount of pig and horse. He is awesome!

January 8th

Transplant day!  We had to have Navy up at the hospital by 6:00, and she was scheduled for surgery to start at 7:30.  She was awesome, she was brave, and left us at the door and walked down the hall with the Dr. and didn't even cry or look back.  We were join with her in post op about 2.5 hours later. They were able harvest 1.5 cups of good marrow. We were thrilled.  She was groggy and a little bugged she woke up. We are so proud of her and her sacrifice.  Then we headed up to Zach's room to hang out while the cells were being configured for transplant.  Then all of our kids came up with my parents and we had ourselves a party.  Kids under the age of 12 are not allowed in the hospital right now because of RSV season.  SO my two little kids have not been able to come up and see Zach, but they made an exception on transplant day.  It was so fun to have our whole family together for a few hours.  The hospital staff is so cute, they come in and sing him happy bone marrow birthday songs, and give both Navy and Zach gifts, they were super generous and we rounded it out with a little Pizza! It is amazing how easy the transplant is for Zach, literally they hook the cells up to his central line and over the next couple of hours we watch as the marrow drips into his body.  We played games and chatted while he was receiving his transplant.  It is crazy how it all works.  Over the next few weeks the marrow finds its way, and then starts to reproduce.  We are full of hope! We pray for miracles, and believe that he can be healed, this is it!!

February 8th-20th

It seems that after transplant day, everything seemed to be going a lot like last transplant. For a few days post transplant Zach did fine, he could eat, laugh, interact.  We had a lot of people come and visit. Then he started developing a bad case of mouth sores, that extended from his stomach up his esophagus and into his mouth.  It made eating very painful, and the consistent throwing up unbearable so they started him on a constant Morphine drip, and then hooked him up to TPN and Lipids.  Which is intravenous food. Zach went into a state of sleep and semi consciousness.  He was on so many medications, that it put him into a state of delirium.  I sit or lay in his bed with him, watch the monitors, pray and stroke his balding head.  The best day of the week is Sunday's where Dad and brother and Sisters come and stay for the whole day.  We eat food, watch movies, and cram ourselves into this small room.

February 14th

We spent most of the day with our kids hanging out in our room watching movies.  Grandma and Grandpa Steed came to visit and we sat around and talked.  Enjoying our day to have lots of family around.  Zach was not feeling well, but smiled, talked a bit and paced with what was happening in the room.  Around 8 pm I noticed that his breathing seemed to be really labored, I asked the nurse and she was concerned and called the on call NP.  Within an hour Zac had a fever of 104 and his labored breathing and become more intense.  Immediately they called a respiratory therapist, and they came up and put him on C-pap.  The decided that he should be taken down to the ICU.  Around 11:00 we ended up down in the PICU, in the same room that we had been in for Car-T.  The Doctors and nurses were fast and wonderful, working their magic to make him as comfortable as they could.  The ordered a Chest X-Ray and determined that his left lung had collapsed, and that he had double lung pneumonia.  His continued to fever all through the next few days with fevers reaching 106.  Medicine failed to bring them down to any lower that 102.  He was very sick.  They knew that other things were wrong, they took a ultrasound of his organs.  His kidneys were not working right, his liver was not working at all, he was Jaundice, and his lungs were failing.  It made for a long few days and nights.  They were finally able to come to the conclusion that Zach had VOD.  Which is a disease of the Liver, and they thought treating this along with the Engraftment syndrome would help him start to turn a corner.  It was true once they started him on the medication, he started to do so much better.  The fevers broke, he was able to come off of the C-Pap, and he started to come out of his state of unconsciousness.  We give thanks to our Father in Heaven for continued miracles.

Zach's Journey Continues......

August 2015

We had the best summer, filled with lost of fun, friends, traveling.  Zach had come off restriction in April, and was able to go out and about, and we did.  The entire Johansen Family spent 12 day up in Canada at the farm.  We hiked, swam, saunaed, tubed, ate Canadian chocolate, rode 4-wheelers, played baseball, played night games, laughed, soaked in a hot spring, and camped in the backyard.  It was perfect!  The last couple days we were there I started noticing a few things that heightened my attention. He started to complain that his shoulder and leg were aching.  I asked him if it was bone pain or just a pulled muscle, and a leg ache?  He thought it wasn't bone pain.  The pain lasted and he asked me for medicine....Now I worried.  During these last couple days he fell asleep during the day. I justified in my mind, we had been hiking mountains, of course he is extra tired.  On the drive home from Canada,  I asked Jeff.. "Do you think it's back?" We talked ourselves out of the possibility with the comment..."he is doing so well, it can't be." Zach had his one year post transplant appointment the  day after we arrived home from Canada.....

One Year Post transplant appointment

We were hoping this was his last walk into the RTU for a bone marrow aspirate for a long time.

August 17th

The one year post transplant appointment was to happen over a couple of days. They do a hearing test, a pulmonary test, EKG, Bone Marrow aspirate, and other tests. We had a few tests including the pulmonary test before we went into clinic and met with the nurses and Doctors. He didn't pass the pulmonary test that he had previously passed.  I was talking with the BMT nurse, and told her the few things that I had noticed about Zach over the last week.  She said he could be coming down with something and not to worry, he was doing so well.  We didn't even meet with a doctor, or have any of his lab results before they sent us down stairs for his bone marrow aspirate.  I was sitting there in the waiting room waiting for Zach to finish up, When the BMT nurse came and sat down next to me, and told me that Zach's Platelets had dropped into the 70's.  She told me not to worry, she was going to have the results of the Aspirate rushed, so we could have answers in the next few days.  They didn't need a few days.  Our Doctor called us the next day, and asked us to come in.  I told them, I knew when you asked us to come in, it was bad news and I wanted him to tell me now. He said that they had looked at his marrow under a microscope and had been able to see visible Leukemia and didn't need the results of the aspirate to confirm that indeed the Leukemia was back.  I walked out side... and the crying began.  I don't know if I can put into words the emotion I felt. Complete sorrow and my heart literally ached.  I curled up in the fetal position on the lawn and listen to the doctor for the next 30 minutes about our options for Zach.  He said he could have another Bone Marrow transplant, or we could try this experimental Car-T-Cell Therapy, which was new to Primary Children's and across the United States. He explained the pros and cons to each, I listened and cried.  I told him I need him to talk with my husband too, I got off the phone and called Jeff.....we cried together......I kept saying....."How are we going to tell him."  Jeff said he was coming home, and in the meantime I called my mom, and she and my sister came over.  We cried.

When Jeff got home, we called back our doctor and had a detailed conversation about our options and everything that would happen with Car-T-Cell.  We prayed about what we should do, and decided that we should go forward with the T-cell therapy.  Zach has been running around, playing, and swimming with his friends.  That afternoon we took him into our room, and told him that the cancer was back. He Cried. We all Cried. We explained about this new experimental therapy and what it could do for him. It would take the T-cells out of his body and be sent away to a lab where they would be injected into viruses and trained to fight and kill part of his B-cell that didn't recognize that cancer is a bad thing.  The only major long term side affect would he that he will no longer would be able to make and produce his own andi-bodies, which will require that he has a monthly shot for the rest of his life. We talked about all the good and positive things, that were different then having a bone marrow transplant, and the positive things about the hospital.  He said that he likes when his brothers, sisters, and friends come and visit.  He likes playing lots of card games, and the board game Sorry. In his traditional silent bravery he wiped his tears, we hugged and prayed.

 Hanging out with his buddies on the last day of summer....the day we found out he had relapsed.

August 19th

The first day of 5th grade....So we gave Zach the choice if he wanted to attend school on the first day, since he wouldn't be able to continue for the school year.  He decided to go, and rode off that morning with his buddies on there bikes.  I had gone in the day before and talked with his teacher about what was happening.  She is darling, and has been great with him, even becoming his home hospital teacher. 

August 20th

Zach entered the hospital for the harvesting of his T-cells.  They first put a line into his chest that would allow all the blood to flow out of his body into a machine that would spin out and collect all of the T-cells.  His whole blood supply was circulated through the machine 4 times over about 6 hours. 

September 3rd-8th

Our family had been scheduled to leave this weekend to go on Zach's Make a Wish cruise to the Caribbean. We consulted closely with his doctors, and decided that because his numbers had decreased, and the fact that we were going to be in the middle of the ocean, it was not the right time for his make a wish.  He was sad and felt like it was his fault that we were not able to go.  I told him it was because of him that we were able to go, and he smiled, and said we can go later.

We decided that we were going to head down south in lu of the Caribbean, to a place almost as awesome, Tahiti Village, in Vegas.  Ryan and Skye came with us, to make the party complete in Zach's eyes.  He loves his cousins Jace and Maguire, and they have the best time playing together. Zach was feeling great despite the chemo and low numbers, so we played and swam hard.

September 10th

Zach had been able to attend school here and there in-between chemo, doctors appointments, and blood draws.  On Sept. 9th is ANC (immune system) dropped below 500, which meant he could no longer be out in public.  So I email Zach's teacher and asked if I could bring in some pizza for the class that afternoon, so he could say his good bye's with a Party.  She was so accommodating, and we had a good time eating pizza, telling jokes, and I answered the kids questions about Cancer and what was happening to Zach.

September 11th

We are so blessed to have and amazing photographer in our family and willing to go on a drive to make beautiful family pictures happen, we wanted to get some good shots before he started not feeling as well. And she did get some goodies.

September 25th-October 1st

Entered the hospital for 5 days of chemotherapy, then two days of rest followed by the T-Cell infusion.  Zach for the most part has been super healthy during the past month of Chemo, and in the hospital, Chemo hardly slowed him down.  Luckily lots of family and friends came to see and visit him this week, because besides some nausea, and tiredness, he was ready to play and have as much fun as possible in a hospital room.  For a few of those day his numbers were good enough that they let him go down to the playroom in the hospital.  

October 2nd

T-cell infusion day is here.  He was feeling great, and we were super excited because dad had been out of town all week, and was finally back home.  He showed up in the wee hours of the morning to surprise Zach, it was sweet to see the smile that spread across his face when he realized his dad was in the room. All of the kiddos and Grandma Ruthie came for the infusion....it was rather anti climatic.  They brought in this machine, unfroze the T-cells, and had the doctor push the cells though his central line in his chest.  And then we had a little party with bad food, and started the waiting process.  They told us it would be anywhere from 3-11 days before we started noticing anything happen, so we would probably be hanging out for the next week or so.  Zach settled in on the ground and started playing Legos, we played some card games, and then everyone when home thinking they would be able to see in again in the next day or two......then 11:00 pm came.

October 3rd

The nurse realized that Zach had begun fevering, so she took a complete blood culture, to make sure that he hadn't picked up something bacterial.  The fever grew big fast.  By 3:30 am he was back at 105, and his blood pressure had started to fall.  They had started giving him tylenol at midnight, to help control his fevers, but he wouldn't make it the full 4 hours before his fever would come raging 

back. The Bone Marrow Doc. came in early in the morning, and said they were waiting for his labs to come back, to see what this was.  They thought that maybe he had become septic, because they didn't think that this could be his cytokine response for the T-Cells, because there was not another documented case of a Cytokine release starting 12 hours after infusion. I knew the doc was worried because usually We see the doc for a few minutes in the morning, and work with the nurse practitioners, and RN's for the rest of the day.  But, the Doc had come in multiple times, saying I am concerned about theses fevers and the dramatic drop in blood pressure, I think we are going to move you down to the ICU.  So I called Jeff and told him they were thinking about moving us downstairs in a few hours........3 min later, a nurse was bagging Zach and every alarm was going off.  They kicked the brakes off of the bed, as I threw my purse on his bed, we headed downstairs fast.  We got into our room down in the ICU and it was full of 12 doctors and nurses waiting for us.  They started there magic fast, as I stood there wondering how this had gotten so scary so fast.  In a matter of minutes they had worked there magic and told me that they now had Zach stabilized.  It was then the Jeff walked in, I was so happy to see him.  

The doctors were a bit confused, when they took his blood the Cytokine release had even so small .08 that they couldn't imagine that he could be so sick with such a small response.  How it normally works is as the cytosine response grows in the body, they patient starts to become sicker and sicker until it reaches a peak then the response and the numbers start to fall.  So they still hadn't ruled out that Zach was septic. 

October 4th

It was the same day, super high fevers, really low blood pressure, and no answers the Cytokine had only raise to .12, and Zach was super sick.  I spent every minute by his side, watching the monitors, listening to alarms go off, and having doctors and nurses constantly in and out, taking vitals, conversing about what the next move should be.  Zach slept, and didn't talk much, went to someplace else.  Every morning and night I would whisper in his ear a prayer.  I would ask that angels surround and support him, that the doctors and nurses would be inspired and directed, that angels would watch over the machines and our room, and that Jeff and I would know and be aware of Zach's needs.  I helped me feel peace.

October 5th

Today the Doctors officially decided that Zach's response was a Cytokine release and not that he was septic.  His Cytokine number had gone up to 5.  Which was still low, most kids will not even show a response at 5, and Zach was full blown sick at 5.  His ANC was at 0, , and his white blood count was at 0 too.  They had put him on a blood pressure medication Norepinephrine on Saturday, and as Zach's Blood pressure continued to fall, they had to increase the dose they gave him.  They told me that when they got to .20 that they would have to give him the "rescue medicine" Tosi.  It was a serious game they played....Zach kept getting higher and higher we got up to .19 on the Norepinephrine.  They would give him boils of saline, blood and platelet transfusions, and many other things to help his body not depend on the blood pressure medicine so much.  We are trying to buy as many days as we could without giving his the rescue medication, we wanted this process to work......but there is a very thin line between helping this therapy work and getting so sick, it is hard to come back from. The nurses and doctors worked constantly to keep him away from the .20. The nurses were amazing, they sat right outside our door, and looked into the room constantly, many of the days Zach had two nurses that helped and watched just him.  We had lost of Visitors come and see us.  It meant so much overtime someone can to see him, bring us food, give us a hug.  WE are extremely grateful for everyone in our lives that has helped to ease our burdens.

 October 6th

They told Zach that they were going to put a feeding tube in. He did not want a tube put in.  So he started to ear.  The nurses made him some "hot chocolate" that had 1000 calories in a 8 ounce cup.  So it wasn't about eating good food, it was about calories. He did his best and even drank the hot chocolate, and managed to keep the feeding tube out for another day.  He was sitting up in bed, talking, and interacting, more than he had the previous two days.....but it was the warm before the storm. Late that afternoon delirium set in.  A side affect of the  Car-T, can be neurological.  He started  saying things that did not make any sense, he drifting in and out of consciousness. His fevers were still high and getting higher, we had him covered in ice packs trying to bring down his temp, since he was still not responding to medications. He started throwing up, all of the food he had worked so hard to eat all day.  I kept texting Jeff all of the crazy things he was saying. "If I jump off a platform, will I bounce."  "Hand me the x-box remote so I can turn off the nurse."  "Navy and Tagg go play with your own friends." "Can you stop talking I can't hear them." "Mom, I think I just died."   Everynight when Zach goes to bed, I whisper a prayer into his ear.  One of safety, of peace, of gratitude, of pleading, of comfort, and ask that heavenly angles surround him and our room that he will be lifted up and protected. It was a long night, and he continued to decline.

October 7th

About 9:00 in the morning things started to decline...the nurse was watching him super close.  In the night he had developed fluid in his lungs.  This comes with the fact that the cytokine response produced inflammation in the body, and if you have to much fluid it  needs to find a place to go.  They were aware that he had fluid....things went scary fast. In a matter of 3 minutes, I texted Jeff, saying things were not good and he needed to come.  A nurse was on the bed bagging Zach with Oxygen. Another nurse was on the intercom calling a Code Blue, instantly doctors and nursed where there, shock paddles and all, they were calling is respiratory failure.  They worked to get him stable, while the "rescue" drug Tosi was administered.  They said they were going to try him on the Bi-Pap respiratory machine first, instead of incubating him to see if he responded well enough.  It was a surreal experience....During this time, I was filled with peace, I knew that there were angles in the room, and that his fight here on earth was not over.  They ran tests, did ultrasounds off all of his organs.  Most of his organs showed inflammation, Trama, or were not working right.  His liver,  Kidneys, Gallbladder, Lungs, and Heart.  Jeff arrived 20 minutes after I had told him to come, I was so relieved to have in walk into the room. Even though Zach was not conscious, I knew that he knew his dad was there.  Dad is the best part of everyday.  Zach lights up everytime his dad walks into his hospital  room.  I knew that today would be no exception.  Jeff and I watched and waited, and prayed in our hearts that our buddy would make it through this without any major and long term complications.

The down side to receiving the Tosi was the fact that now the Cytokine release had been suppressed, and the cytokine response would stop.  The doctors were hoping that he would have been able to make it a few more days before having to give him The Tosi, but feel good about the fact that he was able to have 5 days under his belt. Most kids don't even get sick until after day 5, and he had already been super sick and received the rescue medicine.  

October 8th

I now understand why they call Tosi the Rescue drug, because that is exactly what it does.  In a mater of 36 hours,  Zach was out of the woods so to speak.  His blood pressure was improving dramatically, making it so his organs were again getting the necessary blood they needed to heal.  He was still on Bi-Pap, but with the chest x-rays they could see that the fluid was clearing, and just his left lower lobe had collapsed.  Because of the trauma to his liver, his bilirubin levels were elevated and he had Jaundice.  His kidneys had shut down, so they were giving him medications to help him urinate.  His stomach circumference had increased 6 inches, because of  all his inflamed organs.  And his heart had started what is called a delay QT.  This is where his heart beat is sluggish, and delayed.  His fever started to break, and they were decreasing the blood pressure medication.  I was amazed how days had gone by, and I had only left the room to go to the bathroom.  I sat by his side and watch the monitors, held his hand, prayed, and talked to him.  We had lots of family come and visit.  We laughed, cried and rubbed Zach swollen little body. I had continued peace.

October 9th

Today the ICU Attending Doctor came in and told Jeff that I needed to leave, and he hadn't seen me leave the room in a week.  So there with all the nurses watching Jeff and I duked it out.  The attending doctor said that they could call security and have me escorted out, but I need to leave, now that Zach was on the mend.  I didn't want to leave, I knew that Jeff was totally capable, but my heart physically hurt at the thought of leaving.  Zach continued to improve as the day went on, and late than night, I actually did leave, and came home to see and be with the other kids.  It was so good to see and hold them, and not just talking through them via face time.  3 of the kids slept with me that night, and it made me happy.  

October 10th

Aubri and Olivia both had a dance this evening.  So I ran to target with Liv to find some shoes to go with her Homecoming dress, and made sure Aubri had everything she needed.  Met liv's date as he picked her up for their "day date", took the little kids to my mom and dad's, and went up to the hospital.  Zach had thrown up his feeding tube early that morning.  He was still suffering from neurological problems, He was in and out of consciousness, most of what he said still did not make sense. The doctors agreed that he had defiantly seen the worst and he could now be managed up on the cancer floor, so we was transferred back up to ICS. 

October 11th

Zach is back! Today was saw the fog lift.  We started to have actually conversations that made sense, and he talked and laughed with us.  The whole family came up and we attending the ward up at Primary's.  And then we spent the whole day together as a family.  It was wonderful.  Zach started to try and eat some food, he walked for the first time in a while to the bathroom and had a shower.  Finally I could feel and see that all was going to be well....We had gone through the darkness and the light was here.  My parents came up to see us and brought us all some dinner, we visited and it felt light and happy in the room.  Zach was back!

October 11th

Our family has been blessed over and over by the many people that sent us well wishes, supported our family and came and visited.  Zach was signed up to play Lacrosse this fall, but we not able to play, so his cute team, not only made the most darling video for him, they all came up the the hospital to visit him.  Luckily we go a good nurse that was willing to turn her head, and let all the boys come in and see Zach for a few minutes.