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.