So Many have asked how we came to know that Zach had Hypodiploid B-Cell ALL Leukemia. I have known that I needed to have not only a picture record of this journey but also a written one. And thanks to my two sister in laws that have set up a blog and a website for our family to be able to share our story.
Saturday March 8th
It was a busy day, Olivia had been at Ballroom Nationals all week down at BYU, and Saturday was her final partner competition. She was super grumpy, and kept saying she was so tired and that she wanted to just go home. She plugged through, but I could tell she was super tired. When I got home with Olivia, Zach was on the couch. He had fallen and hit his chest on a brick out cropping of our house. He was in a lot of pain, but was able to breath fine and their was no visible sign of bruising. Sunday Morning Olivia woke up and all of the muscles in her body were locked. She couldn't walk or sit up. And Zach was complaining that his chest hurt really bad. Of course Jeff was out of town, so I called my home teacher as well a a good friend and neighbor. They came over and gave Zach a Blessing and checked him out. The censuses was that he had bruised his ribs and that it would just take a few days to heal. In the mean time Olivia was getting worse, she was super weak and tired and all of her joints ached and were stiff. She couldn't even hold a pencil. So Monday I took her to the doctor where he check her all over and ordered a blood test, which came back positive for Mononucleosis. As the same time he ordered an x-ray of her spine. The results of the x-ray showed that Olivia has 40 degree curve of her lumbar spine, and that we would be taking her to Shriners Children's Hospital to help her with her Scoliosis. A Week passed and Zach was still complaining about his chest, and was lethargic and tired. I called the doctor and said I wanted to order a mono test for Zach as well as a chest x-ray. His Mono test came back Negative, and his x-ray was clean. The doc said he probably just had a virus he needed to kick.
Wednesday March 19th
Zach seemed to be feeling a little better. Today was baseball tryouts! He was still tired and his chest was bugging him, but he wanted to go to tryouts. We got there and he was throwing the ball back and forth with his buddy Jack Whitney, and the coaches were roaming watching the boys throw and catch. Then the coaches asked the boys to get in a line, for batting. I looked over and saw Zach slumped against the fence. I went and grabbed his hand, and told him it didn't matter what team he was on, and I took him home. The next day he woke up with pain in his right arm. I told him, it was because of baseball and that it would take a few days for the muscles to get feeling better. I was rubbling his arms and chest with oils to help eliminate some of the pain. I gave him some Advil and noticed that this really helped him a lot.
Monday March 24th
Zach seems to be even more tired, but we are managing his pain. He had been sleeping in my room, for comfort and because I wanted to keep and eye on him. I called the doc and order another Mono test. I was sure that Zach had mono, his symptoms have been so close to Olivia's, with the tiredness, and the muscle pain (or so I thought). I took Zach in again, they did an advanced mono test that takes 3 days to get the results, and it came back negative. So we continued on, rubbing his chest and arms.
Thursday March 27th
My cute Friend Liz Whitney called me after school and said that Jack her son had mentioned that
Zach had fallen asleep in class that day. We talked about how I didn't know what to do for him. I
had taken him to the doc, had all these tests and x-rays, and he must have mono. Or maybe Zach just
didn't want to go to school and do his big report. Liz ever so gently, said she was really worried about him, and had I ever thought about checking for Cancer. IT had never crossed my mind, not even once. We talked some more, but I could not get out of my head the word Cancer. It was like a fire went off. That night I could not sleep, I wanted it to be morning, so I could call our doctor and have Zach in to be tested. I am so grateful for Liz's willingness to listen to the spirit and not be afraid to come to me. I will forever be grateful!
Friday March 28th
I took Zach into the Doctor that morning, and asked him to do a full blood work-up. There was one major change, all of Zach's lymph nodes were swollen, but he did not have a fever, and had never had a fever. The doctor then said, it is one of two things. A crazy Virus, or Cancer. Oh, and we did another Mono test:)
Saturday March 29th
The hospital called and said he did have elevated amounts of white blood cells, and they wanted to do a follow up blood test on Monday. And of Course..... the Mono test was negative. Zach played with his friends that day, and seemed to be doing a little better. In my head, he had a virus, and he was starting to get better. But it was the warm before the storm. Late that night, Zach started with uncontrollable pain through out his whole body. I stayed up with him all night, rubbing and applying pressure to what I thought was muscle pain. It did give him some relief, since the Advil was no longer touching the pain. Sunday the pain continued, and I recruited help from my mom and sister
Aleena who was in town from California. There was always someone rubbling his body and trying to
provide some relief. The thing Zach kept saying......"Take me to the hospital, it hurts so bad." I
called the on call pediatrician, and he told me to wait until Monday morning. They couldn't do much
until they did another blood test to gauge against the first test.
Monday March 31st
It had been an extremely long weekend, he was exhausted, no one had slept, and he told me his arms and legs hurt so bad, he wanted to pull them off. We went to the hospital for blood work that morning, and had to wait all day for results. About 4:00 we got a call from the nurse, telling us to get our family affairs in order, because first thing in the morning we were to go up to Primary Children's for a Bone Marrow Aspiration. Monday night they did call in a prescription for some Loratab......Finally we all slept a little.
Tuesday April 1st (April Fools Day)
We got up to Primary's first thing, we met with a group of Doctors, that went through his blood work, and then took him in for his bone marrow aspiration. The day was long and emotional. Wondering, waiting, hoping, praying. About 5:00 that night, our now Oncologist Dr. Elizabeth Raetz, came into our room along with three other doctors, and told us that they had looked under the microscope, and it was official Zach had Leukemia. We wouldn't know for 24 hours what type he had, but Zach was admitted at that time, and wouldn't be home for 6 days. April Fools day changed our lives. So grateful that my mom, and my sister Aleena, took over my life, and started running kids around, feeding them and making sure all was well around our house.
Wednesday April 2nd
It is confirmed.....Zach has B-Cell ALL Leukemia. We felt like we won the Cancer jackpot! With a 90% cure rate, minimal organ risk, and he would't be sterile. It would take 3 years of Chemo every week, but he would be great in the end. (At This point we did not know that our cancer diagnosis joy would be sort lived, I will explain later)
The next Few Days at Primary's
The next few days were emotional. We watched our cute Zach suffer with so much pain. He was on Morphine, but still he suffered. He developed super high fevers, and no desire to eat. Jeff and I would take turns laying on his bed holding him for comfort. Thursday they started Zach on Chemo, and it was amazing, he started feeling better right away. Within 24 hours he was a new kid. The smile came back, and we began to breath a little easier.
It was during this week, that so many came to our aid. Many friends and family came to visit, and to offer words of comfort. They brought thoughtful gifts, that Zach could do while sitting in bed. My family continued to run my house, and entertain my children. My heart was overwhelmed by the amount of gratitude I felt. It was very humbling.
During that week Zach had 3 rounds of chemo, and started feeling so much better.
They wanted us to stay another day, but Zach was ready to go home. I told the Doctors that I would come back the next day for follow-ups with Doctors and some other tests that needed to be done. So with it being a weekend they let us go home. Zach was so excited. When we got home my mom and sister who had been taking care of the kids, were there with a big sign welcoming him home. Coming home came with a new set of tasks to work on. Our home had to be clear of dust, mold, bacteria. Or anything that would hinder him.. Our wonderful family, friends and neighbors spend all of Saturday and some of Sunday, wiping down every nook and cranny, cleaning shutters, fans, windows, and moving his room from the basement to the upstairs guest room. Zach's sheets need to be washed and dried twice for 48 hours after chemo is administered. All of his clothes, needed to be washed and dried twice after he wore them. We had to be aware of spores in the wind. People coming over needed to wash and or wear a mask. It was a lot of preparation to have him come home, but we were all so glad to have him home.
April 7th
My cute Sister Sarah from California, came to spend 10 days, getting our family healthy. She literally spent 10 days in the kitchen with me.....Dehydrating, sprouting, and cooking amazing healthy food. She cleaned out my panty, fridge, freezer, and food storage of any sugar, dairy, wheat, or processed foods. So our pantry was pretty much empty, and all connivence was gone. The bad food just needed to be gone, then we could have a clean slate to move forward on. It is amazing the things that you can do when given a reason. I would do anything for Zach to help him, even if it ment not eating sugar (which I love so so much). The whole family is on board, and we have only had minimal complaining:)
April 10th
Our First Clinic Visit. It seemed fairly easy, they put us in a room and inserted his port, so that they can draw blood, and give him his Chemo. He was so tired, and wanted to sleep through most of his treatment. I thought I had a good insight into what the next three years of our lives was going to look like. The next week would change all of this.
April 15th
Today is Zach 9th Birthday!!!! He was so ready to leave the house, but with him having an ANC of only 400, we needed to play it safe. While all the big kids were at School, we made a little Trip to Sheels to ride the Fairs Wheel. Even though he is immune compromised, I threw a last minute Birthday party together for him, with a few boys in the neighborhood. Sarah put
together a fun treasure hunt, and with a completely raw birthday cake, and we had ourselves a party. Believe it or not the raw dessert was delicious. They boys were so cute with Zach and made sure that he was doing alright, and comfortable.
April 16th
We got a call from our Oncologist, she wanted to meet with Jeff and I on the 17th, and she said that
she would meet with us whenever was convenient for us, and that she would rearrange her schedule to accommodate our schedule. I asked her if their was something wrong.....She replied, that she would like to speak with both of us together to go over Zach's test results. When Zach was diagnosed, they take Labs, and marrow and send it away to different hospitals to do testing on. They check for any abnormalities, and it usually takes a few weeks after diagnosis. It was another long night. My heart new something was wrong. I called and told Jeff, and immediately he said, something is wrong. It was a sleepless night, with many tears, and lots of prayers.
April 17th
Today was Zach's scheduled time up at Primary's for his chemo. Things went smoothly, all his labs looked good, his ANC was rising. He didn't need any blood or platelets, so far so good. Then they
took Zach a way to another room to administer his Chemo. Our Dr. along with two other people
came into our room......They had gotten the in depth testing back........Zach has a rare and acute from
of Leukemia called Hypodiploidy. Most leukemia is made up of 45-48 Chromosomes. Zachs
leukemia is only made up of 26 Chromosomes. Hypodiploidy is very rare among children, only
approx. 200 children have ever been diagnosed with this form. And they have never treated a child up at Primary's with his Chromosome count before. They told us they were conferring with other Doctors across the country so they could figure the best possible treatment plan for Zach. With Hyplodiplody Zach's chances of Survival went down considerably to 20-30% with the traditional Chemo method. They told us that they would recommend high doses of chemo and radiation, followed by a bone marrow transplant. This would increase his chances for survival to around 50-60%. I felt the fog come over me. The tears started and Cancer reared its nasty head again for our family. When Doctors use words like "fatal" you want to run away.....If you don't hear them, then maybe this is not real...... I was so glad that Jeff was there, he continued to ask questions and find out more details. I went mute, and couldn't stop crying. I had felt such peace and comfort that Zach was
going to live, and even though it was a long treatment plan, he would be a live and go on to do great things, have children, be a missionary, become a husband and father. I felt all of my peace leave, they were using the word...."fatal". They told us that they needed to find a bone marrow match, and that they would start with our 5 other children for a possible match.....They told us not to get our hopes up.....We only had a 25% chance that one of our children would be a match. I pulled myself together, and we went and found or Zach, sitting in a big Chair eating some Goldfish and Chocolate milk......2 things that were no longer allowed in our house....He had a huge smile on his face! I saw him, and felt an over whelming amount of love for this sweet boy, who had chosen this huge trial before he came to this earth. How blessed am I that I am his mother. Through the trials come the blessings, and we had already seen so many of God's tender mercies.....We had moved up to Utah County, from Saint George........My parents had Moved 5 minutes away from our family.......We have an amazing
Children's hospital so close.......God is Good!
April 24th
Today we were heading up to primary's with all of the kids. They are all going to have blood tests to see if we are lucky enought to have a sibling match. The doctors have told us not to get our hopes up. But we are hopeful, we have 5 chances, more than most families have. Good thing we have a lot of kids:) All the kids did great. Navy and Tagg lost if for a minute. Tags blood wouldn't flow because he was crying so hard, finally after 30 seconds and a few pokes, we saw red. We also learned that James gets woosie when it comes to needles and blood. When He saw them stick the needle into Zach chest, James went white as a sheet, and had to go and have a nap in another room. Poor dude! People ask me what child do we want to be the donor......James is the best choice, he is male, and old enough to know what is going on. But Aubri or Olivia would be a good choice too. Now we wait....it can take up to two weeks to get the results back.....that seems soooo long.
April 30th
Today my cute sister in law Skye Johansen took family pictures for us. We were noticing that the steroids were starting to change Zach physical appearance, his face was becoming puffier and his hair thiner. So we thought we better hurry and do it. She is wonderful, I don't know what we would do with out her, and all of our families!
May 1st
Today is a big day 29.....today they do a bone marrow aspiration and a spinal tap. When we get the results back we will know if the chemo is working the way that they want it to. We won't know concrete results until next week, his marrow has to be sent to two different labs, before we get the results. We did get a bit of bad news today. They told us that the bone marrow transplant is out of network for our insurance. The great people up at primary children's are working on our claim, we are hopeful that they will be able to get an exception for Zach, and we will be able to stay in state for his transplant. We believe in miracles!
May 2nd
Happy Birthday to my Oldest son James. He is an amazing boy, and our family loves him so much. This trial with Zach has been the hardest on James......They shared a room before Zach's Diagnosis, and many nights I could hear them talking and laughing as they went to bed. James and Zach have always been cute buddies, and even though things have changed, James is still so aware of Zach. We are one lucky family to have our James!
May 3rd
We have two winners.....both Navy(5) and Tagg (3) are bone marrow matches for Zach. Hooray! We feel so blessed, and excited that we don't have to look for a donor, and now we have two to choose from. We meet with the transplant team next Wednesday, and they will let us know which child will be the one that will help save their brother. I feel like I need to share a personal story....when Zach was a baby, and I had just suffered my 7th miscarriage, of which was twins. My neonatal specialist told me that he did not know what was wrong with me and why I kept miscarrying, but I had 4 beautiful children and to basically accept that my family was done. I felt incomplete and I knew that I would have more children.....when I found out that I was pregnant again I remember placing my hands on my belly everyday and praying and pleading that this baby would live. And that I would help it do great things. She is our amazing Navy. Two years later we were blessed with our buddy Tagg. What changed in my body that I was able to carry both of these babies with minimal problems, I do not know. But one looking back I remember the drive and intense need I felt to add more babies to our family, even at the risk of additional personal pain. What a blessing they both have been, and the joy and laughter they bring to our family is amazing. Now their purpose can go even deeper than completing our family, they can help save it. The Lord answers prayer, even prayers of past trials.
May 6th
Zach's ANC levels are about 1000 this week, so we thought it was a good time for him to go and visit his school class. He has been so board at home, and has been wondering how his teacher and kids in his class were doing. We got there , and the cutest thing, all the kids in the class were wearing blue, which is Zachs favorite color. He sat in the front of the class with me and we answered the kids cute questions about cancer, his treatment, the new way he is eating, and what the future holds. It was rewarding for Zach to see his friends. Many from his class have sent gifts, blankets, and notes. Mrs. Bingham has been a great 3rd grade teacher.
May 7th
Today is the first day of Zachs high risk treatment, which includes high doses of chemotherapy, followed by a week of radiation, then his bone marrow transplant after day 59. We got the results back from his bone marrow aspiration, and they were a bit discouraging. They wanted Zach to be .01% or less and he was .05% which is too high. He still has too much leukemia in his marrow. The reason this is a problem is.....if they were to do a bone marrow transplant and their was still too much leukemia in the marrow, more than likely the transplant would fail and the leukemia would take over the good marrow that he was given. So we are prayerful that this intense round of chemo will do the trick. In 59 days we will do another bone marrow aspiration to find out.
We also met with the transplant team......it was over two hours of information......most of it about all of the side affects and potential problems that could arise....it was heavy. It is amazing how when your child is sick and doctors tell you that your sons cancer could be fatal with out a transplant, suddenly you are accepting of organ failure, sterility, surgeries, rejection, and different diseases. You accept all this to know you have the potential of a future with your son. They also told us that Tagg our three year old son would more than likely be the bone marrow donor. When we told Tagg, he was the winner he was so excited and was giving everyone high fives......I am pretty sure he doesn't understand what he is in for....and maybe that's a good thing!
When we got home from the hospital...... Not only was if Jeff's 41st Birthday, but James was set apart as a deacon. We are so proud!!!!!
May 8th
With the high risk protocol that Zach is on, it requires that a nurse come to our house 3 days a week and administers Chemo through Zach's Port. Her name is Tracy, and she is a great nurse. It is so nice that we don't have to go up to Primary's multiple days a week, and they have made it so he can stay home for some of his treatment. It is a little weird have chemo in my fridge!
May 9th
Today was a good day, Zach was feeling pretty good and wanted to get out of the house. He had some birthday money burning a hole in his pocket and it wanted to go find something to buy with it. When we got to the store he saw these big red chairs. He said those chairs would be so fun for himself to hang out on and play video games. The problem was that he only had enough money to buy 1. So he told me..."with my birthday money I want to buy this chair for James, he will love it" how could I say no, to buying one for Zach too. We grabbed two, and brought them home......Problem is Tagg thinks that James chair is his.....oh well, we need to look for opportunities to share.
Around 3 o'clock that afternoon I got a call from Ashley from KSL. She told me that they were doing a news story on Zach being the honorary captain in tonights game vs. pleasant Grove. She wondered if they could come to our house in the next hour or so and interview us. Of course we accepted and looked forward to being able to hare our story, as well as they story of how much joy these Boys from Brighton had brought into our whole families lives.
And then the fun began, when we got to the game, they had banners that said "ZachAttack" and bracelets for they people who came. Orange is the color of Brighton but it is also the color for Leukemia. They had Zach go out on the field for the coin toss, and he was able to keep the coin that they used. Then he sat on the sidelines with the team throughout the game. With every time out, they included him in part of their circle, and they were constantly giving him high fives and making him feel apart of the team. The coaching staff was so cute with him, the team gave him his first stick, along with brighton sweatshirt, jersey and blanket. They have been so generous to Zach an our family. Jeff and I were very emotional seeing our son with a continuous smile. What I may have not said, is that smiles have been hard to come by lately. Not only that, Zach is not talking much. He always looks at me whenever anyone asks him a question, hoping that I will answer for him, and I do. He speaks to us in wispers, and a lot of thumbs up and thumbs down. Tonight he talked......to the players, coaches, to the reporter, and we saw his smile. It was a beautiful evening.... We can not express the gratitude!
May 11th
Mothers's Day. I feel so blessed to be a mother, To have a wonderful mother, And to have given birth to future mothers. My favorite personal title is mother.
May 13th
Another day up at Primary's. Zach and I got a good game of Phase 10 in while we were in between, Doctors, labs, Chemo, spinal taps, etc. He was in super good spirits today. Most days we head to the hospital he gets a little bummed. But he knew that after the day up at the hospital, we would be heading to the Lacrosse High School Semi-finals. He has become a huge lacrosse fan, and it has been great for his spirit to have something to look forward to.
It is official, our claim to have Zach's bone marrow transplant done up at Primary's was denied. The only way our insurance will cover the majority of the transplant is if we go to an in-network hospital most likely in California. Primary Children's does take most insurances. The problem is that the transplant team, works at Primary's but is connected with Huntsman's cancer institute, so therefore the transplant center is not contracted with all insurance companies. It feels like a bit of a blow, as a mom, how do I not stay with my sick baby when he needs me......But how do I leave my 5 other babies for at least 100 days while we go to California for the transplant. It feels big, somehow we need to figure a way that we can get the insurance company to make an exception for us to have the transplant up at Primary's. We are praying for another miracle. Either way I know we can make it work, but leaving for 3-4 months....seems unimaginable.
Brighton beat Olympus.....Now on to the State Championship!
May 16th
Tonight was the Brighton High State Championship against Corner Canyon. The game was so fun, and it made it even more amazing that Brighton Won. They are the State Champions!!!! The team was darling as usual with Zach. They had him in the locker room before the game, where they presented him with a check for $3809.68. What an amazing and classy group of athletes and parents, who sacrificed and donated to our family. We received so much from this team in this whole experience being so positive for Zach and his attitude. He looked forward to every minute that he was able to spend with these boys. Now they were helping our family economically, with sacrifices in their own lives. We feel so much love and gratitude to these boys and their families.
There were a few tender moments for me to observe. The first was When Ashton #10 told the man that was placing championship medals around each of the boys necks, Said to put his medal around Zach's neck. They announced That Luke #22 was the MVP of the game, he came up to Zach and gave him his lacrosse stick that he had played with all through high school. Then he came up to me and gave me a hug, and gave me all the pieces for Zach to put together and design a new stick. Not to mention all the hugs, high fives, and pictures that he was able to be a part of. I can truly say it was one of the best nights of my life to see my child so happy and having such a good time. I will be eternally grateful for this opportunity the Brighton Lacrosse team gave our family. Zach now has three sticks, and when he is feeling well, he gets outside with his brothers and they throw the ball around. Lacrosse keeps giving.
May 20th
Today was an extra long day of treatment. Zach had 3 rounds of Chemo, a spinal tap and a blood transfusion. His blood count was down, he ha been extra tired, and pale. So they were not to surprised that his numbers were down. With up to 7 rounds of Chemo a week, you are bound to have a few bad ones. Zach has remained strong and happy. We left for Primary Children's at 7 am, and finally we on our way home at 5:30. Their was an awards dinner for the Lacrosse team, and it had been a long day. I told Zach lets just go home buddy, and you can go to bed. He told me that he wanted to go the the awards, and see the boys. So even after Chemo, being put under for the spinal
tap, and a blood transfusion, we headed to the park so that Zach could see these boys that he loves and admires. They had awards for all the boys including Zach. They had put together a video with play and highlights. At the end they dedicated their winning season to Zach. And of course Jeff and I cried......again!
May 21st
Today was a good day for Zach considering all his little body had been rough the day before. We have been talking almost daily with the insurance company. I learned yesterday, when I was up at Primary's that our insurance company had denied our appeal. And now we were going to have to get creative. I really believe that everyone up at Primary's wants to do everything they can so that Zach can stay here for his treatment. Their Cute transplant insurance girl, has been so helpful. We are waiting for a written letter from the insurance stating why they have denied our appeal. Then when
we receive the written reason. They will have our transplant doctor call the insurance company doctor and try and help the insurance company consider our appeal. We are also trying to strike a deal so to speak with Primary's. Saying if we pay XXXXXX towards the transplant, would they consider writing off any of the cost over and above that. So we are doing everything that we can, to try and make this work not only for Zach but for the whole family.
Little miracles keep happening along the way, that encourages us and lets us know that God cares and is aware of us all. My Sister in law Skye called me and told me while at her daughters tumbling recital, she had been talking with a couple who the husband had been battling leukemia for the past three years. Skye started telling them about Zach and how we were not sure where we were going to have the transplant, because of insurance issues. And it just so happens that not only does this man have leukemia too, but he is an insurance lawyer. He gave Skye his info, we have contacted him, and are hopeful that he might be the missing link in this insurance mess. Our family continues to learn lessons along this journey. We have Faith, even when it is tested, that everything will work out.
May 26th
Memorial Day. My cute grandmother Steed that we have called Grana. Made the long drive with my Aunt Vicki from Wenatchee Washington to come and see our family. It was so nice of them to make such a long track to come and spend some time with the kids. My Grana is one of the most service oriented people I know. She is always good for a conversation, and she faithfully takes pictures of everyone and everything. She has documented our lives through pictures, I am grateful for all the cute pictures she has take over the years. She will print and add cute pictures of the kids to every birthday card, Of which she never forgets a birthday. I am so blessed to have such loving, and caring grandparents.
June 27th
Today was the end of the first phase of consolidation for Zach. It means that he only has 3 round of Chemo this week, instead of 7, and the nurse in not coming to our house so........We are going out of town! Hooray. We are leaving this evening, and thanks to some awesome friend of ours, we have a great condo to stay in! My teenagers are not so excited, they are missing lagoon day, 8th grade graduation, dances, yearbook days, and all of the end of year parties. But, I cant worry about all that, we are finally able to get away, and it may be the only time before transplant. So I guess you could call it our summer vacation, before summer actually officially starts! The doctors only criteria for us leaving, was that we were close to a major hospital, and stayed in the state of Utah. We Love Saint George, we miss it so much, and of course all of our great friends!
June 28th
Zach has been feeling great! Today was a great day filled with lots of pool time, and lots of food. He is such an amazing kid! Our family has been on a strict diet, if Zach is going to do it then we all are. Then we went out of town, and it was like I personally threw it all out the window. Pizza sure, Snow cones, of course, sugar cookies, absolutely. The amazing thing is how strong Zach was. I would look at him, and say "buddy, you can have a snow cone" He did not get one, he kept saying he was fine. What a little Champ! I cant believe his streangth. I am so proud. Lets just say the rest of the family did not follow in his footsteps for the weekend. It was a great time together!
June 29th
Another fun filled day in the sun. We were able to see some of our great friends from Saint George. There are so many that we would have like to have gone and visited, and connected. To those we did not see, please know we love you. We only had a few days to pack in as much family fun as we could. The boys started out their day with 9 holes of Golf. This was James and Zach's first time golfing. They had a great time, and want to do it again! Then swimming and a BBQ with friends!
June 30th
We went swimming of course....but in the afternoon, we made it to an indoor trampoline park. I was nervous about how Zach was going to do....how his energy level would be. But he Rocked the trampolines He started off slow, but pretty soon he was jumping around and playing dodge ball. His elbow still bugs him, so he didn't throw the ball much, but he was a serious dodger! That night we played football with the kids on the grass, had some foot races, and saw a few dance moves!
May 31st
I woke up this morning with Tagg in our bed, and was seriously snuggling with Jeff.....
We added some more bad food to the list of today's activities... Swig, I looove their sugar cookies, I am not a soda girl, but give me a good cookie, yes please!!! And again, Zach did not have anything.....Then we found something that he was willing to go off his diet for....
June 2nd
Zach made counts......Hooray! last week his ANC was at 400. They said that for him to have Chemo today he had to have an ANC of 750, to start this second phase of Consolidation. And he hit a woopin 2300. What!!!!!! The sun and a little fun family time must have done him some serious good!!!! So he has 4 week left before his bone marrow aspiration, and then we will know if we can go to transplant, or another 8 weeks of Chemo. It is not all bad getting Chemo, you get your own individual xbox, and dvd player with every movie available at your disposal. They have a huge game closet, and of course some snacks, Zach choose a banana, and water......The nurse comments every time, how he is one of the few that chooses fruit. Zach starts this week with 6 rounds of Chemo. The nurse will be at our home everyday until Friday. And he keeps smilin!!!
June 10th
It is amazing how fast things can change. Last week all of his numbers were looking so good, and this week everything is in the toilet. His ANC is at 100. Which is practically non existant. And he has low counts on HBG, and platelets. More than likely we will have to come back on Friday for a transfusion. We need to keep him in the house and everything clean, and sterilized. We have been blessed by a few wonderful people in our neighborhood that pooled together and bought our family a machine that sprays out Steraplex. Which makes it so I can completely sterilize our whole upstairs in about 25 min. It saves so much time, and we are so grateful for such a supportive ward and neighborhood family. It is so hard for him to have to stay indoors, when it is beautiful outside.
Our Neighbor Mckay brought Zach over this awesome Shaq Jersey!
June 13th
Yesterday Zach had a blood draw during his Chemo, and the results came back that his numbers had continued to go down even further. So we headed up to Primary's this morning for a blood transfusion. I have noticed that Zach is having a harder time going up to the hospital since it has been summer. He is wondering what fun he is going to miss out on while we are up at the hospital. He did awesome as usual!
June 15th
Happy Fathers Day to the most amazing father and husband. It makes me so happy to see the cute and individual relationship he has with each one of his children. He works and sacrifices so much for us all, and I am so grateful. We truly have been blessed.
My sister April and her husband Trevor had this iron man light made by an inventor uncle. It is so cool! Zach wakes up in the morning and puts it under his shirt.
June 17th
So another clinic day up at Primary's. All of Zach's number continue to below. His platelet count came back at 5. Which is nonexixtant. He was scheduled for two different Chemo's this morning, instead they are doing one of the Chemo's and having a platelet transfusion, and we will come back tomorrow for his other round of Chemo. They told us it was a good thing he had not hurt himself or gotten a bloody nose, because it would have kept on bleeding. Platelets are the part of the blood that help it to clot. His ANC has risen slightly to 200, so we still need to watch him closely. He keeps telling me that he wants to go to Lagoon before the transplant. Hopefully we can get his numbers better so that he can at least go to Lagoon this summer.
Our 2nd level appeal with our insurance company company was denied....bummer! We still have hope and are trying to negotiate with Primary's. We are trying to do everything that we can so that we can stay here in Utah and be together as a family! I know that it is going to happen. When ever I think, pray, or try to do something with CHOC in California, I feel muddled and confused. I have gotten to a place that I feel peace, that even if our insurance doesn't come through, we are going to be able to make it work to have his transplant here. We have seen many miracles along the way.....And have faith that another few will bless our life!
A few of the nurses and Doctors thought it was pretty risky wearing a BYU tee shirt, up in the RED Zone!
June 18th
Chemo Today infused over a few hours. There was such a cute group of kids there this morning. They all got together despite ages, 4,6,9,10. And played a few founds of UNO. Zach had a great time, and the moms were so nice and helpful. Since they were all Veterans at Primary's. Each one had their own story, with heartache and trails, but today they were all smiles.
June 24th
Yesterday I called the hospital, given that Zach has bruises all over his body, I was pretty sure that his platelets were low. They had a nurse come out and draw his labs, the results were that today he was going to need a blood transfusion as well as a Platelet transfusion. So today we knew we were in for a long day. Zach was very tired so they put us into a room so he could rest while he had his transfusions. He slept for a long time, and the nurse had turned the lights off, so he could sleep. The nurses would come in and do vitals, but they did not turn on the lights. Zach woke up and said he needed to go to the bathroom. I got him out of bed and as soon as I stepped into the light, I was shocked by the amount of hives allover his body. I ran and got the nurse, and it was all hands on deck...Doctors, nurses, drugs being injected. Our nurse remained calm, but told me later that it could have been very serious, if his air way had started to close, and she was sorry that she had not noticed his allergic reaction to the blood. It took about 3-4 hours to get his reaction under control. He is doing fine, but we have to continue to watch him, because he still has that blood in his system, and hopefully with the medication, he will not have any additional allergic episodes.
Zach had his blood drawn again at the end of the day. His platelets went from 4 to 40. The Doctor wanted them at least up into the 100's. So he will have labs drawn again on Thursday to see if he needs and another platelet and blood transfusion.
So some good news.....I am not supposed to get my hope up yet but. Our insurance company has verbally agreed to a one time only "out of network" exception. The wonderful news is that we are going to stay here for Zach's Transplant! Hooray! We are so happy and excited. We know that our prayers have been answered, and the prayers of so many. We thank you for your Prayers!!
So what does this mean......We don't entirely know either....For the most part we will pay an amount for the hospital, and his transplant will be covered after we pay that amount. As for the doctors they are contracted individually, so we will have to pay all of the different Doctors fees. Hopefully some of them will work with us on their prices. From what I understand at this time, we probably wont know for months what the final out of pocket cost will be....and maybe that is a good thing, if it trickles in slowly maybe the sting wont be as strong:) We have done a few fundraisers, thanks to so many who have donated and bought tee shirts, please know of our gratitude!!! We also have a very generous aunt and uncle are willing to match the money that has been donated to help our family. This money helps ease the large financial burden the looms out there, but we feel very confident in our decision to stay here even though it will be more money out of pocket. You can't put a price on your sons life, and we know that with this transplant, he will live! It is also conforting that we will be together as a family. My children will be able to see one another, and Jeff and I will be able to spend time with Zach, but also fill the needs of our other children. My wonderful parents, will be practically moving into our home, they have been amazing!
We have continued to feel so blessed by so many, and consider this another miracle along this journey. We know that our Heavenly Father cares about each one of us individually. God is Good, and through the trials come the blessings!
July 25th
Zach had a new line put in today, and the other line taken out. This new one is the one he needs for his transplant. It is a duel line and is always accessed. Which means so swimming for the next 9 months or so. He is a champ!
August 13-15
So Zach has developed Pneumonia. He developed a fever during the night of the 11th. They brought in a big car that was actually an x-ray machine. It reminded me of a transformer. This cute car that turned into a machine right there in our little room. Zach can not leave our room for any reason, in fact they have an alarm on the door, that if it is open for longer than 20 seconds, it goes off. They came back with the news of Pneumonia a few hours later. I wasn't to worried until the head nurse came in and told me that developing pneumonia was not super common in transplant cases, and they were really going to watch him super close. Not the mention the additional 10 medications. They are having a hard time getting his vomiting under control. They have him on three different anti-nausia medication, that he is receiving around the clock. Not to mention the essential oils, that we have diffusing into the air. They also have an integrative medicine doctor here at the hospital that has been helping him with massage, acupuncture points, and visitations.
It is hard not to have fear set in. And you remind yourself to have faith. Thank goodness for blessings and having husband willing to administer and bless his son and family. Over the last few days the pneumonia has not gotten any worse, so we hold onto that and continue on with faith.
August 17-22
Zach has turned a corner he is doing so much better. He has quit having fevers and is starting to come back to us more and more each day. We see small improvements. He has begun talking, and will take small sips of water. He is awake more and is more active, in wanting to play games, watch movies, and interact with people that come to visit.
We need his ANC to reach 500 for 3 days in a row for Engraftment. On 18th Zach was 200 for a few days, then on the 21st he went down to 100, today the 22nd it is still 100. So we continue to wait for Taggs marrow to take ahold in Zachary's body. Zach still suffers from Nausea, he is receiving anti nausea every 4 hours ow instead of every two hours. He usually throws up 4-6 times a day, they said that it could continue on for months. Yesterday we tried to give him a bite of some food....first time in two weeks.....Lets just say it only stayed in for 30 seconds. It is common for the kids who have been on TPN (being fed intraveniously) for so long to loose the desire to eat, and when they do their stomachs reaction is to get rid of it. Everyday we will try a little something, if I can get him to go for it! Hopefully only a couple more weeks, till we can go home!
August 26th
More of the same, numbers are not coming up as quickly as the doctors have expected, we need his body to accept and want this new marrow. Even though we won't know that he actually has accepted the marrow until day 100, we know that he is making white blood cells when his ANC number goes up. It is doing it a little backwards, most kids will get their numbers up and then start the process of getting ready to go home. Zach is getting ready to go home while waiting for his numbers to come up. He is off of his morphine, off of the oxygen, taking many of his meds orally, eating small amounts of food. So in talking to the doctors. One he reaches 500 for 3 day, it should only be a day or two until he can come home. So we are praying for numbers....I think they are coming soon!
He has been happy and fun. Playing lots of games and watching movies, reading and listening to books. He is feeling so much better, and the pneumonia is getting a little better every day too!
I did go home for a few hours today while my friend Sandy stayed with Zach. It was Navy's first day of Kindergarten, and it was amazing to see her cute face when I picked her up after school. It was killing me this morning being torn between Zach and knowing Navy was at home getting ready for her big day. I was so happy that I was able to share some time at home with the kids today. I actually made dinner, and missed being in the kitchen making good healthy food for my kids. Zach is on the weirdest diet. It is called low microbial. Which means everything is dead, processed, and dead again. Everything comes in a package, and has been frozen first and then heated to 165 degrees. It went from this healthy, non processed, organic diet to the complete opposite end of the spectrum. The idea is that this way if everything is dead, then they are less likely to get a bacteria or fungus that could cause a problem. He has to be on this diet for the 100 days. We got this! Home is close I can feel it!
August 29th
We are going home! It was amazing the Doctors gave Zach a medicine called Nupegen. Basically it jump starts his body to produce nutrafills, which help to produce white blood cells, which helps increase his immune system. And it worked, his ANC whet from 300 to 2700 hundred overnight, then it leveled off to about 800. Which was all we needed for him to come home. In fact they let us go even earlier then they said they normally would, because not only was he doing well but they had heard from a friend of mine that I cook. Believe it or not that actually made a difference in letting us come home a few days earlier. Zach was on TPN for so long, that it makes them nervous to send kids home on this diet, not knowing how the kids will respond to food. So Zach came home with 13 different medication. Most of them oral, and then at night I hook him up to IV fluids that have different minerals that his body still needs.
It was so fun, to wake up and know that we were headed home! He was so excited! I was so excited! In fact when we had called Jeff the day before to tell him we were coming home he started to cry. It feels like Christmas!
We woke up and the teaching began, we had to meet with different Doctors, Nurses, Pharmacists, everyone made sure I was well trained and taught, and provided all the information I would need to have him at home. Jeff and my parents rounded up all of the kids at school and headed up to the hospital so we could all be together for the Ringing of the Cancer bell. They gather the nurses and doctors together in the hallway, They sang Zach a song and then he got to ring the bell, signifying the fact that he is leaving and hopefully with the transplant and everything that they have done for him, he will be Cancer free. Cancer Free Yipee! It was a magical moment, hopefully it means the worst is behind us, and now we can work towards a healthy little body. I know the road is long a head, but being able to be in our one home and together as a family makes the burden lighter.
So what does it mean from here......We are waiting for a few things....They will pull marrow out of his hip in about a month. They know the difference between Tagg's marrow and Zach's. They hope to see 100% of Tagg's marrow, and none of Zach's. He will have these done quite a few times over the next year plus. Just to make sure that none of Zach's sneaky Leukemia cells have stuck around and are reproducing. He will go into clinic for his weekly visit, with his doctors and have different labs and testing done. We are waiting for the benchmark day of +100 so that he can come off of his diet, and be able to travel more that 1 hour away from Primary Children's. He will be immune compromised for the next 9+ months. Which means minimal crowds. I will be home schooling him this year, he is not allowed to go to school, church, places where there are a lot of people in small spaces. He is doing great! Even the past 24 hours that we have been home, he is smiling, walking around, laughing, playing, eating, and looks so much better. He is a survivor! We thank our Heavenly Father daily for his tender mercies, and for his divine hand in our lives. I have the faith and peace that in 9 years from now we will be saying good-bye to him as he goes and serves an LDS mission, and then moves on to attend college, finds a cute girlie to marry, and hopefully somehow is able to have the beautiful opportunity to become a father, and to know of the love we have for him.
September 17th
Wow, a few weeks have gone by super fast. Now that we are back into the busy of life, it is crazy how fast the days go by. My alarm goes off at 5:45, and hurry and get a work out in before making breakfast and getting the kids ready, With Aubri leaving for school at 7:08, Liv and James at 7:45, Navy at 9:00, and Tagg at 9:30. When Tagg leaves then I start school with Zach for the next three hours. Zach is doing really well with his schooling.
We were up at the hospital today and his ANC is up to 1100. It is rising every so slowly. But it is rising never the less, so we will take it! He is getting more energy, and sleeping less and less. He is happy and takes all 30 pills daily like a champ. He is eating awesome, and keeps most things down, just throwing up randomly. He looks forward to every afternoon when the kids come home from school, and he can have a buddy or two come over to play for awhile. His foot is still bothering him, he has a case of dropsy. It causes him to limp, but he still tries to keep up with everyone. We are trying to get him back into a routine of helping with some chores.....Emptying the dishwasher, and replacing the sacks in the garbage cans. Starting small! He still cant go out in public, where there are a lot of people in a enclosed area. So we have been staying close to home, but at least we are home! Today is day #43 post transplant. Life is good!
October 6th
Day # 62 post transplant. People often ask me how Zach is doing.....I guess that is a loaded question. For the most part he is doing really well, he is gaining more energy, he is happy, he is making progress daily, and when you look at him, he just looks better. He is growing a wicked set of black eyebrows. His hair is coming in black instead of the light brown it was pre-transplant. He looks less sickly. On the flip side, they told us last week that he hasn't grown even a centimeter in the last 7 months, and that we will probably have to do some form of artificial growth hormone. They said that the amount Methotrexate that they are injecting into his spine can lead to brain damage, and so I am going to have to watch him super close. As the weeks go on, we along with the doctors will weigh cost vs. benefit of continuing on with the Methotrexate. (Chemo injected into his spine). Also with an increase in liver and lung damage. He has lost 2.5 pounds even with me watching him take every bite, and counting every calorie. Which can be a sign of GVHD, so we work super hard to get him to eat good healthy food. This week we will evaluate with the doctors if we need to put in on a feeding tube. His ANC is still at 1100, which surprises the doctors that with a sibling donor that his body isn't taking to the new healthy marrow more quickly. We continue to have hope that this transplant will ve a success. He still has a small limp from the Dropsy. He has a skin disorder that is changing all of the pigment in his skin, some of his skin is white and other parts are brown, It is a side affect of the transplant.
We continue each day with prayer and a positive attitude! He is doing do well, and we are grateful for the blessing he is in our lives, we know the road is long, but we are holding onto the faith that the outcome will be an amazing life!
October 7th
Some long time great friends of our family have made some custom wristbands. If you are interested the bands are $5 including shipping. Click on the donation link at the top of the blog and then Click on the donate button on Zachjohansen.com. Under the purpose enter your name and address. Then in the donation place fill out the amount of wristbands! If you have any questions email ryantbarker@gmail.com
So many of you have helped out our family so much! We are so grateful to you all for your continued support!
July 1st
It is our scheduled day up at Primary's. Yesterday we had a nurse come an take labs for Zach. His numbers continue to be so low. So he will not be able to have his aspirate today. Instead we are headed up there for another blood transfusion and platelet transfusion. We left our house at 7:30 in the morning. Zach started complaining that he was not feeling well on the drive up there. When we arrived I could hardly get him out of the car. He was complaining that his whole body was hurting, and he could barley walk. When we got up to clinic, he has a low grad fever within the next hour he had a temp of 103.5. Immediately the admitted him. It was amazing how fast he got seriously sick. I guess that is what happens when your immune system is actually 0. I dint know that was possible, but he did not even register an immune system. Tuesday was a bad day, he was so sick and in a lot of pain, it reminded me of the last time we had been in the hospital. They started him on way to many medications, and did two blood transfusion and a platelet transfusion. Wednesday morning, I started to see Zach again. They said he could go home if we could get his immune system (ANC) up to 100.
July 2nd
ANC still at 0. So we know that we are here another day. Plus he has to go 48 hours without another fever. With the Blood and Platelet transfusions he is feeling a lot better, we even got to sneak out of the hospital after visiting hours and walk around the hospital grounds. Not to mention, watching movies, reading books, and playing 900 rounds of crazy 8's.
July 3rd
Zach is feeling good today. His ANC is 100! So we can go home. We will go home with his port accessed. A nurse will be at our home this afternoon to teach me how to give him all of his IV meds that he is coming home on. Since this was a week off Chemo, and he was supposed to have surgery, and that did not happen we thought we were going to sneak away for a few days, no such luck. So when we got back from the hospital, we loaded up the boat and headed out on utah lake for a few hours! He is such a sport! We are trying to fit in a much family time as we can!
We also got a date for his transplant......July 21st Zach will start his full body radiation. Because of our insurance debacle he will be going to LDS hospital for his radiation. He will have it twice a day for 4 days, and then On Friday July 25th he will have his transplant at Primary's. He will be in there until he grafts which the average is 7-8 weeks. We will spend the next two weeks trying to get his numbers up! He will have his aspirate on Tuesday, and we will hope for great things. We will spend 3 days a week at the hospital for the next two weeks, and then game on!!! We feel so much gratitude to be able to have his transplant here! We thank our Heavenly Father daily for this gift!
July 4th
Started the day, on the lake....it was so choppy! So we came home and cleaned....always needs to be done.
That evening we had some dinner and fire works with neighborhood friends.
July 11th
We headed up Af Canyon, for a quick camping trip. We love to camp and it wouldn't be summer without a little dirt. We had to be able to be at a major hospital within 1 hour, so AF was the ticket. We went to granite flats.....it was so much fun, and I think it is good for the soul to be that close to so much outdoor beauty, and cards!! We rode 4 wheelers, ate good food, made fires, and played lots of card games! A perfect weekend. We were dirty, but we were happy. Zach did so well, it is always scary to leave home, because you never know skipbo what can creep up, but it went off without a hitch. Thanks so much to our friends the Tarwaters that provided our 4 wheeling entertainment.
July 14th
Today is a big day!!!! Zach gets his bone marrow aspirate, that we have been so patiently waiting for. Since Zach's numbers have been so low for so long, we have finally gotten the go ahead. His ANC is 600 and Aspirate here we come. The minor surgery went great, and Zachary did have Chemo injected into his back as well. So now we wait.... I feel like I am waiting for christmas, or to give birth. It is constantly crossing my mind....It all comes down to this, if Zach is MRD negative then he can have the transplant, if not then there is more chemo in his future. When you know that the end result is a bone marrow transplant, it is hard not to just want to get to that point, instead of putting his cute little body through more and more.
July 16th
We spent most of the day up and Primary's doing all of Tagg's work-up and hearing and tests on Zach. they need baseline tests for everything on his body, so they can see if something is deteriorating, due to the radiation and intense chemo he will be doing within the next few weeks before the transplant.
And then the phone call came....4o'clock we got a call.....Zach is MRD negative... .01% as good as we could have hoped for! It is amazing, we all feel a flood of relief, and know that our prayers have been answered. Now game on....Bring on the transplant!
July 17th-July 25
We are having fun!! Zach's numbers are up and he is feeling much better, he has been playing with friends and cousins. Now we have finally gotten to go ahead and we are going to Lagoon!!! So on July 19th we went to the Steel Days Carnival, July 22nd we hit seven peaks, and on the 23rd we hit Lagoon! It was awesome, it seemed normal. He was happy and excited to go on all of the big rides, he did ride in the stroller, but he need to keep his energy up for the rides. It was a perfect day with Grandma Ruthie and Aleena and her kids.
Zach had a new line put in today, and the other line taken out. This new one is the one he needs for his transplant. It is a duel line and is always accessed. Which means so swimming for the next 9 months or so. He is a champ!
July 29th
The beginning of Total Body Radiation. He will go in everyday for the next four days at 9am and again at 3pm. The put him on this bicycle seat and he had to hold super still while he had radiation on both his front and back. The first day was rough, not only did it take a long time, but soon after we got into the car the throwing up began, and didn't stop. I even stopped and bought him a subway, thought we could try and settle his tummy. He took two bites, then proceeded to vomit all over his sandwich. Poor dude! When we finally got home we got him some Medicine to help with nausea and it helped so much. He stayed on the medicine around the clock, to prevent any other throw-up attacks.The darling radiation team up at LDS hospital were so cute with him. They don't do children every often, but because of our insurance not paying for many things...including radiation at Primary's. We got the chance to be with a great team of radiologists. They went above and beyond for him. When they asked him what his favorite candy bar was and he said, and AERO bar from Canada, somehow they managed to come up with and Aero bar. He loved it!!! He was a ble to ring the bell on his last day, and we all clapped and hugged!
Zach Throwing up out of the car window
Ringing the bell after Radiation was complete.
August 2nd
First day in the hospital, a few days to prepare his bone marrow transplant. He starts today with Chemo that he will have for the next two days followed by a day of rest. His nausea has been doing better with the medication. When he walked into his new sleeping quarters for the next little while he marked his territory by throwing up within the first minute we were in the room. Now that he has stepped foot into his room, he will not be allowed to leave the whole time that we he is here. In fact if you keep the door open to long an alarm goes off.
August 5th
TRANSPLANT TUESDAY! This was a magical day for our family. It started with Jeff arriving with Tagg at 6:00 am. They started the bone marrow harvest around 7:30, and it took a couple of hours. They poked Taggs 's hip bones 59 times to receive 310cc of perfect healthy marrow. Once Tagg came out of recovery we took him up to Zach's room, and the cute boys laid and slept on Zach's bed together for a few hours while they prepared the marrow for Zachary. Then the hospital staff Doctors do the cutest thing. They have a Bone Marrow Birthday party for the boys. Many of the staff came in and sang a song to the boys and they presented them with gifts. Each of them got a stuffed animal, and a blanket. Zach got some legos, and Tagg an airplane. All of my children and my father were there for the party. At about 2:00An a man dressed in white came into the room with the marrow, and right there in Zach's room they started the transplant. It was amazing to have all of our children around and to have Tagg laying right next to him. Over the next few hours, using just gravity the marrow flowed into Zach.....And then it was over. I asked him if he felt any different...."NOPE." So now we wait, and hope that engraftment comes quickly. With Zach having a sibling donor he has much less chance of getting Graft VS. Host disease, which is one of the things that would keep him in the hospital for a longer period of time. He is doing so well, he is happy and loves when his dad and siblings are here. When it is just Zach and I it is so quiet, we are used to a loud house with lots of kids and noise.
Tagg getting prepped for surgery
Tagg followed the Doctor to his surgery on this cool bike. He loved it!
Coming out of Surgery, and trying to wake up.
Heading up to Zach's room
The Staff gave Zach a cardboard Iron Man to keep in his room.
Right before the transplant and the birthday party, both boys were asleep. We had to wake them up for the festivities.
The bone marrow
August 6-8
These days were great, Zach still felt really quite well, aside from some nausea. He had friends and family come and visit, and we were all thinking that we could do this for the next little while. Zach and I have had a great time playing games, watching movie, and reading books. I think we have played the game Sorry 50+ times.
August 9-12th
Well it has begun, they warned me it would happen, but you still hope that your child it the exception to the rule. Zach has Mucositis. Basically his mouth, down his throat and his whole GI track are solid sores. They have him being feed intravenously 24 hours a day. And he is on a constant morphine drip for the pain. He Hasn't been eating any solid food, and weirdly enough even though he is not eating he keeps throwing up. When he throws up the pain is so intense that it has even made him blackout. The doctors and nursing staff have been amazing, they are very Vigilant and great to work with. I know that this will pass for him but as a mom not being able to fix it is so hard. Zach and I had a good conversation about the atonement and how Christ has suffered for everyone. We then talked about his pain, and how Christ knew of his pain and would help him through it. Zach does not talk right now, but he smiled and gave me a thumbs up. So we continue on towards the goal of engraftment.
I keep feeling such gratitude that Zach was able to have his transplant at Primary's even though financially it was not the best decision, I know for our family it was. Jeff has been able to come up to the hospital almost everyday. And Zach and I have been able to see the kids so much. Jeff brings different kids depending on the night, and on Sunday all the kids were at the hospital the whole day, we were able to attend the small branch here at the hospital, and spend the day together. We played games, watched movies and visited with friends and family. I have even been able to sneak home far a few hours to check out was was going on at home. It makes Zach so happy whenever anyone walks into our room. He has loved seeing his friends and family, and perks up for a game or two of Sorry! We are so blessed to have such amazing people in our lives. So many family and friends have been helping with the kids, entertaining them, driving them to lessons, feeding them, and even doing all my laundry! I often wonder how I will ever repay the favors, and one of my friends said it perfectly. You don't need to repay me, just pay it forward. That I can do!
So Zach has developed Pneumonia. He developed a fever during the night of the 11th. They brought in a big car that was actually an x-ray machine. It reminded me of a transformer. This cute car that turned into a machine right there in our little room. Zach can not leave our room for any reason, in fact they have an alarm on the door, that if it is open for longer than 20 seconds, it goes off. They came back with the news of Pneumonia a few hours later. I wasn't to worried until the head nurse came in and told me that developing pneumonia was not super common in transplant cases, and they were really going to watch him super close. Not the mention the additional 10 medications. They are having a hard time getting his vomiting under control. They have him on three different anti-nausia medication, that he is receiving around the clock. Not to mention the essential oils, that we have diffusing into the air. They also have an integrative medicine doctor here at the hospital that has been helping him with massage, acupuncture points, and visitations.
It is hard not to have fear set in. And you remind yourself to have faith. Thank goodness for blessings and having husband willing to administer and bless his son and family. Over the last few days the pneumonia has not gotten any worse, so we hold onto that and continue on with faith.
August 17-22
Zach has turned a corner he is doing so much better. He has quit having fevers and is starting to come back to us more and more each day. We see small improvements. He has begun talking, and will take small sips of water. He is awake more and is more active, in wanting to play games, watch movies, and interact with people that come to visit.
We need his ANC to reach 500 for 3 days in a row for Engraftment. On 18th Zach was 200 for a few days, then on the 21st he went down to 100, today the 22nd it is still 100. So we continue to wait for Taggs marrow to take ahold in Zachary's body. Zach still suffers from Nausea, he is receiving anti nausea every 4 hours ow instead of every two hours. He usually throws up 4-6 times a day, they said that it could continue on for months. Yesterday we tried to give him a bite of some food....first time in two weeks.....Lets just say it only stayed in for 30 seconds. It is common for the kids who have been on TPN (being fed intraveniously) for so long to loose the desire to eat, and when they do their stomachs reaction is to get rid of it. Everyday we will try a little something, if I can get him to go for it! Hopefully only a couple more weeks, till we can go home!
August 26th
More of the same, numbers are not coming up as quickly as the doctors have expected, we need his body to accept and want this new marrow. Even though we won't know that he actually has accepted the marrow until day 100, we know that he is making white blood cells when his ANC number goes up. It is doing it a little backwards, most kids will get their numbers up and then start the process of getting ready to go home. Zach is getting ready to go home while waiting for his numbers to come up. He is off of his morphine, off of the oxygen, taking many of his meds orally, eating small amounts of food. So in talking to the doctors. One he reaches 500 for 3 day, it should only be a day or two until he can come home. So we are praying for numbers....I think they are coming soon!
He has been happy and fun. Playing lots of games and watching movies, reading and listening to books. He is feeling so much better, and the pneumonia is getting a little better every day too!
I did go home for a few hours today while my friend Sandy stayed with Zach. It was Navy's first day of Kindergarten, and it was amazing to see her cute face when I picked her up after school. It was killing me this morning being torn between Zach and knowing Navy was at home getting ready for her big day. I was so happy that I was able to share some time at home with the kids today. I actually made dinner, and missed being in the kitchen making good healthy food for my kids. Zach is on the weirdest diet. It is called low microbial. Which means everything is dead, processed, and dead again. Everything comes in a package, and has been frozen first and then heated to 165 degrees. It went from this healthy, non processed, organic diet to the complete opposite end of the spectrum. The idea is that this way if everything is dead, then they are less likely to get a bacteria or fungus that could cause a problem. He has to be on this diet for the 100 days. We got this! Home is close I can feel it!
August 29th
We are going home! It was amazing the Doctors gave Zach a medicine called Nupegen. Basically it jump starts his body to produce nutrafills, which help to produce white blood cells, which helps increase his immune system. And it worked, his ANC whet from 300 to 2700 hundred overnight, then it leveled off to about 800. Which was all we needed for him to come home. In fact they let us go even earlier then they said they normally would, because not only was he doing well but they had heard from a friend of mine that I cook. Believe it or not that actually made a difference in letting us come home a few days earlier. Zach was on TPN for so long, that it makes them nervous to send kids home on this diet, not knowing how the kids will respond to food. So Zach came home with 13 different medication. Most of them oral, and then at night I hook him up to IV fluids that have different minerals that his body still needs.
It was so fun, to wake up and know that we were headed home! He was so excited! I was so excited! In fact when we had called Jeff the day before to tell him we were coming home he started to cry. It feels like Christmas!
We woke up and the teaching began, we had to meet with different Doctors, Nurses, Pharmacists, everyone made sure I was well trained and taught, and provided all the information I would need to have him at home. Jeff and my parents rounded up all of the kids at school and headed up to the hospital so we could all be together for the Ringing of the Cancer bell. They gather the nurses and doctors together in the hallway, They sang Zach a song and then he got to ring the bell, signifying the fact that he is leaving and hopefully with the transplant and everything that they have done for him, he will be Cancer free. Cancer Free Yipee! It was a magical moment, hopefully it means the worst is behind us, and now we can work towards a healthy little body. I know the road is long a head, but being able to be in our one home and together as a family makes the burden lighter.
So what does it mean from here......We are waiting for a few things....They will pull marrow out of his hip in about a month. They know the difference between Tagg's marrow and Zach's. They hope to see 100% of Tagg's marrow, and none of Zach's. He will have these done quite a few times over the next year plus. Just to make sure that none of Zach's sneaky Leukemia cells have stuck around and are reproducing. He will go into clinic for his weekly visit, with his doctors and have different labs and testing done. We are waiting for the benchmark day of +100 so that he can come off of his diet, and be able to travel more that 1 hour away from Primary Children's. He will be immune compromised for the next 9+ months. Which means minimal crowds. I will be home schooling him this year, he is not allowed to go to school, church, places where there are a lot of people in small spaces. He is doing great! Even the past 24 hours that we have been home, he is smiling, walking around, laughing, playing, eating, and looks so much better. He is a survivor! We thank our Heavenly Father daily for his tender mercies, and for his divine hand in our lives. I have the faith and peace that in 9 years from now we will be saying good-bye to him as he goes and serves an LDS mission, and then moves on to attend college, finds a cute girlie to marry, and hopefully somehow is able to have the beautiful opportunity to become a father, and to know of the love we have for him.
September 17th
Wow, a few weeks have gone by super fast. Now that we are back into the busy of life, it is crazy how fast the days go by. My alarm goes off at 5:45, and hurry and get a work out in before making breakfast and getting the kids ready, With Aubri leaving for school at 7:08, Liv and James at 7:45, Navy at 9:00, and Tagg at 9:30. When Tagg leaves then I start school with Zach for the next three hours. Zach is doing really well with his schooling.
We were up at the hospital today and his ANC is up to 1100. It is rising every so slowly. But it is rising never the less, so we will take it! He is getting more energy, and sleeping less and less. He is happy and takes all 30 pills daily like a champ. He is eating awesome, and keeps most things down, just throwing up randomly. He looks forward to every afternoon when the kids come home from school, and he can have a buddy or two come over to play for awhile. His foot is still bothering him, he has a case of dropsy. It causes him to limp, but he still tries to keep up with everyone. We are trying to get him back into a routine of helping with some chores.....Emptying the dishwasher, and replacing the sacks in the garbage cans. Starting small! He still cant go out in public, where there are a lot of people in a enclosed area. So we have been staying close to home, but at least we are home! Today is day #43 post transplant. Life is good!
October 6th
Day # 62 post transplant. People often ask me how Zach is doing.....I guess that is a loaded question. For the most part he is doing really well, he is gaining more energy, he is happy, he is making progress daily, and when you look at him, he just looks better. He is growing a wicked set of black eyebrows. His hair is coming in black instead of the light brown it was pre-transplant. He looks less sickly. On the flip side, they told us last week that he hasn't grown even a centimeter in the last 7 months, and that we will probably have to do some form of artificial growth hormone. They said that the amount Methotrexate that they are injecting into his spine can lead to brain damage, and so I am going to have to watch him super close. As the weeks go on, we along with the doctors will weigh cost vs. benefit of continuing on with the Methotrexate. (Chemo injected into his spine). Also with an increase in liver and lung damage. He has lost 2.5 pounds even with me watching him take every bite, and counting every calorie. Which can be a sign of GVHD, so we work super hard to get him to eat good healthy food. This week we will evaluate with the doctors if we need to put in on a feeding tube. His ANC is still at 1100, which surprises the doctors that with a sibling donor that his body isn't taking to the new healthy marrow more quickly. We continue to have hope that this transplant will ve a success. He still has a small limp from the Dropsy. He has a skin disorder that is changing all of the pigment in his skin, some of his skin is white and other parts are brown, It is a side affect of the transplant.
We continue each day with prayer and a positive attitude! He is doing do well, and we are grateful for the blessing he is in our lives, we know the road is long, but we are holding onto the faith that the outcome will be an amazing life!
October 7th
Some long time great friends of our family have made some custom wristbands. If you are interested the bands are $5 including shipping. Click on the donation link at the top of the blog and then Click on the donate button on Zachjohansen.com. Under the purpose enter your name and address. Then in the donation place fill out the amount of wristbands! If you have any questions email ryantbarker@gmail.com
So many of you have helped out our family so much! We are so grateful to you all for your continued support!
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