A quick update before I lay down tonight. Chase’s chest Xray showed hazieness, which led the doctors to order a nasal swab to check for viruses. All through the night last night I asked if the swab had come back with results and they still were not in. This morning the doctor came in and said that Chase swabbed negative for any virus. That led me to asking her what the cause for the hazy chest x-ray could be from. As many moments in this journey have taught me…there are no concrete answers. We are still waiting to hear back on the blood cultures but as of now the doctor said she was encouraged by the fact that he has not spiked a fever again and that the swab came back negative. Chase had a day of being up and down physically and emotionally. He was obviously tired and after having a dressing change and his neupogen shot he said “I just want to be left alone now okay”. I understood it completely, I know I would feel the same way. Yet it still does not break his beautiful “Chase spirit”. When I asked him, “If you could have 3 wishes what would they be”. He responded with, “I would have two mommies that were exactly the same so when you went to see Emma there was always my mommy with me, I would like stronger super hero powers…oh and I wish the original Wiggles would get back together.” I giggled and said, is there somewhere you would love to go or anything like that…he said “nope, just two of the same mommy”. I love Chase and his beautiful Chasisms.
It is hard to describe the last 24 hours. Chase feel asleep peacefully last night so I got up to get my daily devotional to read last night. For the first time I could not find it, I looked in the spot I usually leave it and it was gone. I was so tired and the thought of just going to bed and finding it in the morning past my mind. Then I thought “I bet Satan does not want me to read my devotional tonight”. So I kept looking, after about 25 minutes I found it and began to read. As I read I felt “called” to read more so I picked up a book about “Asking God” and another about healing. When I was done with my readings I put my hands on Chase and called out Jesus’s name allowed. I repeated it as I laid my hands on Chase, I said, “Satan. leave our family you will no longer torment us, God has healed Chase and I stand next to God.” I asked God to cover Chase in the healing blood of Christ and pictured Jesus standing over Chase’s head. Despite having a bigger bed after moving the couch next to the hospital bed I still squeezed in my usual spot right next to Chase. I find that I cant sleep if I am not touching his warm body. Chase wound up spiking a fever and his blood pressure began to drop. Our nurse was wonderful and contacted the doctors, they gave him a bolus of fluids to try and stabilize his blood pressure and started him on triples (antibiotics). Our caring nurse continued to come and check his blood pressure every 1/2 hour. I could not sleep so every time she came in I would ask how his blood pressure was doing. After coming in several times the nurse gently said, “You lay down and get some sleep and I will tell you if there is something significant.” I wrapped my arms around Chase and eased into sleep. I was plagued with horrible nightmares during the night. I also learned that Emma came down with another fever, this has to be the third time in less than 30 days…wowza!
Doctors came and spoke with me in the morning and spoke about Chase’s fever and low blood pressure. They said the worry and the reason they draw cultures of his line immediately is they are afraid of sepses. Sepses is when the infection is spread through the blood and pumped through the heart to the organs causing the organs to fail. They said that was the reason for immediately starting the antibiotics. The cultures will take a few days to grow, so for now we watch for signs of sepses. Another worry is that he has a virus that has crept into his lungs. Chase tested negative for any virus when we were admitted however his immune system is just so weak he could easily get a virus, which is worrisome. They ordered a chest x-ray which revealed some clouding in his lungs, which gives concern for viral phenomena. They ordered another nasal swab to see exactly what it could be but the results have not come back. Chase also received blood products this morning. I can tell his color is off and his eyes are encircled in dark deep circles.
After my night of reaching out to God and rebuking Satan I could not help but feel as though Satan was trying to break my faith and waging war on my family. I have tried to stay calm today in the knowledge that Jesus Christ is so much stronger and I will hold steadfast to my faith.
I ask you to pray steadfastly for Chase. Pray for no sepses, no phenomena and a very small reason behind the fever and blood pressure drop that can easily be fixed. I asked you to join me as I protect my family against Satan in prayer.
I have been having a hard time writing this update. Trying to put into words how I feel going through this journey sometimes leaves me stumped. As Chase rests peacefully, I just can not find the comfort to sleep so I decided to sit down and write.
Chase has been doing well and was very happy to see Emma and I walk through the door on Saturday. Since being released from the hospital he has been nauseous and had lots of belly pain but has handled everything with a HUGE smile on his face. Marc and I tried to do some of the things on Chase’s “to do” list for when he was released from the hospital but the restrictions are so intense. I found a place in Phoenix where a few blocks are decorated for Christmas and we decided to head out there and see if the kids could see some lights from the car windows. Their eyes lit up as we entered the block of beautifully decorated trees and streets. We tried to get as close as possible but it broke my heart to see the kids with their noses against the glass watching the other children play out in the main lawn area where all the lights were. Emma asked why they could not go out and play? I tried to pull back tears and say “Chasie can get sick from people outside”. She seemed to take that well and just watched the children play through the window.
My time with Emma was amazing, yet being with her makes me realize how much time I have missed. Every time I see her she seems to have grown and seems so much older. She is without a doubt an old sole and she keeps her emotions tucked inside and rarely cries. On the day we were heading back to Phoenix she told anyone that would listen to her “I get to see my brother today”. She smiled the whole ride home and kept saying, “how much longer until I get to see Chase?”. When we arrived at Ronald McDonald she quickly threw off her shoes and gave Chase a huge hug. Within a few minutes she was rubbing his feet and at his beckoning call. Marc and Emma were due to leave the following day on Sunday to get Emma ready for school. A few minutes before she was due to leave she broke down in tears. She was so upset it was hard for her to get her words out, she cried saying, “please momma, please come home with me, I just want a few more days with you, I want us all to go home”. Her final cries broke my heart as she said “I just want a family”. Marc and I spoke and decided to let Emma stay for one more day. When I told Emma she could stay another day but would have to go back on Monday to get ready for school she sobbed and said, “Thank you so much mommy, thank you daddy.” As she cried in my arms I feel apart and cried with her.
On Monday morning Emma slept in while I got Chase ready to go to clinic. It was a quick visit with the BMT doctor going over how Chase was doing, talking about about readmitting Chase on Wednesday and labs. I tried to rush to get back to the room and Chase stopped by the snack room to grab Emma an Otter Pop. As as I rushed through the door I realized the room was sterile. Marc and Emma had already left back to Tucson. My heart dropped to my knees as I looked around yearning to see them sitting on the couch, wanting Emma to jump into my arms as I walked into the room but they needed to get back to Tucson. The rest of the day was hard, I was aching for the whole family to be together, Emma’s words resinating in my mind…”I just want a family”. Some parts of the day I was sad, other parts I was angry…and others I felt defeated. It is quiet in this room with just Chase and I.
I spent today getting ready for Chase to be checked back into the hospital tomorrow. I packed up loads of his “necessitates” and played video games with him in between packing and cleaning. I found myself watching the clock all day. 8:00 a.m, I knew Emma would be finishing up breakfast and getting ready to walk out the door to school. Noon, I wondered what she was eating for lunch. 3:00 p.m I pictured her running out of her classroom. I found my emotions conflicted, I was happy that we are getting closer to finishing Chase’s therapy of stem cell transplants but we will not know if that is the end of therapy until we do his MRI at the end of his third transplant. Then I found myself upset at the thought this has been our lives for nearly 7 months. I am devastated I have missed so much time at home with Emma. I am worried about how this all will affect both of the kids as we try to fight our way through this journey. I know there is no answer and I am certainly not mad at God. I am simply…upset, when I find my emotions getting the best of me I take a moment and put things in God’s hands. He is far more equipped to handle this journey than anyone else. I remind myself of the good times, the times where Chase grabs my face and tells me he loves me, the times that I get to simply hear Emma’s voice on the phone at the end of the day. Then a moment will come that will knock me back to my knees. Today I was washing laundry and found one of Emma’s princess pajamas in the wash…it stopped me dead in my tracks. I held it and smelled it wishing I could embrace my beautiful daughter, I realized how much I missed seeing her clothes in the laundry. Later on I was washing dishes and found Marc’s coffee mug at the bottom of the sink and I missed him. Those are the moments that break me and I need to rebuild from.
Tomorrow we start again, hospital check in, pre-hydration, chemo, stem cell transplant and theotepa showers. Then we wait patiently for Chase to recover, we get him through one day at a time…and for Marc and I… I think we get by one moment at a time.
Finally, people have been so wonderful with their offers to help us around the holidays. I am very thankful but want you all to take care of your amazing families…don’t let any moment pass you by. Decorate your tree, drink hot chocolate, write letters to Santa and make memories. This is the first year Emma has not asked Santa for anything, I keep asking her what she is going to ask Santa for and she simply says, “I don’t know momma”. The reality is that all she wants for Christmas is “normal”. With that being said we are committed to keeping the kids in the school that they know and for those of you who asked to help I thought this is one way you can help that would not take away from your own family. The Arizona School Tax Credit for Individuals is an opportunity to choose how you want your tax dollars to be spent. An Arizona tax credit (as opposed to a tax deduction) is subtracted directly from the income tax owed to (or withheld by) the state of Arizona. This is a dollar-for-dollar tax credit, so for each dollar you donate your tax liability is lowered by that amount. So basically, for every dollar you donate, you will get the money back with your tax return, up to your state tax liability. It doesn’t cost you anything…it’s like a loan until you get your tax return. Married taxpayers filing jointly can donate up to $1008 to the individual account and an additional $1000 to the plus account. When filing singles can donate $500 to the individual account and an additional $500 to the plus account.
It is easy to donate. Go to https://www.ibescholarships.org and click Donate. Designate funds to Emma Lock at Castle Hill. The Institute of Better Education will provide a receipt by mail for you to file with your taxes in order to get your money back.
I thank you all for your continued thoughts and prayers and thank you for making my difficult days less difficult.
It is hard to believe it is already Thanksgiving. As our new “norm” seems to be, it has been a whirl wind week…that all began last Thursday.
As Marc and I began to talk about what we were going to do for this week our plans quickly evolved and changed. Emma is out of school this week for Thanksgiving break which meant Marc would need to take the week off as well. Emma wound up getting sick (again) with a high fever. Despite the fact her fever was going down she could not be around Chase for 7-10 days because of risk of transfer of the virus. I had not seen my beautiful Emma in 3 weeks and my heart was aching for her. I spoke with Marc and threw out the idea of me taking Emma on an “adventure” knowing that she would not be able to be around Chase during the week. I wanted her to remember a time during this journey that was special, a time where she smiled, a time where she played and had fun with her mommy. I did not want her to look back at these times and remember the fact that I was not there as much as I wanted to be. The idea quickly evolved, we had a trip to Texas to go to Md. Anderson for Chase’s annual check up last July that we never made it to because of Chase’s relapse. Usually, we would have let the travel vouchers go. We have done it time and again, Chase gets sick and we have to cancel. This time we decided to do something different. We used all of the vouchers to book a trip for Emma and I to have some mommy and Emma time. My only requirements for the trip was that I did not want it to be somewhere that we usually go together as a family. I did not want it to be a reminder to Emma that we were once again separated. After a lot of thought Marc came up with the idea of Emma and I heading to San Francisco, a short plane ride but lots of fun things to do with Emma. At first I was very excited thinking of spending one on one time with Emma, making memories and being on an adventure. It was not an easy decision to be without Chase but I knew that Marc and Chase needed some time together as well. If I am around Chase clings to me…and he needs to cling to Marc as well. I did not want it to be about me “leaving” Chase but rather me “going” to Emma. This time has been beyond difficult for her and she is my baby too. She is a little girl that needs her mommy, and I am not there like I would like to be. Three years ago I would have been to afraid to go anywhere without Marc. I would have never gone anywhere without Chase…but now we make decisions as they come. None of them are easy decisions, just the best decisions we can make at the time. I am no longer afraid….at least not of the things I used to be afraid of.
Marc and Emma came up to Phoenix on Saturday and Emma was not allowed on the floor so Marc and I did the trade off. My heart ached as I gave Chase a hug and reassured him that I would be back before he knew it. As I walked out of the hospital my heart sank into my belly and tears welled up in my eyes. I had to quickly change modes so that I could be the mommy I want to be for Emma. I ran and gave Emma a huge and hugged her till she screamed “momma, I know you missed me!”. The first night was grueling and as the minutes ticked by I found myself watching the clock wondering how Chase was doing, how he was feeling, how did he do taking his meds etc. As Emma drifted to sleep in my arms my anxiety grew and I felt like I needed Chase in my arms as well in order to fall asleep. I tried to force my eyes closed and tried desperately to sleep but I just could not shake the feeling of panic. I kissed Emma and told my mom I had to walk to the hospital just to watch Chase through the window. I wanted to know he was sleeping, I wanted to touch his head….I wanted to swoop him up and rock him on the rocking chair….to drift off to sleep in each others arms. My heart raced as I walked through the halls. When I got upstairs I put on a mask and a gown hoping Chase would not recognize me if I walked in. I peered through the window and saw him sleeping. I slowly crept in and I am sure Marc thought I had pretty much lost my mind dressed in disguise wanting to simply touch Chase. I put my hand on him, gave him a stroke down his back and stood there…not knowing what to do…wanting to swoop him up but knowing it was not fair to Chase. He was sleeping, he was safe, he was with his daddy…it was me who needed to let go…needed to give up control….to Marc who takes amazing care of him….to God allowing him to work in our lives. I touched his back one last time and said goodbye.
Knowing how it felt to be so close to Chase, but stop myself from running over to his room let me knew that I too needed to take this time with Emma. Focusing just on her, not thinking about running over to Chase’s room….stopping myself from having the ability to do so. I took a breath and let go….
I noticed an immediate difference in Emma when she woke in the morning she was sad and had tears in her eyes. She said “I just want to see Chase”. She does not understand why she was able to go see him before in the hospital and is no longer allowed on the 7th floor BMT unit. I tried to explain it to her a million different ways but she simply does not understand. All she knows is that she is desperate to see her brother and WANTS HIM.
On our way to San Francisco Emma talked about Chase, talked about missing me…she needed those moments to be heard to know that I am listening. We have enjoyed our time here in San Francisco and I have tried to make every moment with her count. We have gone ice skating, went on searches for Christmas decorations, and had a lot more adventures. Many times during the day I will see her face fall once again, when I ask her what is wrong I already know the answer but it never takes away the pain when I hear it from her mouth, “I just wish Chase could be here too”.
Someone gave me the suggestion of taking dollar bills for Emma to give to the street performers. WELL, Emma is now on a mission to give to all the homeless here in the city. It has been a very good teaching moment with her. Yesterday, we were walking the busy streets of Union Square and a man laid sprawled in the middle of the walkway on one of the major lines of walking traffic. People walked past him, not even looking down. Some even walked over him, Emma was perplexed and I could tell that she could not understand why nobody was helping him. We stopped and asked him if he was okay, Emma quickly tugged on my arm and asked for money to give to him. He said he was hungry so I reached into my pocket and handed her five dollars. I do not know the mans story, I do not know what led him to that point…but it is not my position to judge it is my position to show Emma to always have a kind heart…free of judgement. Emma said we had to get lots of money so we could give it to people and I tried to explain that is very kind but there are things you can do even without money. You can acknowledge them and ask them that they are okay. No matter what position someone is in, it does not change the fact that they are people…that need not be forgotten. Later on, we went to Girdelli Square and Emma picked out a 3 chocolates to save for later. After that we continued on the the sandy beach front. I pointed out an older lady who was homeless and bathing in the ocean. She tried to discreetly get dressed on the beach and Emma was surprised some people don’t have a place to take a warm bath. Her eyes shifted down and she reached into her pocket. She asked if she could give the lady one of her chocolates and I said “ABSOLUTELY”. She kindly walked over and handed the lady a shiny wrapped chocolate square. Emma came running back to me with a grin from ear to ear screeching “she liked it!”. Latter on as we walked through the city another woman was sitting on the corner and Emma gave her two dollars and the lady said “please stay in school, I wish I could be in school.” Emma learned that school is a privilege and some want to go but cant…what a good lesson.
Today will not be our traditional Thanksgiving, we will not gather around a table as a family, there will be no turkey. Our gifts this year are different, our gifts are the lessons we learn from others, seeing people that don’t have and learning how we can make a difference..and remembering that we are blessed despite our circumstances. It is about the little moment, holding hands, smiling, knowing we will all be together again soon.
Chase and Daddy have been doing well. Chase has been so brave as he had to undergo several tests in preparation of being released. There was a lot of discussion about what to do with Chase and his need for nutrition. TPN (IV nutrition) vs NG tube (nasal feeding tube) was discussed a lot. The final consensus was to reinsert his NG tube to allow his liver a chance to rest and for him to use his gut again. My sweet brave Chase sat very still knowing what was coming, his body shook in fear anticipation but he was brave and overcame another trying moment.
Chase and daddy were finally released yesterday. I use the word released loosely because he is confined to the room at Ronald McDonald House and is only allowed out with a mask for trips to the clinic. He is not even allowed outside unless it is to go on a car ride to view things from his window. He needs to be back in clinic in a few days and will be readmitted on Wednesday. It is not the break we were hoping for but we have to take blessings in whatever forms they come in. If he starts Wednesday that means that we are one step closer to finishing sooner.
We appreciate everyones love and support during this time. We love to have visitors because it can get a big lonely in one little room but doctors have advised us no visitors from this point out. Chase is at a time of extreme risk, doctors reminded us that children die from virus and infection during transplant and we are in the midst of cold and flu season. As parents we understand that there is a need for balance, isolation vs. being a child. However, there is a time for everything and now our job as parents is to keep Chase safe. The time for him being able to see people and be outside etc will come…but we right now we need to focus on keeping him safe during this delicate time. We are in the beginning and he still needs 2 more transplants. We have to keep him safe during that time to be able to get him home and have normal once his body is ready.
We thank you for wanting to come see Chase but for now we are kindly asking for no visitors.
This too shall pass…. he will have his time to be a kid, to run outside and play, but we just have to get him to that point.
Happy Thanksgiving, my love to you all!
I humbly ask for your support. Please share this link with your friends and ask for others to consider voting for Emma. At a time that so much is centered around her brother it would be so great for her to feel special. You can vote as many times as you want until December 20th.
I thought I would be more prepared going into treatment this time because we had already been through chemo before. I learned quickly during the first 3 treatments that I had NO idea what we were in for. The side effects were so much worse and the length of stay in the hospital was much more grueling. I was a bit worried to go into BMT (Bone Marrow Transplant) because I had heard that it was even more intense. Even after anticipating what it was supposed to be like I have learned yet again that I had NO idea what things would truly be like.
When Chase was on his 3 rounds of chemo he would have some good days and then hit a wall. His counts would hit zero, he would quickly be put on a pain pump and TPN. He no longer wanted to play, did not want any light in the room because it “hurt”, and was hardly able to get out of bed or walk. I thought that the day Chase recieved his stem cells infusion was going to be a magical and special moment, but instead it made him so sick during the process. The next time that Chase required a red blood transfusion he saw the nurse come in with the red blood and said “NO NO it tastes like mud”. I had to explain to him that it was regular red blood but not his stem cells. Once Chase hit zero I was waiting for us to hit a wall and he never really did. He was still up during the day, playing and smiling and did not mind me opening the blinds a bit to get some sunlight in the room. What I have learned is that there are higher highs but also lower lows. When he crashes, he crashes quick and hard with little to no warning. A few nights ago he woke up in the middle of the night with a nose bleed, we tried to clamp his nose twice to stop the blood out of both sides of his nose yet the blood kept on coming. Because there was so much blood flowing it quickly drained down his throat and into his belly. Before I knew it he was vomiting blood while blood was still coming out of his nose. It was a lot of blood and I tried to remain calm and reassure myself that it was from the drainage into his belly, but all of my internal mommy alarms were blaring. The vomiting and bleeding went on for about 2 hours and I kept asking the nurses “does this happen, is this okay”? After multiple attempts to stop the blood and being up from 2 a.m to nearly 4:30 am they packed Chases nose. Poor little buddy sat so still despite the discomfort. After that Chase could not fall back asleep and was absolutely exhausted all day long. The good news is that he is still able to walk to the shower and is playing during the day. The nights are always rough because the fatigue starts taking a toll on his body, allowing the bad side effects of this process to seep in. Two nights ago Chase spiked a high fever ad the room was quickly a buzz with several nurses and a phone call was made to the doctor. Turns out this is the only fever that could be seen as one that is okay because the doctor said this happens when children start engrafting their cells. Sure enough the next morning his ANC was at 40. Although 40 is not a high number…it is above zero and it meant he was moving up. On Thursday morning Chase was at 285 so YAY cells.
I have also learned that BMT is a whole new way of life and Marc and I will have to make this a lifestyle in order to make sure nothing is missed. In addition, these restrictions are not just during treatment but for 6 months to a year after! There are so many restrictions it almost seems overwhelming, just a few things of the many pages are:
- No parks, zoo’s, malls, churches, movie theaters or any place that would have a crowd. I was used to avoiding grocery stores, and places with lots of people the first time but we always thought “open air” places were okay…this time that does not ring true.
- no going out on windy days
- No animals, other than our dog, ANY time he touches Bella his hands have to be sanitized.
- No restaurant food, I learned this the hard way because one night it was late and Chase wanted a hotdog. I knew I should not get it from a fast food place but found a nice restaurant I could get a hotdog at. On my way back up to the room (hotdog in hand) the nurse stopped me and said I could not bring in ANY food from the outside for Chase. I had to leave his hotdog and tell Chase they were closed….poor guy cried for an hour. This is also hard because Chase has little to no appetite and every once and a while he will have a craving…like a Starbucks Frapachino and he is simply not allowed to have it. All food has to come from room service from the cafeteria prepared under VERY strict conditions. It is heart breaking to hear him cry because he wants something he simply can not have.
- No leftovers, all food must be prepared fresh and heated to determined temperatures AND must be eaten within 1 hour, if not it has to be tossed.
- No berries, no lunch meats, no un pasteurized products, no soft cheese.
- NO SHARING, he can not eat out of the same cereal box, chip box etc as the rest of the family, in fact they suggest only single serving boxes of cereal and other foods that come in a larger bag.
- There are also several restrictions for our home, fridge must be cleaned out completely with bleach 2 times a week. Floors have to be cleaned every 3-4 days. Nothing allowed on countertops. We will also be using a lot of a bleach wash (1/6 bleach and the rest water) for countertops, sinks, door handles etc. Any time someone in the family takes a shower or uses the bathroom the shower or toilet must be cleaned before Chase uses it.
- There are so many restrictions that I can not even write 1/4 of them.
In addition I had a long talk with the Bone Marrow Transplant transplant team yesterday. I was hoping Chase may get a few days at home in Tucson and the answer was emphatically NO. It does not look like we will be released to Tucson at all during this process. They already have a start date of his next admittance of December 4th. There are still several things that must happen before he is released so we hope he can at least enjoy a few days out of the hospital this round. With all of the new restrictions it will be tough at Ronald McDonald House. Because we are not able to use any of the communal areas that means we will be pretty much be confined to the room and there is not an outside balcony that I can take him on to get a bit of fresh air. He can not eat any of the food provided in the kitchen or the meals that come in and we have a VERY small kitchenette that we will have to learn to cook in to insure his meals are within guidelines. No doubt it will all work out, we are just going to have to learn a new way of doing things. The doctor said he can not play at the park but perhaps we can stroll him around in the stroller, as long as he does not touch anything or get to close to any birds etc. So we will find a way to make his time out special.
Ever since Chase was admitted he has been on “contact precaution” which means that any nurse or doctor entering the room is fully gowned wearing a mask and gloves. This also means he can never leave his room. I can tell he is really missing having playmates. He has finally made a friend named Aroroa in the hospital and she is LOVLY. Every once and a while she will wave though the window and it absolutely makes his day. Yesterday Aroroas brother was in visiting and Chase saw that he had an IPAD and he quickly put down what he was doing and screamed “Come in and play IPAD with me”. Before I could answer he is yelling, “Mom get my ipad we are going to play”. Words can not explained how it felt telling him that his new found buddy could not come in the room and play with him. He cried and said “I just want a friend”, I told him that I would play with him but it is just not the same. Later on I was able to get a pair of walky talkies that so he could talk to his friend Aroroa but he said “no, I just want her to come in and play.” ) :
In the next 12 months we will be playing a delicate balancing act of trying to find ways that Chase is able to simply be a kid and keep him safe.
The doctors and nurses have made it clear that even when his counts are up a fever can be LIFE THREATENING.
I have always been a neat nick before but I don’t know how this process does not make you completely crazy about germs. I already find myself a little nervous when I leave the hospital, not wanting to catch a bug that I could bring back to him.
Today I focus on the positive, Chase is still up and walking to the shower, still smiling, still laughing and still trying desperately to be a 5 year old child. God will work on all of the rest.
My heartfelt love to you all.
There is a lot happening on our end. We seemed to have gone from 0 to 100 in two seconds flat. Chase had been doing good this week and I began to wonder if perhaps the horrible times would miss us by a hair. Then yesterday he took the dive doctors were expecting. On Wednesday Chase’s ANC was looking great at 8000 and by last night they had plummeted to zero. The mouth sores have returned and I have learned the true meaning of mucusitis. At first I thought it was just the sores, but this time around Chase also has thick mucus in his nose, mouth and throat which causes him to throw up. Chase’s body is achy and he is having trouble standing or walking anymore because of the pain. Last night as we waited for the PCA (pain pump) to arrive I rocked and sang to him to try to bring him comfort but all he could say is “my whole body hurts so bad.” I could not have been more relieved to see the nurse walk in with his PCA and within a half hour it was able to give him enough relief that he could sit up in bed once again. Today the side effects of chemo are really wreaking havoc on his belly and he is pretty woozy from the pain meds. We have spent a majority of the day snuggling in bed while he sleeps on and off. The lights in the room are causing him pain so we are living in the dark once again. Doctors say he looks really good, which worries me to think “if this looks good what does bad look like”. The reality of knowing that it is going to get worse before it gets better pelages me during the night. Now we patiently wait for his counts to come up and let the stem cells do their work. I continue to pray for Chase’s comfort and ultimate healing here on earth. Marc was going to come up this past Thursday but sadly he and Emma both caught a virus this week. With Marc being exposed to a virus he could not be around Chase so I will stay an additional week and pray everyone is well by next Friday. Because of the virus I have not seen Emma in 2 weeks and I miss her so much my heart hurts. I hope she understands that I really want to be with her and that I love her.
Thank you for those who continue to follow our journey and who lift us up in prayer…God is Good.
For those of you who have been praying for Arorora I wanted to let you know that she is doing okay, not great…but okay. She spiked a fever of 105 and doctors were really trying to manage her pain. Chase is still patiently waiting for her to come back up to the 7th floor and yesterday asked if we could go and walk by her room. Sadly, he is not allowed out of his room while on BMT so I tried to distract him so he would not feel sad about it.
Thank you all.
I have wanted to update sooner but it has been very busy on our side. Wednesday was check in and Chase started pre-hydration. First thing Thursday morning he started high dose chemo, carboplatin began at 8 a.m followed by thiotepa at 2 p.m. They opted to remove Chase’s nasal feeding tube because he can not have any occlusive tape because the skin can not breath and the thiotepa will burn his skin. Chase was not pleased to take it out as he has finally gotten used to it and enjoys the fact that all of his oral meds are usually pushed through his nasal feeding tube. Once the thiotepa started I could tell that Chase started feeling yucky. At 9 p.m we began the bathing every 6 hours to avoid the thiotepa burns. The process takes about an hour from start to finish, between scrubbing him in the shower, removing the old gauze from his broviac and doing a sterile dressing change. We also have to change all of his bed linens and his blankies. I find myself laying awake at night wondering if I washed well enough behind his ears or under his neck. With that being said, he only has 3 hours between shower and in that time we are taking vitals and doing a lot of oral meds.
So far our time in B.M.T (Bone marrow transplant unit) has been AMAZING. The doctors, nurses and of course child life have been wonderful. They take the time to talk to Chase and he is definitely warming up to them. We have been assigned a one to one nurse while we need to do the thiotepa baths. This means that the only patient the nurse cares for is Chase, so she stays right outside our room and is available immediately. It has been hard to wake Chase in the middle of the night and early morning to shower but last night we the nurse said that she had never seen a thiotepa bath go so smoothly…YAY CHASE!!!!!
Doctors expect that Chase will start to feel the very bad side effects on Sunday or Monday and on Monday he will receive his stem cell transplant. Chase has been doing better than expected but I do ask for special prayers for one of the meds that Chase has to take twice a day. The ursodiole protects his gall bladder but it can not be changed to a pill form (which Chase does great with). This is the one thing that has caused tears, the taste is strong and with Chase’s nausia it is very difficult for him. We have tried different tricks to make the process easier but he is throwing up his doses. Please pray we find a way to make this easier on him.
I also wanted to add a little something to this update. I have received so many kind messages saying that I am strong and I wanted to share something about that. The first thing that I have learned is that Chase is so strong and goes through this process with such grace and love and that is a constant reminder of the person I want to become. The second thing I wanted to add is that you are all that strong! When your child has been up sick all night and you stay up to cuddle them….you are that strong. When you have a newborn who is up every 2 hours to eat for several months and you smile when you pick them up, despite being sleep deprived….you are that strong. When you smile even though you want to cry when you drop your child off for their first day of school….you are that strong. When your child comes home with their first heartbreak and you hold them…wanting to take away their heartache….you are that strong. When you happily give of yourself because now your child is the most important…you are that strong.
We were blessed to know a friend who was diagnosed with cancer that was only given several months to live. Yet he was strong and lived with grace…when asked “how do you do it?” he responded, “I do not know how to explain it except to say, we are uniquely designed for this”. God gives us what we can bear, at times I know I have said “Thank you for the vote of confidence God but really….you really think I can do this?”. If there is something in your life that you are unsure you can do…go out and do it…because you are that STRONG!
There will surely be moments when I brake down, moments when I need a good long cry. I have learned that is okay…when I am with Chase and he needs me, it is not the time. When I am home with Emma trying to rebuild moments…it is not the time. The time will come when I can get them through this and I wont be that strong….and that is okay….because as our dear friend said “we are uniquely designed for this”.
We had a very nice time while we were at home. Our neighborhood was kind enough to rally for the kids and set up trick or treating on the 30th so the kids would not miss out (thank you Tiffany Brock). The kids had a blast, they were the only kids out that night but the neighbors went all out, dressed up, decorated their houses and were ready and waiting for us. Chase has a great time but wound up getting pretty tired and nauseous. That night Chase and I had to drive to Phoenix for testing on the 31st. It was a long drive and Chase felt pretty crumby. We wound up pulling into Ronald McDonald House at 11pm and he was wiped out. In the morning we headed to clinic for labs and then we proceeded to his neuro cognitive exam. I truly did not know how the test would go because he felt sick and his body was achy. The doctor was great and I am not sure how she did it, but she was able to get him to separate from me in order to do the test. I sat right outside the door and eagerly waited. About 2 hours in he began to have pain so I came in to give him some meds. I did not think he would last long after that but he made it another two hours. I was so proud of him, he just got into school mode and went right into “work time”. Chase has had wonderful teachers who have made him excited to learn and work. When his test was complete we headed back to clinic and then headed over to the pharmacy. It was a long day and we did not get back into Tucson until after 8pm. If it was not for our neighbors setting up trick or treating the day before he would have never made it out to trick or treat because he was just to tired on the 31st.
We enjoyed Thanksgiving dinner and Emma helped with every part of dinner. She helped me clean the turkey , made him dance (family tradition) and made pumpkin pie from an actual pumpkin. They were delicious and turned out even better than I thought, they were honestly the best pumpkin pies I have ever had. Thanksgiving dinner was amazing but sadly Chase was not feeling well enough to eat.
A few days later we decorated the house for Christmas. Chase enjoyed this a lot and really got into the festivities. Both kids helped hang all the ornaments on the tree while listening to Christmas music. The beauty about kids is that they don’t care what the actual date is, they are just happy to celebrate.
As the days ticked by and we got closer to leaving for Phoenix it was difficult knowing we would soon leave our home again for an undetermined amount of time. I packed up with the knowledge that Chase may not be home for several months. Needless to say my car was packed to the gilds. On Tuesday morning my heart was heavy as I got Emma dressed for school knowing I would have to kiss her goodbye for 2 weeks. Chase got down from the car to drop his sister off at school and even attempted to stand on his feet in order to give her a big squeeze goodbye. It broke my heart knowing that they would not see each other in a very long time. Then it was my turn to give my princess a hug and a kiss and tell her I would be back as soon as possible. After that Chase and I started our drive to Phoenix so that we could meet with the BMT (bone marrow transplant) team for our consult and consent signing. Jennifer from Child Life was there to great us and brought games for Chase to play while we had our meeting. It was hard to hear about the side effects of treatment, although some things we have heard before it is never easy to digest. After we went over the potential long term side effects of treatment we started to talk about what to expect going into transplant. There were several moments that broke my heart. The days are very tough the drugs are tougher, and the schedule if rigid….well Toto it is safe to say “We are not in Kansas anymore”. On day one Chase gets a nasal swab (which he really does not appreciate), labs, pre hydration and a chest x-ray. Day two starts the high dose chemo, for those of you who are unfamiliar with the process Chase will essentially get 1 years worth of chemo in a matter of days. The chemo is designed to completely wipe out his bone marrow. The dose is so high that his body would never recover, which is why he will receive the rescuing stem cell transplant. Day two will bring two additional drugs, one of which is excreted through the skin at toxic levels. Chase will need to be bathed every 6 hours, even through the night. It must be a thorough wash, armpits, ears, and neck folds must be washed carefully. If not washed thoroughly Chase would get third degree burns from the chemo excreting through his skin. They also warned me to be careful in hugging and handling him because I can get third degree burns just from touching him. As any mother knows, this will not hold me back from hugging and cuddling to Chase’s hearts content. Along with being woken up to shower, he will also be woken up at 4 a.m for a weight check. The reason it is so rigid on the timing is because that is the time that his liver works strongest and it will essentially weigh his liver. On Monday after several days of chemo Chase will receive his own stem cells that were gathered after his first dose of chemo to rescue his body from the bone marrow depleting treatment. He will then stay in the hospital for several weeks waiting for his body to recover. The doctor could not stress enough the potential of Chase catching a virus and how it could wind him up in ICU. For anyone that will be in contact with our family during this time, please let us know if you get a virus so that we do not come around Chase during that time. Meaning if Emma is around someone who is sick and then Marc comes to Phoenix to be with Chase he could potentially bring a virus in to Chase. Marc would not even need to be very ill, Chase’s immune system is not able to fight off germs that an average person could and germs could even be brought in on clothing. I asked the doc how long it would take for Chase to start a “typical” life after his 3 tandem transplants I.E go to school and play-dates etc and we were told it could be anywhere from 3 to 6 months because even after transplants a fever could put Chase in the hospital.
I was emotionally drained after the meeting and the feeling continued throughout the night knowing that we would be checking in to begin this afternoon. At 1:00pm today I looked at Chase and said the hardest words ever, “okay Buddy, it is time to go”. We slowly walked to admitting and I saw Chase’s face turn solum. When we opened the door to our room on the BMT floor Chase’s face turned a bit. The room had Christmas decor on the wall and a cute Christmas garland hanging over his bed. It took me a while but we finally got the room ready, complete with Christmas bedding and a small Christmas tree. Chase was an absolute trooper during his nasal swab and chest X-Ray. He even sneaked out a couple of jokes with the nurses. When our nurse came in carrying containers of his feeding tube formula he looked up at her and say, “oh look you brought lunch!”. I hope he sleeps well tonight as we begin showers every 6 hours tomorrow morning.
I thank you all for your continued support and humbly ask for continued prayers.
My love to you all!
When Emma is having a hard day and focuses on the one thing that went wrong instead of all the things that went right, I sing this song to her.
Keep it on the sunny-side
Always on the sunny-side
Keep it on the sunny-side of life
Today I chose to sing that song to myself….
The night was long, I was up a lot getting Chase meds, potty breaks, and feedings. However, Chase woke up feeling better than he did yesterday. We got dressed, packed and ready to go to the Zoo. Chase adamantly said he did not want to see any animals because he was not feeling well enough. I told him that was up to him and if he wanted to he could just sit in the stroller for some fresh air. Emma was over the moon and gleefully ran to see each exhibit. Emma encouraged Chase to check out the fun animals, at first he simply said “not thank you”, but soon her encouragement coaxed him a bit closer to taking a look at things. Eventually he decided to take a look at the stingrays, take a ride on the carousel and even took a camel ride. After a few hours at the park we headed of to get some lunch. Chase was not feeling up to getting out of his stroller so I gave him his pain meds and anti-nausia meds and focused my attention to Emma’s food order and and getting her something cold to drink. All of the sudden I hear Chase say, “oh no, I threw up!” When I looked down in his stroller there was vomit on his pants, and filling the bottom of his stroller. I forgot about the fact we were in the middle of the restaurant and just wanted to get Chase cleaned up so the smell would not make him more nauseated. In the middle of the restaurant I quickly stripped him out of his clothes and wrapping him in a blankie. I usually bring an extra set of clothes but with our new routine of taking his meds and feeding equipment of course I had forgotten. Chase was so confused and kept saying “I do not even remember throwing up, maybe I was sleepy when it happened.” I to was confused because he did not get any on his shirt, just his hands, pants and bottom of the seat. I asked Chase, “did you throw up out of your mouth?” and he said he had not. In taking a closer look I noticed that when I gave him his meds through his feeding tube I forgot to cap it off, the bile from his tummy ended up coming up and out of his tube….oh my I still have some learning to do. On the way home I was not thinking straight and accidentally rear ended someone. EEEEEK, I immediately felt horrible and began to think, “why didn’t I see him, what was I thinking”. Then I had to stop and think of the song…
Keep it on the sunny-side
Always on the sunny-side
Keep it on the sunny-side of life
Now it was time to practice what I preach. Sure the night was long but Chase felt better today than yesterday. The mess in the restaurant was just that a silly mess. The sunny-side was that Chase did not actually throw up, which means hopefully he is beginning to tolerate his feeds better. I hit someone in the car…but his car appeared undamaged and my car was fine….keep it on the sunny side…it could have been worse.
I take joy in hearing the kids banter back and forth and have them both in my arms to sleep at night.
Things may not be perfect… but the small things should be kept just as that…small.