Journal

Weird things happen in the world of cancer. I have been feeling nauseous lately and did not know why. The other day I walked by one of our candles and it hit me. An intense waive of nausea, I immediately looked at the candle and remembered that the whole time Chase was sick we had candles that smelled like cookies, or toffee or vanilla and the smell brings back memories that make me feel physically sick. So now I am on a mission to find new candles as I can’t tolerate the old smell. Weird ha….

New chapter of life and now a new house smell. I think I am going to look for floral cents because they smell happy ; )

We have a new game called the “dinner table game” It is a stack of cards that encourage conversation at the dinner table. It is great and I would strongly recommend it. The funny one for tonight was the question, “What would you do if you won the lottery”. First we had to explain what the lottery was and Emma answered, “I would feed all the homeless people”, Chase’s answer was, “I would buy a rotisserie chicken”. hehehehehe Another question was, If your parents could change one thing to become better parents what would it be, Chase said it would be great if Marc and I slept less….what really…we barely sleep as it is. The game was super fun.

Well, its that time again. 13 days away from Chase’s MRI and there is no sleep in sight for this momma. I am usually not able to fall asleep until 10:30 and like an unwelcome alarm, by body wakes at 2 am and I am unable to fall back asleep. Usually I sit and lay motionless in bed listening to the kids every breath and every movement they make in bed. After several nights of this I decided to use my ninja skills to slither out of bed, careful not to wake anyone. Sometimes after laying in bed for hours unable to sleep I feel like I am going a bit bonkers. So today I decided to go ahead and write.

There has been a lot going on. First, my beautiful Emma has become increasingly protective of Chase as of late. It started when the kids were playing with a few other kids. One of the younger boys hit Chase and this sent Emma into a fury. She ran up to me and told me about the situation. I noticed the boys grandparents going over to talk to the boy about it. I tried to hang back a bit and let him resolve the issue while I checked on Chase. Of course Chase was standing motionless in the grass.

Making promises to a child that has trust issues…oofta bad momma.

I am very careful about making “promises” or telling the kids we are going to do something until we are actually there. I have learned from past experiences of the bottom dropping out on our plans…

Tonight Chase was sad because he wanted to watch Paddington the Bear out on DVD this weekend and did not get a chance to. It was 8pm and I “promised” I would have it loaded to his iPad when he woke in the morning. I know better than to “promise” for a child that is working on building trust….but I did.

So now I have been working on his Ipad for 6 hours! The movie just would not load. Someone finally suggested I download it to the computer and then plug in the Ipad so I am working on doing that now….

In happier news. Chase and Emma were super cute this weekend. They decided they were going to give Marc and I makeovers. Emma was the hairdresser and Chase was her assistant. They booked appointments for the two of us and then worked hard to set the stage. They moved tables, put out candles, eye masks and even had items for us to read while we were getting our makeovers.

We have a slight set back. Emma woke up with a fever of 102 last night and Chase’s MRI is 5 days away. If Chase catches the virus they won’t do this MRI. It seems like every time we get close to a scan someone gets sick. Please pray for his protection against this virus. Also, I humbly ask for your prayers that everything will go as scheduled on Tuesday and not run late. Our appointments are so close that if the scan runs late we will miss the appointment with the neuro surgeon and his opinion means the most to us. God is with us now and will be with us during this time. I pray for Chase’s comfort and peace for his appointments. I pray for amazing scans that will be BEYOND CLEAR and beautiful. I pray that God continues to bless our family with a lifetime together. Chase has already proved so many wrong, with the radiation to his brain and extensive chemo doctors prepared us for the possibility of Chase being below level academically and developmentally, they even have a calculation on how much the radiation could damage his academic ability. Chase is a constant reminder of Gods grace and the power of prayer and Gods healing hands.

We are all packed and just about getting ready to leave for Phoenix this morning. I told Chase we could spend the day doing some fun things before his scan tomorrow. I find myself weak this morning and at the verge of tears. I usually don’t fall apart at this point. I have been in prayer this morning and asking God for strength, weakness is not an option… I want to fight against the fear, anxiety and worry. I was listening to a song this morning that said, “God can turn dust into something beautiful”. Lord today I am dust…make me strong and bring Chase peace and comfort as he has to leave his home once again. I pray that you hold Chase in your loving arms when I have to leave him for his scans. I pray that you whisper words of peace and hold his hand every second I am not by his side. I pray that Chase would be forever rid of the beast we know as cancer.

Saying goodbye to Emma NEVER gets easier. She sees me pack my bags and she panics. I spent the morning rocking her in my arms and assuring her mommy is not going away like last time. Mommy will be home tomorrow. To say it is heart wrenching is not even close to how much her tears brake my heart.

It has been a while since I have posted an update. This summer has been busy and it has been difficult to sit down and write.

We started the summer by getting out of the heat for a bit. We went to Pinetop for a while and then headed out to California. The kids had a great time; we went to the beach, Lego Land and stopped at Disney for a few days. At the time Chase was doing great, his energy level was fantastic and he was doing great with the cooler weather.

Once we arrived back in Tucson he began to struggle. It seems to be a really difficult cycle. The heat wears Chase out and makes him physically worn our and in pain. So we were spending more time indoors. But that also means that Chase was not exercising his muscles and being active, which causes him to be more physically weak. When I try to get him out so he can get some activity even if it means going to a cool indoor place, just getting in and out of the car in the heat wears him out. He has begun to ask me to carry him most of the time.

Last night was a very long night. Chase woke up every couple of hours asking if it was time to go for his MRI. For our little guy who usually sleeps like a rock I know he was feeling anxious. Chase is already back in MRI, sleeping and peaceful. Today went beautifully, no delays and he stayed happy until he got back and was able to go into the gantry. The anesthesiologist was overly amazing. He showed Chase how to get the gas up and running and let him turn everything on and get it ready for his sleeepy time. Chase loves that stuff. Now we wait. We do not have a follow up appointment today so we won’t hear back until we receive a phone call from the oncologist. I don’t know if it will be today or early next week. So now we pray.

First things first, we received preliminary results from Chase’s MRI and they look stable. We are waiting to hear back from the neuro surgeon which may not be till the end of the week. This is good news and we definitely celebrate this moment with a huge sigh and an AMEN.

This does lead us back to the question of what is causing the pain in Chase’s legs and feet. The oncologist said there was another little boy that was experiencing the same pain after treatment. Turns out the endocrine discovered his levels of cortisol were low and he was put on a steroid to regulate his cortisol level. She said she would like Chase’s cortisol level checked but it would be for informational purposes only, she was very clear that she did not want Chase going on steroids and we both agree.

We also coupled the MRI with labs requested by the endocrinologist. She was amazing and called us shortly after the MRI when she received the results from the labs and his bone scan. Chase’s thyroid is functioning normally which is good, but does lead us back to the fact that Chase’s heat and cold intolerance is due to a damaged pituitary gland and nothing can be done for that.

I have been stricken with so much emotion these past few days. To the point that the smallest things will bring tears to my eyes.

I was shopping for school supplies the other day and found myself tearing up in the middle of Office Max. The thought of not having Emma and Chase with me during the day is overwhelming and heartbreaking. It seems like we just started summer and Monday is the first day of a new school year. The emotions are conflicting, I know I should be excited for them. Excited for the memories they will make, the friendships they will foster, the milestones they will reach…but somehow I struggle because I have a hard time knowing I will not see their beautiful faces every moment. Knowing that I wont be there when they have some of those adventures, I wont be able to see their eyes light up with excitement and worried I will miss cuddling them when they feel like they need me. Yes, I know…. school is only part of the day but I feel as though I am constantly playing, “catch up”.