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”. I missed nearly a year with my sweet Emma and she will be 9 in September, the days where she wants to spend time with me are going to slow down as she grows and wants to spend more time with her friends and mommy becomes a bit embarrassing. I want Chase to have more moments of normal with me, play time with mommy instead of mommy taking care of him medically. I want to slow down time…press the pause button and hold them….go back in time and hold them and be there the moments that I missed.
They both say I am not allowed to cry on the first day of school, so I am sure I will put a brave face on…then cry in the car when they are away. I try and not let the fear creep in, the fear that aches and pulls at my heart…the fear that I will not have forever with Chase. The fear that Emma will loose her brother whom she adores. When I have these fears I begin to pray and I find comfort. If only there was a way to never feel those fears again, but it is a work in progress, one day at a time.
As October approaches so does the 5 year anniversary of Chase’s diagnosis. Yes, it is a moment to celebrate, a moment to be so happy and blessed Chase is here and doing so amazingly well. 5 years ago many did not know if we would reach this moment…yet we have. It has not been without struggle, Chase has had to fight this beast not once but twice. Before I had a son with cancer I thought than when someone had beat cancer for 5 years that the fight had been won. Now that I live in this world I know some of the harsher truths. Many of the studies on survival are based on years survived after diagnosis. I wish those studies would say that with Chase’s cancer the chance of survival goes up…sadly it is the opposite. Marc once said, “you cant not know what you already know”. In some ways I wish I did not know so much about Chase’s cancer….the facts are enough to make my heart ache and not want to breath. Yet, I have something that keeps me breathing, keeps me smiling… that is watching Chase and Emma. Seeing how far Chase has come, seeing the obstacles he has overcome, hearing his infectious laugh and feeling the overwhelming love I have for him. Watching Emma’s soft and loving nature for Chase, knowing how much she cares not only for him but for everyone around her, watching her grow into a girl I am beyond proud of. All I ever wanted was for my kids to be happy and kind…she is one of the kindest souls I have ever met, she reminds me of the person I want to be. God is with us every day, battling with us, fighting those stinking statistics I have grown to despise. Reminding me with whispers and love that Gods miracles are endless and I want Chase to continue to be that endless miracle.
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. She also said that he tested negative for diabetes insipitus, so looks like we will need to make an appointment with the nephrologist to see how Chase’s kidneys are holding up. Finally we went over Chase’s bone scan, Chase’s bones are scanning at the age of a 4 year old. Being as Chase is nearly 7 1/2 his bone age is scanning 3 years younger than his actual age. This is a GOOD thing, it means that he has lots of room to grow. If a child is small it is good if his bones to scan younger because it means that he is not a small 7 year old, it means that his treatments and stress on his body has delayed his growth. Now that his body is not under the stress he should grow and has a lot of room to grow. A huge hip hip horary for that news!!!
So now we have some follow ups to do, but follow up appointments and trips back and forth to Phoenix is totally doable!!!
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.
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. He had been doing so well for the past 8 months and rarely asked me to carry him anymore but now it seems like he wants me to carry him because the heat makes him physically sick and miserable. This also means that when we do get out he is still not working his muscles and the cycle continues and the weakness becomes worse.
He also began to complain about bone pain again, mostly in his legs. I had been watching him closely and finally one morning he woke up in excruciating pain. I knew he had not had the time to wear himself out and we had not spent any time in the heat so I decided to put in a call to the oncologist. They oncologist set up an appointment for us to meet with them immediately. She did a physical exam and did not believe his pain was due to the neuropathy that he has had since his first round of chemo. She also checked his legs for muscle strength, she did feel concerned that his left leg seems a bit weak and we spoke about the issue at length. She decided that she did not want to take any chances and wants Chase to get an MRI of his brain and spine ASAP. A tumor on the spine can cause leg weakness and she said she did not want to take a chance of waiting for his scheduled MRI in mid August in case there is something going on. In my heart I really don’t feel like he has tumor growth on his spine, yet I understand her concern. We went ahead and scheduled an MRI for July the 17th.
If the MRI comes out stable we need to make another appointment with the endocrinologist to see how the heat may be affecting Chase’s cortisol levels. The test will not exactly give us a way to fix the issue; it will simply be for our knowledge.
We have also had a few other medical appointments for Chase recently. We saw the endocrinologist a few weeks ago and I was so happy with the new endocrine doctor. She was fantastic and scowered over Chase’s chart (which is very long) prior to us arriving. The main areas of concern were Chase’s growth, heat and cold sensitivity, and excess urination at night. In regards to Chase’s growth she ordered a bone age scan (which has already been completed but we have not heard results yet), and a full lab workup to see how his growth hormones are functioning. She asked us how we felt about growth hormone shots and we told her that it was something that we hoped we would not have to consider. She agreed with us and said that there is controversy over growth hormone shots for tumor patients. One side of the argument is that the growth hormones make ALL cells rapidly produce which can speed up tumor growth as well. The other side of the argument is that the growth hormones would not affect tumor growth. This is something that we hope to avoid and we made a plan with the doctor that as long as Chase is growing we will not consider growth hormones. The endocrinologist said that if Chase hits a point where his growth stops than we will re-evaluate. But at this point even the smallest bit of growth is celebrated. In regards to Chase’s excess urination they ordered labs to see if Chase has diabetes insipidus, which is a common side effect of the chemo agents Chase received. I really feel as thought he will not test positive for diabetes insipidus and if he does not then it will mean another trip to the nephrologist to check out Chase’s kidneys, which we already know sustained damage from chemo. We also spoke about Chase’s intolerance to heat and cold (this has been the major issue we are dealing with this summer). From an endocrinology standpoint this can be due to thyroid issues but his thyroid had been checked when we were released from bone marrow transplant and was in good order. Yet, we will be checking it once again. We both believe it is not a thyroid issues. That leads the endocrinologist to believe that it is due to pituitary damaged sustained during his initial brain surgery because his tumor was so close to his pituitary gland. In which case, sadly there is nothing we can do because his pituitary gland is just damaged. In breaks my heart because I really want to find a way to help Chase with his discomfort during the summer season but I am at a loss for what to do.
We also met with the endocrinology psychologist and she was FANTASTIC. The most interesting thing was Chase’s response to feelings. He has a huge vocabulary for how he is feeling medically and is easily able to express those, but when the conversation moved to how Chase was feeling emotionally Chase looked completely lost and looked at me several times and said, “I don’t get it?”. The psychologist explained that kids with long term medical issues hear the word “feeling” as a physical thing and lack the vocabulary for the emotional part of how they are “feeling”. She gave us some good ideas for how we can start giving Chase words to express how he feels emotionally and we have been trying it at home. We will continue to see the endocrine psychologist every other week in Phoenix until we can get in to the PTSD psychologist in Phoenix. There is not doubt the effects of Chase’s medical life have impacted him long term and we will do whatever is necessary to help him through it.
As for now, I still don’t have an answer of how to help break the cycle that has been our biggest issue in the summer. I try to encourage him to do physical things in the house, like roller skate or even just play a half hour of Just Dance on the Wii. It seems to be increasingly difficult to get out of the house at all. It usually winds up meaning that I carry Chase in 105-degree heat and lets just say that is pretty hard.
I ask for your prayers for some answers on how we can help Chase through the physical and emotional effects of cancer. AND of course that he remains cancer free and the MRI in a few weeks reflects a beautiful cancer free body.
Thank you all for continuing to love and pray for us on this journey.
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. I pray Lord, you hold Emma close and constantly remind her how much you love her and how much her mommy loves her, give her peace in knowing that mommy never wants to leave her….not for a moment. Let her find peace and happiness today and allow her to focus on school tomorrow. Please take away her worry for Chase and her anger towards cancer. Lord, I do not want her to be angry at cancer or our circumstances, I pray that she walk with grace and faith.
My heartfelt love to you all. In addition to humbly asking for prayers I also ask that you hug those you love and tell them just how much you love them.
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. Chase is doing above grade level work in Math and has made AMAZING strides with his fine motor skills and reading. AND when Chase lost his vision we were advised it would be good to start Chase out on a cain so he could use it to supplement his vision, we opted not to do that because we did not want to limit Chase, if you saw Chase now and did not know anything about him, you would never know he had visual imparments. God is Good!
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. When it came time they handed us a pricing list and asked which services we wanted done. Emma worked diligently on our hair and Chase ran around giving us snacks and making sure we were comfy. In the end it cost us $30 for our makeover but the cost was well worth seeing them play together.
Another story I want to remember is of a few nights ago. We were reading the bible and it spoke about how Jesus was King. Chase said, “I thought God was king?”. I told him that God is king. I tried to explain it to him like this, “an elephant is called an elephant and what is a baby elephant called….it is still called an elephant. Chase looked at me and said, “it would be easier if they used president and vice president.”
I also heard him accidentally mix up the pledge of allegiance with the apostles creed…it was to cute. He said, “I pledge allegiance to the flag, of the United States of America, They kingdom come thy will be done on earth as it is in heaven.” I could not help but light up in a huge smile.
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. When I asked him if he was okay he said nothing and then quietly nodded his head yes…with tears in his eyes. After a moment I notice Emma was crying with the boys grandfather so I went to check on her. Apparently the moment upset her even more than I initially knew. She said that the boy could NOT hit her brother because he has cancer….which quickly swirled into her sharing that he was in the hospital for months and she did not get to see him and she would cry at night for me. My heart broke as I held her. It seems like things are getting better…until they are not, and then things spiral quickly. When I tried to talk to her about it she shut down and simply cried…which in turn made me emotional. My poor sweet baby.. A few days later the kids were at a little show and one of the characters was trying to get Chase involved so he playfully took Chase’s hat. For those of you who know Chase, his hat is his comfort to cover his hair especially when new people are around. Again, Chase stood motionless and Emma lost her cool. She screeched, give my brother back his hat!” and in turn tried to take the characters hat. Oh my, then we had to talk to Emma about making sure that she allows us to defend Chase and told her that the character simply did not know that the hat was an issue for Chase. We told her that the character was an adult and she must be kind and respectful. Tonight while Chase was in the shower and Emma was in the bath I walked into a conversation between the two. Chase was telling Emma that someone had called him “bald”, Emma quickly snapped back…..”show me who it was tomorrow Chase”. I had to put the breaks on the conversation and remind them that many of the kids Chase’s age are not trying to be malicious they are just stating things as they see him but they are not intentionally trying to hurt Chase. I don’t know how to tell Emma she does not need to shoulder the pressure of always trying to protect him. Marc and I are here to protect them both. Yet, it seems like maybe this is part of the process that we have to work through together.
Chase has been making many physical strides. His stamina is exponentially better than when he started the school year. In the beginning of the year he was only going half of the day and was completely wiped out. Slowly we increased his time at school and he was thriving. The next hurdle to conquer was encouraging him to play with the other kids. To this day he will not go out and play at recess because he is afraid he wont hear the whistle (high pitch frequency). So he eats lunch and then goes into his classroom while the other kids play. I really wanted to encourage him to venture out because part of school is the social aspect. For many months at the end of the school day, several of the kids would go out and play on the playground and I would encourage Chase to play. He would be upset and just wanted to go home. So I told him we could just watch the children play. Chase reluctantly sat on my lap and we would simply watch. Then after a few months he told me that he would only play with me. So I would run around like a 6 year old playing hide and go seek with him. Now he is staying after school EVERY day to play with the other kids!!!!! This is such a huge feat for Chase. He has learned to trust a group of kids and for the first time EVER has a group of boy friends. It is amazing to watch them play because Chase is playing like a boy, not afraid of being hurt. The other day I looked at my watch and we had been playing after school for over an hour and a half! I know as the summer comes and the heat sets in his energy level will be hit hard, but we are playing as much as possible while we can.
As we make headway in some areas we fall behind in others. About 2 1/2 weeks ago one of Chase’s hearing aids broke and I was waiting on the pieces I need to fix them. Because I did not want to confuse him by just wearing one hearing aid I let him go without them until they were both able to be worn. I finally go the pieces I needed to fix his hearing aids and now we are having a battle about wearing them. He glares at me and says, “I can hear just fine without them and I don’t want to wear them”. It is hard sometimes to find the words to encourage him instead of him feeling like wearing them is a punishment. He is getting older and is definitely finding more of his own voice. If we have a doctors appointment he verbalizes his unwillingness to go, where as before he simply just went. He complains and says, “why am I the only one that has to do medical stuff?’. While in many ways he wants it all to simply go away, it is still constantly on his mind. His teacher does a weekly “Kindergarten News” letter, where she interviews the kids about what is going on that week. Many kids will talk about a birthday party that is coming up, or a playdate at a friends house. Chase’s comments this week were, “I will have to go to Phoenix soon for my MRI”. I literally have not mentioned the MRI, I never tell him about his MRI until the day we are leaving because I don’t want him to fret about it. Despite me trying to protect him, he realizes it is about time again and it obviously weighs on his mind.
I realize that this is all part of the journey. Honestly, how can I complain… we are all together. Chase is with us and we are blessed to have the opportunity to work through these issues. Yet sometimes it causes me to lay awake at night, wondering if I handled things right, wondering how I could have handled them better.
I thank you all for your continued support and love.
God has blessed me with you all.
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.
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 ( ;