June 29, 2015

By Angel Lock

6/21/2016 at 10:17 AM

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.

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