Journal entry by Rachel Smith —
Happy Friday!
I would call his first outpatient appointment a success. He was spicy as his usual. The child life specialist even said she was warned on how he greets new people 😂 . She was great with him. She had a Buzz Lightyear toy all ready and he was able to practice accessing Buzz's port and pretend to take his blood. Once it was Colton's turn, he was less than excited, but he did well. We do put numbing cream on the site prior to the visit, so he likely felt more pressure than pain.
His labs were where they expected them. His hemoglobin is still low at 9.0 (he was down to 8.3 in the hospital due to the bleed). They feel it is low due to the chemo more so than bleeding at this time. His weight was down only slightly. It is likely that the chemo is already messing with his taste buds, so just need to see what tastes the best to him. They actually do not feel the Vincristine will lower his labs much more, so that is reassuring. Right now, the most common side effect we need to worry about is constipation. The muscle weakness is something that will likely happen as treatment progresses, but nothing immediate. They do have PT/OT to also work with him on any limitations we feel he is experiencing.
We were also able to look ahead at his treatment plan and it is looking like his first scan will be the week of Memorial Day. We will then be able to see how well the chemotherapy is working and hopefully be able to remove the cancer.
It was hard to hear him say he was scared this morning before we had to leave. I wish I could make this better and help him understand, but I am not sure he would be any less scared. I tell him how brave he is, and he tells me he isn't. I found some books on the good ole' Amazon that I am hoping he will like about being brave.
Thank you for the continued prayers and support. It does not go unnoticed. Fun fact about Colton - he was born on the anniversary of Dravin's death. He has also been such a special little dude, that brought so much joy to a day that once reminded me of so much pain.
Have a great weekend!
I would call his first outpatient appointment a success. He was spicy as his usual. The child life specialist even said she was warned on how he greets new people 😂 . She was great with him. She had a Buzz Lightyear toy all ready and he was able to practice accessing Buzz's port and pretend to take his blood. Once it was Colton's turn, he was less than excited, but he did well. We do put numbing cream on the site prior to the visit, so he likely felt more pressure than pain.
His labs were where they expected them. His hemoglobin is still low at 9.0 (he was down to 8.3 in the hospital due to the bleed). They feel it is low due to the chemo more so than bleeding at this time. His weight was down only slightly. It is likely that the chemo is already messing with his taste buds, so just need to see what tastes the best to him. They actually do not feel the Vincristine will lower his labs much more, so that is reassuring. Right now, the most common side effect we need to worry about is constipation. The muscle weakness is something that will likely happen as treatment progresses, but nothing immediate. They do have PT/OT to also work with him on any limitations we feel he is experiencing.
We were also able to look ahead at his treatment plan and it is looking like his first scan will be the week of Memorial Day. We will then be able to see how well the chemotherapy is working and hopefully be able to remove the cancer.
It was hard to hear him say he was scared this morning before we had to leave. I wish I could make this better and help him understand, but I am not sure he would be any less scared. I tell him how brave he is, and he tells me he isn't. I found some books on the good ole' Amazon that I am hoping he will like about being brave.
Thank you for the continued prayers and support. It does not go unnoticed. Fun fact about Colton - he was born on the anniversary of Dravin's death. He has also been such a special little dude, that brought so much joy to a day that once reminded me of so much pain.
Have a great weekend!
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