Sorry I never updated since Dan’s last appointment. Life has been super busy with Dan and the kids the past month. Carson graduated from pre-K and had a bunch of festivities, both kids have had birthday parties to attend, Carson also had t-ball which finally ended last week (thank goodness for a break), and Dan was admitted again that day of his last appointment due to his symptoms and complaints. The CT scan showed the brain tumor was stable but with his back pain being unbearable, they wanted to get an MRI of the spine and the brain and the only way to do that urgently was to admit him.
So he spent another 5 days at Hopkins trying to figure out the cause of his pain while I juggled work, the kids, and life in general! His MRI scan again showed the brain tumor area was stable which means there is no tumor growth at this time although still some swelling hence why he still has to take the steroids. The spine MRI showed 3 compression fractures in his back and we have no idea how that could have happened. And since it was a holiday weekend we had to wait for someone to come and fit him for a brace. He has to wear this lovely TLSO brace that looks like a body cast. He is not happy and hates this thing.
The best part (if you can even say there is anything good about being at the hospital) was the visit he got from our dear friend Jody. I have not seen Dan smile like he did that day in months when he saw her walking into the room. Jody and Lee moved to Seattle for her job a few years ago and we only get to see them a few times a year so while she was here on business, she came by for some hugs. I wish I would have gotten a picture of his face. I know she saw it too and it’s one of those sweet moments that will stay with me.
Once the TLSO arrived and he had a day to wear it and get comfortable, he was discharged. That was on May 29 and on Saturday June 2ndhe started home care (for the third time!). Our house has been like a revolving door between nursing, speech, OT, PT, and an aide coming in and out all week long but the care has been outstanding. We are using Bayada and I can’t say enough about the service and compassion they have provided to our family. I have seen such great improvements in his strength the last 2 weeks with PT coming 3x per week and I am sad that insurance can’t cover it much longer. The OT is very concerned about his wrist though since it’s in constant pain. And another new symptom this week is a pain in his lower belly/groin area. I am diagnosing it as a hernia.
So all in all things at home have been stable. He is supposed to have a follow up appointment either later this week or next so I should know more about his hernia and wrist soon. I told him last night that I dread going to doc appointments now. Getting him out of the house and into the car is not so easy anymore and whenever he has a new issue he ends up getting admitted. I am praying this time that it’s something that can be dealt with in the office.
I also wanted to add that Dan is so blessed with such great friends. They visit often to sit with him, talk about things other than cancer, play with the boys, and even play poker! Dan’s childhood friend Damon was also so kind enough to install a ramp on our house for easier access. Prior to the ramp I had to put in calls for help when it was time to get him in the car for appointments. Thank you Damon (and Brian and Chris) too!
I will end this post with one I recently put on Facebook. Dan getting cuddles from baby T. He loves it and it makes him cry and than it makes Tyler constantly ask “why you crying daddy?”