Tuesday 03-01-2022

It has been a while since I’ve provided an update. Truthfully, I miss writing everyday. It was a way to get everything out of my brain, process some and move forward. However, the days I am having now are far different from a year ago. 

Chris and I were talking the other day about life. Looking back at Tom’s journey, we almost feel like it wasn’t that bad. Chris said it is like he feels it was too easy when we look at others’ journeys and how much worse it could have been. He said he often doesn’t think about it until scan time. He’s so scared and worries about the week and days of scans. I can’t say much because I do too but I think about it all the time. Every time Tom tells me his leg hurts, back hurts or he doesn’t feel good. I get a pit in my stomach and feel like, dear God no, please no. I don’t know if I’ll ever get rid of that fear of it. At least now, it doesn’t control my mind. 

Speaking of minds, I might go off on a bit of a tangent. Mental illness and challenges are not anything to be ashamed of. These things can happen to anyone and for any reason. The scariest is actually trying to deal with it on your own. I’ve been there where things are so dark and there is nothing but desperation and logical reason has fallen away. The only thoughts that seem right are permanent solutions to temporary problems. I think about that a lot. It is only temporary. 

Someone I care very much about has been struggling with depression and maybe some other mental challenges. She almost died by her own hand and thankfully God intervened and said not yet. She says she’s fine and it wasn’t intentional. However, I know it was and I know how that feels. You can feel it weighing you down, crushing and stealing away your light. I’ve been in the spot when the air is leaving my body and there is almost no turning back. I guess I’m not sure if it was guardian angels, God or some loved one watching over but it was like the strongest, softest warm hand pulling me back and stopping. I tell myself my dad is watching over me and comes to help when I need him the most. That’s what I believe anyway. He’s come to me in dreams, I see signs and feel his guidance. Don’t get me wrong, I’m still battling with all the intense rage, disappointment and cheated feelings I have for my dad and lack of relationship before he got sick and died; but I talk to him and count on him to watch out for me and help me find my way. If I could ask him to guide her I would. 

Although I understand the despair, I wish she could see herself through my eyes some days. Yes, there are qualities we don’t agree on but she doesn’t understand her strengths and potential. I think one of my strengths is the ability to see potential in tasks, people and situations. I like to creative problem solve and help others realize their potential. I feel like I let her down as we are not close like we were. A few of my strongest memories of her have lifted me up and I feel guilty and want to give that back to her. She has to want it too though; God be with her. It is a fine line between helping and hurting. It is like my overbearing parenting style sometimes - from Catherine lately, l’m her Smother. 

On the home front, I’m spending more time with the kids and I’m annoying Tom with homework and his PT stretches but we saw an improvement with his range of motion. We took him in for his appointments. He had CT scan, Nuc injection, MIBG scan, blood work and a physical therapy evaluation. He was ready. 

Leading up to the visits, Chris and I weren’t sleeping and when we could, it was restless and I had nightmares. On a side note, my dreams are still as vivid as ever but less life and death and I’m actually sleeping more. It is amazing what less stress can do for your mind and body. 

Tom’s PT assessment was great. He was pumped to do the activities. He had neuropathy damage in the nerves in his feet. We’ve been doing PT the whole time but additional stretches to try to regain some ankle motion. He’s back to normal (pre-Cancer) with his range of motion but still doesn’t have much reflexes. She said she can’t predict when those will return. I asked if there is a chance it could never return and she said typically with kids they’ll come back. You never know how long though. Unfortunately, the feet issues have caused some other challenges for him. He was always tip-toe bouncy when he was little but his arches have fallen and his tendons are not straight-lined with his leg. He’s going to need some inserts to help correct his muscles. She really saw that need when she measured his feet on the “magic carpet”. It is this cool carpet that electronically identifies the footprints and can measure steps, gate and a bunch of other things. Tom loved running, jumping and walking on it. 

She gave us recommendations on the inserts and some more PT activities for Tom. Other than the slight improvements on his feet, she’s pleased with his abilities and loves his energy. Tom had so much fun jumping, running, stairs and goofing around while he had his assessment. We were proud of him. 

His CT scan was the day before and he did great. Since he has no port, he needs an IV. He was tough when Kelly put it in. It hurt but he got over it fast. I was super worried when she couldn’t get enough blood drawn. I was thinking he’s going to need another poke. She said she’d try again after the scan. 

The scan was no big deal. Tom laid there and did his job. We didn’t have any issues in there. When we went back, Kelly was able to get enough blood out of his IV so he didn’t need another poke. Whew, I was relieved. A child life lady was in there when he got it and left the tablet for him to play on. He was playing a game and so into it he didn’t notice when Kelly peeled off all his IV tape. Usually, that’s worse than putting it in. She had it out and he had a whimper and then a Band-Aid. It was a smooth day. 

The next morning was the PT evaluation. We thought it would wore Tom out so he could sleep during his MIBG scan. Usually, he does. Sadly, it was not the case this time and it was moving a lot and not able to keep still. Jeff and I had to keep telling him to hold still. Jeff said a little movement is okay but if it is too much, we’d have to re-scan the area or worst case, sedation. I didn’t want that and normally he does so well. Jeff thought it could have been all the exercise and he was just amped after. He was probably right. Tom was able to get through the scan though. 

When it was review time, we met with Dr. Rawwas first. He was the first one in the room and then the two nurses joined. Dr. Rawwas went over boilerplate issues first and then asked how things were going. Everything inside me was screaming “Just give me the results”!!!! Thankfully, I’m more patient on the outside. MIBG scan was clean. There is no evidence of disease and Tom’s doing great. As for the CT scan, there is nothing cancer/tumor alarming. It was noted the wall of his bladder was thicker. Dr. Rawwas and I were looking at the scans while Chris was watching over Tom and the nurses. They were changing his Mic-key button. I’ll get to that shortly. 

For me, I asked Dr. Rawwas how much thicker, what was the last one like, what would cause that? I was rapidly firing questions at him and I knew I was making him feel a little tense. He couldn’t answer me. It was intense. When I’m excited or want to know things, I do rapid fire interrogations. I stopped so he could catch up. He pulled up the last scan and it was much thinner than before. He said often, it could be a side effect from some chemo but he wasn’t sure right now and not concerned but said we’d continue to monitor. He asked if Tom has issues going to the bathroom or if there is any pain or anything else. I said no and we asked Tom when he was free. No issues so we’ll keep an eye on it and him. He’ll have more scans in about 3 months and stay on the medicine routine. 

I’m not a fan of Tom’s Mic-key button. In fact, I hate this thing. The skin around it is always gross and the thing kind of flops around. Plus I think it was tragic for me when he pulled it out during his bad trip on pain meds. The thing works though and it is way more discreet than the PEG tube hanging off him. He likes it so much and it does its job so I shouldn’t complain. Anyway, he needed it changed out. 

It is held in place with a balloon of air. They have to deflate the balloon with a syringe and then pull it out. They clean up the skin, put in a new one and inflate the balloon. Normally, they said the kids are asleep. Awake is not much fun for the nurses but they said Tom was the best one of his age and awake they’ve done. Tom was pretty pumped up after. He said it is a new smaller one. I asked because it was the same size and it was just his viewpoint. It is the same size. He was set to head out after that. 

We were so excited for the good news but a little taken back by the bladder wall. At least it is nothing major. His body is bouncing back physically and he’s doing well in school. It feels like it was just a blip on the radar now. I’m not trying to trivialize it by any means. It happened and were moving forward. 

Right now, we’re all doing pretty well. Catherine is still having some challenges and we haven’t found the right therapist with availability. That sucks but she’s been okay lately. She’s doing great in school and had a tour of the high school. I AM NOT READY! She was actually super excited after the tour. She is interested in some coding classes, art, Spanish and some other computer things she learned. She’s increased her math scores and will skip Algebra and go into Geometry as a Freshman. At least that is the recommendation from her math teacher and what she wants to do. We’ll see if scheduling will allow. 

Christopher is doing really well right now too. He’s doing much better in school and trying really hard to not miss any more assignments. He’s super focused on Math Masters. He loves math and that is his best grades. He loves practice and is excited for the event this Friday. We’re very proud of him for taking on the extra work and enjoying it. At home, his mood has improved and he is less of a jerk to us lately. He’s more willing to help out and get chores done even before we get home. He even did dishes with me by hand for over 3 hours last week. That sucked but we had more water issues. 

This time it was the pressure sensor. The water quit working and it was negative out so Chris was filling the tank every day. I felt so bad for him and he was so discouraged. He said he feels like a loser because he can’t seem to actually fix anything. I told him not to worry but I was also sick of having water issues. It wasn’t anybody's fault either. My arch nemesis tried to destroy us again. A mouse, spawn of the devil, crawled in the cover thing outside and got wedged in the sensor and shorted it out. Chris had to pull its half-fried/frozen body out of the switch and replace it. Then the stupid thing wouldn’t shut off. Lord, help him. He said he could turn it on and off in the house and we’d have to watch water usage and he’d fill it every day until it got warmer. It was a good thing it warmed to zero. He was able to fix it and now we’re good (fingers crossed). 

The other character building day was when we got a bunch of snow. I was trying to take the kids to school and it was garbage day. The can tipped over and I said they needed to fix it. I stopped short of the end of the driveway and I knew I shouldn’t have. I knew what was going to happen. They fixed it and got back in the car. I tried to back up so I could get a running start and it wasn’t enough. Then I slid. I got out and Christopher and I were trying to push and get the car out. We were going to be late. I yelled at Catherine to go get Chris. He had to finish getting dressed and came out. He tried to drive it out and actually got me more stuck. 

Chris said he’d try to nudge with his car and see if that would work. Well, it didn’t. It was cold and snow everywhere and we were late. It was annoying and the kids were starting to freak out. Chris said he’d try to drive around it and if he could, he’d drive us all. If he got stuck we’d call it a day and try again later. It worked out and he got around. He’s got all-wheel drive too. We all piled in and he dropped the kids off at school (two had already cried about being late) and then me to work. I was upset too but held it in. He’s still our hero and saved the day. 

We’ve spent some time with family too. We celebrated Judi’s birthday at her house with Jen. We made a banana cake and Jen made dinner. We played games and had such a nice visit. It had been a while since we were all together. It was lovely. I don’t know how else to describe it. It felt good visiting and catching up over a good meal, games and cake. 

We had a nice visit with Lori, my mom, James, Caroline, Chris, Tom and me. Tom got a chance to play with the kids. It was so good to see them. I don’t know the last time he got to play with the kids. James is walking and has so many teeth now. He’s still a little shy with us but warmed up. Caroline ran up to me right away this time and gave me a big hug. I’ve finally worn her down. They had a lot of fun and it was loud for three kids. Well, not as loud as at my house with my three but three toddlers are loud. It was amusing to say the least. 

Things are going well and we have such a wonderful support system around us. Without our strong family, friends and supporters, it would be very different. I’m glad I’m learning to put a strong emphasis on the right focus - family. It is the hardest job I’ve every had being a wife and mother and I don’t know if you ever get to a point where you know things. It is learning every day. I think I’m starting to understand I don’t and the kids don’t have to be perfect but we have to try. We do that by loving, supporting and challenging each other. 

Hope everyone has a good night