Monthly Archives: September 2011

balance

I’m a little embarrassed about being so worried.

Diego is totally fine today, super great spirits and acting completely back to normal. I don’t like being a worrier, and I feel that for the most part I don’t let worry cloud happy times, but having 4 out of 5 symptoms pop up over the past month was hard to ignore. Anyway, he is probably fine- the ultrasound looked normal. I sometimes use this blog as a confessional for my worry, thinking that if I put my worry out there then it won’t come true.

I’ve also learned to pay the disease the reverence that it deserves. Back when Diego was first hospitalized during those nightmarish 5 weeks at UCSF I had a conversation with his doctor there, a really nice man named Dr. Goldsby. I’m not sure about how the conversation went, but I think I was expressing my concern on whether Diego was going to make it through surgery and how losing my father to cancer at a young age taught me that things don’t always work out. He replied something like, “Yes, cancer seems to sense when you’re feeling safe.”

So true. I’ve written about it before. And back in March when he had the scan that revealed tumors two and three, we walked in there so confident. There I was snapping pictures of Diego’s happy face in front of the CT scanner, so secure in the belief that it was going to come back clear.

So somewhere between forgetting about the worry so we can live happy, normal lives and preparing myself for the worst case scenario, I need to find balance.

For now I’m thankful, again, that Diego is feeling great.

fire drill

Screen_shot_2011-09-16_at_6

Good news- Diego’s ultrasound today was, as I understand it, normal.

His MRI was cancelled, due to fever, but based on all of the symptoms Diego had been having, his oncologist had a backup ultrasound planned to make sure nothing was abnormal.

Anyway, our family was exhausted tonight after an emotional and long day. Mateo missed his nap, Erich had dental work done and Diego and I were 5 hours at the hospital. Work is busy, too, I just launched a new business and was playing catch up with my other two in the morning as well. TGIF~ seriously.

Even though he had a fever yesterday, Diego’s doctor wanted us to show up for his MRI today to see if they would still take him. He needed a urinalysis as well so we had planned to go to the lab beforehand. I had to get my mom to watch Mateo for the MRI procedure (Diego was to be under general anesthetic), but my mother wasn’t home until after we had to leave, so I had to bring our 2 year old to the hospital with us. Once we got there, I realized that since I just had Diego pee before we left, the urinalysis wasn’t going to work out immediately. So we waited in the parking lot about half an hour until my mom arrived, when she took Mateo an some wholesale orders to FedEx.

We had parked near the lab, on the other side of the hospital from the MRI department, but managed to make it on time. The receptionist recognized Diego, she was actually a parent at his preschool. It’s funny, I never know how much the preschool parents know about Diego’s medical history. A card from the parents was passed along to us at the hospital when he was diagnosed, and I saw there were maybe 2 updates in the school’s newsletter over his 6 months of treatment, but as I’ve said before, there was very little support other than a couple of parents. Anyway, it’s really different walking around with a “normal” looking kid in a medical environment. When you walk in with a bald kid with a feeding tube, people know he’s got a medical rap sheet. Otherwise you’re sort of treated like a rookie– reassured about things that seem like no big deal after say, malignant tumors, multiple surgeries and sepsis. Anyway, this mother said something about the anesthesiologist doing surgery with her daughter and I wondered if she had any idea what Diego had been through.

Diego was feeling really sick today. Feverish, clingy, melancholy. So many pre-tumor symptoms this week, I was having a lot of flashbacks to the day he was diagnosed. That sinking feeling in the pit of my stomach, legs feeling like they would give out at times. Anyway, the anesthesiologist came out to talk to us, and I discussed the fever and sore throat. He told me all the reasons why they would not want to do it today. I cut him off. I didn’t need to hear more about the dangers, I certainly wasn’t going to push for anything. I talked about the backup scan, and we worked out details. We were sent over to radiology where, as I understood, they were expecting us.

We got the urine sample done on the way. The lab was across from radiology so that was convenient. At radiology, we took our number, signed in, and proceeded to wait half an hour for Diego’s name to be called. At which point I went up to the desk to ask about what was going on. I was told that our appointment was at 4pm (which I did not know), and Diego had to be squeezed in. It was only about 2:15 at this point. No estimate, we were just told to be patient. I mentioned that Diego had only been on clears all day, so the waiting was quite difficult and unfair to him . No sympathy from the receptionist. I think at this point I pulled out my laptop which I brought for the MRI downtime. I let Diego mess around with Photobooth for a while. It passed the time an lifted his spirits. A good thing too, considering we were there about an hour and 45 minutes before being seen.

Finally, Diego’s name was called.

In the procedure room, I sat at the foot of the bed and tried to figure out what I was looking at, second guessing. On Diego’s last ultrasound 3 months ago, the technician had measured a 2.5 cm mass in the kidney bed. Back then, I was in a state of panic until the doctors reassured me a few hours later that this was the “post-operative” change they had told us about. Anyway, this time, I did not see the tech measuring much of anything– something, but it seemed less detailed. All I knew was it seemed like she was taking a lot of pictures. There were a lot of black pockets, and what was that big blob? That’s a lot red mass there, I thought, what could that mean? This is, of course, all an internal monologue since they can’t tell you anything. Really, I had no idea what was going on. When the technician was done, I asked if the doctor could give us some feedback considering Diego’s medical history. She said she would see if the doctor could come in. (Coming in, I thought– that’s bad.) Anyway, after she left and came back a couple of times she finally told me the scan looked quite normal.

So, was I high-fiveing and doing the dance of joy? Not really. It’s a relief, for sure, but sometimes these things are hard for me to fully accept. I’d certainly rather have a false alarm than a real one, but would much prefer no alarm at all. I hope Diego gets over this bug real soon.

team KC picnic 2011 at camp arroyo

Sunday we visited Camp Arroyo courtesy the non-profit Team KC, founded by the parents of Korrine Croghan who was a 14 year old patient at Diego’s clinic. It was the third year, organized for the patients, doctors and staff to get out of the hospital and have some fun. It was a really great afternoon. We were invited last year, but forgot to make it with all the chemo and hospitalizations.
It was a really joyous occasion and nice afternoon. Some activities that we did get to: bouncy house, climbing wall, zip line. dunk the doctor and lunch. And many activities that we did not: ponies, swimming, arts and crafts, and more, I’m sure. The big hits with Diego were the zip lines and golf carts.
I made a special point to thank Korrine Croghan’s mom for the picnic. It was really a sweet way to honor her daughter’s memory. 

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10 months OT

Diegoshades

We’re inching toward the one year mark off treatment! Some days I feel incredibly thankful for feeling like a normal family again, others I still worry.

This past month Diego has complained a couple times about back pain and “owie pee”, symptoms that he had before the first tumor was discovered. The last complaint was a few days ago, and otherwise everything else seems quite normal– great energy. So, I’m hoping it’s just nothing. He’s got an MRI scheduled in 2 weeks to determine once and for all if his incontinence is caused by nerve damage from the 5 abdominal surgeries last year. He had a full 7 days without accidents last week, followed by 2 bad days. This seems to be his pattern, which makes me think it’s psychological. We’ve thought it might have to do with his preschool friends going away to Kindergarden. He’s missed them a lot and talks about how sad he is every single day. Hard to get into that little head of his to figure out what is going on.

I’m feeling a little down today myself, alone with the kids and exhausted from working too hard the past few months on a new project. We had a nice visit with friends over lunch but otherwise Mateo has been super fussy all day and has hardly eaten. Sure, it’s probably just a virus, but I find myself looking for lumps in his abdomen a lot. Once he gets past that 3.25 mark then perhaps I’ll stop worrying about the big C. I really don’t think about it when everything is going fine, but it’s hard not to worry when things come up. Call it PTSD.

Geez, where is my optimism? Sorry to be such a downer. Things are good, life is good I really shouldn’t complain. I’m thankful for every day with a healthy family. But you know, a mother worries…