Monthly Archives: August 2010

storms

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Another crisis averted, at least for tonight…

Diego awoke this morning with his belly somewhat distended, tender to the touch. He was very tired today, cranky. At the clinic this afternoon he was crying and did not want to be there. (The memories of the feeding tube insertion trauma were still very fresh.) But, fortunately he had no pain at the appointment. The doctor believed the issue to be a gas bubble and after about half an hour of discussion and debate on whether the issue could be a bowel obstruction, we were sent home where I would keep an eye on him.

While he had no appetite today, he was doing great in the evening playing with Mateo. In fact, I thought everything was mostly going okay until 8pm or so I went to check stomach contents on the feeding tube and pulled out 50ml of what looked like bile laced fluid, nearly identical to what they were pumping out of Diego’s stomach just prior to his bowel obstruction. (Queue mother’s panic here.) I called the doctor on call and discussed the matter with him for at least half an hour. I was assured that the stomach contents, while somewhat alarming in volume, did not appear to contain bile. And while Diego was having pain again upon palpitation of the abdomen, was not in immediate pain. The doctor suggested that I wait another hour to see if the stomach contents were digested, and if not either go to the ER or urgent care tomorrow. 

It’s an hour or so later the good news is that things are moving again. So we are safe once again, for now.

Cancer waits
Just last night after the boys were asleep I turned to Erich and said, “Diego is doing really well, and that has me worried something bad is going to happen.” And it’s true, every time Diego has shown signs that he is finally turning around, he’s suddenly taken a dramatic turn for the worse. At UCSF the day before he hemorrhaged he had shown a big improvement in vitals and we were all optimistic that he was going to continue down the non-surgical path. And right before the bowel obstruction I had just started to relax and noted how I felt that we were through the worst of it. Cancer always seems wait to catch people off guard. It seems the only way to play it safe is to never feel 100% safe. I hope and pray that today’s incident is just another scare for us, an anomaly, but I just don’t know. It’s hard to know when, if ever, we will be free from worry. The best I can do is to just relish the times when Diego is doing well, and take those at face value. It’s such a difficult way to live, always on the edge of your seat. At a parent, all you want to hear is that your child will be 100% okay, and that there will be a happy ending to all of this. But there are no guarantees. We all have to operate and believe that we will get that happy ending, while at the same time brace ourselves that something bad could happen, again.

Storms
Diego has recently been dreaming a lot about storms. And talking about them. Most of the time they have been nightmares but occasionally they have been good dreams. One to look at symbolism in dreams, I originally felt that the storms had something to do with Diego’s anxiety over our move, but now think that it’s his way to process what is happening to him, and how he feels about his cancer. Some days he tells me, “I like storms.” and other days he tells me, “I’m afraid of storms.” and often, “Tell me about storms.” 

When I tell him stories about storms I like to tell him about my summers in Colorado at my grandmother’s house and the beautiful thunderstorms there. The way on a hot day the clouds will suddenly gather over the plains and darken the sky and provide some much needed moisture. And, in a flash the storm is gone leaving the air is moist and fresh. Hard to describe to a three year old, but it always felt like a renewal afterwards, a fresh start. I try to impress upon him that storms can be scary, but they can also nurture and help things grow, and most importantly that storms will pass.

Brave little boys
One evening this week I was giving the boys a bath I said something about Mateo being brave. Diego added, “He should get a necklace.” to which I replied, no the beads are only for brave little boys who have cancer. Diego cheerfully interjected, “One day Mateo will get cancer!” My heart sank, “No Diego, Mateo won’t get cancer. Nobody wants to get cancer.” And it hit me that Diego doesn’t really have the capacity to understand what a raw deal he has with this disease. It will take him years, probably, to understand what this all means, and what an epic fight this has been for him, for all of us. He doesn’t even know what death means. That sort of innocence can be heart wrenching. 

As a parent of a young cancer patient, it often feels like I carry the weight for him. People often tell me about relatives or other people or even children they know who have died of the disease. Their hearts may be in the right place, trying to let me know they empathize that it is hard or a desire to connect with me, but no matter what the context this is not something I want to hear. They clearly don’t understand that when you are the parent, it is like you are emotionally the patient. We all know what can happen, and we really don’t want to hear about it over and over again. Everyone knows someone who has died of cancer, so let’s please work on focusing on the positive. There are happy endings and millions of cancer survivors out there. 73% of all pediatric cancer patients survive and Wilms tumor patients have even better odds. Be our cheerleaders, and let us know about the happy endings. They are out there, in that same circle. Your cousin, your grandmother, your grocer, your favorite blogger. Those are the stories to tell.

half birthday

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For some reason, Diego really wanted to celebrate his half birthday this year (which happens to be a day after Mateo’s half birthday). I’m not exactly sure how it came about- probably just his desire to see friends. In this case, his BFF Declan. From my experience hangin’ on the playground, it seems like a birthday party invite, even months in advance, is a preschooler’s way of saying “I really like you”. Conversely, you can be uninvited, or the party can be called off altogether if you fall out of favor. Diego’s declaration of “There’ won’t be any party.” means that you are really, really on the outs.

I wasn’t really up for party planning, even on a small scale, so I asked Diego what he would like to do. He said he wanted Declan to come to the party. It worked out that Declan’s family had already invited us out so we decided to add cupcakes and candles to the mix. The event was Member’s Night at the Oakland Zoo and we enjoyed an evening picnic and stroll around the park– it was a really special evening for everyone, made even more special by the addition of chocolate cupcakes.

school visit

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We finally made it in for a preschool visit this week. It had been four months since Diego’s last day there, and it will probably be another three before he can go back full time. I had felt that it would be good for everyone if he went back to see his friends and teachers.

 

Things were a little different going back. Many of his friends weren’t there and/or had graduated and were in the older class. At first he was rather intimidated, and couldn’t handle the noise. His teachers were especially happy to see him and gave him big hugs. The kids, aside from his best friend, didn’t really know what to think of him and kept asking him about the feeding tube. Diego wore his beads of courage necklace and I encouraged him to tell his friends and teachers about all of the different beads. He wanted to leave after about 20 minutes, but on his way out got sidetracked by some puzzles and became more comfortable. After another 20 minutes I asked him if he wanted to play with his best friend on the playground and he jumped at the chance. Before long, he was out in the sandbox like old times. We actually ended up staying a couple of hours, and Mateo had a great time being surrounded by Big Kids.

We will probably go back again in a month. It’s looking more and more like we won’t be moving, so I think it would be nice for Diego to keep in touch with the school. 

It felt good to see him back in his old environment at preschool, and felt reassuring that we will be able to get back to our normal lives after treatment is all over with. Is it really another 3 months?

……………………………….

The past couple of days he seems to be doing better. At the last check-up, he had lost even more weight so they decided to put the feeding tube back in. Insertion was horrible, torture for him really, but I think the NG feeds are really helping. Perhaps his general fussiness and moodiness has had to do with his weight loss. He lost somewhere around 14% of his already skinny body mass at the hospital, and that can’t feel good. 

We have asked, but still don’t have answers on what another bowel obstruction might mean. But, the NG feeds do seem to be going better. Pre-bowel obstruction his digestion had slowed so much that he often had too much in his stomach to even start the feeds, but now, so far, it is smooth sailing. So he is feeling good now and the NG feeds are going well, so I’m just going to do my best not to worry.

halfway mark

By my calculations, give or take, we are finally past the halfway point of DIego’s treatment. 

Still, it feels like an excruciatingly long time until he will be finished. Sometime soon, I hope, it’s got to start getting easier. These days we are still on alert for another bowel obstruction. We haven’t really been told that he is at more risk for this happening while he is on treatment, but with constipation being a contributor the last time we have to vigilant about making sure he poops daily. Chemotherapy slows things down which was probably a big contributor last time. Making a three year old do anything he doesn’t want to do is a battle, so I spend a couple hours each day coaxing and pleading with him to drink his laxative-laced juice.

Also, we are having to re-potty train. For the third time. After each extended visit at the hospital we have to nearly start all over again. His weight is also down by 2 kilos from the last hospital stay and has not been eating well either. I am like an Italian mother pushing food on him all day, but I may be losing that battle. He may need to get another feeding tube put back in.

Last Monday night he had abdominal pain and vomiting. I thought we would have to rush him to the emergency room that night, but when I called the doctor, he wanted to wait it out to see if it would go away within half an hour. And fortunately, it did. The next day we discussed the incident with his doctor and she thought he may have just been an anomoly since his abdomen was fine upon exam. But they may order another ultrasound.

He has been fussy since chemo last week. Cranky, moody, and extra whiny. This concerns me. Is it just the side effects of chemo or is something more sinister going on? We just don’t know. Every time he fusses or is unhappy I am now worrying that there is a big problem. Leading up to his diagnosis, even before the back pain that woke him up in the middle of the night, he was feeling sort of bad. There were signs. So it’s hard to interpret, for now I’m living in a constant state of worry. When he’s happy and doing well I can forget, but every tantrum or outburst causes me concern because I just don’t know the root cause.

But when times are good, they are really good. Yesterday we went to my husband’s office barbeque and after lunch they brought out the bingo cards. Now, this might not be widely known, but Diego loves bingo. In fact, he was all ready to leave the party until he found out there would be bingo. His love of the game came from playing the weekly children’s ward bingo game while at UCSF, and he has loved it ever since. And, at yesterday’s party they even had one of those fancy cages with the balls inside. When they brought out the cage he was mesmerized. He was invited to help out with the cage, and to my surprise, it was just a few minutes before he was out there in front of 20 or so people calling out the letters and numbers at the top of his lungs. 

one brave boy

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During Diego’s first hospital stay at Kaiser he was given a set of beads on a string with his name and a number of other different colors. This was part of a non-profit project called Beads of Courage which gives children a bead for each milestone of treatment. For every x-ray, CT scan, poke, or chemo treatment Diego gets a bead. Every hospital night, ER visit, radiation treatment he gets a bead. He has quite a few by now. There is a guide that comes with the set which describes which each color bead represents.

When he got his Beads of Courage necklace in the hospital I thought it was a truly wonderful idea, a tangible way to process the journey these kids are going through, like war medals. And Diego got it right away. He wears the necklace out sometimes and likes to tell people all about it and what the different beads represent. At chemo this week he got quite a few more beads for his hospital stay. They did not have any star (surgery) beads this week so he’ll have to get that the next time.

At the clinic this week, I spoke with his doctor and social worker about my concerns over future surgery and how difficult his last hospitalization was on our family emotionally. They are going to try to set up a meeting where we can have our concerns addressed regarding new risks and Diego’s long term prognosis.

On the up side, Diego has only 5 chemo treatments left. It’s down to every third week and should end in November. Fingers crossed.