Monthly Archives: September 2010

how we found out

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I took the boys in for Mateo’s well child checkup yesterday and we saw Diego’s pediatrician for the first time since the tumor was found. It was a weird visit, and I was going to write all about it but then I realized I never blogged about how we found out about Diego’s cancer.

So September is Pediatric Cancer Awareness Month, did you know that? I didn’t think so. Five months ago I didn’t think much about pediatric cancer either, but then the Friday before our family was packing up our house for a move I found a lump in Diego’s abdomen.

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It had actually been about a month before that I first brought Diego to the emergency room. He had been waking up in the night crying, and that night complained of back pain and had a fever. My mind went right away to a kidney infection. I brought him in to the ER to be examined and they ran a urine culture. With negative results he was promptly sent home. Back with his pediatrician the next day I brought him in for a follow up, and they ran another urine culture and he was sent home once again. The doctor assured us that everything was okay, it was possibly growing pains and not to worry.

In the weeks that followed he was up nearly every night crying out in pain and had a fever off and on. I called his doctor and the advice line repeatedly and was generally told not to worry, but how could I not? Then, the Monday before I found the lump he again had a fever and back pain so I brought him in. A different doctor gave him a thorough exam and ran some blood tests. A bone scan was ordered for the next day. We were told it could be a bone infection causing the pain. But I Googled and saw Lymphoma was also a possibility. On Wednesday the scan results were back and all clear. Diego’s pediatrician again assured me via email that it was nothing to worry about. I emailed back that I was still worried. Then on Friday morning when he had belly pain I felt around in his abdomen and I felt a lump. I figured, well that was something to go on. I brought him in once again.

His pediatrician felt it, and called Monday’s doctor in. She felt it too. It wasn’t there on Monday. We were told to wait. I’ll be honest, my mind did not go to cancer immediately but I was able to gauge concern on the doctor’s faces. We were told to wait while they consulted some additional doctors. Diego and I went out into the lobby where we sat on the floor and looked out the window on the street and freeway below. Diego was tired and put his head in my lap. I called Erich and my mother who was babysitting Mateo. After about 30 minutes the doctor came out to the lobby and told us that a CT scan had been ordered. She told us to go back to the emergency room for admission. She explained that she was worried and mentioned neuroblastoma and lymphoma.

Time in the emergency room goes by very slowly. Diego was in increasing pain and crying out. He was given a private room and we talked to many doctors before the CT scan was lined up. “Did anyone in the family have spleen issues?” and other random questions were asked. It took hours before the CT appointment, it may have been after midnight. In the middle of the night Diego was admitted to the pediatric floor upstairs. He continued to cry and writhe in pain.

At least an hour later a doctor came to the floor to show me the scan, going down from the lungs into the abdomen, narrating as she went. “And here are the kidneys.” A large mass started to appear. Continuing to narrate, she gave me some possibilities of what it could be, from more benign conditions to a cancerous tumor. I was numb.

Erich came to the hospital the next morning for doctor’s rounds. At about 11am the pediatric oncologist came in, greeted us and said, “I’ll be right with you– but I want to take a lot of time to talk.” Then she went to see the next patient in the bed. Erich and I looked at each other and sat for an infinity while we waited for the doctor to come back.

I don’t really remember exactly what the doctor told us while we were sitting on the hospital bed but the net was that the mass was not a condition but a tumor. There was no benign option. The doctor with her explanations the night before was trying to let us down easy. The oncologist told us the tumor appeared to be something called Wilm’s tumor, a highly treatable form of cancer. The other possibility was neuroblastoma, a cancer a less positive prognosis. She told us, to hope for a Wilm’s tumor with favorable histology at an early stage. They would operate on Monday to remove the tumor and biopsy at that time.

So that’s when our lives changed. We called our realtor and called off our move. You can read about the beginning right here.

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I had been planning on doing an extensive post on Pediatric Cancer Awareness Month why you should care, but well, I guess my life is a little too full right now. But here is a really good post written by another mom on why it matters. Besides that, please remember Pablove and Curesearch this month or for your end of year charitible contributions. From what I can tell, these are really great organizations for pediatric cancer research and support. The American Cancer Society and US government only give something like 1% of funds to pediatric cancer research- Our children’s voices are being drowned out by all the shouting adults. Help the children be heard.

shutterbug

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We went out to the coast this afternoon to the Point Reyes Lighthouse in West Marin, one of my favorite places on earth. The weather was unseasonably hot and beautiful so we thought it would be a perfect afternoon to go to the usually cold and blustery  Point. Diego is a total shutterbug and will grab a camera whenever he sees it, so as soon as the camera came out he insisted on using it. He’s got a pretty good eye for a 3 year old, right? Of course the gorgeous scenery and perfect weather didn’t hurt.

a good start

The first two post-chemo nights were really rough, but on the second night I realized that I had fed Diego some boxed mac and cheese. We make it with soymilk and he has been fine with it in the past, but I realized that morning it’s time to totally cut out all milk based products for now.

But nIghts three and four post chemo went quite well with the new soy formula! Not 100% restful but pretty good, and he got an additional 450 and 700 calories in that little tummy overnight. This morning Diego woke in great spirits and had a really big breakfast. I’m hoping, really hoping, that we have gotten to the bottom of this nighttime pain issue after all. At the very least, we are off to a good start!

chemo countdown

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Yet again, Diego’s counts were high enough so he did not have to postpone chemo yesterday. In all of this course, keeping his blood counts high has been the one thing that has seemed to be easy for him. (Or course, now that I am writing this I’m sure it will officially postpone the next treatment.)

In any case, without any postponements that makes it T minus 6 weeks until Diego’s last chemo appointment, just two more treatments!

At Diego’s appointment on Tuesday we discussed the past week’s events- essentially the pain and issues that I’ve associated with the prescription of yet another dairy based formula. The doctor finally agreed with me that he probably has a dairy allergy that has been exacerbated by massive tube feedings of dairy based formula. He apparently has been showing signs of an allergic reaction in his bloodwork for quite some time now. (Um, hello? Was nobody listening?)

I had spoken with the GI team on a couple of occasions in the previous week and on Monday they told me there was no non-dairy formula for kids aged 1-10. (Seriously I wondered, is this the 1950s when food allergies did not exist?) Well, after I got off the phone I decided to try this amazing tool called “Google” and I was able to find something that was soy-based. When I reported back to Kaiser the staff commended me for my persistence in the matter and strong research skills. (Seriously, it took me all of five minutes to find it.) So, I’m just letting you all know, and I hope all of you great moms wont be jealous, but I may just be getting the Mother of the Year award for this ground breaking discovery.

Since being off the dairy based formula, Diego has had 2 out of 4 restful nights sleep. That is really saying a lot since I don’t seem to remember the last time he had a truly restful night. We are still awaiting delivery of the new formula, but I tried plain soy milk in the NG tube overnight on Monday and he slept through it like a baby. So, I am very hopeful that this new stuff may do the trick. I know that there are studies out there that warn of hormonal issues with too much soy for boys, but this is really short term. With everything else we have to worry about, I’m not going to put it at the top of our list.

So yesterday after his chemo appointment, it felt like everything was falling into place. He didn’t have much of an appetite for dinner, but was in good spirits. Before bed I gave him his laxative laced juice as I always do, and just as I was lifting him up into bed, he barfed it all back up all over my back, his shirt and nearly the entire room. Moments like this remind you that that medicine that is working to cure your child is also slowly poisoning him. He was very upset and I calmed him down but he spent the entire night tossing and turning, crying out, and even falling out of bed twice. This is just the nature of dealing with this disease. Just when you think it’s all starting to click, things tend to fall apart once again.

But with the end in sight, I know we can get through this. Two out of four restful nights is a positive trend that I’m willing to take.

normal

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We still have questions on Diego’s night wakings and pain. I’ve probably called in with concerns over pain/wakings/digestive issues every 3 days or so. But Tuesday night he was in a fit of back pain for a full 45 minutes…I thought it wasn’t going to end. I have been sleeping in his bed with him almost every night since he got back from his first hospitalization in May. In the beginning he needed a lot of comforting to help him through his PTSD, and now he needs me to hold him until he falls asleep. There was a while there where he would let me leave and could fall asleep on his own, but after the bowel obstruction we were back to nearly square one.

The next morning I called the doctor’s office to give them a report and demand some sort of imaging. We got an appointment in that morning with the doctor who examined him and called for the ultrasound.

Diego was feeling pretty well at the time of the ultrasound and the technician was really nice which put him at ease. She scanned the entire abdomen and then left the room to check with the radiologist. When the radiologist did not come in to rescan or look at the scans I felt a certain amount of relief. And, fortunately we got the call a few hours later from the doctors office that everything looked normal. I felt somewhat relieved, but until Diego starts having a sound night sleep I won’t be able to really relax.

It may be the new formula. We were told the new formula was non-dairy, but when I read the ingredients it was clearly not. We were given some justification that it was more broken down and more digestible, but when the first time I gave it to him he was writhing in pain 3 hours later. The second time I gave it to him he was nauseous all afternoon. I’m thinking this new stuff just isn’t doing the trick. No more of it for him! I’ll insist that they find us something that is really non-dairy this time.

So what is causing the abdominal pain, night wakings, and other issues with his gut? No real answers but the doctors suggest that with all he has been through it’s not uncommon to face challenges in these areas. His gut may never be the same, but one would think that at least once he’s off chemo things have got to start getting easier.

Tuesday his next chemo appointment, if his blood counts are high enough. They were a little low yesterday, but we’ll retest on Monday. Fortunately he has only missed one chemo appointment due to low counts, but with the end of treatment in sight on we just don’t have patience for delays!

gut check

Yesterday morning Diego woke up screaming at 5:30 am. I ran into his room to see what was wrong and he said, “I’m not gonna barf.” Which is usually what he says right before, well, he barfs. I checked stomach contents and there wasn’t too much but it was sort of frothy. I made some fresh ginger tea and put it in the NG tube thinking that ginger was good for nausea. The previous night I cut his NG feed altogether because he didn’t seem to tolerate any of it.

When he got up a couple of hours later he was cranky, but mostly fine. He was asking for a banana for breakfast but I wanted to give him his carrot ginger juice first. When I put it in the tube he complained that it was too cold so I tried to heat it up. In any case, it all came right back up a few minutes later. Not a great way to start the day, but afterwards he was fine once again.

I called the clinic that morning to give them an update. They had been trying to get him an appointment with a pediatric gastroenterologist, and with the morning’s events we were finally able to get him seen that day.

At the appointment I discussed Diego’s GI history with the doctor. (There was a lot.) She told me that it wouldn’t be uncommon with chemo and radiation that he would have GI issues, and felt that he might be experiencing slowed digestion and gastritis due to that. Lactose intolerance is also a common side effect of chemo. She didn’t have any answers for Diego’s early morning wakeup but thought it could be gas, still the doctor still did a good job of putting me at ease. We were sent home with some Zantac and a new non-dairy based formula prescription. Unfortunately the formula won’t be here until next week. I don’t really want to put him back on the old formula, so we may be looking at more weight loss this week.

However, at dinner he had about 6 courses. He didn’t eat much of anything but kept asking for different foods. That feels encouraging. One of the reasons I am so tired is that I will indulge him in almost any food whim he might have. With his lack of appetite and weight loss, I feel like I almost have to. Yesterday at the doctor’s appointment he suddenly said, “I’m hungry for corn on the cob.” So we promptly drove to the grocery store on our way home. I made the corn for dinner but then he wanted Cheerios, and then we ran out of Cheerios so then I gave him Rice Krispies. Then he asked for star shaped turkey avocado sandwiches. After one bite he said he wanted to go to bed. I got his teeth brushed, read him stories, and got him in bed and he said “I want to eat the corn.” So we got him up to eat the corn, back to brushing teeth, and I indulged him in another book. We were back in bed (I always hold him until he falls asleep these days) and then he said “I’m hungry I want mac and cheese.” At this point, it was about 9:30 and I told him to go in the living room and ask his dad to make it for him. I promptly fell asleep in Diego’s bed, fully dressed and didn’t wake up until 6:00 this morning.

a little help

Friends, I’m just putting it out there that we are still in need of a little help. With Erich recovering from the bike crash and doped up on pain killers I am having to do everything at home these days and I am already exhausted.

These things could help us:

1) Dinners

2) Laundry folding

3) Playdates with the boys so I can either catch up on sleep or get the house clean on Tuesdays or Thursdays.

4) We miss our friends. We are still here and can use breaks from all of this. We like getting invitations out, so by all means call us to invite us to that barbeque or gathering! Diego is not on quarantine.

the thick of it

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I’m feeling rather depleted this week, and it’s only Tuesday. This cancer thing is getting old. I mean, I’ll take this life over the alternative but wow, sometimes this stuff just kicks my butt.

Parallel Reality
Over the weekend we had another visit to the emergency room. Wait, no it’s not what you were thinking… First, Erich, out on a group ride crashed his mountain bike early in the afternoon. When he got home he was in a lot of pain so I told him to call the Kaiser advice line. They recommended he come in to the ER for a chest x-ray, and told him not to drive. This was Sunday about dinner time and we decided that the kids could quickly finish dinner and then we would drop him off and he could take a cab home. So after the boys finished dinner I was getting Mateo in his pajamas when BAM! he slammed his face into the coffee table, splitting his lip wide open. Erich and I looked at each other, thinking “Is this for real?”  So now we had a two for one trip to the ER and needed someone to watch Diego. Fortunately both my mom and a neighbor were able to come through for us there.

There we all are in the living room, Mateo crying hysterically with his shirt covered in blood. Diego, usually sensitive about these things seemed strangely unshaken, “Why does Mateo have blood on his shirt?” I told him, “Mateo cut his lip Diego, we are going to have to take him to the emergency room too.”  Diego shrugged it off, “Okay.” Strange because when Erich came home and was lying in the bed talking about going to the hospital Diego was really, really scared. We had to talk him through that Daddy was going to be okay, he was just going to get checked out. We could see that emotionally Diego was scared that his Daddy was going to be weeks in the hospital too. So, when Mateo got hurt and it was suddenly no big deal, we weren’t sure what to make of that. Either we did a good job of making Diego feel at ease, or the thought of Mateo being in the hospital was much less worrisome (?)

Fortunately Erich, while in a lot of pain, was not seriously injured and was sent home with a bottle of Vicodin at about 11pm. Mateo came home minus his bloody shirt but with two stitches to show for his ordeal. The whole evening in the ER felt like a parallel universe. Six months ago I probably would have been hysterical with worry, my toddler running around in a bloodied shirt and lip split wide open. I kept thinking, “Okay, this is why a parent is usually here with her kid. It feels so much less… scary.”

Eight Weeks
I mentally counted down today that there are eight weeks until Diego’s last chemo appointment. I told myself I shouldn’t do it, that it will jinx things but I can’t stop.  Of course, there could be delays, things could happen but it’s something to hold on to. He will still have to recover from his last chemo treatment and then there is D-day, the end of treatment scan in about 11 weeks. 

We still aren’t out of the thick of it. I’m still asking the universe when things are going to start getting easier, so I guess this count down becomes something a little more concrete for me to hold on to. I do know that things probably won’t magically turn around then, but I can at least hope that they will. Diego just hasn’t been feeling great the past two weeks. He hasn’t been tolerating the nightly NG feeds as well, and has been losing weight as a result. He has been moody the past week, and past few days in particular. He will be joking and playing one minute and in a full blown tantrum the next. He could be reverting to his terrible twos, but I think he is just not feeling so great. It could be chemo, but I think it’s more likely something else- what we don’t know. 

Solving the Puzzle
I’ve been in regular contact with Diego’s doctor’s and I’ve told them a few of my theories about what is going on–  I think that it’s possible he is becoming more intolerant to milk as a result of the milk-based formulas he has been on the past few months. He’s not necessarily lactose intolerant but has never been able to drink cow milk or eat cheese, but yogurt and small amounts of dairy have been okay. I did express concern initially when the prescribed the formula, but he was tolerating it at first.  I have now asked if they can try switching to soy or rice based. I have been giving him fresh carrot/ginger juice for his sluggish digestion and it has seemed to help. 

Another of my theories is that the apparent pain/moodiness he is experiencing may be due to the abdominal adhesions  but that does not necessarily mean a bowel obstruction is imminent. In researching online, it seems that pain may be a life long issue with adhesions. Alternatively, he could be feeling tired and weak and thus moody because he is not getting enough calories. As we get further away from his last week’s chemo appointment I’m hoping his appetite will get better.
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Pictures above: 1) Diego at the lab, blood samples in tow in his backpack. 2) Brotherly love 3) Diego typing out sentences on the iPod touch. If you look closely at the top you can see he was trying to write “We go to Fairyland.”

tube in, tube out

Diego barfed up his feeding tube this morning. I might have pumped it up a little too high post chemo. We went to get one reinstalled at the doctor’s office this morning, which was no fun but that would have been the end of that.

However, while waiting for our car in the parking lot this family with a teen ran up to us. “Our son had cancer too and look how big he is.” They pulled up his shirt and revealed a big scar across his abdomen. “Wilms tumor?”, I asked. “No,” they replied, “Neuroblastoma- you know the kidney cancer you are supposed to die from? He was supposed to die so many times, but he is still here.” and they continued, “Blah, blah, blah, die, die, die.” And there I am standing with my three year old, putting on my smiley face hoping that he doesn’t understand.

counting down

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Only 3 chemo appointments left!

That was the great news we got at Diego’s chemo appointment today. That makes 9 weeks until his last appointment. Twelve weeks until the CT scan to determine whether the treatment has done its job. We are going to be crossing our fingers for “NED” no evidence of disease in early December.

It feels like we are approaching the finish line, but 9 weeks in cancer treatment can feel like an eternity. Still, it is something to hold on to, a more manageable number to count down.

No updates from the appointment today, mostly a “post-game” discussion of what happened over the weekend. My theory was that Diego had some constipation and intestinal distress that was caused in part by the chemo meds and a milk-based formula that he was on earlier that messed up his gut. Distress that could possibly contribute over time to a bowel obstruction, but in this case, did not. Diego’s doctor thought that this was a viable theory. I discussed with Diego’s case-manager nurse how he still cries out at night sometimes, and she noted that it could just be nightmares from his traumatic experiences. Apparently Diego has had the toughest treatment course of any Wilms Tumor patient that his doctor has cared for. We are told he is still expected to have a very good prognosis, still this isn’t a distinction I would like him to hold. Oh, well today his doctor did say he was the smartest 3 year old she had ever met so maybe that is a better distinction to go with.

Diego is addicted to anything techy- digital cameras, iPod touches, email. Today he showed me how to use photobooth on my laptop. It’s starting- soon he will be programming the VCR and my cell phone.