Today we had an adventure in San Francisco. We took Beckett to UCSF to get a second opinion from a doctor there about his chemo treatment. Since our appoinment was at 9 and we didn't realy know where we were going or where to park we left at 6:15. It was raining a little but all was well. We got into SF around 8:15 so we had a few minutes to sit in the cafe and have some coffee before our appointment.
We had a bit of trouble with the insurance issue, but it seems to have worked itself out. We met Dr. Banerjee and went over the history of the case with her. She discussed with us some of the chemo options as well as the possibility of holding off on continuing chemo at this point if the Feb. 5 scan shows a decrease in size or stable tumor. She said she would lean towards that for a kid, like Beckett who was not currently demonstrating visual problems. This would be in conjunction with MRIs every 3-6 months and opthalmology visits every 3-6 months. She said if we go this route, at some point down the road, it is possible, even likely that he will need more chemo or even radiation to preserve his vision. (Prognosis for optic glioma is better for kids with NF1 than kids who get optic glioma out of the blue.) Of course, if the tumor has grown then we will continue to treat. She will call us on Friday to let us know what she would recommend as treatment if this should occur.
Beckett otherwise is doing great. He says so many cute things we can't keep up. For example, he always says, "Not bedtime... cause its (blank) time." Fill in any preferrable activity to bedtime such as "Watch Diego time" or "eat cereal time". A not so cute development is that he says, "Actually" a lot. For example, if we say, "That's daddy's phone, " he'll say, "Um, actually, Beckett's." He does this quite often.
He is getting excited about the new baby too. He likes to feel the baby kick (which happens a lot) and he recently is enjoying our new double sit and stand stroller. We're not sure how he'll respond to an actual baby though.
Tuesday, January 29, 2008
Wednesday, January 23, 2008
Update to the ER story
So we got back home from Stanford at about 10 am today after about 12 hours in the ER. Beckett was dehydrated and got more fluids and more blood tests. All of his blood counts look OK, except for the dehydration, which was fixed with lots of IV fluids and electrolytes. After a day of all three of us lying on the couch and in bed, Beckett is feeling much better. He has been walking around a bit and even ate some dinner, so hopefully he is on the mend.
We will get blood culture results back in a few days, but it looks like the problem is more likely his stomach than an infection from his port site. We will also test his stool again for giardia since it's possible that he got reinfected. But for right now, Beckett is doing pretty well.
We will get blood culture results back in a few days, but it looks like the problem is more likely his stomach than an infection from his port site. We will also test his stool again for giardia since it's possible that he got reinfected. But for right now, Beckett is doing pretty well.
At the ER
Well, not a lot of news to report for a long time, and now we have a lot of news all at once. As I write this we are sitting in the ER at Stanford. Last night we were at the ER at Dominican. Beckett is doing OK but he is sick and has a fever, vomiting, diarrhea, and some difficulty breathing. When I ask him how he feels, he says "I feel happy." I wonder if just thinks that is what you are supposed to say.
Last night we went to Dominican after the on-call oncology doctor at Stanford advised us to go in because of Beckett's temperature. After they assured us that they could handle Beckett's port, they had to fumble around with it for a long time to get it to work. They did a blood count and said that it looked good, took a blood culture (which isn't back yet), gave him some fluids and he perked up quite a bit.
He seemed worse today though, and his fever spiked up a bit to 102.4 or so. The on-call doctor tonight thought we should come in for a chest x-ray to rule out pneumonia, so here we are. Also, you are supposed to apparently take a blood culture every 24 hours when someone with a port has a fever for more than a day, since there is some concern that the port site could become infected.
We will know more tomorrow. For right now everyone is fine, just very, very tired. On another front we are hopefully going to San Francisco on Tuesday to get a second opinion on Beckett's treatment. Dr. Fisher may very well have suggested the best option, but this is a complex decision because we are getting away from the standard treatment for this, and basically we have to choose from the best of several bad alternatives.
Last night we went to Dominican after the on-call oncology doctor at Stanford advised us to go in because of Beckett's temperature. After they assured us that they could handle Beckett's port, they had to fumble around with it for a long time to get it to work. They did a blood count and said that it looked good, took a blood culture (which isn't back yet), gave him some fluids and he perked up quite a bit.
He seemed worse today though, and his fever spiked up a bit to 102.4 or so. The on-call doctor tonight thought we should come in for a chest x-ray to rule out pneumonia, so here we are. Also, you are supposed to apparently take a blood culture every 24 hours when someone with a port has a fever for more than a day, since there is some concern that the port site could become infected.
We will know more tomorrow. For right now everyone is fine, just very, very tired. On another front we are hopefully going to San Francisco on Tuesday to get a second opinion on Beckett's treatment. Dr. Fisher may very well have suggested the best option, but this is a complex decision because we are getting away from the standard treatment for this, and basically we have to choose from the best of several bad alternatives.
Thursday, January 17, 2008
Plan B
Today we met with Dr. Fisher and Trish Murphy (oncological nurse practioner) about a new treatment regimen for Beckett. Allergic reactions to carboplatin are pretty common, and they are usually able to desensitize patients to the medicine over time. Beckett's allergic reaction, however, was severe enough that desensitizing him to carboplatin is not an option.
So, we are looking at a new chemotherapy drug and treatment plan. Dr. Fisher went over some different plans with us that included oral medications (not a good idea, especially with Cassie being pregnant) and stopping treatment altogether. What Dr. Fisher recommended was going to another IV treatment, the old one that was standard in the 80's before carboplatin and vincristine became the standard treatment for this kind of low-grade tumor.
The older drug is called Dactinomycin (or Actinomycin-D, or Cosmegen) and it has a success rate roughly equal to the other treatment we were doing, and it will also be given in conjunction with Vincristine. The downsides to this medication is that it is much more like conventional chemotherapy. Beckett will go to the hospital every day for a week, although the treatments should be shorter. Beckett will get more sick and will take more time to recover after a week of chemo. His white cell counts will likely get quite low; they hadn't budged on the other treatment. The side effects are roughly the same except that it is much more likely that his hair will fall out.
The silver lining is that we will have slightly more time weeks off of treatment, and the overall treatment course is shorter (30 weeks), so we should still finish slightly before we had planned to. Beckett will probably start not next week but the week after.
We haven't posted a lot to the blog because chemotherapy had become pretty routine, but this certainly changes things quite a bit. On the plus side, Cassie's pregnancy is going really well so far and she is already past the point where Beckett was born.
So, we are looking at a new chemotherapy drug and treatment plan. Dr. Fisher went over some different plans with us that included oral medications (not a good idea, especially with Cassie being pregnant) and stopping treatment altogether. What Dr. Fisher recommended was going to another IV treatment, the old one that was standard in the 80's before carboplatin and vincristine became the standard treatment for this kind of low-grade tumor.
The older drug is called Dactinomycin (or Actinomycin-D, or Cosmegen) and it has a success rate roughly equal to the other treatment we were doing, and it will also be given in conjunction with Vincristine. The downsides to this medication is that it is much more like conventional chemotherapy. Beckett will go to the hospital every day for a week, although the treatments should be shorter. Beckett will get more sick and will take more time to recover after a week of chemo. His white cell counts will likely get quite low; they hadn't budged on the other treatment. The side effects are roughly the same except that it is much more likely that his hair will fall out.
The silver lining is that we will have slightly more time weeks off of treatment, and the overall treatment course is shorter (30 weeks), so we should still finish slightly before we had planned to. Beckett will probably start not next week but the week after.
We haven't posted a lot to the blog because chemotherapy had become pretty routine, but this certainly changes things quite a bit. On the plus side, Cassie's pregnancy is going really well so far and she is already past the point where Beckett was born.
Thursday, January 10, 2008
Allergic Reaction
Today we went to the hospital for week 17 of our treatment. Beckett was seen by the nurse practitioner and she was so happy with how his breathing and airway was looking. We were also happy to report that we finally got the all clear from the public health nurse that Beckett's Giardia is all gone.
Anyway, the treatment was going as normal. I was laying down with Beckett to get him to hopefully take a nap. I noticed that it seemed that he was breathing kind of hard and coughing a bit so I went to get the nurse. It turns out it was a good thing I did as Beckett was having an allergic reaction to the carboplatin which is fairly common at this stage. The type of reaction is called anaphylactic (kind of like when people are allergic to bee stings, I think).
The nurses immediately ran in and took the carboplatin off his IV and administered benadryl and hydrocortisone by his IV (port). They also paged the Nurse Practitioner who came right away and ordered extra fluids and called the respiratory specialist. They gave Beckett blow by oxygen, which is when they just put the mask near him, but don't make him wear it, which is good because he was not happy with all the people fussing around him. They also gave him a breathing treatment which was pretty uncooperative with. They got his O2 saturation to 97% which is where they wanted it and then they decided to stop the breathing treatment because he sounded clearer and because he was so mad that his heart rate was going up pretty high.
Finally everyone left and I cuddled him for about 2 minutes and he fell fast asleep from the Bendryl. Totally ZONKED! So zonked that he didn't even wiggled when they took his blood pressure.
Trish and Dr. Fisher came in to talk to me. They said that they would not be continuing Carboplatin as this was considered a severe reaction. So we are having a meeting next week to discuss options for treatment ("plan B" as the Dr. put it). Simply put, the options are: another IV medicine, an oral medication, or watch and wait with frequent scans. I am guessing they are going to recommend the other IV medicine as Beckett is probably too young to reliably take a pill and he responds so poorly to general anesthesia, but we will see.
Now we are home and he is just fine. He just watched Diego: Baby Jaguar on Nick On Demand for the 800th time and is getting ready for bed like nothing happened.
Anyway, the treatment was going as normal. I was laying down with Beckett to get him to hopefully take a nap. I noticed that it seemed that he was breathing kind of hard and coughing a bit so I went to get the nurse. It turns out it was a good thing I did as Beckett was having an allergic reaction to the carboplatin which is fairly common at this stage. The type of reaction is called anaphylactic (kind of like when people are allergic to bee stings, I think).
The nurses immediately ran in and took the carboplatin off his IV and administered benadryl and hydrocortisone by his IV (port). They also paged the Nurse Practitioner who came right away and ordered extra fluids and called the respiratory specialist. They gave Beckett blow by oxygen, which is when they just put the mask near him, but don't make him wear it, which is good because he was not happy with all the people fussing around him. They also gave him a breathing treatment which was pretty uncooperative with. They got his O2 saturation to 97% which is where they wanted it and then they decided to stop the breathing treatment because he sounded clearer and because he was so mad that his heart rate was going up pretty high.
Finally everyone left and I cuddled him for about 2 minutes and he fell fast asleep from the Bendryl. Totally ZONKED! So zonked that he didn't even wiggled when they took his blood pressure.
Trish and Dr. Fisher came in to talk to me. They said that they would not be continuing Carboplatin as this was considered a severe reaction. So we are having a meeting next week to discuss options for treatment ("plan B" as the Dr. put it). Simply put, the options are: another IV medicine, an oral medication, or watch and wait with frequent scans. I am guessing they are going to recommend the other IV medicine as Beckett is probably too young to reliably take a pill and he responds so poorly to general anesthesia, but we will see.
Now we are home and he is just fine. He just watched Diego: Baby Jaguar on Nick On Demand for the 800th time and is getting ready for bed like nothing happened.
Monday, January 7, 2008
Eyes Looking Good
Today we went to the pediatric opthalmologist. We actually saw two doctors both of whom were awesome. They were able to see Beckett's optic nerve and assess his vision some what which they hadn't been able to do previously.
The news is good because they did not see much if any change from the last visit (around 6 months ago). They said that Beckett's vision was 20/30 with both eyes which is awesome but they can't really check visual acuity well at this age.
The appointment itself wasn't too bad either. My aunt came with us to help out as holding a wriggling 2.5 year old while they put drops in his eyes is a bit hard when you're 7 months pregnant. But... it wasn't as bad as last time when he screamed the whole time and he did a GREAT job.
I also had an appointment today for an nonstress test for the baby and it was great. He moved around like a champ and all looks well. Sadly, the lab lost my bloodwork from last week so we may need to redo it unless it "shows up..."
HAPPY NEW YEAR!
The news is good because they did not see much if any change from the last visit (around 6 months ago). They said that Beckett's vision was 20/30 with both eyes which is awesome but they can't really check visual acuity well at this age.
The appointment itself wasn't too bad either. My aunt came with us to help out as holding a wriggling 2.5 year old while they put drops in his eyes is a bit hard when you're 7 months pregnant. But... it wasn't as bad as last time when he screamed the whole time and he did a GREAT job.
I also had an appointment today for an nonstress test for the baby and it was great. He moved around like a champ and all looks well. Sadly, the lab lost my bloodwork from last week so we may need to redo it unless it "shows up..."
HAPPY NEW YEAR!
Saturday, January 5, 2008
New Year, Not much else new
We had a great Christmas and New Year. Beckett got to spend time with two of his uncles which was great fun. Now he is having a good time enjoying all of his awesome new Christmas toys. He's doing great. We think we finally kicked the giardia (still waiting for final clearance from the public health nurse) and he is still handling chemo well. We still haven't completed an MRI but we got a referral to ENT and pulmonology to decide how best to proceed with anesthesia and we are continuing daily breathing treatments at home, which he HATES.
All is well with baby #2 also. According to ultrasound he now weighs 2 lbs, 9 oz which is more than Beckett weighed when he was born. He moves around A LOT, which I think is great. I can actually see my shirt moving. Since it is round about the time of pregnancy when Beckett was born (29 weeks) my doctor is increasing the monitoring to weekly NSTs and weekly Doppler checks of the uterine artery. I feel like I have learned so much about preeclampsia, HELLP syndrome, inherited thrombophilia that I over analyze everything that happens. I spend a lot of time just waiting for things to go bad.
I am now on medical leave which has really helped with the stress. Worrying about Beckett, daycare, chemo and the new baby along with work was just exhausting me. I am so happy that my job is so flexible and my colleagues so supportive that we made it work. I sure do miss my students though!
All is well with baby #2 also. According to ultrasound he now weighs 2 lbs, 9 oz which is more than Beckett weighed when he was born. He moves around A LOT, which I think is great. I can actually see my shirt moving. Since it is round about the time of pregnancy when Beckett was born (29 weeks) my doctor is increasing the monitoring to weekly NSTs and weekly Doppler checks of the uterine artery. I feel like I have learned so much about preeclampsia, HELLP syndrome, inherited thrombophilia that I over analyze everything that happens. I spend a lot of time just waiting for things to go bad.
I am now on medical leave which has really helped with the stress. Worrying about Beckett, daycare, chemo and the new baby along with work was just exhausting me. I am so happy that my job is so flexible and my colleagues so supportive that we made it work. I sure do miss my students though!
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