I know that I have been rather quiet the last few days regarding Zoë and her status. You should all take this as good news. There has been much of the same the last few days.
Feeds: Nutrition is still trying to plump up Zoë. She was placed on 24 hour feeds at 30 calories an ounce a few days ago. This completely stuffed her full to the point of major pukes and huge poops in the morning and at night. So I got my way, and Zoë was reduced down to 18 hour feeds at 30 calories an ounce. She is still puking a bit, but not as bad. Mostly when the nurses give her meds on top of a feeding. So we are now working to time meds in
between feedings.
As for her nephrostomy tubes: There is a three way stale mate between Oncology, Nephrology, and Urology. Each side has pros and cons, and no side seems to have an option that is better than the other sides.
Oncology: Wants the left tube removed, and the catheter out. They don't want infection, and feel like because her kidney is working properly it does not need to stay in.
Nephrology: Wants the tube to stay in, because they feel as though her kidney is functioning well, and since there is
the drain why not take advantage of it while she is having chemo to protect the kidney.
Urology: Wants to place an internal tube between the kidney and bladder in order to not have a risk of the nephrostomy tube falling out, and to cut down on the risk of infection.
Oncology: Does not want the internal tube placed because of risk of infection during the procedure.
Nephrology: Does not care if the tube is internal or external, but would like the tube.
Urology: Must just love looking at all of the charts and graphs of Zoë's kidney functions, and want more pee data.
Oncology: Wishes that the tumor would just shrink, and get off of Zoë's kidneys already so they don't have to deal with Nephrology and Urology as much any more.
I just want a decision to be made all ready so Zoë can get that damn catheter out!
So the Oncology doctors keep coming around and asking the same question all the time, "How are you doing with staying here, are you OK to stay here longer?" I respond with the same answer over and over again. "I will be
here for as long as it takes for Zoë to be ready to go home. There is no rush."
I believe some plans are starting to be made for Zoë.
What I know:
Monday Zoë will have an MRI to look at her tumor. The goal is to get an accurate measure of how much it has shrunk since the second round of chemo, and to possibly learn more about where the tumor is growing from (either
the stomach wall, the right ureter, the bladder are suspected, but there isn't an answer at the moment).
Tuesday is the BIG meeting. This is where ALL of Zoë's teams of doctors, including her surgeons will be meeting to work out a plan for Zoë.
What I speculate:
When Zoë was diagnosed the doctors told us the plan was 10 rounds of chemo, surgery after the 5th-7th round, then more chemo and radiation. When we signed the paperwork for Zoë's second round of chemo the plan was reduced to 8 rounds of chemo, surgery, then more chemo and radiation.
Because we know her tumor has not only stopped (which at the time of the diagnosis the doctors just wanted the tumor to stop), but shrunk by 20% after the first round. My guess is they are speculating that the tumor has shrunk again after the second round. Perhaps enough to have surgery after the third round? I cannot say for sure, but one of her doctors told me today that they are thinking to give Zoë her third round as soon as Tuesday or Wednesday of next week.
You maybe thinking wow that is so soon. Well yes for two reasons. One Zoë got only half the amount of chemo this last round as calculated for her size. This was done because the drugs given were some serious shit. There is not a lot, if any data on giving these drugs to an infant Zoë's age. She is almost like a guinea pig in this sense. So the doctors being extra careful gave her only half of what they thought she may be able to handle. It turns out that she not only handled it...but her body barely even noticed that she had chemo. Her white blood cell numbers dipped, but she did not go neutrapenic! Because of this it looks like she is starting to bounce back again already, and the doctors think that she will be ready for more chemo next week.
So my speculation is this. I think the doctors want to do the MRI, then if all looks good give her a round of chemo (the same drugs that killed off 20% of the tumor), then do surgery soon after once her numbers are up.
If this is the case Zoë would probably stay in the hospital until she recovers from the surgery. Which is why I think
we keep getting asked, "Are you sure you are OK staying here, are you sure you don't want to go home?"
Again this is all speculation on my part. So why am I sharing my speculations? Well because I want to see if I am right or not, hehehe. How are you supposed to know if I am right if I don't tell you my predictions.
So enough of that...on to the fun stuff...
Since Zoë has good blood numbers she is able to escape her room. We have been partaking in many of the wonderful things the hospital has to offer. As you know we saw some dragons, we also listened to a beautiful harpist, and Mommy played some Ms Packman (and discovered she is NOT good at it). We have looked at the Dr. Seuss exhibit, and visit the fish several times a day. Zoë and I also go up to the 8th floor to visit a new friend Pierce who is in the cardiac wing.
We found the hospital library this morning bright and early, and were the first ones in. Only to discover that there are not many fun books there at all. Well not unless you are studying to be a doctor. But there are some big windows that look out to the garden, and a beautiful tree that we enjoyed for a while.
We also are getting some history lessons. We discovered that Children's Hospital was one of the first to use a hyperbaric chamber to do open hear surgery in, before the iron lung was invented.
This hospital is truely amazing. There is colorful art, and interesting facts everywhere. We wander around and learn where the elevators go, and what is on each floor. We have learned short cuts, and back ways, and encountered many dead ends. I think that security must watch us on camera and wonder where we are going next. There guess is as good as ours.
When we are in our room Zoë works on head and neck exercises, she cannot do tummy time, but she can sit up with my help. She also does stretches two times a day, and "rides a bike" with her feet. Speaking of feet.....at what point do cute baby feet turn into ugly adult feet?
When Zoë is asleep the last few days I have been working like a maniac to finish her website. Oh I cannot wait to launch it! I am just waiting for some pictures from the dinner, and I have one or two more minor things to work on...then I will be launching her site!! *big smiles* I have a tentative date of Saturday, but if I get the photos tomorrow, and work out the few small things I may have it launched by tomorrow evening....hint hint. :)
Well Zoë is in dreamland....and off I go to join her!
This post was brought to you tonight by the power of hope.
Love
and Hugs from CHB!
Feeds: Nutrition is still trying to plump up Zoë. She was placed on 24 hour feeds at 30 calories an ounce a few days ago. This completely stuffed her full to the point of major pukes and huge poops in the morning and at night. So I got my way, and Zoë was reduced down to 18 hour feeds at 30 calories an ounce. She is still puking a bit, but not as bad. Mostly when the nurses give her meds on top of a feeding. So we are now working to time meds in
between feedings.
As for her nephrostomy tubes: There is a three way stale mate between Oncology, Nephrology, and Urology. Each side has pros and cons, and no side seems to have an option that is better than the other sides.
Oncology: Wants the left tube removed, and the catheter out. They don't want infection, and feel like because her kidney is working properly it does not need to stay in.
Nephrology: Wants the tube to stay in, because they feel as though her kidney is functioning well, and since there is
the drain why not take advantage of it while she is having chemo to protect the kidney.
Urology: Wants to place an internal tube between the kidney and bladder in order to not have a risk of the nephrostomy tube falling out, and to cut down on the risk of infection.
Oncology: Does not want the internal tube placed because of risk of infection during the procedure.
Nephrology: Does not care if the tube is internal or external, but would like the tube.
Urology: Must just love looking at all of the charts and graphs of Zoë's kidney functions, and want more pee data.
Oncology: Wishes that the tumor would just shrink, and get off of Zoë's kidneys already so they don't have to deal with Nephrology and Urology as much any more.
I just want a decision to be made all ready so Zoë can get that damn catheter out!
So the Oncology doctors keep coming around and asking the same question all the time, "How are you doing with staying here, are you OK to stay here longer?" I respond with the same answer over and over again. "I will be
here for as long as it takes for Zoë to be ready to go home. There is no rush."
I believe some plans are starting to be made for Zoë.
What I know:
Monday Zoë will have an MRI to look at her tumor. The goal is to get an accurate measure of how much it has shrunk since the second round of chemo, and to possibly learn more about where the tumor is growing from (either
the stomach wall, the right ureter, the bladder are suspected, but there isn't an answer at the moment).
Tuesday is the BIG meeting. This is where ALL of Zoë's teams of doctors, including her surgeons will be meeting to work out a plan for Zoë.
What I speculate:
When Zoë was diagnosed the doctors told us the plan was 10 rounds of chemo, surgery after the 5th-7th round, then more chemo and radiation. When we signed the paperwork for Zoë's second round of chemo the plan was reduced to 8 rounds of chemo, surgery, then more chemo and radiation.
Because we know her tumor has not only stopped (which at the time of the diagnosis the doctors just wanted the tumor to stop), but shrunk by 20% after the first round. My guess is they are speculating that the tumor has shrunk again after the second round. Perhaps enough to have surgery after the third round? I cannot say for sure, but one of her doctors told me today that they are thinking to give Zoë her third round as soon as Tuesday or Wednesday of next week.
You maybe thinking wow that is so soon. Well yes for two reasons. One Zoë got only half the amount of chemo this last round as calculated for her size. This was done because the drugs given were some serious shit. There is not a lot, if any data on giving these drugs to an infant Zoë's age. She is almost like a guinea pig in this sense. So the doctors being extra careful gave her only half of what they thought she may be able to handle. It turns out that she not only handled it...but her body barely even noticed that she had chemo. Her white blood cell numbers dipped, but she did not go neutrapenic! Because of this it looks like she is starting to bounce back again already, and the doctors think that she will be ready for more chemo next week.
So my speculation is this. I think the doctors want to do the MRI, then if all looks good give her a round of chemo (the same drugs that killed off 20% of the tumor), then do surgery soon after once her numbers are up.
If this is the case Zoë would probably stay in the hospital until she recovers from the surgery. Which is why I think
we keep getting asked, "Are you sure you are OK staying here, are you sure you don't want to go home?"
Again this is all speculation on my part. So why am I sharing my speculations? Well because I want to see if I am right or not, hehehe. How are you supposed to know if I am right if I don't tell you my predictions.
So enough of that...on to the fun stuff...
Since Zoë has good blood numbers she is able to escape her room. We have been partaking in many of the wonderful things the hospital has to offer. As you know we saw some dragons, we also listened to a beautiful harpist, and Mommy played some Ms Packman (and discovered she is NOT good at it). We have looked at the Dr. Seuss exhibit, and visit the fish several times a day. Zoë and I also go up to the 8th floor to visit a new friend Pierce who is in the cardiac wing.
We found the hospital library this morning bright and early, and were the first ones in. Only to discover that there are not many fun books there at all. Well not unless you are studying to be a doctor. But there are some big windows that look out to the garden, and a beautiful tree that we enjoyed for a while.
We also are getting some history lessons. We discovered that Children's Hospital was one of the first to use a hyperbaric chamber to do open hear surgery in, before the iron lung was invented.
This hospital is truely amazing. There is colorful art, and interesting facts everywhere. We wander around and learn where the elevators go, and what is on each floor. We have learned short cuts, and back ways, and encountered many dead ends. I think that security must watch us on camera and wonder where we are going next. There guess is as good as ours.
When we are in our room Zoë works on head and neck exercises, she cannot do tummy time, but she can sit up with my help. She also does stretches two times a day, and "rides a bike" with her feet. Speaking of feet.....at what point do cute baby feet turn into ugly adult feet?
When Zoë is asleep the last few days I have been working like a maniac to finish her website. Oh I cannot wait to launch it! I am just waiting for some pictures from the dinner, and I have one or two more minor things to work on...then I will be launching her site!! *big smiles* I have a tentative date of Saturday, but if I get the photos tomorrow, and work out the few small things I may have it launched by tomorrow evening....hint hint. :)
Well Zoë is in dreamland....and off I go to join her!
This post was brought to you tonight by the power of hope.
Love
and Hugs from CHB!
RSS Feed