I am recovering!
Today is May 15. As you can see, I am mostly sleeping the day away. I had a 5 1/2 hour surgery yesterday to remove a neuroblastoma tumor from my abdomen. Thanks to mommy and daddy, Nana and Pop-pop, Gale and Kristin for coming to the hospital and waiting for me to come out. I also want to thank everyone who sent emails, cards, said prayers for me, sent good wishes, etc. for everything to go well. I know my big sister is thinking about me too even though she can't talk.
So far so good. My surgeon was great! He successfully removed the tumor. My parents were worried sick about me the entire time.
The tube in my nose (that goes to my stomach) is not very comfortable. I keep trying to pull the tube out, so mommy put socks on my hands. I heard a doctor say that I am going to get it out very soon. Nobody has fed me in 2 days! I am starving. Mommy and Daddy, mostly mommy, is staying with me in the hospital. They have brought my sound machine and play classical music in my room to drown out the noisy doctors and nurses and machines that beep all day long. My parents rock!
So far so good. My surgeon was great! He successfully removed the tumor. My parents were worried sick about me the entire time.
The tube in my nose (that goes to my stomach) is not very comfortable. I keep trying to pull the tube out, so mommy put socks on my hands. I heard a doctor say that I am going to get it out very soon. Nobody has fed me in 2 days! I am starving. Mommy and Daddy, mostly mommy, is staying with me in the hospital. They have brought my sound machine and play classical music in my room to drown out the noisy doctors and nurses and machines that beep all day long. My parents rock!
May 16, 2009
Big day for me! The doctor removed the tube from my nose and I pooped! The doctors were waiting for me to do that until I could get any liquids and/or formula. This afternoon I had several bottles of my favorite formula and mommy nursed me a few times as well. Delicious! I am getting pain medication every 3-4 hours, which is better than yesterday when I could not go more then 2 hours between medications.
May 17, 2009
As you can see, my mommy and I get pretty tired while staying here! Mommy has to sleep in this chair while I get the bed.
Another big recovery day for me! I have not had any pain medication via my IV. In fact, I have been eating so well that nurse Katie took out my IV this afternoon. One less tube I have to be hooked up to. And I am doing so well, they are trying to find a room for me up on 7 Long and get me out of ICU. Unfortunately, all the rooms on 7 Long are full right now. So I will likely stay another night here. Everybody is talking that I might get to go home Tuesday. It would be nice to go home and get a bath.
Another big recovery day for me! I have not had any pain medication via my IV. In fact, I have been eating so well that nurse Katie took out my IV this afternoon. One less tube I have to be hooked up to. And I am doing so well, they are trying to find a room for me up on 7 Long and get me out of ICU. Unfortunately, all the rooms on 7 Long are full right now. So I will likely stay another night here. Everybody is talking that I might get to go home Tuesday. It would be nice to go home and get a bath.
May 18, 2009
Mommy and I moved out of ICU last night and onto a floor in the Pediatric Cancer Ward (7 Long). The nurses moved us at 10:30 pm and once I got to the "Ward" everyone wanted to test my vital signs. Mom and I were so tired once everyone left us alone we went straight to sleep. Its really nice and quiet in our new room - especially compared to ICU! I am feeling even better today than yesterday. I'm not even taking Tylenol today.
The surgeons came to see me early this morning (6:30 am - doesnt anyone sleep around here????) and I had a big smile for Dr. Aaron (the resident). Dr Aaron is amazed at how well I am doing and there are whispers that I may get to go home tomorrow. That would be great! I miss my room and my big sister.
Dad put my play gym in my crib this morning and I played like crazy (thats me playing in the photo - I look good!). It feels great to stretch my arms and legs. I'm getting my appetite back. Mommy is giving me bottles with half formula and half Pedilyte. Its good not to have a rumbling tummy anymore.
Thank you to everyone who has been calling and writing to see how I am doing. It makes Mommy and Daddy feel so much better to hear from friends and family. Also, a BIG thank you to everyone who has been bringing food to our house. Having food available gives Mommy and Daddy so much more time to take care of me and play with Jameson.
Please keep me in your thoughts and prayers as I will be getting the test results on my tumor later this week. We are praying for favorable pathology (now thats an oxymoron).
The surgeons came to see me early this morning (6:30 am - doesnt anyone sleep around here????) and I had a big smile for Dr. Aaron (the resident). Dr Aaron is amazed at how well I am doing and there are whispers that I may get to go home tomorrow. That would be great! I miss my room and my big sister.
Dad put my play gym in my crib this morning and I played like crazy (thats me playing in the photo - I look good!). It feels great to stretch my arms and legs. I'm getting my appetite back. Mommy is giving me bottles with half formula and half Pedilyte. Its good not to have a rumbling tummy anymore.
Thank you to everyone who has been calling and writing to see how I am doing. It makes Mommy and Daddy feel so much better to hear from friends and family. Also, a BIG thank you to everyone who has been bringing food to our house. Having food available gives Mommy and Daddy so much more time to take care of me and play with Jameson.
Please keep me in your thoughts and prayers as I will be getting the test results on my tumor later this week. We are praying for favorable pathology (now thats an oxymoron).
May 19, 2009
This is mommy and me waiting to check out of the hospital. Check me out sans IV. Woohoo! The surgeon gave us the thumbs up to leave this morning; however my oncologist, Dr. Matthay, wanted a urine sample prior to me leaving. Of course, today was the one day in my life that I did not need to pee. We waited until 3 pm for me to do my thing and then we left the hospital.
Its nice to be home again. It is warm and sunny at home. Mommy, Daddy, Meriniza, Pop-Pop, Jameson and I hung out on the deck and soaked up the fresh air. I lost quite a bit of weight in the hospital so Meriniza and Mommy fretted over me all afternoon. Mommy is a little nervous to sleep in a different room than me. We have been roommates for the past 7 days (personally I am looking forward to a little alone time).
Dr Matthay and Dr Robbins estimate that we will receive the results of my tumor biology tests on Friday. Please keep thinking good thoughts for me.
Its nice to be home again. It is warm and sunny at home. Mommy, Daddy, Meriniza, Pop-Pop, Jameson and I hung out on the deck and soaked up the fresh air. I lost quite a bit of weight in the hospital so Meriniza and Mommy fretted over me all afternoon. Mommy is a little nervous to sleep in a different room than me. We have been roommates for the past 7 days (personally I am looking forward to a little alone time).
Dr Matthay and Dr Robbins estimate that we will receive the results of my tumor biology tests on Friday. Please keep thinking good thoughts for me.
May 21, 2009 - BIG DAY
As you can see, I feel MUCH BETTER today! My doctor called my daddy today and gave him great news. Several of the test reports came in today, and the most "critical" one, the N-MYC oncogene, was favorable!!!! For you untrained neuroblastoma folks, this means that I will not need to have radiation, a stem cell transplant or a bone marrow transplant. Whew! Now we wait for one more test to find out if I get a little chemotherapy (maybe 1 or 2 months) or no chemotherapy. But who cares! The most important one (the N-MYC) was favorable!!!!!!! Besides, I have seen pop-pop with no hair and he looks pretty good without it.
Unless the last test result comes in unfavorable (probably get the result end of next week), I will go see Dr. Robbins once a week for a while. She will examine me to see how my liver is doing. Hopefully, the little bit of neuroblastoma that is in my liver will go away on its own! I have been reading up on my disease, and it is fairly common for this to go away on its own in dudes my age when the tuomr comes out and the N-MYC if favorable. Dr. Robbins has the coldest hands known to man, so it would be nice if this went away soon! Then, about once a month, I will get an ultrasound of my liver to confirm that my liver is clear of the tumor. It involves some kind of crazy machine where they put cold gel all over my tummy. Don't quite get what is going on there, but it is not as scary as the CAT scan machine.
Thank you to everyone who has been thinking good thoughts, praying, etc. for me. I think it defintely helped!
Unless the last test result comes in unfavorable (probably get the result end of next week), I will go see Dr. Robbins once a week for a while. She will examine me to see how my liver is doing. Hopefully, the little bit of neuroblastoma that is in my liver will go away on its own! I have been reading up on my disease, and it is fairly common for this to go away on its own in dudes my age when the tuomr comes out and the N-MYC if favorable. Dr. Robbins has the coldest hands known to man, so it would be nice if this went away soon! Then, about once a month, I will get an ultrasound of my liver to confirm that my liver is clear of the tumor. It involves some kind of crazy machine where they put cold gel all over my tummy. Don't quite get what is going on there, but it is not as scary as the CAT scan machine.
Thank you to everyone who has been thinking good thoughts, praying, etc. for me. I think it defintely helped!
May 27, 2009
Yesterday I had an appointment at UCSF with my oncologist, Dr Robbins. I must be feeling better because her cold hands did not bother me at all. In fact I was happy to see her and greeted her with lots of coos and toothless smiles. Dr Robbins wanted to see me to see how I have been doing since being released from the hospital. There is no obvious swelling of my liver (good sign since the neuroblastoma has metastasized to my liver); my large and very tough guy incision is doing well and all vitals look good. In fact, I have gained back all the weight I lost in the hospital (everyone knows how bad hospital food tastes).
Doctors Robbins and Matthay are waiting for the last tests on my neuroblastoma tumor to determine the proper staging of my disease and treatment protocols. Mom and Dad are hoping and praying for the last tests to come in as favorable. If they are favorable, there is a chance I will be staged as 4S and will not need, at this time, any chemotherapy. The doctors will keep a close eye on me with frequent urine tests (VMA) and periodic scans to ensure the cancer is regressing on its own. If the final tests are not favorable, I will be staged as a 4 which requires chemotherapy treatments. Dr Robbins thinks the final test results will be available by the end of this week.
Its such a small world, Mommy figured out that she is cousins with Anita's husband Carlos. Anita works at the UCSF Pediatric Outpatient Cancer Clinic and Carlos also works at UCSF. Mommy and Carlos have the same great grandfather. So I guess I am a cousin of Carlos' too!
Doctors Robbins and Matthay are waiting for the last tests on my neuroblastoma tumor to determine the proper staging of my disease and treatment protocols. Mom and Dad are hoping and praying for the last tests to come in as favorable. If they are favorable, there is a chance I will be staged as 4S and will not need, at this time, any chemotherapy. The doctors will keep a close eye on me with frequent urine tests (VMA) and periodic scans to ensure the cancer is regressing on its own. If the final tests are not favorable, I will be staged as a 4 which requires chemotherapy treatments. Dr Robbins thinks the final test results will be available by the end of this week.
Its such a small world, Mommy figured out that she is cousins with Anita's husband Carlos. Anita works at the UCSF Pediatric Outpatient Cancer Clinic and Carlos also works at UCSF. Mommy and Carlos have the same great grandfather. So I guess I am a cousin of Carlos' too!
June 3, 2009
We are still waiting for the results of the final two chromosomal tests (1p and 11q aberrations). Dr Robbins is expecting the results any day now. Mom and Dad are on pins and needles waiting for the results. I wish they would arrive so Mom and Dad could relax a little (Dad’s hair has turned salt and pepper before my eyes. Mom is running to the hairdresser to take care of her “salt”.).
I had a visit with Dr Robbins on Monday at UCSF. She did a check up on me and there are no visible signs of the liver swelling or other areas of cancer spread (lymph nodes). The nice nurses checked my vitals and everything looks good. I’m up to a whopping 14.5 pounds.
Although the results of the 1p and 11q tests were not received today, my parents did receive Dr. Shimada’s classification. It was favorable.
Next Monday I have an ultrasound appointment at UCSF to make sure there is no new spread of the neuroblastoma and the lesions on the liver are stable. I will also have a urine analysis to check my VMA and HVA levels. At diagnosis my VMA was 124 (this is high and indicates neuroblastoma). After the tumor was removed my VMA level dropped to 22 which is normal. The doctors want to make sure that my VMA levels remain within a normal range. If they increase dramatically this is a good indication that the neuroblastoma is on the move.
Today is my grandmother’s, Lolo, birthday. Happy Birthday Lolo! I want you to know I am feeling good and smiley today.
I had a visit with Dr Robbins on Monday at UCSF. She did a check up on me and there are no visible signs of the liver swelling or other areas of cancer spread (lymph nodes). The nice nurses checked my vitals and everything looks good. I’m up to a whopping 14.5 pounds.
Although the results of the 1p and 11q tests were not received today, my parents did receive Dr. Shimada’s classification. It was favorable.
Next Monday I have an ultrasound appointment at UCSF to make sure there is no new spread of the neuroblastoma and the lesions on the liver are stable. I will also have a urine analysis to check my VMA and HVA levels. At diagnosis my VMA was 124 (this is high and indicates neuroblastoma). After the tumor was removed my VMA level dropped to 22 which is normal. The doctors want to make sure that my VMA levels remain within a normal range. If they increase dramatically this is a good indication that the neuroblastoma is on the move.
Today is my grandmother’s, Lolo, birthday. Happy Birthday Lolo! I want you to know I am feeling good and smiley today.
June 8, 2009
We are still waiting for the final two chromosomal tests. Dr Robbins checked with the lab performing the tests and they are anticipating that the results will not be ready until late next week. Uggh. My poor parents are so worried and are going crazy with the waiting.
I spent much of today at UCSF meeting with Dr Robbins and having an ultrasound performed on my abdomen. The ultrasound was very relaxing. The room was very warm and dark. I spent most of the time smiling at the technician and trying to hold her hand while I was kicking back in my diaper. The radiologist prepared his report within 30 minutes of the ultrasound being performed (this doctor needs to go the lab to help out with the chromosome test)! Based on the results of the ultrasound no new masses have grown where my tumor was resected (good news), the lesions on my liver have not grown and no new lesions have developed (good news) and no new evidence of cancer in my abdomen (great news).
I also gave a urine sample at the UCSF pediatric oncology clinic. The sample will be used to test my VMA and HVA levels. These levels will give everyone an idea if the neuroblastoma is stable or is spreading. We should know the results of this test this week. According to Dr Robbins for a guy my age anything under 35 is considered normal (last test it was 22).
If the final chromosome tests come back favorable, I will not have to go back to UCSF until July 6th. Which is fine by me since 400 Parnassus is the coldest and most windy place on earth. Not to mention exhausting. No one lets you sleep at hospitals. I came home today and took a 4 hour nap.
I spent much of today at UCSF meeting with Dr Robbins and having an ultrasound performed on my abdomen. The ultrasound was very relaxing. The room was very warm and dark. I spent most of the time smiling at the technician and trying to hold her hand while I was kicking back in my diaper. The radiologist prepared his report within 30 minutes of the ultrasound being performed (this doctor needs to go the lab to help out with the chromosome test)! Based on the results of the ultrasound no new masses have grown where my tumor was resected (good news), the lesions on my liver have not grown and no new lesions have developed (good news) and no new evidence of cancer in my abdomen (great news).
I also gave a urine sample at the UCSF pediatric oncology clinic. The sample will be used to test my VMA and HVA levels. These levels will give everyone an idea if the neuroblastoma is stable or is spreading. We should know the results of this test this week. According to Dr Robbins for a guy my age anything under 35 is considered normal (last test it was 22).
If the final chromosome tests come back favorable, I will not have to go back to UCSF until July 6th. Which is fine by me since 400 Parnassus is the coldest and most windy place on earth. Not to mention exhausting. No one lets you sleep at hospitals. I came home today and took a 4 hour nap.
June 9, 2009
As you can tell I am just tickled pink today. My parents received the results from my urine test that was taken yesterday and my VMA level is at 16. This is lower than the test that was performed when I checked out of the hospital (it was 22). My parents know this information is good news but are not certain how to interpret this information (does this mean the cancer in the liver is regressing???).
June 20, 2009
Yesterday I met with one of my oncologist, Dr Matthay, at UCSF. Dr Matthay is a Neuroblastoma expert and I feel very lucky to have her as one of my doctors. Dr Matthay performed a physical exam on me and it appears that I am doing well ( however, scans and urine tests are better at detecting the cancer than a physical exam). I am feeling good and now weigh 15 pounds!
We are still waiting for the final chromosome test. The lab that performs the test has put other more critical or higher risk Neuroblastoma children ahead of me. Doctors are waiting for results to make time sensitive treatment decisions for these children. I am happy to let them go ahead of me so they get the best chance at getting better.
Accorind to Dr Matthay I am being staged at 4S and will not at this time receive chemotherapy even if my chromosome test comes back unfavorable. Given my age (young) and my other favorable tests the doctors want to monitor me for a while with scans and urine tests to determine whether the cancer in my liver will regress on its own. If the last test is unfavorable, the monitoring tests will occur more frequently and for a longer duration (until I'm 20). If the Neuroblastoma starts to spread again, treatment decisions will be made at that time.
We are still waiting for the final chromosome test. The lab that performs the test has put other more critical or higher risk Neuroblastoma children ahead of me. Doctors are waiting for results to make time sensitive treatment decisions for these children. I am happy to let them go ahead of me so they get the best chance at getting better.
Accorind to Dr Matthay I am being staged at 4S and will not at this time receive chemotherapy even if my chromosome test comes back unfavorable. Given my age (young) and my other favorable tests the doctors want to monitor me for a while with scans and urine tests to determine whether the cancer in my liver will regress on its own. If the last test is unfavorable, the monitoring tests will occur more frequently and for a longer duration (until I'm 20). If the Neuroblastoma starts to spread again, treatment decisions will be made at that time.
July 6, 2009
I I spent today at UCSF (still the windiest place on the planet) with Mom, Dad and Pop-Pop having an ultrasound on my abdomen and meeting with Dr Robbins. This is a photo of me during my ultrasound. I am a very good patient. I spent most of the ultrasound session trying to impress Dan (the technician doing my ultrasound) with my primary colored car keys. I pretty much wowed everyone with how I can shake, throw and eat my keys.
As you can tell by my photo, I am really growing! I weigh 15 pounds 7 ounces and am 27 inches long. And very strong! My mom is thrilled with my chunky baby legs.
We got more good news today. The ultrasound results show no new tumors and fewer lesions on the liver. According to Dr Robbins, this suggests that the Neuroblastoma may be regressing on its own! I gave a urine sample today to test my VMA levels. Hopefully the levels will still be within a normal range. If they are still within a normal range this would further suggest that the Neuroblastoma is regressing and the liver is healing
Thank you to everyone who has being thinking of me and praying for my recovery. My parents and I really appreciate it. We are so thankful and feel so blessed that everything has gone this well so far. We wish that every child that receives a Neuroblastoma diagnosis would also continue to hear good news after receiving the brutal diagnosis.
I have another scan and VMA test on August 3rd. Please continue to pray for continued good news and my full recovery. Hopefully one day I will be completely well and this will be a chapter in the long (and interesting) book of my life.
As you can tell by my photo, I am really growing! I weigh 15 pounds 7 ounces and am 27 inches long. And very strong! My mom is thrilled with my chunky baby legs.
We got more good news today. The ultrasound results show no new tumors and fewer lesions on the liver. According to Dr Robbins, this suggests that the Neuroblastoma may be regressing on its own! I gave a urine sample today to test my VMA levels. Hopefully the levels will still be within a normal range. If they are still within a normal range this would further suggest that the Neuroblastoma is regressing and the liver is healing
Thank you to everyone who has being thinking of me and praying for my recovery. My parents and I really appreciate it. We are so thankful and feel so blessed that everything has gone this well so far. We wish that every child that receives a Neuroblastoma diagnosis would also continue to hear good news after receiving the brutal diagnosis.
I have another scan and VMA test on August 3rd. Please continue to pray for continued good news and my full recovery. Hopefully one day I will be completely well and this will be a chapter in the long (and interesting) book of my life.
July 13, 2009
My parents received my third post operation VMA urine test results and my VMA level is down to 12 (last month it was 16). This is a good sign.
My mom had my sister Jameson tested too. Although neuroblastoma in multiple members of the same family is very rare, my mom wanted to be certain. Jameson's VMA is 6. This is low and considered normal. Thank goodness!
My mom had my sister Jameson tested too. Although neuroblastoma in multiple members of the same family is very rare, my mom wanted to be certain. Jameson's VMA is 6. This is low and considered normal. Thank goodness!
August 2009
Its been a great month. I'm growing, playing and enjoying the summer. Feeling good.
Happy Halloween!
Its my first Halloween and I'm pretty excited! Can't wait to hit the streets with my sister searching for candy!!!!
Fearsome Twosome!
You would think I have had enough of doctors this year. But hey, I love my Dad and think he looks cool in scrubs. I'm feeling great. My monthly scans have been looking good.
November 16, 2009
Good News Today!
I spent the day at UCSF getting an ultrasound and visiting my oncologist, Dr Robbins. Based on the preliminary results of my ultrasound it appears that the lesions on my liver are gone. The previously located lesions are no longer visible. This is good news. I knew that I have been feeling good!
Dr. Robbins stated more than once that I am a pretty baby. So I must look good too!
This is a photo of me at the Pediatric Oncology Clinic getting weighed. I weigh 19.3 pounds. Biggy Guy!
Dr. Robbins stated more than once that I am a pretty baby. So I must look good too!
This is a photo of me at the Pediatric Oncology Clinic getting weighed. I weigh 19.3 pounds. Biggy Guy!
Medical Equipment is Fascinating!
My Cousin Anita Skidmore
This is my cousin Anita Skidmore. She works at the Pediatric Oncology Clinic. Its nice having family around when you go to the hospital. Makes UCSF a much less scary place!! Although not much scares me. I am always smiling and enjoying myself.
My Cousin Carlos Skidmore
This is Anita's husband Carlos. He also works at UCSF. Carlos and my Mom have the same Great Grandfather. Small world! Charles and Carlos (Charles in Spanish) are very popular names for men in the Skidmore family.
June 2010 - Last Days in California!!!
This is me and my sister riding around in mommy's car. We were having so much fun we decided to hold hands. I luber my big sister!
Bath at Nana's
I think this might have been our last bath in California. We stayed at Nana's the last few days. We had a great time. Nana is a lot of fun!
Mamma's Birthday!!!
I like it when Mamma has a birthday. We get cupcakes! I think I have only had two cupcakes in my entire life, but I already know I like them! Happy birthday Momma! I love you!!!
