Today had a bit of a rough start. We had an appointment to get Shad's counts checked, and were hoping to do a few other things while we were there. I had an appointment scheduled at 8:30, but it was just down the street so we were hopeful it would all work out. There was some confusion, a lot of waiting, and very little time actually getting blood drawn, but we made it out of the hospital by 8:25. We booked it to my appointment, and arrived about 5 minutes late. I was immediately taken back. My blood pressure was a little high and the doctor asked if it had been a stressful morning, and Trevor and I just laughed. She said she understood, and would wait a few minutes and take it again. She had a hard time finding baby's heartbeat with the doppler so she brought their tiny ultrasound machine with a very fuzzy picture in to check it that way. I wasn't too worried because I had felt the baby moving not long before, but it was nice to get to see him or her again. The doctor is really patient with Shad and let him help her push buttons and identify parts of the baby. He was excited when they said we were going to see a picture because he wanted to find out of it was a girl or boy. The doctor said their machine wasn't good enough to tell that, so he was a little sad, but got over it pretty quickly once he saw the baby on screen. She even gave him his own picture of the baby which he thought was pretty cool.
We went back to the hospital to get the results of Shad's counts and also to give him his shot and get some help with a cap change question we had. We ended up not needing to do the cap change until Monday, got the shot taken care of, and his counts were low but good enough that he didn't need any transfusions.
As we were on the way out we were told that the Easter Bunny was going to come visit outside in the "garden" area. We went out and waited in line. Somehow, we must have looked nice or something, we were asked to talk to some of the news people that were there. Shad wasn't very verbal, but cooperated. Below are 2 videos that were shown on the local news. Shad thought it was pretty cool when he saw himself on TV.
San Diego, California News Station - KFMB Channel 8 - cbs8.com
San Diego, California News Station - KFMB Channel 8 - cbs8.com
Friday, April 18, 2014
Sunday, April 13, 2014
Surgery and more...
Thursday was Shad's surgery for his apheresis catheter. He was scheduled for 1:20 and we were told he couldn't have any food after midnight, but he could drink clear liquids until 10:15. He had more than his fill of apple juice that morning. We were asked to be at the hospital by 11:50 for check-in/registration.
Shortly after he changed the surgeon came to check in with us. He was slightly friendlier than he was last time and actually spoke to Shad this time around which was nice. The anesthesiologist came and checked in next. Then the nurse that would be with him for the operation part came and talked to us for a while. Once it was time to take him back she told us to give him a kiss, and she would take him from there. He was a bit nervous, and while hugging me held on extra tights for some extra time, but once he let go he was ready to go. She took him back through the double doors, and he stopped for a minute, but then continued on. Trevor and I went to get something to eat, and were gone about half an hour. As we walked back into the building the pager we had buzzed, and a nurse was waiting for us at the desk. She said that the surgery was done, and we could follow her. She took us to a little room and told us the surgeon would be in to talk to us shortly. Apparently they come in and talk to the parents after the surgery to let them know how it went, and answer any questions. We waited about 45 minutes, and the surgeon never came. Finally Trevor went out and asked if we were still supposed to be waiting or what. The lady at the desk said she would check and a minute or two later the nurse came back and said the surgeon was finishing some things in the computer, and would be right in. We waited about 25 minutes longer before a PACU nurse came in and told us that the surgeon had forgotten to talk to us and was in his next surgery already, but that Shad was awake (and had been for awhile), and so she guessed ONE of us could go and be with him while the other waited for the surgeon. I walked into the PACU and Shad immediately asked where daddy was. I said only one person was allowed at a time, and this is the face that he made. He wasn't too happy that only one of us could be back there at a time. They said it was policy because there was only enough room for one, but there was plenty of room.
We got here about 11:50 and checked in. We were then sent to the registration area to fill out and sign a bunch of paperwork. We were then told to wait for the nurse to call us back to the pre-op area. We didn't wait long before he came and got us. We were taken back where they did his height and weight, gave him clothes to change into, and took his vitals. We were taken to a curtained area to wait our turn to speak with a nurse, the surgeon and the anesthesiologist prior to the surgery. Not too long after we got there someone came and told us the doctor had an emergency surgery so we were going to be pushed back about an hour. We used the extra time to head over and register for our room at the Ronald McDonald house. Shad thought it was a pretty cool place...too bad he will never get to stay there.
When we got back we waited for about 15 minutes and then we were called back to pre-op again. They told us to go ahead and change Shad's clothes so he would be ready. He looked pretty cute.
Trevor texted me shortly after that and said the surgeon had come in to see him, and it was a bit pointless (especially after all that waiting). We spent the next almost 5 hours switching off back and forth while waiting for a room on the hem/onc floor. Finally, about 9:00 Trevor came and got me and told me to just come back with him and Shad because all the other people back there had two people with them.
About half an hour later we were finally taken to our room where we were able to get situated and go to bed. It was a long somewhat frustrating day, but it ended with smiles, and I guess that is all that really matters.
Monday, April 7, 2014
And so it begins...
We met with the new oncologist at Rady Children's Hospital on Tuesday of last week. It was interesting, and overwhelming, and good, and stressful, and hopeful and so many other things all rolled into one. We were told to arrive 30 minutes early, and allowed even more time because we weren't sure what parking would be like, and exactly where the office was. We ended up waiting about 45 minutes because we were so early. There was a play area outside that Shad could see, but the doors were locked because it had been rainy earlier in the day, so he couldn't go out. He pulled up chairs for him and giraffe, and sat at the window looking out. It was pretty cute.
We did some enrollment paper work, and got him all registered in the system. We read some books, and talked about what we were going to be doing with the new doctor. Grandma Kitty was in town, and came to the appointment to help with Shad while we met with the doctors. It was nice to have her there and she helped keep him calm and distracted in the waiting area.
When we were called back they took his height and weight and asked a few questions about his eating habits. We were then taken to an exam room to wait for the doctor. The nurse asked a few more questions and filled in some more information on the computer. While she was doing that Shad started complaining about being starving, and soooo thirsty etc. We told him that we would get something after we were done at the doctor. The nurse finished up and said that she would bring him back a drink. She came back with a whole bag of snacks that had been donated. There was an applesauce, a bottle of water, trail mix, crackers and few other things. He was in heaven.
After waiting a little bit longer the doctor came in and met with us. She clarified a lot of background information about his previous treatment. She examined Shad and then we were able to let him go out with grandma so we could talk to the doctor without keeping him entertained as well. She gave us a lot of information about the plan for the stem cell harvesting and briefly discussed the later process of the high dose chemo and stem cell recovery.
The plan right now is to first place an apheresis catheter during a short surgery. The same day that the catheter is placed he will be admitted to the hospital to start a round of regular chemo (Taxol and Ifosfamide). As he recovers from that he will have his blood counts checked daily or every other day. When they declare it the right time he will have his stem cells harvested which will be about a day and a half in the hospital. This will probably be hard for him because he will be hooked up to the machine that pulls his blood out, separates the stem cells, and puts them back in for anywhere from 4 to 8 hours. He will not be allowed to move around or do much during this time, which should be interesting. This process will be repeated as necessary to harvest enough stem cells for the next part.
Once they have enough stem cells they will prepare for the high dose chemo. He will have 2 or possibly 3 rounds of that. Once he has that he will be given the stem cells to help him recover more quickly. These will be at least 3 week hospital stays, with a lot of restrictions even at home. We will find out a lot more about this as we go along I am sure.
I am a little bit stressed about not fully understanding all the restrictions and other things that will go into the recovery, but I feel like the doctor is trying to take things step by step with us. The next time we meet with her I will definitely have a lot more questions to ask her.
We did some enrollment paper work, and got him all registered in the system. We read some books, and talked about what we were going to be doing with the new doctor. Grandma Kitty was in town, and came to the appointment to help with Shad while we met with the doctors. It was nice to have her there and she helped keep him calm and distracted in the waiting area.
When we were called back they took his height and weight and asked a few questions about his eating habits. We were then taken to an exam room to wait for the doctor. The nurse asked a few more questions and filled in some more information on the computer. While she was doing that Shad started complaining about being starving, and soooo thirsty etc. We told him that we would get something after we were done at the doctor. The nurse finished up and said that she would bring him back a drink. She came back with a whole bag of snacks that had been donated. There was an applesauce, a bottle of water, trail mix, crackers and few other things. He was in heaven.
After waiting a little bit longer the doctor came in and met with us. She clarified a lot of background information about his previous treatment. She examined Shad and then we were able to let him go out with grandma so we could talk to the doctor without keeping him entertained as well. She gave us a lot of information about the plan for the stem cell harvesting and briefly discussed the later process of the high dose chemo and stem cell recovery.
The plan right now is to first place an apheresis catheter during a short surgery. The same day that the catheter is placed he will be admitted to the hospital to start a round of regular chemo (Taxol and Ifosfamide). As he recovers from that he will have his blood counts checked daily or every other day. When they declare it the right time he will have his stem cells harvested which will be about a day and a half in the hospital. This will probably be hard for him because he will be hooked up to the machine that pulls his blood out, separates the stem cells, and puts them back in for anywhere from 4 to 8 hours. He will not be allowed to move around or do much during this time, which should be interesting. This process will be repeated as necessary to harvest enough stem cells for the next part.
Once they have enough stem cells they will prepare for the high dose chemo. He will have 2 or possibly 3 rounds of that. Once he has that he will be given the stem cells to help him recover more quickly. These will be at least 3 week hospital stays, with a lot of restrictions even at home. We will find out a lot more about this as we go along I am sure.
I am a little bit stressed about not fully understanding all the restrictions and other things that will go into the recovery, but I feel like the doctor is trying to take things step by step with us. The next time we meet with her I will definitely have a lot more questions to ask her.
Thursday, March 20, 2014
The Plan
So, we had the meeting with Dr. Pene today. It went better than I had expected in my head, so that was good. Basically he told us that they are not going to do surgery at this point. The surgeons and Dr. Pene talked and the surgeons basically said that they could do surgery, but if there is any other options they would prefer to go with those first. Where the tumor is located is in his pelvic area is where they had done the surgery before and Dr. Christman said he was pretty much up to bone on the one side, and at his rectum/muscles in that area on the other. He feels that if they go in to do surgery, they will for sure damage that and he will be on a colostomy bag for the rest of his life. There is also a high risk that they could damage his urethra, and other muscles/things in that area.
The next option, and the one that he would recommend as the next step, is the high dose chemo with stem cell transplant. This is where they first go in and harvest his stem cells, and then do the high dose chemo which pretty much obliterates his blood/immune system. They then transplant his own cells back into his body to help him recover more quickly. They usually do 2 rounds of this with his type of cancer. The biggest problem with this is that the Naval hospital isn't equipped to do this procedure, so we will have to go to a different hospital that is able to do it. Right now we are hoping that Rady's, the children's hospital in San Diego, will accept him and we can do it there.
So the plan of action is for Dr. Pene to do a referral for us to speak to the doctor we would be working with at Rady's, this is where we will receive all the specific information about the procedure and be able to ask our questions of someone who has done this type of thing before. If that doctor agrees to do the procedure and accept Shad as a patient, then he will put the request into Tricare to be approved. At the point Tricare will approve or deny the procedure, and we will begin the process of transferring Shad to that doctor's care for the procedure. It looks like it could be a long process having to work through the insurance, and the other hospital, but we are pretty hopeful that every thing will work out and we will be able to give Shad this chance at being cancer free.
The high dose chemo is pretty much our last option from a chemo standpoint. Once he has that if the cancer doesn't go away, or if it were to come back, they wouldn't be able to give him any more chemo. They could do surgery at that point if there was something that could be surgically removed. The last option would be radiation, but if the cancer is in the same area it is now that would be a huge deal. The type of cancer Shad has only responds to high dose radiation, and so it would be pretty intense. Although it could kill the cancer, it would also damage anything around it. Since Shad's cancer is right up against his pelvic bone it would damage that. As he grows, the area of his pelvis that was exposed to the radiation would not grow. This would obviously cause a lot of problems, especially as he gets into his teenage years where he is doing a lot of major growing.
Dr. Pene ended the conversation with a simple I know this isn't what any of us wanted, but there are still promising options we can pursue. I like that he is still optimistic, it is reassuring, but he is also realistic. He doesn't tell us, oh this is going to be easy and wonderful, he is definitely straight forward and to the point, but he still offers hope where there is some to be found, if that makes sense.
The next option, and the one that he would recommend as the next step, is the high dose chemo with stem cell transplant. This is where they first go in and harvest his stem cells, and then do the high dose chemo which pretty much obliterates his blood/immune system. They then transplant his own cells back into his body to help him recover more quickly. They usually do 2 rounds of this with his type of cancer. The biggest problem with this is that the Naval hospital isn't equipped to do this procedure, so we will have to go to a different hospital that is able to do it. Right now we are hoping that Rady's, the children's hospital in San Diego, will accept him and we can do it there.
So the plan of action is for Dr. Pene to do a referral for us to speak to the doctor we would be working with at Rady's, this is where we will receive all the specific information about the procedure and be able to ask our questions of someone who has done this type of thing before. If that doctor agrees to do the procedure and accept Shad as a patient, then he will put the request into Tricare to be approved. At the point Tricare will approve or deny the procedure, and we will begin the process of transferring Shad to that doctor's care for the procedure. It looks like it could be a long process having to work through the insurance, and the other hospital, but we are pretty hopeful that every thing will work out and we will be able to give Shad this chance at being cancer free.
The high dose chemo is pretty much our last option from a chemo standpoint. Once he has that if the cancer doesn't go away, or if it were to come back, they wouldn't be able to give him any more chemo. They could do surgery at that point if there was something that could be surgically removed. The last option would be radiation, but if the cancer is in the same area it is now that would be a huge deal. The type of cancer Shad has only responds to high dose radiation, and so it would be pretty intense. Although it could kill the cancer, it would also damage anything around it. Since Shad's cancer is right up against his pelvic bone it would damage that. As he grows, the area of his pelvis that was exposed to the radiation would not grow. This would obviously cause a lot of problems, especially as he gets into his teenage years where he is doing a lot of major growing.
Dr. Pene ended the conversation with a simple I know this isn't what any of us wanted, but there are still promising options we can pursue. I like that he is still optimistic, it is reassuring, but he is also realistic. He doesn't tell us, oh this is going to be easy and wonderful, he is definitely straight forward and to the point, but he still offers hope where there is some to be found, if that makes sense.
Tuesday, March 18, 2014
More Scans and Results
PART 1: SCAN DAY
So, as many of you know Shad had scans last Tueday, the 11 of March. We went into these scans hoping that they would be clear, and we could finally say for certain that the surgery had taken care of everything as we had previously thought. We were concerned however, because we knew that Shad's AFP was still high, and so we knew that there had to be a cause for that. I was secretly kind of hoping that they would find the cancer in a new spot, not because I want it to keep growing, but because then the previous surgery would have been successful, and maybe they would be able to do surgery again, and everything would work out all right.
Shad was excited to get his pictures taken, and to see Dr. Pene and Nurse Jo. He wasn't as excited about waking up at 5:30 (especially because he had snuck out of bed the night before and spent awhile making "concoctions" in the bathroom which resulted in falling asleep pretty late), getting poked, and not being allowed to eat or drink, until after the scans.
I had been worried because I got a call from neurology reminding us about Shad's scans and they said his MRI was at 10, but then I got THE call from the 4th floor (Pre-Op) saying we needed to be there no later than 6:30. I was wondering what in the world they were going to have us doing for so long, but it all ended up working out quite well. We stepped out of the elevator to find Dr. Wallace (one of the pediatric anesthesiologists) walking past. He walked with us to the window, grabbed our chart, and told us just to go down to the PICU to get Shad accessed. He had talked to one of the nurses there already and she was expecting us. We didn't even have to wait in one of the surgery waiting rooms, or talk to one of the corpsmen upstairs, it was wonderful. We headed down to the PICU where we waited a few minutes while the nurse finished up what she was doing and got everything ready. Shad got accessed and it was relatively quick and easy.
We headed over to neurology/x-ray to wait for the anesthesiologist to come down and let us know they were ready. About 7:45 he came in and told us it would be just a couple minutes. Shad was in the room and asleep by 8:00. Trevor and I headed downstairs to the Tricare office to try and get some things figured out regarding my pregnancy, referrals, and insurance (but that is a long story for another post). Once we got all our questions answered and things figured out there, we headed back up to wait for Shad. We signed some more paperwork for the pet scan portion of the imaging, and waited to be called back. They were way ahead of schedule, and we went back to pet/ct scan room by about 10:00 (we weren't scheduled to be there until 11). They did those scans which took about 30-45 minutes, and then we were taken back to the PICU for recovery/him to wake up.
Watching Shad come back from the anesthesia is pretty entertaining. He just slightly wakes up and is ready to sit up and go. He usually says some pretty funny things as well. He started waking up and wanted some juice. The corpsman would put the straw in his mouth but he wasn't quite awake enough to suck, or would fall back to sleep in the middle of drinking. After he had finished one box of juice he pulled my head in close, right next to his mouth and started whispering something. He was not awake so he was totally mumbling, and on top of that he was trying to whisper. I had absolutely no clue what he was saying. I kept telling him he was going to have to talk louder because I couldn't understand him, which was making him really mad. Finally, we figured out that he wanted a popsicle. The nurse was more than happy to get him one, and they even had blue which is his favorite. Once he recovered enough, we took him to the bathroom, and helped him get dressed so we could go out to the clinic and get some blood drawn.
He was still pretty groggy and really dizzy when walking, so Trevor had to carry him. We sat down and waited for Nurse Jo to finish up what she was doing. She called us back and we got Shad's blood drawn (this was to check his AFP for the first time since his last round of chemo). Once she finished she deaccessed him and we were on our way. We ended up going to Panera for lunch (Shad gets to pick on scan days because he is usually starving). It was nice to sit outside and eat our lunch together.
PART 2: THE RESULTS
Fast forward a few days to Friday morning. The phone rings and I notice that it is the hospital phone number, so I am pretty sure it is Dr. Pene. I answer, and sure enough, it is him. He asks how I am doing, and I say fine. He takes a deep breath and slowly exhales, which I know means it is not good news. He then tells me that the scans are back and they were not what we were hoping for. The area in his chest were they did the surgery is good. There is still a little bit of "surgical changes" he can see, but no cancer (which makes sense, since when they took that section out it was biopsied and declared non cancerous anyway). He then goes on to let me know that there is still cancer showing up in his pelvic area, on the right side. Then, as if that isn't hard to hear, he goes on to tell me that his AFP dropped but not as much as it "should have". It was at 485,000 the day they started chemo, and dropped down to 400,000. This may seem like a good drop, but in the past with this chemo it has usually dropped to about half of what it started at by this point (that would have been down to about 240,000 or possibly more). This response tells us that his body/cancer is not responding to the chemo like it once was, and means that the chemo is ineffective for getting rid of whatever cancer is left. He went on to tell me that he was going to be spending his weekend researching, and was also going to try to call the doctor he had consulted before in Boston, and see if he had any recommendations. He asked me to schedule an appointment for this coming Thursday, and said he hoped to have some options to present to us at that point. He also let me know that he had showed the scans to the surgeons (the pediatric surgeon, Dr. Ignacio, and the Urologist, Dr. Christman). He said "there is a surgery they are considering, but it is very morbid." He went on to explain that it was not a a decision they would be making after looking at his scans for 5 or 10 minutes, but would take awhile to decide if they would even consider doing it at this point, with all the information about Shad in front of them. He told me that if they decided it was something they would do, then we would obviously have a say in what happened. He said he would see us next week, and ended our conversation with "have a good weekend" which I found hilarious at the time. He had just told us all this not so good news, but still wanted us to have a good weekend. Now, I think he really just meant there was nothing we could do at that point, so to just try and let it go enough to enjoy our weekend, which we did.
So, as many of you know Shad had scans last Tueday, the 11 of March. We went into these scans hoping that they would be clear, and we could finally say for certain that the surgery had taken care of everything as we had previously thought. We were concerned however, because we knew that Shad's AFP was still high, and so we knew that there had to be a cause for that. I was secretly kind of hoping that they would find the cancer in a new spot, not because I want it to keep growing, but because then the previous surgery would have been successful, and maybe they would be able to do surgery again, and everything would work out all right.
Shad was excited to get his pictures taken, and to see Dr. Pene and Nurse Jo. He wasn't as excited about waking up at 5:30 (especially because he had snuck out of bed the night before and spent awhile making "concoctions" in the bathroom which resulted in falling asleep pretty late), getting poked, and not being allowed to eat or drink, until after the scans.
I had been worried because I got a call from neurology reminding us about Shad's scans and they said his MRI was at 10, but then I got THE call from the 4th floor (Pre-Op) saying we needed to be there no later than 6:30. I was wondering what in the world they were going to have us doing for so long, but it all ended up working out quite well. We stepped out of the elevator to find Dr. Wallace (one of the pediatric anesthesiologists) walking past. He walked with us to the window, grabbed our chart, and told us just to go down to the PICU to get Shad accessed. He had talked to one of the nurses there already and she was expecting us. We didn't even have to wait in one of the surgery waiting rooms, or talk to one of the corpsmen upstairs, it was wonderful. We headed down to the PICU where we waited a few minutes while the nurse finished up what she was doing and got everything ready. Shad got accessed and it was relatively quick and easy.
We headed over to neurology/x-ray to wait for the anesthesiologist to come down and let us know they were ready. About 7:45 he came in and told us it would be just a couple minutes. Shad was in the room and asleep by 8:00. Trevor and I headed downstairs to the Tricare office to try and get some things figured out regarding my pregnancy, referrals, and insurance (but that is a long story for another post). Once we got all our questions answered and things figured out there, we headed back up to wait for Shad. We signed some more paperwork for the pet scan portion of the imaging, and waited to be called back. They were way ahead of schedule, and we went back to pet/ct scan room by about 10:00 (we weren't scheduled to be there until 11). They did those scans which took about 30-45 minutes, and then we were taken back to the PICU for recovery/him to wake up.
Watching Shad come back from the anesthesia is pretty entertaining. He just slightly wakes up and is ready to sit up and go. He usually says some pretty funny things as well. He started waking up and wanted some juice. The corpsman would put the straw in his mouth but he wasn't quite awake enough to suck, or would fall back to sleep in the middle of drinking. After he had finished one box of juice he pulled my head in close, right next to his mouth and started whispering something. He was not awake so he was totally mumbling, and on top of that he was trying to whisper. I had absolutely no clue what he was saying. I kept telling him he was going to have to talk louder because I couldn't understand him, which was making him really mad. Finally, we figured out that he wanted a popsicle. The nurse was more than happy to get him one, and they even had blue which is his favorite. Once he recovered enough, we took him to the bathroom, and helped him get dressed so we could go out to the clinic and get some blood drawn.
He was still pretty groggy and really dizzy when walking, so Trevor had to carry him. We sat down and waited for Nurse Jo to finish up what she was doing. She called us back and we got Shad's blood drawn (this was to check his AFP for the first time since his last round of chemo). Once she finished she deaccessed him and we were on our way. We ended up going to Panera for lunch (Shad gets to pick on scan days because he is usually starving). It was nice to sit outside and eat our lunch together.
PART 2: THE RESULTS
Fast forward a few days to Friday morning. The phone rings and I notice that it is the hospital phone number, so I am pretty sure it is Dr. Pene. I answer, and sure enough, it is him. He asks how I am doing, and I say fine. He takes a deep breath and slowly exhales, which I know means it is not good news. He then tells me that the scans are back and they were not what we were hoping for. The area in his chest were they did the surgery is good. There is still a little bit of "surgical changes" he can see, but no cancer (which makes sense, since when they took that section out it was biopsied and declared non cancerous anyway). He then goes on to let me know that there is still cancer showing up in his pelvic area, on the right side. Then, as if that isn't hard to hear, he goes on to tell me that his AFP dropped but not as much as it "should have". It was at 485,000 the day they started chemo, and dropped down to 400,000. This may seem like a good drop, but in the past with this chemo it has usually dropped to about half of what it started at by this point (that would have been down to about 240,000 or possibly more). This response tells us that his body/cancer is not responding to the chemo like it once was, and means that the chemo is ineffective for getting rid of whatever cancer is left. He went on to tell me that he was going to be spending his weekend researching, and was also going to try to call the doctor he had consulted before in Boston, and see if he had any recommendations. He asked me to schedule an appointment for this coming Thursday, and said he hoped to have some options to present to us at that point. He also let me know that he had showed the scans to the surgeons (the pediatric surgeon, Dr. Ignacio, and the Urologist, Dr. Christman). He said "there is a surgery they are considering, but it is very morbid." He went on to explain that it was not a a decision they would be making after looking at his scans for 5 or 10 minutes, but would take awhile to decide if they would even consider doing it at this point, with all the information about Shad in front of them. He told me that if they decided it was something they would do, then we would obviously have a say in what happened. He said he would see us next week, and ended our conversation with "have a good weekend" which I found hilarious at the time. He had just told us all this not so good news, but still wanted us to have a good weekend. Now, I think he really just meant there was nothing we could do at that point, so to just try and let it go enough to enjoy our weekend, which we did.
Tuesday, January 14, 2014
Surgery
My mom wrote an email to her friends and family which I thought I would copy and paste here, for any who were wondering how things went.
I'm not really sure at this point who I have told what to, so if this is all something you've already heard please understand. First of all, I just want to say thanks to all of you for your faith and prayers and support in our family's behalf. We do feel them and appreciate them and each one of you.
Shad had surgery last Thursday. It lasted about 10 hours. First they did pelvic surgery to try to remove the cancer in his pelvic area. They made about a 2 inch cut on the underside of his scrotum and removed about 2 baby carrots worth of tissue from his pelvic area. This surgery took quite a while because they would remove a small amount of tissue and then take it down to the lab where they would test it for cancer, when it came back positive they cut a little bit more and went through the process again. When they got a sample that was cancer-free they cut a small amount more all around and called it good. The surgeon feels that they got it all. They inserted a catheter/drain tube just below his scrotum which was removed on Sunday morning. He is experiencing more pain from this little hole, than from the surgery cut (which could be likened to an episiotomy). It is in a place that gets a lot of natural irritation from walking and going to the bathroom. He walks a little bit like a man who just got off a horse, but it doesn't slow him down much.
The 2nd surgery was on his lung. It started about 7 hours into the surgery. They made 3 small incisions to try to go in laproscopically, but his ribs were too close together, so they made a larger (still pretty small incision) and pulled part of his lung out to work on it. There was a small spot that had lit up on the pet scan, but they could not find any sign of tumor on the lung. There was a 3 to 5 millimeter (the right size for what was seen on the scan) discoloration on the lung which they cut out and sent to pathology. When the lung is cut into, it collapses, so they inserted a chest tube, which was removed on Saturday. That was done under local anesthetic, and was traumatic for everyone, but it was painful to have in and he immediately felt better once in was out.
On Sunday morning urology cleared him to come home, but the lung doctor was at a different hospital doing emergency surgery for most of the day, so they just hung out waiting for him to come by and say yeah or nay to leaving. Gardell and I arrived in San Diego, at the hospital, about 6:00 Sunday night, about the same time Dr. Ignacio finally made an appearance. He checked Shad out and said he was doing wonderfully. His comment was, "If you didn't lift his shirt, you wouldn't know this kid had just had surgery - 2 pretty major surgeries. He is a trooper." He then asked Shad if he wanted to go home. Shad said, "tomorrow?" and the doctor said, "How about tonight?" Hooray!! The doctor said he would talk to the pediatric ward doctor and tell them to let us go home.
About 7 the peds doctor came in and said the info she received when she came on shift said that urology wanted to see him in the morning. That wasn't what Jessica and Trevor had been told (they were told that he was good to go and to come back for an appointment a week from Tuesday.) It took a while to check that out and then to get meds for home and to get ALL THE PAPERWORK done ... We volunteered to vacate our room about 9:00 because they had new patients coming in and no where to put them and then we just hung out in the main play area until about10:30 when we were finally cleared to go. Shad was bouncing off the walls by then and I'm sure all the other "sick kids" parents were thrilled when we finally left the premises.
We had a pretty uneventful day yesterday. Shad has some pain, that is handled with tylenol every 4 hours, and is reluctant to poop (a common problem for him) but other than that he is almost back to his usual self. He did take a 3 hour nap yesterday, which he usually won't give in to and his emotions are a little closer to the surface, but over-all he is doing great! All the reports should be back in about a week and he meets with both surgeons a week from today. Jessica is calling today to set up an appointment with oncology to find out where they go from here. The thought is that he will probably do at least one more round of chemo, but we will wait and see what Dr. Pene says.
Once again, thanks for your texts, calls, cards, prayers, love and support. We definitely couldn't do this without you and without the comfort of the spirit. Let us know when we can return the favor.
There you have the basics of how it went. Maybe I will add some more details about our stay at a later time, but for now this is it.
Monday, December 23, 2013
Scan Update
Tuesday morning we had an appointment with Dr. Pene scheduled for 10:15 to check Shad's counts and find out his scan results. About 7:30 that morning I got a call, and recognized the number as the hospital. I answered and the lady identified herself as Margie, Dr. Ignacio's intern. She let me know that he wanted to meet with us after we met with Dr. Pene. (Dr. Ignacio is the pediatric surgeon we have worked with previously.) We knew that one of the options after scans was surgery, and this phone call pretty much guaranteed it was going to happen.
Shad and I got up and got ready, ate some breakfast, and then left to pick Trevor up from work. Once we got him we headed over to the hospital. We were there early for once, and of course that was the one time everyone was running a bit behind schedule. We ended up meeting with Dr. Pene before Shad was accessed because Jo was busy. He let us know what the scans showed, and his recommendations. First off he told us that Shad's AFP before the last round of chemo was 30, and after that round of chemo his AFP was still 30. This isn't necessarily bad, but it shows the cancer isn't responding as quickly to the chemo as it had been. Next, he let us know that Shad had two spots that had taken up the contrast on the pet scan. One was in his pelvic area (the one they had seen at the start). It was a bit smaller and the urologist felt he could get it with surgery. The other spot was a 4mm mass in his left lower lung. It has been there for awhile apparently, but has never taken up the contrast so it hasn't been a concern. This time it did take the contrast so they want to get it out. It could be nothing, an infection, something else, or it could be cancer. They plan to send it to be biopsied to find out either way. Dr. Pene didn't know much else about the surgeries, and told us we would be meeting with the surgeons to get all that info. They wanted to do the surgery on Thursday, but his counts weren't high enough. We were kind of relieved because we really wanted to for sure be able to be home for Christmas. The surgery is now tentatively scheduled for the week of the January 6th.
Next we talked to Dr. Ignacio. He pulled up the scans and showed us this tiny little spot that is what they are concerned about. His plan is to do thoracoscopic surgery (more info at the link), where they basically make three small holes and use a scope to remove the mass. They are planning to take a small wedge out of his lung which will include the mass, and will then be sent to biopsy. He let us know the risks, and the recovery. Basically since the mass is so small they may not be able to find it with the scope. If that happens he will try to feel it with the instruments. If that doesn't work then he will have to cut his chest to visually see the are and feel/see the mass. He will have a chest tube after surgery to allow time for the lung to heal and to make sure no air gets into the area around his lung. He estimates he will have it in for about 3 days. Because of the chest tube he will be in the PICU after surgery rather than on the regular pediatric floor. When they remove the chest tube they will give him a local anesthetic, but he will be awake. If his lung collapses once they pull it out then they will have to put it back in, but they will sedate him before putting it back in if that happens. The biggest risks involved are if his lung collapses after the surgery, and the possibility of a nicked diaphragm which is not good. The chances of that happening are small though.
After meeting with Dr. Ignacio we walked over and talked with Dr. Christman the urologist who will be performing the second part of the surgery. We have worked with him before and really like him. He explained how they will do the surgery for the mass in his pelvic area. Basically they lay him on the table on his back, push his feet up almost into the birthing position, and then cut the section of skin between his scrotum and his anus (perineal incision). They will go through the tissue and muscle there to get to the area where the tumor is and then remove as much of the affected tissue as possible. This surgery involves a lot more risks. It is possible that it could cause erectile dysfunction (could possibly be fixed at a later date (much later)), urinary incontinence (there are procedures to help correct it if necessary), damage to the rectum (would be repaired during surgery and shouldn't have long term effects, could possible have to temporarily redirect bowel movements to bag outside the body to allow time to heal). This is definitely the more intense surgery, but if everything goes according to plan, it will have a much quicker recovery time than the chest surgery.
Right now the plan is to have the surgery the week of the 6th. Once the surgery is complete we will be in the PICU for recovery for at least 4 or 5 days. Once he is well enough to go home we will do so. He will be limited a bit in his physical activity for a couple weeks after that. Stay home, no school, no contact sports, no park trips etc. Once he has recovered from the surgery he will have at least one more round of chemo. Dr. Pene wants to see what happens to his AFP after surgery and then he will decide if he wants to do one or two rounds of chemo.
Shad and I got up and got ready, ate some breakfast, and then left to pick Trevor up from work. Once we got him we headed over to the hospital. We were there early for once, and of course that was the one time everyone was running a bit behind schedule. We ended up meeting with Dr. Pene before Shad was accessed because Jo was busy. He let us know what the scans showed, and his recommendations. First off he told us that Shad's AFP before the last round of chemo was 30, and after that round of chemo his AFP was still 30. This isn't necessarily bad, but it shows the cancer isn't responding as quickly to the chemo as it had been. Next, he let us know that Shad had two spots that had taken up the contrast on the pet scan. One was in his pelvic area (the one they had seen at the start). It was a bit smaller and the urologist felt he could get it with surgery. The other spot was a 4mm mass in his left lower lung. It has been there for awhile apparently, but has never taken up the contrast so it hasn't been a concern. This time it did take the contrast so they want to get it out. It could be nothing, an infection, something else, or it could be cancer. They plan to send it to be biopsied to find out either way. Dr. Pene didn't know much else about the surgeries, and told us we would be meeting with the surgeons to get all that info. They wanted to do the surgery on Thursday, but his counts weren't high enough. We were kind of relieved because we really wanted to for sure be able to be home for Christmas. The surgery is now tentatively scheduled for the week of the January 6th.
Next we talked to Dr. Ignacio. He pulled up the scans and showed us this tiny little spot that is what they are concerned about. His plan is to do thoracoscopic surgery (more info at the link), where they basically make three small holes and use a scope to remove the mass. They are planning to take a small wedge out of his lung which will include the mass, and will then be sent to biopsy. He let us know the risks, and the recovery. Basically since the mass is so small they may not be able to find it with the scope. If that happens he will try to feel it with the instruments. If that doesn't work then he will have to cut his chest to visually see the are and feel/see the mass. He will have a chest tube after surgery to allow time for the lung to heal and to make sure no air gets into the area around his lung. He estimates he will have it in for about 3 days. Because of the chest tube he will be in the PICU after surgery rather than on the regular pediatric floor. When they remove the chest tube they will give him a local anesthetic, but he will be awake. If his lung collapses once they pull it out then they will have to put it back in, but they will sedate him before putting it back in if that happens. The biggest risks involved are if his lung collapses after the surgery, and the possibility of a nicked diaphragm which is not good. The chances of that happening are small though.
After meeting with Dr. Ignacio we walked over and talked with Dr. Christman the urologist who will be performing the second part of the surgery. We have worked with him before and really like him. He explained how they will do the surgery for the mass in his pelvic area. Basically they lay him on the table on his back, push his feet up almost into the birthing position, and then cut the section of skin between his scrotum and his anus (perineal incision). They will go through the tissue and muscle there to get to the area where the tumor is and then remove as much of the affected tissue as possible. This surgery involves a lot more risks. It is possible that it could cause erectile dysfunction (could possibly be fixed at a later date (much later)), urinary incontinence (there are procedures to help correct it if necessary), damage to the rectum (would be repaired during surgery and shouldn't have long term effects, could possible have to temporarily redirect bowel movements to bag outside the body to allow time to heal). This is definitely the more intense surgery, but if everything goes according to plan, it will have a much quicker recovery time than the chest surgery.
Right now the plan is to have the surgery the week of the 6th. Once the surgery is complete we will be in the PICU for recovery for at least 4 or 5 days. Once he is well enough to go home we will do so. He will be limited a bit in his physical activity for a couple weeks after that. Stay home, no school, no contact sports, no park trips etc. Once he has recovered from the surgery he will have at least one more round of chemo. Dr. Pene wants to see what happens to his AFP after surgery and then he will decide if he wants to do one or two rounds of chemo.
Tuesday, November 26, 2013
A long hospital stay
We have been trying to get Shad into the hospital for round 3 of his chemo for quite some time now. We first went and got his counts checked on Halloween, fully expecting to come back later that night. His platelets were too low however, and we were told to come back the next Monday. His platelets were still too low, so we were told to come back on Thursday. We went back on Thursday only to find that his platelets were going up, but were still too low to start chemo. The next Tuesday we returned and his platelets were finally high enough, but his neutrophils had dropped. They weren't so low that he couldn't be out and about, but they were too low to start his next round. The doctor was hopeful and told us to come back on Thursday. We went back that day only to be told that his neutrophils were still too low. His monocytes were up which showed that his neutrophils were recovering instead of continuing down, so he knew that he was improving. We were supposed to go back the next Monday.
Saturday morning came and Trevor and I awoke to a grouchy and somewhat emotional boy. He and daddy went and bought donuts. They came home and we worked on cleaning up the house a little bit, and then I noticed that Shad was feeling hot. His head is often times hot, so we debated if we thought he had a fever or not, but I was pretty sure he was abnormally hot, so we went in search of a thermometer. Of course we couldn't find one, so I sent Trevor to the store to get a new one. He came back a little while later, and Shad had a fever over 102. I called the hospital to let them know we would be coming in (anytime he has a temperature over 100.4 we have to go in). Luckily we already had our bags packed from thinking we were going to stay earlier in the week. We gathered the rest of the things we needed and left.
We got to the hospital and they took blood for a CBC and also for a blood culture to check for infections. They admitted us and let us know that Shad was anemic and would need a red blood cell transfusion. The doctor also wanted to start him on antibiotics to fight off any possible infection. The blood culture takes 48 hours to mature, so they start the antibiotics as a preventative thing even though they don't know what it is he is fighting.
Trevor went back home to get some things we had put in the wash before we left, and grab a few things we realized we had forgotten. Shad and I stayed at the hospital and watched stuff on his ipad. That evening the nurse started the first antibiotic. It was supposed to run over 60 minutes, and then they would do the other one. About 20 minutes in Shad started freaking out because his eye was hurting. I checked for an eyelash, or anything else that could have gotten in it, but couldn't see anything. Then he was crying because his feet were hurting. I pushed the call button and the nurse came in. I let her know that Shad was complaining about his feet and eye hurting. About that same time he told us they weren't hurting anymore, they were itching. She stopped the medicine because he was having a reaction to it. He had what is called red man's syndrome where they person gets really red and flushed, hot to the touch, and itchy. It is not considered an allergic reaction, just a reaction. She gave him some benadryl and told me to let her know if he started breathing funny. His lip started to swell up a little bit at this point which he didn't like at all. The nurse left and I tried to keep him from scratching. When he got to the point where I was worried he was going to break the skin on his head I called the nurse back in, and she gave him a wet washcloth to put on and help the itching. He said that helped and cheered up after that.
Sunday was a pretty lazy day spent watching shows on the ipad, going for a walk, doing some crafts, and snuggling. It was very uneventful, which are sometimes the nicest kind of days at the hospital.
Monday Dr. Pene came in and let us know that Shad's counts had all recovered, and so as long as his blood culture was negative then we would start pre-hydration that night, and chemo the next day. We were happy about that, we were ready to get round three over with. That afternoon Trevor and Shad had rest time, and I crocheted some hats people had ordered. Shad didn't really sleep, but he needed a little bit of down time, he was being kind of ornery. The blood culture did come back negative so we got ready to start chemo.
Tuesday Shad started his chemo about 10:15 That afternoon he took a nap. The doctor said to keep going with the drug as long as Shad seemed okay physically (breathing ok, not complaining of headache or dizziness, going to the bathroom etc.) His heart rate still went pretty low with this drug, but we pushed through it and got it done. He seemed fine the whole time. It was a long night for me though.
Wednesday Shad had the nurse that we don't really love, but we survived. His first chemo didn't finish on time, so we didn't get started with his day two drugs until about 11:30. The zoo came that day, but since Shad was getting chemo he wasn't allowed to leave his room. He sat at the window and looked at the animals. The zoo lady was really nice and brought them right up to the glass so he could see them well. He did get to go right outside his door and pet the big dog, so he was happy. That afternoon Trevor went home to do some laundry, and Shad and I went out to play. We hadn't been allowed to go out much because at first they didn't want him exposed to anything, or to expose anyone to anything he might have. Then he had the 24 hour chemo and wasn't allowed to go out. We played chutes and ladders and finding nemo go fish. We also played a dice game I had brought from home and colored. He played with some of the other toys, and then when his battery started getting low we went back into his room.
Thursday we did chemo again in the morning. He was starting to feel more nauseous, and didn't really want to go out and do much. It was raining off and on all day. We decided to go for a walk that afternoon, but by the time we got outside it was raining really hard. We walked a little ways (where it was covered) and then went back in. We stopped at the Redbox, and Shad picked the movie Planes. We waited for daddy to get back, and then they watched it together. Shad said it was boring, and Trevor wasn't a fan either. That night we had a short dance party while we waited for the nurse to come in and do a dressing change on Shad's port (the sticker was falling off).
Friday was a pretty uneventful day. We got more movies from the Redbox, The Croods, and Epic. Shad loves The Croods, it is pretty cute. Epic was ok, but he was happy just to watch it once. That evening I was snuggling in bed with him and noticed he felt warm again. The nurse came in and took his temperature. He had a low fever, which meant they had to start another blood culture and do some other blood work. They also had him do a chest x-ray because he had had a cough the past few days. We waited for the x-ray place to call for him, luckily they called pretty quickly. The nurse let him ride in a wheelchair which he thought was pretty awesome. He did great for the x-rays, and the technicians seemed competent and worked well with him. They didn't have to do any repeats because he held so still, and did just what they asked. Everything looked good from those.
The next morning he was complaining of belly pain. Since he had had the fever they were being extra cautious, so they sent him to get an abdominal x-ray. It showed that he had a lot of stool and gas, so they started him on Miralax. That seemed to help and he started to feel better. He threw up once or twice this day. Bishop and Sister Hadley came to visit that night, which was nice. He loves having visitors. As they were leaving the nurse came in and said that they had just realized he needed to be reaccessed that day. We went in the treatment room to get that taken care of. He was not happy about it at all. They took the sticker off, took the needle out, put a new needle in, and then put a new sticker on. He was complaining that it hurt as soon as they finished. We thought he was just sensitive because they had poked him without any numbing cream, and told him he would be all right. About an hour later we were getting him ready for bed and noticed that the area around his port was really red and beginning to get puffy. We called the nurse in and she said that they were going to have to reaccess him, just to make sure the needle was in right. The doctors came in and took a look and decided they thought it was just an allergic reaction to the sticker, even though he has used that same sticker tons of times before. We ended up taking it off, putting some of the numbing cream on, and then putting another new needle in a while later. Once that was done Shad finally got to go to bed.
Sunday Shad watched the Redbox movies we forgot to take back one more time. That afternoon we dragged him out of the room to go on little walk. It was a beautiful day, but he was cold. Finally we got to a sunny spot and he sat down to warm up. Pretty soon he was laying down on the bench. He was loving being outside, and kept talking about the nice sunshine. It was pretty cute.
Monday we finally got to go home. I don't know why, but those two extra days at the hospital seemed like forever. We are enjoying being home, eating our own food, sleeping in our own beds, and of course playing with our own toys.
Saturday morning came and Trevor and I awoke to a grouchy and somewhat emotional boy. He and daddy went and bought donuts. They came home and we worked on cleaning up the house a little bit, and then I noticed that Shad was feeling hot. His head is often times hot, so we debated if we thought he had a fever or not, but I was pretty sure he was abnormally hot, so we went in search of a thermometer. Of course we couldn't find one, so I sent Trevor to the store to get a new one. He came back a little while later, and Shad had a fever over 102. I called the hospital to let them know we would be coming in (anytime he has a temperature over 100.4 we have to go in). Luckily we already had our bags packed from thinking we were going to stay earlier in the week. We gathered the rest of the things we needed and left.
We got to the hospital and they took blood for a CBC and also for a blood culture to check for infections. They admitted us and let us know that Shad was anemic and would need a red blood cell transfusion. The doctor also wanted to start him on antibiotics to fight off any possible infection. The blood culture takes 48 hours to mature, so they start the antibiotics as a preventative thing even though they don't know what it is he is fighting.
Trevor went back home to get some things we had put in the wash before we left, and grab a few things we realized we had forgotten. Shad and I stayed at the hospital and watched stuff on his ipad. That evening the nurse started the first antibiotic. It was supposed to run over 60 minutes, and then they would do the other one. About 20 minutes in Shad started freaking out because his eye was hurting. I checked for an eyelash, or anything else that could have gotten in it, but couldn't see anything. Then he was crying because his feet were hurting. I pushed the call button and the nurse came in. I let her know that Shad was complaining about his feet and eye hurting. About that same time he told us they weren't hurting anymore, they were itching. She stopped the medicine because he was having a reaction to it. He had what is called red man's syndrome where they person gets really red and flushed, hot to the touch, and itchy. It is not considered an allergic reaction, just a reaction. She gave him some benadryl and told me to let her know if he started breathing funny. His lip started to swell up a little bit at this point which he didn't like at all. The nurse left and I tried to keep him from scratching. When he got to the point where I was worried he was going to break the skin on his head I called the nurse back in, and she gave him a wet washcloth to put on and help the itching. He said that helped and cheered up after that.
Sunday was a pretty lazy day spent watching shows on the ipad, going for a walk, doing some crafts, and snuggling. It was very uneventful, which are sometimes the nicest kind of days at the hospital.
Wednesday Shad had the nurse that we don't really love, but we survived. His first chemo didn't finish on time, so we didn't get started with his day two drugs until about 11:30. The zoo came that day, but since Shad was getting chemo he wasn't allowed to leave his room. He sat at the window and looked at the animals. The zoo lady was really nice and brought them right up to the glass so he could see them well. He did get to go right outside his door and pet the big dog, so he was happy. That afternoon Trevor went home to do some laundry, and Shad and I went out to play. We hadn't been allowed to go out much because at first they didn't want him exposed to anything, or to expose anyone to anything he might have. Then he had the 24 hour chemo and wasn't allowed to go out. We played chutes and ladders and finding nemo go fish. We also played a dice game I had brought from home and colored. He played with some of the other toys, and then when his battery started getting low we went back into his room.
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| source: naval medical center san diego facebook page |
The next morning he was complaining of belly pain. Since he had had the fever they were being extra cautious, so they sent him to get an abdominal x-ray. It showed that he had a lot of stool and gas, so they started him on Miralax. That seemed to help and he started to feel better. He threw up once or twice this day. Bishop and Sister Hadley came to visit that night, which was nice. He loves having visitors. As they were leaving the nurse came in and said that they had just realized he needed to be reaccessed that day. We went in the treatment room to get that taken care of. He was not happy about it at all. They took the sticker off, took the needle out, put a new needle in, and then put a new sticker on. He was complaining that it hurt as soon as they finished. We thought he was just sensitive because they had poked him without any numbing cream, and told him he would be all right. About an hour later we were getting him ready for bed and noticed that the area around his port was really red and beginning to get puffy. We called the nurse in and she said that they were going to have to reaccess him, just to make sure the needle was in right. The doctors came in and took a look and decided they thought it was just an allergic reaction to the sticker, even though he has used that same sticker tons of times before. We ended up taking it off, putting some of the numbing cream on, and then putting another new needle in a while later. Once that was done Shad finally got to go to bed.
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| Trevor took the sticker off the second time because the nurse was so busy |
Sunday Shad watched the Redbox movies we forgot to take back one more time. That afternoon we dragged him out of the room to go on little walk. It was a beautiful day, but he was cold. Finally we got to a sunny spot and he sat down to warm up. Pretty soon he was laying down on the bench. He was loving being outside, and kept talking about the nice sunshine. It was pretty cute.
Monday we finally got to go home. I don't know why, but those two extra days at the hospital seemed like forever. We are enjoying being home, eating our own food, sleeping in our own beds, and of course playing with our own toys.
Friday, November 1, 2013
Check up, Audiology, and the zoo
Yesterday was a busy day for us. Shad had an appointment at the clinic to check his counts at 8:45. We got there, got a label for the 12 hour urine collection we had done, and hurried that up to the lab. We got that done, and then went back to the clinic where we did his vitals, and then went in Jo's room and he got accessed. He is getting so brave, and didn't even cry at all during the poke. She took his blood, and sent that up to check his counts. We went back out to the waiting room, and the doctor was with us shortly. He checked Shad over, and we went over the plan for admission today. He wanted us there by 9:00 tonight which was fine because we still got to go trick or treating. He said we could go ahead and get him deaccessed, and if anything came up in the lab work that would change things he would give me a call. We went back in to see Jo, and she took the needle out. As we were walking out the lab results came. The corpsman handed them to Jo, she took one look, and said to wait there she would be right back. She went into the doctors' area and came right back out. Apparently his platelets were low, he had been at 70 something on Friday, and now he was at 26. Everything else was still good. We had to reaccess Shad so they could get a little bit of blood for a type and cross. We were told we wouldn't be starting chemo as planned, and to come back on Friday morning to check his platelet levels. They would have platelets ready in case he needed them.
After that we had about half an hour until his audiology appointment, so we headed down to McDonalds to get some breakfast. Shad wanted "a shaushage sandwich like grandpa gets" and an apple juice. We got our food and sat down to eat. As soon as we were done we headed up to audiology. Ms. Nicole was happy to see Shad, and we were taken right in. They tested his eardrums, and then he did the beep tests. He is supposed to raise his hand every time he hears a beep. At first he had these big headphones on. After a little bit the audiologist came in and said she wanted to try it with piece that goes in his ear. His left ear wasn't doing so well, but she thought it might be because his ear was getting squished. She changed it over and ran the test again. Luckily she was right, and everything was fine. He has gone down a tiny bit in the highest range in the left ear, but she said it is not something to be concerned about yet. I took some videos because I thought he was so cute, he was focusing so hard. The first is him repeating words that she said to him, the second is him raising his hand. The room we were in was pretty small, so it was hard to get far enough away to see him really well.
After that we had about half an hour until his audiology appointment, so we headed down to McDonalds to get some breakfast. Shad wanted "a shaushage sandwich like grandpa gets" and an apple juice. We got our food and sat down to eat. As soon as we were done we headed up to audiology. Ms. Nicole was happy to see Shad, and we were taken right in. They tested his eardrums, and then he did the beep tests. He is supposed to raise his hand every time he hears a beep. At first he had these big headphones on. After a little bit the audiologist came in and said she wanted to try it with piece that goes in his ear. His left ear wasn't doing so well, but she thought it might be because his ear was getting squished. She changed it over and ran the test again. Luckily she was right, and everything was fine. He has gone down a tiny bit in the highest range in the left ear, but she said it is not something to be concerned about yet. I took some videos because I thought he was so cute, he was focusing so hard. The first is him repeating words that she said to him, the second is him raising his hand. The room we were in was pretty small, so it was hard to get far enough away to see him really well.
After we finished up at the audiologist we headed over to the zoo where we met up with Abigail, Kate and Mandy. We walked around a lot and saw some bears, monkeys, orangutans, elephants, camels, a jaguar, and some other things. Some of the highlights included climbing on all the statues, in the koala tree, and riding Skyfari.
Monday, October 28, 2013
Tuesday check up
Last Tuesday Shad and left our house about 8:45 to pick up Kathy and Karen from the airport. We only had a little while before we had to drop them off for their cruise and get to the hospital for Shad's check up. Luckily we did have a little bit of time to visit with them while we did a Starbucks run, and then sat in the car to catch up. We figured out where to drop them off, and then Shad and I were off to the check up with the oncologist. I knew that Shad was low on something (either blood, platelets, or both) because of the way he had been acting. He was overly grouchy and would get angry really easy. He was a little more tired then usual, and a bit pale, but not to a point of being really concerning. They checked his vitals, Jo accessed him and drew his blood, and then we waited for the results. After waiting for a few minutes, the oncologist came and got us. We went into his office and he checked him over. After checking Shad out, he called Trevor and I closer, and told us to look at what anemia looked like. He pulled down Shad's lower eyelids, and they were very light. He shined his light into Shad's mouth and showed us the inside of his cheeks which were also very pale. He said, now we wait to see how bad it is (if he would need a transfusion or not). While we waited for the blood results the doctor let us know what the plan was for the upcoming week. We would see if he needed transfusions that day, and then would come for another follow up on Friday to check everything before the weekend. He wanted Shad to do a check in with the audiologist to see how things were going with his hearing before the next round, as well as another 12 hour urine test to make sure there is still good function there. He also let us know that we were going to do one more round before we do the next set of scans. We chatted a bit longer, and then a corpsman brought the lab results. The doctor took one look and immediately was like, well, he needs blood and platelets, and we will be admitting him to do the transfusions right now. We had expected he would need something, so it wasn't a huge surprise. We were admitted to the pediatric floor for the afternoon, and told we could leave once the transfusions were complete. It took a couple hours to get the blood products ready for him, and then we had to wait several more for them to transfuse (it takes 4 hours for red blood cells, and 30 minutes for platelets). We ended up being there for about 9 hours total.
When we got to the floor we noticed that Shad's friend Janae was there again, so I stopped by to chat with her mom and see how they were doing. It turns out Janae had had a seizure (or something like it) at the store the day before and had been brought in by ambulance. Her mom was very stressed by the event, and was having a hard time. I guess that Janae had turned blue, and was not breathing for a bit. No one at the store had helped, and her mom was very upset. She said that she thought she was gone, but thankfully she came out of it. I was kind of glad we were there because she had no car, and no clothes. I was able to give her a ride to the store to at least get a few clean things, and some food. It was really good for me too, it is nice to have someone to talk to who is really able to understand what I am going through. We talked about death, grief, making the most of each day, memories and treatment plans among other things. It really was wonderful.
Unfortunately I was a slacker and didn't take any pictures this day, but here is a pic I never posted of the last time Shad got platelets, we were in a room with a bed this time, but you get the idea.
When we got to the floor we noticed that Shad's friend Janae was there again, so I stopped by to chat with her mom and see how they were doing. It turns out Janae had had a seizure (or something like it) at the store the day before and had been brought in by ambulance. Her mom was very stressed by the event, and was having a hard time. I guess that Janae had turned blue, and was not breathing for a bit. No one at the store had helped, and her mom was very upset. She said that she thought she was gone, but thankfully she came out of it. I was kind of glad we were there because she had no car, and no clothes. I was able to give her a ride to the store to at least get a few clean things, and some food. It was really good for me too, it is nice to have someone to talk to who is really able to understand what I am going through. We talked about death, grief, making the most of each day, memories and treatment plans among other things. It really was wonderful.
Unfortunately I was a slacker and didn't take any pictures this day, but here is a pic I never posted of the last time Shad got platelets, we were in a room with a bed this time, but you get the idea.
Thursday, October 24, 2013
Round 2, the rest
About 8:00 on Saturday morning I finally dragged myself out of bed and got going. It was a pretty lazy morning, I snuggled with Shad for a little bit and we watched his ipad. The nurse came in and started his next chemo about 11:00. He started feeling yucky a lot sooner this time around, and didn't eat much for days 2-7. Once his chemo was done for the day grandma and grandpa worked on getting him to eat something and let me take a little nap. Once he finally ate a few bites we were able to go out and play for a little bit. There was another little boy there who definitely wanted to be all up in our business. I like kids, but this one rubbed me the wrong way. He was a bit annoying and kind of rude. His mom wasn't feeling well, so she was resting in the room. Anyway, he and Shad played for a while before we all got sick of him and headed back into the room. We must not have done anything too exciting the rest of the day because I don't have any pictures, and I don't recall anything else.
Sunday Shad woke up excited because daddy was coming back that day. Grandma and grandpa once again worked on getting him to eat something while I took a shower and got dressed. They offered item after item and he continuously refused. Finally grandpa offered bologna off of the sandwich he had brought for lunch. Shad perked up and agreed to it. He ate two slices of bologna before we ran out. All I know if that I was nauseous, bologna is not what I would pick to eat. Chemo started again at 11:00 and went for 2 hours. After chemo I began trying to get Shad to get dressed and go for a walk or go out and play but he wasn't too interested. Finally he decided that he would walk downstairs to watch for daddy once he was on his way. When we got back from that I realized that my military id which had been in my pocket no longer was. Trevor and I went in search of it, and to ask at the main desk if anyone had turned it in. Luckily someone had turned it in to security, so that was good. We went back upstairs, Shad did a puzzle, and then we played Disney Uno. After that we went back in the room and got ready for dinner. I think you can tell from these pictures that Shad is not feeling well, he definitely was not his usual self. Prior to going home the nurse let us know someone was going to be leaving one of the bigger rooms the next day and we should be able to move over there. We were pretty excited about that. I helped get Shad in bed, and then I went home with my parents to sleep for the night while Trevor stayed with Shad.
Monday my mom, dad and I went back to the hospital. Trevor let us know that Shad had thrown up a little bit that morning. I was happy to see that we had one of our favorite nurses, and she had decorated Shad's board really cute. Once Shad's chemo started my mom and I went to run some errands. I had decided to make some hats for some people we had met at the hospital, their 2 year old had been diagnosed with leukemia the week before, and so I needed to get some yarn for that. We were also looking for some fabric for a project I am conjuring up in my mind. I couldn't find what I wanted for that, we will see if ever happens... We picked up some lunch on the way back to the hospital. While we were gone the other room had opened up, so Trevor and my dad had moved everything over, and got the new room all set up. We ate lunch, played Headbandz, and then Shad played on his ipad for awhile. He wasn't feeling very good, but we wanted him to get out of bed for a bit so we said we should get dressed and go for a walk. He flat out refused multiple times. Finally, I asked if he didn't want to for a walk, or if he didn't want to get dressed. He said he didn't want to get dressed, so I told him he could go in his pjs. He was more than happy to go after that. We went up to the top floor and watched for airplanes for awhile, and then we went down to the main floor, walked around outside a little and then went back to his room. That pretty much wore him out, so he got in bed and hung out there the rest of the evening.
Tuesday Trevor had duty so he had to go to work. He left bright and early, luckily Shad and I were able to sleep longer. Shad was feeling really yucky, but he was excited because his friend Janae was coming for chemo that day, and he had a gift to give her. He just wanted me to snuggle him in bed for awhile while we watched a movie. When grandma came she and he snuggled in bed for a bit. While Shad had chemo grandma and grandpa put up the decorations that people from grandpa's work had made and sent for Shad. He thought they were pretty awesome. After chemo Shad got dressed so he could walk down to Janae's room and give her the gift he got for her. (sidenote: Janae loves One Direction and has several posters that she hangs in her hospital room, Shad has seen them in the past. When we saw some One Direction things at Wal-mart he got very excited and said, "look mom, it's Janae's boys!" We bought her a little stationary kit that had pictures of them. Later we saw a One Direction bear at Build a Bear, so we had to buy that for her as well.) As he was getting dressed he threw up some more, but he wasn't going to let that deter him from going to see her. We walked down, and he gave her the present. She was very excited, as we had hoped. Her and Shad hung out for a bit watching Star Wars on the ipad, and then decorating with her new One Direction stuff. After a bit Shad started looking a little worse for wear, so we headed back to our room. Shad rested on the bed, threw up the apple he had eaten, and then just felt yucky. He threw up again, and so his nurse gave him some benadryl which knocked him out.
Wednesday Shad seemed to be feeling a little better in the morning. He played with grandpa for a while throwing his stuffed animals back and forth. After he got tired of that he and daddy took turns playing games on the ipad, and watching movies. We also played some more Headbandz (I think we played this at least once a day). We were all happy when the chemo was finished...done with round 2. That afternoon my mom and I went to the temple, it was really nice, and exactly what I needed. We came back and I finished working on my project I had started on Monday. Luckily I was able to finish late that night! There was a little bit of throwing up this day as well.
Thursday Shad seemed to be feeling much better. He woke up and drew some pictures for Janae. The chemo makes her really sick, and she was feeling pretty down. He was bouncing around, we were able to unhook him from the fluids and take out the needle a little while before we left. We packed all of our stuff up and waited for the magic time. They didn't want him to have the Neulasta until that evening, so I agreed to do the shot at home. We walked down to Janae's room and Shad gave her the pictures he had drawn. It is great to watch both of them light up when they see each other. I wrapped up the hats that I had made, and found a card that could go with them. I hope they helped brighten that families day a little bit. I can not imagine living at the hospital for weeks on end with a two year old and a 3 month old. Finally it was time to go home, so we gathered our stuff and headed out. Shad had been doing well that morning so we weren't too worried, but about halfway home he started looking a little ill. We asked if he was ok and he said yes, but a few minutes later he threw up. Luckily there was a towel sitting next to him, and I was able to pull that over on him so he and the car seat stayed pretty clean. We got home and relaxed and enjoyed being home. Shad threw up again a little bit later that night. We put him to bed and hoped he would be able to sleep it off.
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| I made this for Shad, and he thought it was pretty awesome! |
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| one of the nurses gave him a coloring book with tattoos |
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| you can tell he is not feeling too great |
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| a birthday present from grandma doggies brought out his smile |
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| as did playing legos with daddy |
Tuesday Trevor had duty so he had to go to work. He left bright and early, luckily Shad and I were able to sleep longer. Shad was feeling really yucky, but he was excited because his friend Janae was coming for chemo that day, and he had a gift to give her. He just wanted me to snuggle him in bed for awhile while we watched a movie. When grandma came she and he snuggled in bed for a bit. While Shad had chemo grandma and grandpa put up the decorations that people from grandpa's work had made and sent for Shad. He thought they were pretty awesome. After chemo Shad got dressed so he could walk down to Janae's room and give her the gift he got for her. (sidenote: Janae loves One Direction and has several posters that she hangs in her hospital room, Shad has seen them in the past. When we saw some One Direction things at Wal-mart he got very excited and said, "look mom, it's Janae's boys!" We bought her a little stationary kit that had pictures of them. Later we saw a One Direction bear at Build a Bear, so we had to buy that for her as well.) As he was getting dressed he threw up some more, but he wasn't going to let that deter him from going to see her. We walked down, and he gave her the present. She was very excited, as we had hoped. Her and Shad hung out for a bit watching Star Wars on the ipad, and then decorating with her new One Direction stuff. After a bit Shad started looking a little worse for wear, so we headed back to our room. Shad rested on the bed, threw up the apple he had eaten, and then just felt yucky. He threw up again, and so his nurse gave him some benadryl which knocked him out.
Wednesday Shad seemed to be feeling a little better in the morning. He played with grandpa for a while throwing his stuffed animals back and forth. After he got tired of that he and daddy took turns playing games on the ipad, and watching movies. We also played some more Headbandz (I think we played this at least once a day). We were all happy when the chemo was finished...done with round 2. That afternoon my mom and I went to the temple, it was really nice, and exactly what I needed. We came back and I finished working on my project I had started on Monday. Luckily I was able to finish late that night! There was a little bit of throwing up this day as well.
Thursday Shad seemed to be feeling much better. He woke up and drew some pictures for Janae. The chemo makes her really sick, and she was feeling pretty down. He was bouncing around, we were able to unhook him from the fluids and take out the needle a little while before we left. We packed all of our stuff up and waited for the magic time. They didn't want him to have the Neulasta until that evening, so I agreed to do the shot at home. We walked down to Janae's room and Shad gave her the pictures he had drawn. It is great to watch both of them light up when they see each other. I wrapped up the hats that I had made, and found a card that could go with them. I hope they helped brighten that families day a little bit. I can not imagine living at the hospital for weeks on end with a two year old and a 3 month old. Finally it was time to go home, so we gathered our stuff and headed out. Shad had been doing well that morning so we weren't too worried, but about halfway home he started looking a little ill. We asked if he was ok and he said yes, but a few minutes later he threw up. Luckily there was a towel sitting next to him, and I was able to pull that over on him so he and the car seat stayed pretty clean. We got home and relaxed and enjoyed being home. Shad threw up again a little bit later that night. We put him to bed and hoped he would be able to sleep it off.
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