October 22, 2008
"After the last update, we were able to go home for the rest of the week. We had a FABULOUS week. I administered Kole's irinotecan chemotherapy at home, after a nurse came to educate me. It was a dream, not having to drive up and back every day. Kole did not experience the horrific diarrhea like the last time, a true blessing, so we are not facing any rashes. And his nausea remained under control with medication, so he was able to eat. We spent Friday at Baltimore Inner Harbor after my husband woke up feeling okay, Kole loved walking around, seeing the water, seeing the boats, seeing the "chickens" (pigeons), and running in the grass. We didn't do the Aquarium thing this time, but plan to eventually, Kole hasn't been there since he was 7 months old. The day was, in all, wonderful.
Monday (20th) we arrived at the clinic and were good to go for chemo for the second week in a row, counts looked good, no fever, great vitals. The doctors called us in to discuss what the surgeons have decided. And the news is bleak. They have decided to cancel Kole's November 7th surgery. They feel that with the "margins" of Kole's tumor still being unclear, in other words, where the tumor starts and ends is still uncertain, and to go in at this point may do more harm than good. They said it is possible they wouldn't be able to get all the tumor, which is their goal. The recovery would be grueling and in the meantime he would miss out on weeks of chemotherapy, which he needs to keep the cancer from spreading. His diaphragm would almost be completely removed, and there may be bone involvement in the rib area as well. He would almost certainly need surgery after surgery as his chest grows bigger, and they would have to "stent" his chest.
Because the last CT scan was done before the results of the irinotecan shrinkage are in, the doctors want to push surgery back a bit and do another round of ifosfamide/etopiside chemotherapy, and then rescan. Another scan they have decided to do is a PET scan, which can show more precisely where the tumor begins and ends. It shows cell abnormalities. In the meantime, unfortunately, they are referring us to the radiation therapy department. We go in next week on Tuesday (28th) to start the ball rolling. It could take up to a month for them to garner a game plan to tailor Kole's radiation therapy. As a last resort, they will radiate the tumor and hopefully shrink it down to a more operable size, but it will have detrimental side effects in other ways. I am told the meeting on Tuesday will scare us all greatly.
Because of all these new developments, I have decided to take a step back and look at the bigger picture, and realized that I am feeling a little insecure about their decisions. Perhaps, if we've hit a roadblock here, we should consider, Where is the absolute, best place for Kole to go to get his care? Is there a someone who specializes more in his rare cancer? Is there a surgeon out there who IS confident? I have decided to get a second opinion regarding Kole's major life saving/threatening surgery. We are going to CHOP. Children's Hospital of Philadelphia, where they do extreme surgeries every day (not that they don't here at Hershey), just to see what they have to say. Apparently, this is a world-renowned hospital as far as intricate surgeries go, like separating conjoined twins, etc. Hopefully they will tell me they are able to do the surgery, before any radiation has to happen. We are not against considering taking Kole out of the state at this point. Or even the country.
Our appointment at CHOP is October 31st. Please pray with us. The representative from CHOP told me it is not uncommon for children to get their regular care elsewhere, and just get their surgeries at CHOP. We'll see what happens..... If Kole's tumor should shrink some more in the meantime, with all the chemotherapy (not likely), then radiation will be called-off and if the surgeons here at Hershey feel it's a go, then it's a go. If not, then we are getting prepared for radiation.
Thank you to all of you for your prayers and constant flow of love. We need them now more than ever. It's hard to believe things can keep getting scarier and scarier, but they are. We need a miracle.
The prayers for my husband are paying off (could be helped by the new medication), and thank you so much for praying for him as well. He is experiencing many more healthy days lately, although still on the fence sometimes. Every day is "iffy". I cherish every healthy one.
God bless everyone and we will be in touch, and surely let everyone know what CHOP has to say, and keep everyone posted. As for now, we are here, admitted at Hershey, because Kole has had fevers again. After hearing the bad news on Monday and spending the day here at clinic, we arrived home at 4:30pm, and then Kole spiked a fever. We came back into the ER Monday night, then they released us. We got home at 1am. Then in the morning got a phone call to bring him back. Came in all day Tuesday. Sent us home. Called me Tuesday night, blood cultures positive, come back AGAIN. Got admitted and here we are and will remain until the end of the week. They may discharge us and send us home on vancomycin IV treatment at home. I can handle that. Just tired of the running back and forth 5 times in 2 days. Time to settle in, God bless, and we'll keep you posted."
November 19, 2008
"I understand there are many, many people out there who love us
and pray for Kole every day. I am so sorry to keep you waiting for
any news, but as I am sure you can imagine, I do not always have
the time or even the strength to stay on top of it. Please bear
with me, it has been a rough month.
I suppose I left off discussing that the surgery was going to be postponed and that we were getting a second opinion and most likely headed for radiation therapy. All of this has changed.
We traveled to Philadelphia on Oct. 31st (our week off of chemo) with high hopes and met with excellent doctors. We were very impressed with the CHOP experience in general, it's an amazing place. We had forwarded all Kole's information to them before we went so they were ready for us, and we were ready for answers. They talked about reverifying the pathology of Kole's tumor, to be sure it's the alveolar subtype, since there was some disagreement about that initially. They determined it to be alveolar as well. Had it been embryonal, they said, they felt they should definitely do surgery because sometimes there's a chance with embryonal tumors that they develop into mature cells and are no longer considered malignant, but that's not our case. They also said they wanted to do an MRI/MRA to check for blood vessel involvement extending out of the tumor, a test Hershey hadn't done, and that this would be their main determinate for surgery. So we scheduled the MRI/MRA for that Monday which was the 3rd.
We got to drive home from CHOP Friday night and made it in time for Trick or Treating! Kole dressed up as Lightning McQueen (I will post pics soon) and his cousin Karley was Hannah Montana. They had a BLAST! Kole got so much candy and did a lot more walking than I expected him too. He wasn't so sure about some of the decorations people had outside their homes, but mostly had a pleasant time.
Sunday the 2nd was Kole's 2nd birthday! Hip Hip Hurray! Hip Hip Hurray! Unfortunately my husband missed it, he relapsed the night before. He spent Kole's birthday crying and reeling. He said he felt worthless and was scared he was missing Kole's last birthday. I almost couldn't even leave the house because I just felt so terrible for him. It's like watching someone be on fire, and you just watch them burn. But Kole and I managed to make it out the door and spent the day at Strasburg Railroad and the Choo Choo Barn. We went with Aunt "Timmie", "Tarley", and Aunt August. We had a fabulous day! The Choo Choo Barn was an awesome experience, both kids loved greatly. And of course the train ride was nice, the coal stoves burning, nice and warm and toasty. We finished the day with some cake and pumpkin roll at my mom's house with a few party guests who dropped off some presents for Kolebear. He loves his new truck, medical "kit", and Cars.
Our fantastic weekend to celebrate our "big boy" over, and back to reality Monday the 3rd, we drove out to Philadelphia again for Kole's MRI/MRA. He did an awesome job even though he couldn't eat all day. The anesthesia took a long time to wear off. It was overwhelming because I had to wake him up at midnight to eat, otherwise he wouldn't even eat until the following evening because Tuesday morning the 4th was another sedated scan (radiation assessment) at Hershey. Sigh.
Tuesday the 4th we had some imaging done in radiation. They wanted to make a "movie" of Kole breathing, so they could get a feel for their new "gating" radiation system. They were going to break some medical ground with Kole being the guinea pig in the new "gating" radiation machine, which allows the radiation beam to be timed with your breathing, PERFECT for our case because Kole's tumor is located in the most movable area of the body at rest. Unfortunately, Kole's tumor has affected his diaphragm in such a way that he has had to compensate by breathing irradically, so this throws off their system, and he won't be eligible to receive the special treatment. Our hopes were dashed on this one. Dr. Buchsbaum was certain this was the best chance Kole had to receive the least invasive radiation. Radiation is something they try to avoid at all costs in children this young, especially in the area of his body they would have to radiate (vital organs). There are obviously the general side effects of nausea and fatigue, but radiation on the liver of a 2 year old could cause it to inflame or burst, radiation on the heart can render damage (not to mention the damage chemo has already caused), radiation on the lungs at his age could cause permanent damage that he might need steroid inhalers the rest of his life, and radiation to his spine could cause many different problems as he grows, mainly that his growth would be severly stunted from the waist up, but also that it could cause his spine to curve. The treatment would require them to put Kole to sleep every single weekday for 6 weeks. That's a lot of sedation. The doctor (awesome man, by the way) also told us more information than we'd heard so far in regards to the surgery they had planned on doing.
The surgery would involve taking lattisimus dorsii muscle from Kole's own back, and transplanting them into his chest cavity to replace the diaphragm. These transplanted muscles would then need to be "hooked up" to a nerve, which would cause the muscles to contract. This nerve was going to be the phrenic nerve, and they would run this from his back as well, into the chest cavity. Then, a pacemaker would be put in place to regulate the breathing. Ribs may need to be removed as well. This would require Kole's entire chest to be "stented". Also, there is residual tumor still nearby his heart. This was going to be one, big, radical surgery. But on top of it, they said, they felt that they would still probably have to radiate later. And no one, and I mean No ONE (they called at least a dozen other countries) can tell them what to expect if they would decide to radiate these transplanted muscles. Essentially, things could just "fall apart" inside, rendering the surgery worthless. And then there would be multiple surgeries. Kole would be quite disabled.
We are being given scary statistics at this time. I heard the results from CHOP later that week as we were inpatient for chemotherapy the rest of that week at Hershey(4th-8th). They called and said that the MRI/MRA showed the tumor was intricately attached to his liver. Dr. Mattei (the ped surgeon at CHOP) declined to operate as well, stating too much blood vessel involvement. The recommendation we got from CHOP was to push on with chemotherapy, and re-scan. We told them that's already the path we're on at Hershey, so it appears as if we won't be going back to CHOP, at least for awhile.
Monday the 10th was another big day full of lots of hopes. The doctor scheduled our PET scan that day. This test should show us how "alive" the tumor is, and where it begins and ends. They inject a radioisotope into the bloodstream, wait an hour, then scan. Any abnormalities get "lit up" on the screen. The hope was that the tumor would just be "dead", and then they would go in a begin removing portions of it. Unfortunately, a sock in the stomach, again. Kole's tumor is very much still alive with malignancy. And this is bad news. The lymph nodes in Kole's chest were lighting up, as well as all areas of tumor, except the most distant "branches". What this means to us is that his tumor is still desperately trying to spread. It hasn't gotten any smaller, and they are at this point worried it may try to grow. Radiation therapy is out of the picture now, at least for now, because the doctor said we wouldn't be able to do the chemo during radiation, radiation would only give local control, and we may "kill" the existing tumor only to find it "popped up" somewhere else in the meantime. His lungs are a big concern. Rhabdo likes to spread to lungs and bones.
So here is our big dilemma. I have already written to Oprah. Please don't laugh. Kole's treatment options are dwindling. They have decided to start back at the beginning of Kole's chemotherapy cycle, because he had the best response at the beginning. We are going to press on, with a few more chemo cycles. Unfortunately, Kole is almost at his maximum capacity for chemotherapy. There is only so much more they can give him. WE PRAY THESE CHEMO CYCLES DESTROY KOLE'S TUMOR, ONCE AND FOR ALL, IN JESUS NAME (please please pray this prayer for us).
If the chemotherapy is ineffective, the next step, the doctor said, is not to give up. She feels at this time, due to the relationship of the tumor with the liver, and the extent of disease spread, that Kole should see a liver transplant specialist. He may or may not need a transplant, but they are the best for the job in any liver surgery. This will require us to go most likely to Pittsburgh, but NYC Sloan Kettering isn't out of the question.
In the meantime, we are told that we should feel blessed by how well our boy is doing. It is truly amazing, you cannot even tell he is sick on the outside. This allows for planning-time we may not have been able to have had his condition become unstable, and we can brainstorm and not be thrown into radiation or surgery as a last resort. As parents, we feel this is just our time, our gift from God, time to enjoy being with our son while life is still somewhat normal, while we can still hold him in our arms and kiss him and smell him and be with him. Hear his voice.
A special thank you to Aunt Lee who spent a week with us recently, came all the way from San Francisco. Thanks for everything, we love you. Anyone interested in visiting, just let me know first, and you MUST be healthy. I am too overwhelmed to even think these days, so just call me or text me or email me and I'll do my best. God bless and please keep us in your daily prayers. My husband has been healthy for two weeks in a row, minus some minor nausea and heartburn, since Kole's birthday. We are inpatient chemo right now, and he is actually here with me. Praise Jesus, I don't go through it alone, at least for today.
I found the quote the other day, and it seems appropriate for my
mood. God bless you all and good night.
P.S. My husband got a computer for his birthday. The updates shouldn't be so few and far between now. Thanks sooooo much. Really. I can't say it enough."
I suppose I left off discussing that the surgery was going to be postponed and that we were getting a second opinion and most likely headed for radiation therapy. All of this has changed.
We traveled to Philadelphia on Oct. 31st (our week off of chemo) with high hopes and met with excellent doctors. We were very impressed with the CHOP experience in general, it's an amazing place. We had forwarded all Kole's information to them before we went so they were ready for us, and we were ready for answers. They talked about reverifying the pathology of Kole's tumor, to be sure it's the alveolar subtype, since there was some disagreement about that initially. They determined it to be alveolar as well. Had it been embryonal, they said, they felt they should definitely do surgery because sometimes there's a chance with embryonal tumors that they develop into mature cells and are no longer considered malignant, but that's not our case. They also said they wanted to do an MRI/MRA to check for blood vessel involvement extending out of the tumor, a test Hershey hadn't done, and that this would be their main determinate for surgery. So we scheduled the MRI/MRA for that Monday which was the 3rd.
We got to drive home from CHOP Friday night and made it in time for Trick or Treating! Kole dressed up as Lightning McQueen (I will post pics soon) and his cousin Karley was Hannah Montana. They had a BLAST! Kole got so much candy and did a lot more walking than I expected him too. He wasn't so sure about some of the decorations people had outside their homes, but mostly had a pleasant time.
Sunday the 2nd was Kole's 2nd birthday! Hip Hip Hurray! Hip Hip Hurray! Unfortunately my husband missed it, he relapsed the night before. He spent Kole's birthday crying and reeling. He said he felt worthless and was scared he was missing Kole's last birthday. I almost couldn't even leave the house because I just felt so terrible for him. It's like watching someone be on fire, and you just watch them burn. But Kole and I managed to make it out the door and spent the day at Strasburg Railroad and the Choo Choo Barn. We went with Aunt "Timmie", "Tarley", and Aunt August. We had a fabulous day! The Choo Choo Barn was an awesome experience, both kids loved greatly. And of course the train ride was nice, the coal stoves burning, nice and warm and toasty. We finished the day with some cake and pumpkin roll at my mom's house with a few party guests who dropped off some presents for Kolebear. He loves his new truck, medical "kit", and Cars.
Our fantastic weekend to celebrate our "big boy" over, and back to reality Monday the 3rd, we drove out to Philadelphia again for Kole's MRI/MRA. He did an awesome job even though he couldn't eat all day. The anesthesia took a long time to wear off. It was overwhelming because I had to wake him up at midnight to eat, otherwise he wouldn't even eat until the following evening because Tuesday morning the 4th was another sedated scan (radiation assessment) at Hershey. Sigh.
Tuesday the 4th we had some imaging done in radiation. They wanted to make a "movie" of Kole breathing, so they could get a feel for their new "gating" radiation system. They were going to break some medical ground with Kole being the guinea pig in the new "gating" radiation machine, which allows the radiation beam to be timed with your breathing, PERFECT for our case because Kole's tumor is located in the most movable area of the body at rest. Unfortunately, Kole's tumor has affected his diaphragm in such a way that he has had to compensate by breathing irradically, so this throws off their system, and he won't be eligible to receive the special treatment. Our hopes were dashed on this one. Dr. Buchsbaum was certain this was the best chance Kole had to receive the least invasive radiation. Radiation is something they try to avoid at all costs in children this young, especially in the area of his body they would have to radiate (vital organs). There are obviously the general side effects of nausea and fatigue, but radiation on the liver of a 2 year old could cause it to inflame or burst, radiation on the heart can render damage (not to mention the damage chemo has already caused), radiation on the lungs at his age could cause permanent damage that he might need steroid inhalers the rest of his life, and radiation to his spine could cause many different problems as he grows, mainly that his growth would be severly stunted from the waist up, but also that it could cause his spine to curve. The treatment would require them to put Kole to sleep every single weekday for 6 weeks. That's a lot of sedation. The doctor (awesome man, by the way) also told us more information than we'd heard so far in regards to the surgery they had planned on doing.
The surgery would involve taking lattisimus dorsii muscle from Kole's own back, and transplanting them into his chest cavity to replace the diaphragm. These transplanted muscles would then need to be "hooked up" to a nerve, which would cause the muscles to contract. This nerve was going to be the phrenic nerve, and they would run this from his back as well, into the chest cavity. Then, a pacemaker would be put in place to regulate the breathing. Ribs may need to be removed as well. This would require Kole's entire chest to be "stented". Also, there is residual tumor still nearby his heart. This was going to be one, big, radical surgery. But on top of it, they said, they felt that they would still probably have to radiate later. And no one, and I mean No ONE (they called at least a dozen other countries) can tell them what to expect if they would decide to radiate these transplanted muscles. Essentially, things could just "fall apart" inside, rendering the surgery worthless. And then there would be multiple surgeries. Kole would be quite disabled.
We have been told that there isn't a case to
mirror our son's in modern times.
He is breaking new medical
ground.
We are being given scary statistics at this time. I heard the results from CHOP later that week as we were inpatient for chemotherapy the rest of that week at Hershey(4th-8th). They called and said that the MRI/MRA showed the tumor was intricately attached to his liver. Dr. Mattei (the ped surgeon at CHOP) declined to operate as well, stating too much blood vessel involvement. The recommendation we got from CHOP was to push on with chemotherapy, and re-scan. We told them that's already the path we're on at Hershey, so it appears as if we won't be going back to CHOP, at least for awhile.
Monday the 10th was another big day full of lots of hopes. The doctor scheduled our PET scan that day. This test should show us how "alive" the tumor is, and where it begins and ends. They inject a radioisotope into the bloodstream, wait an hour, then scan. Any abnormalities get "lit up" on the screen. The hope was that the tumor would just be "dead", and then they would go in a begin removing portions of it. Unfortunately, a sock in the stomach, again. Kole's tumor is very much still alive with malignancy. And this is bad news. The lymph nodes in Kole's chest were lighting up, as well as all areas of tumor, except the most distant "branches". What this means to us is that his tumor is still desperately trying to spread. It hasn't gotten any smaller, and they are at this point worried it may try to grow. Radiation therapy is out of the picture now, at least for now, because the doctor said we wouldn't be able to do the chemo during radiation, radiation would only give local control, and we may "kill" the existing tumor only to find it "popped up" somewhere else in the meantime. His lungs are a big concern. Rhabdo likes to spread to lungs and bones.
So here is our big dilemma. I have already written to Oprah. Please don't laugh. Kole's treatment options are dwindling. They have decided to start back at the beginning of Kole's chemotherapy cycle, because he had the best response at the beginning. We are going to press on, with a few more chemo cycles. Unfortunately, Kole is almost at his maximum capacity for chemotherapy. There is only so much more they can give him. WE PRAY THESE CHEMO CYCLES DESTROY KOLE'S TUMOR, ONCE AND FOR ALL, IN JESUS NAME (please please pray this prayer for us).
If the chemotherapy is ineffective, the next step, the doctor said, is not to give up. She feels at this time, due to the relationship of the tumor with the liver, and the extent of disease spread, that Kole should see a liver transplant specialist. He may or may not need a transplant, but they are the best for the job in any liver surgery. This will require us to go most likely to Pittsburgh, but NYC Sloan Kettering isn't out of the question.
In the meantime, we are told that we should feel blessed by how well our boy is doing. It is truly amazing, you cannot even tell he is sick on the outside. This allows for planning-time we may not have been able to have had his condition become unstable, and we can brainstorm and not be thrown into radiation or surgery as a last resort. As parents, we feel this is just our time, our gift from God, time to enjoy being with our son while life is still somewhat normal, while we can still hold him in our arms and kiss him and smell him and be with him. Hear his voice.
We truly just
enjoy every second at this point. There aren't earthly words to
describe the fear and dread we have of losing our child, yet feel
so blessed every day even to have him. He is so amazing. A true
walking miracle. When he beats the odds they are giving him (10-20
percent chance of cure), he will be an even greater miracle. It
will truly be an act of God.
I just want to tell all the parents out there to give their kids an
extra hug and kiss tonight,
or give them a call, tell them you love
them. Pour your heart into them.
Never ever take them for
granted.
A special thank you to Aunt Lee who spent a week with us recently, came all the way from San Francisco. Thanks for everything, we love you. Anyone interested in visiting, just let me know first, and you MUST be healthy. I am too overwhelmed to even think these days, so just call me or text me or email me and I'll do my best. God bless and please keep us in your daily prayers. My husband has been healthy for two weeks in a row, minus some minor nausea and heartburn, since Kole's birthday. We are inpatient chemo right now, and he is actually here with me. Praise Jesus, I don't go through it alone, at least for today.
"Yesterday's the past, tomorrow's the future, but today is a
gift.
That's why it's called the present." Bill Keane
P.S. My husband got a computer for his birthday. The updates shouldn't be so few and far between now. Thanks sooooo much. Really. I can't say it enough."
I worked mostly on Kole today, darkening his hair and changing a few things on his face and am not happy with his nose yet. A couple other touch ups here and there. Still more things to fix up and lots more in the background (heck, the foreground too). His story is starting to get intense.
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