Awful diagnosis for my sweet Phoebe-update 10/11
Sept 14, 2015 23:07:48 GMT
MDscrapaholic, scrappysurfer, and 2 more like this
Post by shescrafty on Sept 14, 2015 23:07:48 GMT
Here is a Facebook page we created to update on donor drives and how to register
www.facebook.com/fightforphoebe
Here is the page so far. Thank you for all of your support. Please feel free to cope and SHARE our page on Facebook or anywhere else you think could help. The more people we reach who can become donors, the more Phoebe and others like her have a chance at survival!
I am numb right now and cannot talk to my family yet. We just got done speaking with doctors and she has something called HLH. I do not even know what it means right now. She either has a 60-70% rate of survival or 30-40% depending on what type she has (genetic or acquired) and that will take 4 weeks to determine. We are so terrified for her. I am so scared my baby is going to die. None of her path to diagnosis has been easy and I am afraid that her treatment will go the same way. I just can't lose my baby-I just want her well and happy again.
Please pray that she responds well to treatment and can make it through this. I know we are in the hospital for at least a month. She needs to fight this with all she has. I am just so scared.
Update 9/15
I updated on page 10, but could not edit my op on my phone.
9/17
Spoke with doctor Greenberg. We will start steroids (super high dose) tonight. It is very serious. Because of her past skin condition they are leaning more towards it being possible primary HLH and not secondary which they were leaning towards which is much more dangerous and drops the chances of successful treatment significantly. It is very scary and what we want to hear (she is going to be okay and this is totally treatable) is not what we are hearing at all. It is hard not to feel a little hopeless right now. She is so not the happy girl we know and expect so it is hard to have hope when we aren't hearing it and not seeing it in her. Thank you for your continued support and prayers. We have to take this day by day and it is hard.
Update-bone marrow donation
since a few of you have asked and offered, I am giving the link to be a bone marrow donor. They look for donors ages 18-44, but if you are older you can register online. It only takes a swab of your cheek to be on the donor list. Phoebe is adopted from Korea and we are hoping more donors that are Asian will help,since they are underrepresented on the registry. If you are so inclined here is the information on how to find a drive near you. Please share that information via Facebook and any other sources you have. The life you save may be Phoebe's or another child or person in need:
bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/Register-at-a-local-event/
thank you in advance for all of your help in spreading the word!
Update 9/22
we had a very rough night last night and had a big team meeting today. She is back in the ICU and will be for quite some time.
As far as actual treatment goes dr Greenberg feels like we should not hold anything back. She is continuing with steroids and starting chemo today. She was supposed to have a lumbar puncture and injected chemo right into her spinal column today but they dint feel it insane to do that.
Dr Greenberg made it clear that pushing forward aggressively will show us if it is treatable or not more quickly than what we are doing before. But we still have no guarantees that being aggressive will work, we just know from yesterday that we need to step it up.
On the MRI they saw brain bleeds in places where they had seen lesions last week. There is one area on the right side of her cerebellum we did not see with a lesion before that we do see now is bleeding. They are working on decreasing the pressure on the brain and giving her blood products that help clotting so hopefully that will help stop or reduce the bleeding they see. There are definitely parts of the brain that have died.
There are multiple things they are doing to move her safely to the next level. They feel they way she looks today in encouraging. She has spoken a few words (garbled-but understandable) and has waved at people. Those are good signs. They are monitoring the oxygen levels in her blood and giving her high concentrated sodium that should help bring down pressure.
She is by no means out of the woods or safe, but they are going full steam ahead to try and see what they can do to aggressively combat the disease. I don't think dr Greenberg was very happy with what we were told last night (they would let us know when it was time to call family to say goodbye) and we made it clear that we were not happy with how some things were done and presented. We know that we are not sitting back and just waiting. Dr Greenberg said and we agree that we never want to look back and feel like we should have tried something we didn't. He told us HLH is a very ugly disease and as a physician has humbled him a lot.
This is so hard and all we all want is our Phoebe back and strong. I know that the doctors are doing all they can to are that happen and make sure that no matter what happens we try everything to get her back.
9/27 tomorrow morning they will do another CT scan to see if the swelling in her brain has decreasd and we can safely do a lumbar puncture and inject methotrexate in her spine so it can help treat her brain. On Friday they checked and there was still too much swelling, so they are trying again tomorrow. Please say any extra prayers that her swelling goes down. She has not had headaches this weekend and we got to see a little bit of her now crooked sweet smile. Also send prayers and good thoughts that the lumbar puncture and injection go safely and she feels some more relief and continues to improve. Thank you again for your support!
10/4
Lots of ups and downs. It seems like when we get a handle on one thing another problem pops up. There are ferritin levels that had come down from 2200 to just over 200 and now they are back to almost 2000n a matter of four days. I feel like we take one step forward and two back. They are also concerned because of the amount of urine she is producing and how much sodium is there so now we have the endocrinology team as well. It seems nothing will ever be straight forward with this and it is exhausting. I think her levels increasing again so rapidly has just left me so drained and depressed. Ugh this is awful. Thank you for letting me vent. It is just so hard feeling so helpless when you see your baby so critically I'll.
Update 10/11
it looks more and more like the only thing that will save Phoebe is a bone marrow transplant. Each day there is another new complication and treatments with new side effects. My friends are organizing donor drives around Maryland to try and get more Asian people on the bone marrow donor registry. Although the match does not have to be Asian, it is most likely that if a match is to be found it will be among the Asian community. It is so hard to get one piece of bad news after another.
I know I have asked for people to get tested (looking mostly for donors ages 18-44) but if any of you are wanting to help and set up a donor drive in your area you can contact the Be the Match organization and get one started. My friends are doing them around Maryland, but anywhere someone can hold one is fantastic. If you are so inclined please send me a PM and I will get you the email and website for the organization. I know it is a long shot. 1/3 of kids don't make it to transplant, 1/3 make it and don't survive the transplant, and 1/3 live. The odds are not in our favor but we need to do whatever we can to get the odds up as much as we can.
Thank you again for the support you have shown us so far. It is appreciated.
www.facebook.com/fightforphoebe
Here is the page so far. Thank you for all of your support. Please feel free to cope and SHARE our page on Facebook or anywhere else you think could help. The more people we reach who can become donors, the more Phoebe and others like her have a chance at survival!
I am numb right now and cannot talk to my family yet. We just got done speaking with doctors and she has something called HLH. I do not even know what it means right now. She either has a 60-70% rate of survival or 30-40% depending on what type she has (genetic or acquired) and that will take 4 weeks to determine. We are so terrified for her. I am so scared my baby is going to die. None of her path to diagnosis has been easy and I am afraid that her treatment will go the same way. I just can't lose my baby-I just want her well and happy again.
Please pray that she responds well to treatment and can make it through this. I know we are in the hospital for at least a month. She needs to fight this with all she has. I am just so scared.
Update 9/15
I updated on page 10, but could not edit my op on my phone.
9/17
Spoke with doctor Greenberg. We will start steroids (super high dose) tonight. It is very serious. Because of her past skin condition they are leaning more towards it being possible primary HLH and not secondary which they were leaning towards which is much more dangerous and drops the chances of successful treatment significantly. It is very scary and what we want to hear (she is going to be okay and this is totally treatable) is not what we are hearing at all. It is hard not to feel a little hopeless right now. She is so not the happy girl we know and expect so it is hard to have hope when we aren't hearing it and not seeing it in her. Thank you for your continued support and prayers. We have to take this day by day and it is hard.
Update-bone marrow donation
since a few of you have asked and offered, I am giving the link to be a bone marrow donor. They look for donors ages 18-44, but if you are older you can register online. It only takes a swab of your cheek to be on the donor list. Phoebe is adopted from Korea and we are hoping more donors that are Asian will help,since they are underrepresented on the registry. If you are so inclined here is the information on how to find a drive near you. Please share that information via Facebook and any other sources you have. The life you save may be Phoebe's or another child or person in need:
bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/Register-at-a-local-event/
thank you in advance for all of your help in spreading the word!
Update 9/22
we had a very rough night last night and had a big team meeting today. She is back in the ICU and will be for quite some time.
As far as actual treatment goes dr Greenberg feels like we should not hold anything back. She is continuing with steroids and starting chemo today. She was supposed to have a lumbar puncture and injected chemo right into her spinal column today but they dint feel it insane to do that.
Dr Greenberg made it clear that pushing forward aggressively will show us if it is treatable or not more quickly than what we are doing before. But we still have no guarantees that being aggressive will work, we just know from yesterday that we need to step it up.
On the MRI they saw brain bleeds in places where they had seen lesions last week. There is one area on the right side of her cerebellum we did not see with a lesion before that we do see now is bleeding. They are working on decreasing the pressure on the brain and giving her blood products that help clotting so hopefully that will help stop or reduce the bleeding they see. There are definitely parts of the brain that have died.
There are multiple things they are doing to move her safely to the next level. They feel they way she looks today in encouraging. She has spoken a few words (garbled-but understandable) and has waved at people. Those are good signs. They are monitoring the oxygen levels in her blood and giving her high concentrated sodium that should help bring down pressure.
She is by no means out of the woods or safe, but they are going full steam ahead to try and see what they can do to aggressively combat the disease. I don't think dr Greenberg was very happy with what we were told last night (they would let us know when it was time to call family to say goodbye) and we made it clear that we were not happy with how some things were done and presented. We know that we are not sitting back and just waiting. Dr Greenberg said and we agree that we never want to look back and feel like we should have tried something we didn't. He told us HLH is a very ugly disease and as a physician has humbled him a lot.
This is so hard and all we all want is our Phoebe back and strong. I know that the doctors are doing all they can to are that happen and make sure that no matter what happens we try everything to get her back.
9/27 tomorrow morning they will do another CT scan to see if the swelling in her brain has decreasd and we can safely do a lumbar puncture and inject methotrexate in her spine so it can help treat her brain. On Friday they checked and there was still too much swelling, so they are trying again tomorrow. Please say any extra prayers that her swelling goes down. She has not had headaches this weekend and we got to see a little bit of her now crooked sweet smile. Also send prayers and good thoughts that the lumbar puncture and injection go safely and she feels some more relief and continues to improve. Thank you again for your support!
10/4
Lots of ups and downs. It seems like when we get a handle on one thing another problem pops up. There are ferritin levels that had come down from 2200 to just over 200 and now they are back to almost 2000n a matter of four days. I feel like we take one step forward and two back. They are also concerned because of the amount of urine she is producing and how much sodium is there so now we have the endocrinology team as well. It seems nothing will ever be straight forward with this and it is exhausting. I think her levels increasing again so rapidly has just left me so drained and depressed. Ugh this is awful. Thank you for letting me vent. It is just so hard feeling so helpless when you see your baby so critically I'll.
Update 10/11
it looks more and more like the only thing that will save Phoebe is a bone marrow transplant. Each day there is another new complication and treatments with new side effects. My friends are organizing donor drives around Maryland to try and get more Asian people on the bone marrow donor registry. Although the match does not have to be Asian, it is most likely that if a match is to be found it will be among the Asian community. It is so hard to get one piece of bad news after another.
I know I have asked for people to get tested (looking mostly for donors ages 18-44) but if any of you are wanting to help and set up a donor drive in your area you can contact the Be the Match organization and get one started. My friends are doing them around Maryland, but anywhere someone can hold one is fantastic. If you are so inclined please send me a PM and I will get you the email and website for the organization. I know it is a long shot. 1/3 of kids don't make it to transplant, 1/3 make it and don't survive the transplant, and 1/3 live. The odds are not in our favor but we need to do whatever we can to get the odds up as much as we can.
Thank you again for the support you have shown us so far. It is appreciated.