An Enigma
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Ronan and family
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Ronan and family
A real Ronan smile on camera with a real Jack smile, in a snuggle. It’s my new favorite. 💕💕
Well, shocker, we are still in the hospital. It turns out Ronan is a bit of a mystery to the docs right now. We will be here at least through Monday or Tuesday.
Firstly, the bone marrow results were essentially inconclusive. What they saw was good but they didn’t see enough. The sample they got was diluted too much by blood, and did not have enough cells in it, for them to definitively say one way or the other that Ronan had or had not reached “remission” after induction. It could be that it was just a bad sample they got, or it could be that Ronan’s marrow is a bit empty right now (very low cell counts overall.) Either way, on Monday, they will be repeating the bone marrow aspiration and they will also take a biopsy this time. So, we wait again.
Secondly, Ronan is puzzling all the docs as to why his cell counts are still so low. Usually at this point, they see cell counts beginning to recover. Ronan has pancytopenia, which is low red cells, white cells and platelets. For example, to safely receive chemo on Monday as planned, Ronan needs an absolute neutrophil count (ANC) of 750. Currently, his ANC is 160. It is slowly climbing (it was 70 on Friday) but very slowly. They would be holding the chemo this week regardless of anything else, with that ANC. They said it won’t hurt him to be on hold for up to two weeks. If at that point, we’re still low, they may change up the order of some things.
There is a medication, a type of immunotherapy, call blinatoumab that just received FDA approval for use in all B-Cell ALL kiddos on the frontline (first year) of treatment. This is actually kind of amazing, as until literally the day Ronan was diagnosed, 6/14/24, this drug was only available in a clinical trial in which you were randomized to receive it or not, or in relapse. However, the data from the study (which has been happening for a while) is so good, that it is now approved for all kids in front line. It has shown itself to be very affective at preventing relapse. It’s also a targeted immunotherapy unlike chemo so kids generally feel fairly okay while they are on it. There haven’t been any new drugs in childhood leukemia treatment in a long time. So I guess our timing is lucky?
His doctors sure seem excited about this new development being available to all their patients like Ronan.
So, we wait. The doctors have run a lot of labs to test for viral processes that could cause this kind of low cell count. So far the most likely culprits, CMV and EBV have come back negative. He did test positive for rhino/entero virus which is a respiratory virus that causes cold symptoms (despite zero cold symptoms) but they don’t generally expect the issues with his counts to be caused by that. I believe there are a few w others pending.
They were slightly worried about a complication that can happen with your own immune system and inflammation called HLH. They ran a bunch of specific labs for that as well but so far that doesn’t look likely (which is a good thing.) They did tested Ronan’s IGG levels yesterday and those were a little on the low side so he got some IVIG, which is essentially something to bolster his own immune system. His blood cultures thus far are negative and he has had one other low grade temp (100.5) since admission. So we wait. We wait and see what his numbers do over the next few days. We wait and see what the bone marrow says. We wait. Then we make a game plan in the next week or so for what comes next.
Good things…Clinically, Ronan is pretty stable. His vital signs are good. He is feeling a bit better than he had been. I think the dexamethasone really affected his mood and affect (which it can) as we’ve seen more smiles and heard more normal chatty Ronan the last few days than we had in a long while! He is also drawing again which makes my heart happy. ♥️ Now that the dex is almost out of his system, his blood sugars have stabilized and he hasn’t needed insulin (except for twice last night as he got a dose of dex with the IVIG and it shot his sugars sky high again.) So hopefully we can kiss diabetes management goodbye!..at least until the next time he needs dex in his treatment regimen.
My sister Kelsea is here and brought my nephew with her per Ronan’s request. It was nice to see some extra smiles for that yesterday. They also brought lots of really cool stuff from Uncle Nick’s unit in the National Guard that does medical evacuation and Ronan was super tickled. They went down to Albany with Jack last night and that has been good for him too. He needs time to be away from all this and be home and free to just be himself. RMH is amazing for what it is but it isn’t home. He was not happy to leave us and was insistent that he needs to be here to take care of Ronan 🥹😢 I talked to him about how he’s been doing such a wonderful job of that but he deserves to be taken care of too, and to have a break to just play. He still wasn’t buying it but I promised that if we weren’t all home by Tuesday, he could at least come back up and visit. Then he went on a little rant about how much he hates cancer and how he just wants Ronan to be better and not have to be in the hospital or at RMH. I feel that too buddy. Jack did get some bunny therapy in there the day after we got readmitted. He loved it. Ronan meanwhile was processing last night by talking about how his little owl has cancer and needed meds, needed to start chemo soon, etc. He had me read his chemo to the rescue book to Hooey. 💔
So here is where we are. We’re all processing in the ways we can. Ronan is doing well and still being a puzzle simultaneously. We are all wishing hard to be home. We have lots of reasons to be hopeful and also, the waiting freaking sucks. I’m supposed to work this coming Friday, haha and that feels like a faraway land that exists in some other reality.
Please keep sending your love and health and hope and prayers for Ronan. We would really, really, love to go home in the next few days. Thanks to everyone who is already doing so, we sure appreciate it 💕
Well, shocker, we are still in the hospital. It turns out Ronan is a bit of a mystery to the docs right now. We will be here at least through Monday or Tuesday.
Firstly, the bone marrow results were essentially inconclusive. What they saw was good but they didn’t see enough. The sample they got was diluted too much by blood, and did not have enough cells in it, for them to definitively say one way or the other that Ronan had or had not reached “remission” after induction. It could be that it was just a bad sample they got, or it could be that Ronan’s marrow is a bit empty right now (very low cell counts overall.) Either way, on Monday, they will be repeating the bone marrow aspiration and they will also take a biopsy this time. So, we wait again.
Secondly, Ronan is puzzling all the docs as to why his cell counts are still so low. Usually at this point, they see cell counts beginning to recover. Ronan has pancytopenia, which is low red cells, white cells and platelets. For example, to safely receive chemo on Monday as planned, Ronan needs an absolute neutrophil count (ANC) of 750. Currently, his ANC is 160. It is slowly climbing (it was 70 on Friday) but very slowly. They would be holding the chemo this week regardless of anything else, with that ANC. They said it won’t hurt him to be on hold for up to two weeks. If at that point, we’re still low, they may change up the order of some things.
There is a medication, a type of immunotherapy, call blinatoumab that just received FDA approval for use in all B-Cell ALL kiddos on the frontline (first year) of treatment. This is actually kind of amazing, as until literally the day Ronan was diagnosed, 6/14/24, this drug was only available in a clinical trial in which you were randomized to receive it or not, or in relapse. However, the data from the study (which has been happening for a while) is so good, that it is now approved for all kids in front line. It has shown itself to be very affective at preventing relapse. It’s also a targeted immunotherapy unlike chemo so kids generally feel fairly okay while they are on it. There haven’t been any new drugs in childhood leukemia treatment in a long time. So I guess our timing is lucky?
His doctors sure seem excited about this new development being available to all their patients like Ronan.
So, we wait. The doctors have run a lot of labs to test for viral processes that could cause this kind of low cell count. So far the most likely culprits, CMV and EBV have come back negative. He did test positive for rhino/entero virus which is a respiratory virus that causes cold symptoms (despite zero cold symptoms) but they don’t generally expect the issues with his counts to be caused by that. I believe there are a few w others pending.
They were slightly worried about a complication that can happen with your own immune system and inflammation called HLH. They ran a bunch of specific labs for that as well but so far that doesn’t look likely (which is a good thing.) They did tested Ronan’s IGG levels yesterday and those were a little on the low side so he got some IVIG, which is essentially something to bolster his own immune system. His blood cultures thus far are negative and he has had one other low grade temp (100.5) since admission. So we wait. We wait and see what his numbers do over the next few days. We wait and see what the bone marrow says. We wait. Then we make a game plan in the next week or so for what comes next.
Good things…Clinically, Ronan is pretty stable. His vital signs are good. He is feeling a bit better than he had been. I think the dexamethasone really affected his mood and affect (which it can) as we’ve seen more smiles and heard more normal chatty Ronan the last few days than we had in a long while! He is also drawing again which makes my heart happy. ♥️ Now that the dex is almost out of his system, his blood sugars have stabilized and he hasn’t needed insulin (except for twice last night as he got a dose of dex with the IVIG and it shot his sugars sky high again.) So hopefully we can kiss diabetes management goodbye!..at least until the next time he needs dex in his treatment regimen.
My sister Kelsea is here and brought my nephew with her per Ronan’s request. It was nice to see some extra smiles for that yesterday. They also brought lots of really cool stuff from Uncle Nick’s unit in the National Guard that does medical evacuation and Ronan was super tickled. They went down to Albany with Jack last night and that has been good for him too. He needs time to be away from all this and be home and free to just be himself. RMH is amazing for what it is but it isn’t home. He was not happy to leave us and was insistent that he needs to be here to take care of Ronan 🥹😢 I talked to him about how he’s been doing such a wonderful job of that but he deserves to be taken care of too, and to have a break to just play. He still wasn’t buying it but I promised that if we weren’t all home by Tuesday, he could at least come back up and visit. Then he went on a little rant about how much he hates cancer and how he just wants Ronan to be better and not have to be in the hospital or at RMH. I feel that too buddy. Jack did get some bunny therapy in there the day after we got readmitted. He loved it. Ronan meanwhile was processing last night by talking about how his little owl has cancer and needed meds, needed to start chemo soon, etc. He had me read his chemo to the rescue book to Hooey. 💔
So here is where we are. We’re all processing in the ways we can. Ronan is doing well and still being a puzzle simultaneously. We are all wishing hard to be home. We have lots of reasons to be hopeful and also, the waiting freaking sucks. I’m supposed to work this coming Friday, haha and that feels like a faraway land that exists in some other reality.
Please keep sending your love and health and hope and prayers for Ronan. We would really, really, love to go home in the next few days. Thanks to everyone who is already doing so, we sure appreciate it 💕
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Lori Schiefelbein