Monday ER
When we walked into the Primary Children's Hospital ER our expectation was to get some tests done and speed up the diagnosis process for whatever type of Autoimmune disease Henry had. We had researched and there is a list of different types of Arthritis and the prognosis would vary. Jeremy and I each had the thought that we should pack a day bag or grab some extra things just in case it was a one night stay but we both also decided against.
Checking in Henry was hurting enough that we took turns carrying him and they checked his temp and asked some of his symptoms. I started telling the whole story and the nurse said "we just need a snapshot of what is going on". Henry heard shot and started crying and getting worked up and upset about "no pokies!". We calmed him down and waited a few minutes until we were called back. We told the ER resident, nurse and doctor that we had an appointment with the Rheumatologist and we just couldn't wait anymore with Henry not responding to the steroids as well and as miserable as he was we came in for more help. The ER doc ordered some "labs" because Henry already knows what blood work and shots mean. The Rheumatologist came in and looked at him and said "He does not look very good". Then she did her assessment and asked questions and said this is not RA. Jeremy is pretty sure he heard her say she thought it was cancer but I was already crying and upset and didn't hear her because if it's not RA and my kid is getting worse right in front of my eyes what is it? She ordered more tests, told us that Henry would be admitted and probably be here for awhile and called Oncology to have them come talk to us. The doctor for oncology came in, talked a bit more and looked at tests and ordered more. When she came in again she said something like "this test came back and there were a bunch of baby white bloods cells that make us think it is more likely he has cancer" or something. So H was going to be admitted and we would wait until a smear test came back the next morning and gave us more of and idea what type and if it really was cancer. They did tell us a fair amount of times that because he had been on the steroids it was sort of treating the leukemia but only enough to mask some of the other symptoms. They said the steroids also made it hard for them to get very clear results from their blood tests.
So in the mean time I was texting a few family members things like "The rheumatologist doesn't think it is arthritis. ER doc and Rheumatologist say it's pretty likely cancer but they are running more tests and we will talk to the Oncologist soon." And "His lymph nodes in his armpits and neck are swollen and showing up on the xray. They think he might have an infection so they did a blood test for that too." And of course "So far it is looking more like leukemia. They don't know for sure but they are planning on doing a bone marrow biopsy tomorrow to know for sure."
I also sent this one "These people won't give a person time to ugly cry and hiccup sob! 😉 I have cried until I got a headache and my eyes burn. I am a bit numb/comforted right now."
We got settled into his room and they put an IV in to give him fluids and they gave him pain medicine. Over night they gave him platletts because his were low and they wanted them to be up for testing. We slept in the room with him; Jeremy on the couch bed and me next to my boy because he wanted mommy cuddles. He had a hard night because he had a fever from the leukemia and they had to pause his platletts and start them back up after it went down. By 10am Tuesday we had the official diagnosis B-cell acute lymphoblastic leukemia.
Checking in Henry was hurting enough that we took turns carrying him and they checked his temp and asked some of his symptoms. I started telling the whole story and the nurse said "we just need a snapshot of what is going on". Henry heard shot and started crying and getting worked up and upset about "no pokies!". We calmed him down and waited a few minutes until we were called back. We told the ER resident, nurse and doctor that we had an appointment with the Rheumatologist and we just couldn't wait anymore with Henry not responding to the steroids as well and as miserable as he was we came in for more help. The ER doc ordered some "labs" because Henry already knows what blood work and shots mean. The Rheumatologist came in and looked at him and said "He does not look very good". Then she did her assessment and asked questions and said this is not RA. Jeremy is pretty sure he heard her say she thought it was cancer but I was already crying and upset and didn't hear her because if it's not RA and my kid is getting worse right in front of my eyes what is it? She ordered more tests, told us that Henry would be admitted and probably be here for awhile and called Oncology to have them come talk to us. The doctor for oncology came in, talked a bit more and looked at tests and ordered more. When she came in again she said something like "this test came back and there were a bunch of baby white bloods cells that make us think it is more likely he has cancer" or something. So H was going to be admitted and we would wait until a smear test came back the next morning and gave us more of and idea what type and if it really was cancer. They did tell us a fair amount of times that because he had been on the steroids it was sort of treating the leukemia but only enough to mask some of the other symptoms. They said the steroids also made it hard for them to get very clear results from their blood tests.
So in the mean time I was texting a few family members things like "The rheumatologist doesn't think it is arthritis. ER doc and Rheumatologist say it's pretty likely cancer but they are running more tests and we will talk to the Oncologist soon." And "His lymph nodes in his armpits and neck are swollen and showing up on the xray. They think he might have an infection so they did a blood test for that too." And of course "So far it is looking more like leukemia. They don't know for sure but they are planning on doing a bone marrow biopsy tomorrow to know for sure."
I also sent this one "These people won't give a person time to ugly cry and hiccup sob! 😉 I have cried until I got a headache and my eyes burn. I am a bit numb/comforted right now."
We got settled into his room and they put an IV in to give him fluids and they gave him pain medicine. Over night they gave him platletts because his were low and they wanted them to be up for testing. We slept in the room with him; Jeremy on the couch bed and me next to my boy because he wanted mommy cuddles. He had a hard night because he had a fever from the leukemia and they had to pause his platletts and start them back up after it went down. By 10am Tuesday we had the official diagnosis B-cell acute lymphoblastic leukemia.
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