Journal entry by Abby Brown —
So quick update (well quick-ish)
Saturday, August 29th, before cousin Sophia's birthday party I noticed some peticheae on Henry. I called oncology to find out what needed to happen. This was about 11:30 and have to leave a message for them to page the doctor that is on call. So I look up what time the lab closes. The internet tells me noon... (crap, I gotta get him there, do they still have a standing order for bloodwork?) I call them and it seems as so they still do. Run him in fast without hearing back from the doctor. Get there at 11:55. Check in: 3 people behind me and another in front of me that takes longer than the 5 mins... the lab person leaves, but... they have staff on stand by to come and draw when they need it.
Luckily He was able to get his blood drawn.
The doctor calls during the party which I miss (of course...) so I call back to page them. Missed the call again!... ( gaahhh I am so pissed at myself! I could have cried at this point...) but the doctor calls Randy and he tells him that Henry's platelet count dropped from the 90,000 it was at the last visit, to about 30,000... Thats quite a drop in a week. So he told us to withhold the chemotherapy until we can recheck on Tuesday.
Fast forward to today Tuesday, September 1:
Wake up at 5:45 a.m. leave here about 6:15 a.m. for our first appointment of the 5 appointment day... both exhausted because someone(Henry) did not want to go to bed when he was supposed to...
First appointment was the ophthalmologist. This was a good appointment, she noticed that the patching (6-6 hours a day) we have been doing is helping. His right eye is showing a small amount of improvement! So now we are going to wean him off of the patching over months but eventually get him off from them. Yay!! We noticed over the last few weeks that the nose piece of his glasses was coming apart... brought them to the store portion to see what could be done. She stated that they are no longer in the warranty, and no longer make them like that, also didn't have any replacement part on hand... so, replacing them was the best thing... as she was saying this, I was thinking in my head, "super glue it is" and Henry was saying, "I want the red ones put me down, please, please, please!" Well, I guess he is ready to move on let's try it...
Second appointment was the ENT, also another good one. The Debrox we put into Henry's ears cleared the canal! We did the hearing test on him there. Which Henry did fantastic, he just sat in a sound proof booth all by himself and responded very well. Even the high frequencies! So his hearing checks out well!!
The third appointment is the blood draw. I honestly think that this is the best he has ever done for a blood draw... very minimal complaints and sat super still for the ladies!! Now just the wait for the phone call about results...
The fourth appointment was a neurosurgery recheck. This was also another great appointment. Dr. Madura went over the last few MRI's and stated that he has nothing but good news there... (wonderful, now let's keep it that way, right!!???) Henry is a subject that Madura likes to talk about in some of his talks with other clients or board meetings. I brought up that we found out results from Canada, he was not aware of the testing we had done and researched what I talked about right there in the appointment! He was very excited to find this information and read upon it (What a great person for wanting to know more about this kind of tumor).
Headed home for the last appointment of the day. It was a virtual appt with the Neuropshycologist. While waiting for the visit I received a call about Henrys blood test results. They want us to keep him off of the chemotherapy until Friday so they can recheck his bloodwork. Henrys counts today were down again to 25,000. Let me mind you a normal toddler should be in the range of 150,000 to 300,000. If that gives you any idea... no platelet transfusion needed as of yet.
Ok, now on to the virtual visit, it was basically just to get to know Henry, get some questions answered that she had, and if there were any concerns I may have had for him. Although this was an easy one, I still felt the weight of all of those appointments... it was a busy day!
So that was my day in a pinch...
Welcome to September: Childhood cancer awareness month!
Saturday, August 29th, before cousin Sophia's birthday party I noticed some peticheae on Henry. I called oncology to find out what needed to happen. This was about 11:30 and have to leave a message for them to page the doctor that is on call. So I look up what time the lab closes. The internet tells me noon... (crap, I gotta get him there, do they still have a standing order for bloodwork?) I call them and it seems as so they still do. Run him in fast without hearing back from the doctor. Get there at 11:55. Check in: 3 people behind me and another in front of me that takes longer than the 5 mins... the lab person leaves, but... they have staff on stand by to come and draw when they need it.
Luckily He was able to get his blood drawn.
The doctor calls during the party which I miss (of course...) so I call back to page them. Missed the call again!... ( gaahhh I am so pissed at myself! I could have cried at this point...) but the doctor calls Randy and he tells him that Henry's platelet count dropped from the 90,000 it was at the last visit, to about 30,000... Thats quite a drop in a week. So he told us to withhold the chemotherapy until we can recheck on Tuesday.
Fast forward to today Tuesday, September 1:
Wake up at 5:45 a.m. leave here about 6:15 a.m. for our first appointment of the 5 appointment day... both exhausted because someone(Henry) did not want to go to bed when he was supposed to...
First appointment was the ophthalmologist. This was a good appointment, she noticed that the patching (6-6 hours a day) we have been doing is helping. His right eye is showing a small amount of improvement! So now we are going to wean him off of the patching over months but eventually get him off from them. Yay!! We noticed over the last few weeks that the nose piece of his glasses was coming apart... brought them to the store portion to see what could be done. She stated that they are no longer in the warranty, and no longer make them like that, also didn't have any replacement part on hand... so, replacing them was the best thing... as she was saying this, I was thinking in my head, "super glue it is" and Henry was saying, "I want the red ones put me down, please, please, please!" Well, I guess he is ready to move on let's try it...
Second appointment was the ENT, also another good one. The Debrox we put into Henry's ears cleared the canal! We did the hearing test on him there. Which Henry did fantastic, he just sat in a sound proof booth all by himself and responded very well. Even the high frequencies! So his hearing checks out well!!
The third appointment is the blood draw. I honestly think that this is the best he has ever done for a blood draw... very minimal complaints and sat super still for the ladies!! Now just the wait for the phone call about results...
The fourth appointment was a neurosurgery recheck. This was also another great appointment. Dr. Madura went over the last few MRI's and stated that he has nothing but good news there... (wonderful, now let's keep it that way, right!!???) Henry is a subject that Madura likes to talk about in some of his talks with other clients or board meetings. I brought up that we found out results from Canada, he was not aware of the testing we had done and researched what I talked about right there in the appointment! He was very excited to find this information and read upon it (What a great person for wanting to know more about this kind of tumor).
Headed home for the last appointment of the day. It was a virtual appt with the Neuropshycologist. While waiting for the visit I received a call about Henrys blood test results. They want us to keep him off of the chemotherapy until Friday so they can recheck his bloodwork. Henrys counts today were down again to 25,000. Let me mind you a normal toddler should be in the range of 150,000 to 300,000. If that gives you any idea... no platelet transfusion needed as of yet.
Ok, now on to the virtual visit, it was basically just to get to know Henry, get some questions answered that she had, and if there were any concerns I may have had for him. Although this was an easy one, I still felt the weight of all of those appointments... it was a busy day!
So that was my day in a pinch...
Welcome to September: Childhood cancer awareness month!
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