In my defense it has been a very trying month. Round 3 of chemo really kicked Jamison's butt. To top it off, he got a cold, Cole got a cold, then he got a double ear infection, and then Cole got an ear infection. Needless to say Jeff and I have been surviving on little sleep and as much caffeine as allowed (for me that's not much since Jamison's still nursing).
The good news from Jamison's last EUA, which was on the 12th, he has regained his central vision in his right eye. We also learned that the tumor in his right eye is unusual, (of course!) in that it's a cavitary tumor. It basically means it's slower to respond to the chemo because it's less aggressive. It is responding, though. The left eye had some changes, neither shrunk, but they are both still responding well to chemo. Round 4 is right around the corner.
This time we also had some other small issues with Jamison. He decided to throw a tantrum and bang his head against the baby gate. This resulted in a pea-sized bump and immediate bruising, instead of the normal red mark which later turns into a bruise. I called the hemonc clinic and since it was almost 4:30 and they close at 4:30, they told me to take him to the ER. So off we headed to the Children's ER. The ER doctors acted like we were idiots, said kids are going to bump their heads, refused to do the ordered CBC and "observed" him for an hour, which meant we were stuck in a room with no windows and a very dirty floor while they tended to other patients until we asked if we could leave since they weren't going to do anything. The next morning, Jamison had a lab appointment for a CBC. I took him and Cole up there and their Great Aunt Debbie met us as usual (which is such a huge help, I can't thank them enough). His lab results were less than stellar and he needed a platelet transfusion, they were only at 13K, he had been having spontaneous bleeding (nose bleeds) and was bruising very easily. Their Great Uncle Johnny brought us some lunch and we hung out at the clinic for 5 1/2 hours. Cole was very good and I had to drag him from the play room even after 5 1/2 hours. Jamison has another lab appointment on Monday. His hemoglobin was only 8.2, so they want to see what it is Monday and see if needs a blood transfusion as well.
What else...oh, we had to drive to Philly this time. Our flight was cancelled due to the snow and we made the drive. What a long drive and long week. Jamison traveled well. We had to stop in Maryland on the way up because of the snow and Jamison was getting cranky. We woke up at 3am to hit the road to make our 7am appointment for Jamison's EUA. The roads had been cleared and the snow had stopped so our 5 hour hotel stop was a good thing. Jamison got sick on the way home, at one point we had to stop on the side of the road in Washington, DC to change him because he vomited all over. We stopped just inside NC for the night since he was getting fussy and then made the rest of the trip on Saturday.
Cole is showing some signs of stress and separation anxiety so after talking to his ped I made an appointment with a Play Therapist. I take him next week and hopefully he'll be able to work some issues out. He has been waking up sobbing at night, crying, "I want my Mommy, I want my Daddy." He's also been very clingy during the day wanting non-stop attention and getting jealous when we hold Jamison. I'm definitely not looking forward to leaving him again.
So our month can pretty much be summed up with a long, miserable car ride, lots of crying, lots of doctors and lots of sitting in the chair snuggling.
As for some good news, a group had some vouchers for airline tickets and couldn't use them before the date they had to be used by. They contacted the social worker her and she called us. They purchased our tickets for Feb. That was definitely wonderful news. :) The boys seem to finally be on the mend and while I have a little cold now, I'm sure I can tough it out.
Friday, January 28, 2011
Sunday, January 9, 2011
Saturday, January 8, 2011
It's been a while
We're getting prepared to head to Philly again. We leave on Tuesday, so hopefully the storm will be a bit more mild than they are predicting and we will have no issues with flying. Jamison has been exceptionally cranky this month, Cole as well. They had ear infections and a nasty cold after we got back from his second treatment and neither has slept well since.
It could also be from the excitement of Christmas, which they had a wonderful Christmas. We are blessed by everyone who has cared for them and those who sent gifts. Cole enjoyed opening every single present under the tree and Jamison was content to sit on them and play with them after Cole opened them. They made a good team for Christmas morning. :) It was a quiet Christmas for us, no traveling, family visiting on different days, definitely not what we're used to. But we don't want to travel right now since we have to travel once a month.
Jamison's blood work this month was nerve-wracking again with his platelets. They bottomed out at 22K, but a transplant won't happen unless he's symptomatic or below 20K. They rebounded nicely to about 300K last week, but the week when they're low I have to keep an eye on him and make sure he doesn't hit his head as he's at risk for brain bleeds.
I took Cole to the ophthalmologist who diagnosed Jamison last Wednesday. We are happy to report that his eyes are CLEAR, no sign of cancer for him. :) While it would have been extremely unlikely for him to have RB, we still wanted to get him checked out to be on the safe side. Dr. Cheeseman wants to see him back in 6 months for another check and then he won't have to go back. It was a huge relief, but I was so nervous because I don't know how I would have handled it.
I took Jamison for his physical which he has to have every month before he goes under and I received a copy of a letter that Dr. Cheeseman had mentioned at Cole's appointment. We're a little annoyed that they didn't tell us this, and that will be brought up to Dr. Shields and her staff on Wednesday. Jamison's good eye, his right eye, has a cavitary tumor. It's less malignant and less aggressive, which is good, however, it's also less responsive to chemo. It might not shrink as we would have hoped and it's an unusual type of tumor. It is also less likely to come back, so it's a good and bad thing. Jamison seems to see fine out of his right eye, so hopefully that will remain and we won't have to worry about it.
Anyway, we hope everyone had a wonderful Christmas and New Years. We will update if there is time in Philly, but honestly we're so busy up there, it might not be until we return home. Please pray for excellent news!
It could also be from the excitement of Christmas, which they had a wonderful Christmas. We are blessed by everyone who has cared for them and those who sent gifts. Cole enjoyed opening every single present under the tree and Jamison was content to sit on them and play with them after Cole opened them. They made a good team for Christmas morning. :) It was a quiet Christmas for us, no traveling, family visiting on different days, definitely not what we're used to. But we don't want to travel right now since we have to travel once a month.
Jamison's blood work this month was nerve-wracking again with his platelets. They bottomed out at 22K, but a transplant won't happen unless he's symptomatic or below 20K. They rebounded nicely to about 300K last week, but the week when they're low I have to keep an eye on him and make sure he doesn't hit his head as he's at risk for brain bleeds.
I took Cole to the ophthalmologist who diagnosed Jamison last Wednesday. We are happy to report that his eyes are CLEAR, no sign of cancer for him. :) While it would have been extremely unlikely for him to have RB, we still wanted to get him checked out to be on the safe side. Dr. Cheeseman wants to see him back in 6 months for another check and then he won't have to go back. It was a huge relief, but I was so nervous because I don't know how I would have handled it.
I took Jamison for his physical which he has to have every month before he goes under and I received a copy of a letter that Dr. Cheeseman had mentioned at Cole's appointment. We're a little annoyed that they didn't tell us this, and that will be brought up to Dr. Shields and her staff on Wednesday. Jamison's good eye, his right eye, has a cavitary tumor. It's less malignant and less aggressive, which is good, however, it's also less responsive to chemo. It might not shrink as we would have hoped and it's an unusual type of tumor. It is also less likely to come back, so it's a good and bad thing. Jamison seems to see fine out of his right eye, so hopefully that will remain and we won't have to worry about it.
Anyway, we hope everyone had a wonderful Christmas and New Years. We will update if there is time in Philly, but honestly we're so busy up there, it might not be until we return home. Please pray for excellent news!
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