Evan's week after chemo was fairly good. He had a recurring problem with vomiting almost daily, but it wasn't enough to stop him for long. I spoke to the doctor about it and was told that this sort of problem could last quite awhile for Evan because of the radiation plus chemo he just finished. Apparently, it can have a lingering effect on the tummy. The doctor suggested giving Evan small portions to eat and seeing if there is a pattern as to when it happens so that maybe antinausea meds could be given in anticipation of his bad times.
Ultimately, Evan finished chemo on Saturday, Aug. 29th and was readmitted on Sunday, Sept. 6th with fever. We felt lucky that he stayed out of the hospital for a whole week. We knew that wouldn't last of course. Today is the 12th of Sept. and he still has no ANC. For those who need an info update, the ANC is a calculation of certain blood counts that indicate one's immune system function. Evan's is currently 0 and it needs to reach 250 for him to be discharged from the hospital. The good news is he is feeling pretty good a lot of the time, even climbing around the hospital room and running around evading his new remote control fire truck that Daddy bought for him. It turns out that the fever was due to a gram postive line infection. He has been on antibiotics since he was admitted to the hospital and has been without a fever for 4 days. The not so good news is he threw up again tonight, still has no ANC and is saying that he can't wait to go home.
So far he has had one blood and two platelet transfusions since finishing this round of chemo. The doctors expected that he would need another platelet transfusion today, but his platelets actually increased ever so slightly from yesterday. So, maybe this is an indication that his bone marrow is kickin' in and ready to produce the good stuff in the immediate future. We sure hope so.
Thank you for your help, kind words and friendship. All are invaluable!!!
3 years ago yesterday, Evan was diagnosed. And today, he is in the same hospital where he was diagnosed. It has been 14 days since Evan was admitted to the hospital for neutropenic fever. Last night he popped his 3rd fever. He has been on antibiotics the whole time he has been in the hospital but when he gets another fever, they add another antibiotic.
We think that he has reached what the docs at Sloan call somilence (no idea on the spelling). They said due to the cranal/spinal radiation, he would experience extreme fatigue about 4-6 weeks after radiation. That is where we are and that is what he is doing. He sleeps most of the day and night lately. His has little appetite although in the past couple of days it has gotten a bit better.
What will spring him from the hospital is an ANC of 250 and no fever for 24 hours. For days and days his ANC was 0. Earlier this week it was 3, then went back to 0. He was at 10 for a couple of days and then hit 40 yesterday. Today he is at 100. So finally we are seeing good steady improvement. The docs are quick to note that it could go down again so we are cautiously optimistic. I am at home this Sunday morning, but I will pack for another week at the hospital because there are no guarantees, only hope and the continual push for postive thinking.
When Evan popped his fever last Monday, the doctors had him get a CT on his sinus and lungs to make sure he didn't have a fungal infection which is not uncommon in people with prolonged neutropenia. Fortunately, the scans were negative. Evan has had one more blood transfusion and 2 platelet transfusions over the past week. He will be monitored closely as we move forward and continue to get the transfusions he needs.
We are so looking forward to having Evan at home. This has been a tough, emotionally draining hospital stay. Up next, we travel to NY for scans at the end of September. We will try to focus on being at home, getting Evan to eat and having as much fun as possible. I hope I am updating again soon to share the good news that he is out of the hospital.
Evan is at home!!! PHEEEEEWWWWW! His ANC was where it needed to be for 3 days before he was released but he kept popping fevers. The last night that he was in the hospital, he had another fever but it was a low, low-grade so they decided to let him go the next day. That was Thursday. The grand total of inpatient time was 18 days. Ugh. So glad that is over.
Since he has been home, he stays awake for longer periods than when he was in the hospital but he is still pretty tired and naps a couple of times a day. He is eating a little better but his appetite is not back yet. His stomach bothers him so he is on a couple of tummy meds. He is a bit weak and feels like he is going to fall when he walks around. But he is walking around more and more and he even went down the stairs on his own today.
This week we will be at Sloan. Evan will get scans and have his CSF flow study in preparation for the 8H9 therapy. His blood counts have to be at certain levels in order to start 8H9. We will have to talk with Sloan about how much time Evan can be allowed to wait until his counts are within protocol limits. It will be an educational week as he gets scanned, we wait for scan results, he gets his CSF flow study and we find out all about the 8H9 therapy. Please keep Evan in your prayers.
With hope,
Wendy
P.S. Sorry about the lack of new photos. Haven't been snapping too many lately. I'll try to do something about that.
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