Since Taylor had to miss week 4 of chemo last round, and we already had our MAW trip scheduled, she had a 3 wks off time instead of 2 week. it was so nice not having to worry about doctors for her for a while. Oh, yeah she lost her NG tube the Fri we left Florida and missed all the feedings until getting back to clinic the next Wed.
Last Wed she went for Chemo 1, and her counts were like 1400 so all was good. Her weight was down a pound though, and they were not happy with that. They want us to try better on getting all her full feedings. She got chemo for the day, had a nice day and then that night started getting fever, which got up to 100.9 and then after an hour to an hour and a half went down on its own. So, we never called it in. She had low fever the next day, and after that all was good. She was playing and acting fine. All weekend she was good, we even made it to church.
Then, Tues she woke up with a fever of 101.3 and we had to head up to the clinic. I was bummed because we already had an eye appt later that afternoon and did not want to spend the whole day at the hospital. We were able to get someone to watch the kids for us part of the day so that helped my hubby and I out a lot so that we were less stressed and able to get more work done. Her counts were around 1500 so that was good. One of her mosquito bites is really swollen and red and tender to where she is fussing and doesn't want to walk on her leg. They think she may have cellulitis in it. So they gave us some antibiotics for that and marked its size. They gave her some antibiotic in her port for the fever and then we were done just in time to make it to the eye appt.
The eye doc says things look good. There is less bulging and better tracking of the eye. They are not sure if the vision is better, same, or worse. They can see damage on the nerve from the tumor. She does not need glasses, but may in the near future need some patching done to strengthen the weak eye. So all in all, a good report.
That night her fever got up to 102.7, she was not able to take med for the cellulitis that night. It was too big a pill and mixing it in applesauce made her throwup. The next morning she was sitting on the couch after waking and she threw up again, all over herself (losing her NG tube again)... We went to her chemo appt and she was still fever at 101.8, they got her counts and she was up to 2400. So that was amazing. They said she did have a virus of some sort though which explains the fever. The cellulitis was different today, the swelling and pain were pretty much gone, but the redness covered a larger area of the leg. So there was debate on if it was getting better or worse. They wanted to make sure she got the antibiotic to treat this thing though because if it gets an infection in the blood it can be very dangerous. They wanted us to be admitted but since it is easier for us right now and it is workable, they are letting us go home with the meds and come back the next day for follow up. They went ahead and started her on chemo and ordered her a liquid version for us to try to put down her feeding tube. However, the insurance was down and they could not get approval while we were there. Finally, the clinic just ordered an inpatient dose for her to take. But instead of the liquid they came in with a pill dissolved in some apple juice. They put that, along with some pepcid, down her fresh NG tube and made us wait 30 min to make sure she would handle it ok and not throw it up. All went well and we were finally able to walk out of there by like 2pm. They wanted us to come back the next day just to check on the leg and fever. They didn't think they would need to draw labs or anything, it should not be a big visit.
They said to call if fever spikes again, and around 4pm, she was up to 103.3!!! OMG, this thing will not go away! I messaged them and 30 min later no response. I needed to know if I could give her any meds for the fever since it had been over 24 hrs since the rosefrin on Tues. So I called and had them paged. 30 min later, still nothing... so I went ahead and treated the fever... the poor girl was hot and that was high. About 15 min later I got a call. They said it was fine to give tylenol. Then I realized I had given motrin instead and that we were not supposed to do that... i started freaking out a bit. The nurse on the phone said it was fine just don't do it again and that it wasn't a big deal. I never have to treat the fever at home and I had totally forgotten the rules in the midst of my stressball of a life, I felt horrible. (Also, need to mention that this whole week my hubby has been battling a horrible knee pain. It is pretty crippling at times and has kept him off his feet a lot. Not sure when he will be able to go have that looked at. He prolly needs an MRI to figure out what the problem is. During our MAW trip it was his elbow that was acting like this and he could barely move the thing for a few days)
That night was horrible... T kept waking up and complaining about her stomach A LOT. I finally had to just shut off the feed. It got better after that. Then hubby was snoring was too much so I had to leave the room and I took Taylor with me to the living room couches. She was up a lot the rest of the night, talking weird in her sleep and such. It was strange, she has never done this much before. She got fever back up to 102.7 and I treated with tylenol. We didn't get a whole lot of sleep. She woke up and felt ok to the touch. I got everyone up and ready for the day. Then Taylor and I were off to the appt. When we got there and I was carrying her in, she felt warm again. I knew the fever was back. They took her vitals and she was 100.9 but she was still looking ok. We got a room and the docs didn't like that she had to miss her feed and want to know why she keeps having problems. So do we, lol. Right now we don't know if it is the chemo, the virus, the cellulitis, or any of the meds she is taking, lol. They started her on fluids and took her labs. Then she had a case of diarrhea, and I didn't have a change of clothes or anything since we were not planning on a long trip this day.. fun times.
Her counts came back and all of a sudden they are down to 760! That is a huge drop in 24hrs. They don't like that at all, the nurse comes in and says Houston we have a problem. It was very unexpected and now Taylor will have to be admitted. The doc wants to try a diff stronger med for the cellulitis to really make sure it is getting better. The fact that the redness has gone down is not enough proof, because the WBC cause the redness, showing the body is fighting infection. Since her counts are now low, it may be less red because there are not enough WBC fighting. What a crazy case of sick Taylor has going on all at the same time. They started her on the mew antibiotics and I called the hubs to let him know to get packed up so we could switch places for tonight. Right before he and the kids made it up to the hospital, Taylor started coughing a lot more, then her head started turning bright red, half her face too. Her eye started watering and she didn't look very well. Her skin on her arms sort of looked a little yellow too. I was freaking a bit. The nurse didn't like it and shut off the med and went and got the doc and some benadryl. The doc came in and said it was a typical side affect and that next time they will give benadryl before hand. Then, the family was there and it was time for me to go. It was so hard to leave right in the middle of this reaction and her looking all sick. I didn't want to leave. I cried off and on the whole drive home. We got home and we did a eat what you can find night and the kids were pretty good and here I am now updating away. Taylor seems to be doing better and vitals are good, they are finally admitted in a room now. They will take labs again in the wee hours of the morning. Not sure how long she will have to be there.
Thursday 18 July 2013
Make A Wish
The Make A Wish team had a party to announce Taylor's wish on Tues June 18. It was held at our local chick-fil-a and it was so fun. We had some friends join us, everyone got a free meal and it also happened to be the cows bday party at the same time. So the place was very festive. MAW made her a Dora beach cake, she loved it so much. They explained our trip to us and we were blown away at all that was included and the kids were very excited.
Then, the next day was 4th dose of chemo for this round. Her counts were too low, 300, to get chemo but she did not have fever. Then Fri we ended up having to go to clinic due to fever that morning and. It too forever to get her counts because they had to hand count them and there was only one person on staff in the lab for that this day. The nurse came and said she had to be admitted due to low counts. We got a room and still didnt really have a full count on the WBC but she was having fever and the quick count was low. Turns out the count was 330. She did well in the hospital, and that night my hubby came up with some Sushi and we had a lil date night watching a movie in the room there. Then he stayed and I went home w the other kids and my sister. Taylors counts were getting really low, 170, and not going back up, so she had to stay there through Mon morning when she was back to 300 and no fever. That was a loooong stay and we were so happy to finally get her home. It is hard to be away from your spouse for a few days, especially during a time when it is stressful having a sick kid. It was so hard to not be with her the whole time too but we were so lucky to once again have a family member visiting during a hospital admittance to help out.
Over the next week she got better, she had gotten back up to 1070 by Wed, so we were all cleared to go on our MAW trip that Fri!
The whole trip went great! Taylor did not get sick at all, no fever, no feeling bad, or anything. It was such a blessing to be able to go and have a week of fun with the kids and not have her get sick. We of course went to Orlando. We were picked up in a limo. We stayed at Give Kids the World. That place is really neat! We recommend it for a kid's wish trip! We did all the Disney parks, the beach, and Lego Land. We got rained on a whole lot the first 2 days but the rest of the time was pretty good weather. We got to meet Dora, Jake the pirate, Phineas and Ferb, Princesses, Mickey, Pluto, Marry Poppins... and we saw the marvel superheroes but we just missed doing a meet and greet with them. The kids really enjoyed the trip. It was crazy and stressful from time to time, but it was a great experience and memory for all.
Then, the next day was 4th dose of chemo for this round. Her counts were too low, 300, to get chemo but she did not have fever. Then Fri we ended up having to go to clinic due to fever that morning and. It too forever to get her counts because they had to hand count them and there was only one person on staff in the lab for that this day. The nurse came and said she had to be admitted due to low counts. We got a room and still didnt really have a full count on the WBC but she was having fever and the quick count was low. Turns out the count was 330. She did well in the hospital, and that night my hubby came up with some Sushi and we had a lil date night watching a movie in the room there. Then he stayed and I went home w the other kids and my sister. Taylors counts were getting really low, 170, and not going back up, so she had to stay there through Mon morning when she was back to 300 and no fever. That was a loooong stay and we were so happy to finally get her home. It is hard to be away from your spouse for a few days, especially during a time when it is stressful having a sick kid. It was so hard to not be with her the whole time too but we were so lucky to once again have a family member visiting during a hospital admittance to help out.
Over the next week she got better, she had gotten back up to 1070 by Wed, so we were all cleared to go on our MAW trip that Fri!
The whole trip went great! Taylor did not get sick at all, no fever, no feeling bad, or anything. It was such a blessing to be able to go and have a week of fun with the kids and not have her get sick. We of course went to Orlando. We were picked up in a limo. We stayed at Give Kids the World. That place is really neat! We recommend it for a kid's wish trip! We did all the Disney parks, the beach, and Lego Land. We got rained on a whole lot the first 2 days but the rest of the time was pretty good weather. We got to meet Dora, Jake the pirate, Phineas and Ferb, Princesses, Mickey, Pluto, Marry Poppins... and we saw the marvel superheroes but we just missed doing a meet and greet with them. The kids really enjoyed the trip. It was crazy and stressful from time to time, but it was a great experience and memory for all.
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