Week 6

Seth has been neutropenic since St. Patrick’s Day.   

On Saturday morning he received platelets again and when Dr. Chi came on rounds we discussed pain management and just keeping him comfortable while we wait for his counts to come back up with morphine every two hours.  Sunday he seemed to be really uncomfortable so we discussed a PCA for morphine to keep him comfortable.  He did spike a fever later on and was started on antibiotics as well as having the PCA set up. 

 

Monday was the official start of week 6 in the course of treatment.  Dr. Wright was fortunately on in patient rounds this week.  She immediately noticed how awful his mouth looked with the mucositis, sluffing, and his tongue was all torn up.  He received his Vincristine later that afternoon but we mainly focused on keeping him comfortable and lots of cuddling.   Tuesday his ANC was still zero, he received platelets in the morning and was scheduled for another kidney test.  They did the dye injection in the late morning and later had the needed blood draws.  Unfortunately, he spiked a fever and cultures were drawn to make sure he didn’t have an infection.  He also got really sick vomiting and unfortunately his feeding tube came out in the process.  We had been keeping him on a continuous slow feed over the past day or so and had worked our way to 40ml and hour.  I’m not sure if it was the feed or the mucositis that made Seth sick but either way it’s so hard to see him that way. 

 

Wednesday Seth was scheduled for an MRI.  We weren’t sure if this MRI would happen because he did have one after the last course of treatment but it was necessary to see if radiation was going to be a part of his treatment.  I also wasn’t confident they would take him for the MRI because he spiked a fever yesterday but fortunately they did.  Dr. Wright came by to discuss the results after and I was so happy to hear that the tumor on his eye is now barely noticeable and the big tumor shrunk almost another half a centimeter.  With all the pain I’ve seen Seth going through this week it was nice to have some good news.  I also saw the images from the first MRI to now and it’s amazing to see the progress Seth has made so far.  He still has a very long road ahead with this protocol but seeing results makes it slightly easier.  Because the tumors seem to be reactive to the chemo he’s been receiving we will not being doing radiation at this time.  We knew that was most likely the case due to his age.  Dr. Wright did mention she can see his fluid collection in the MRI, and because it keeps coming back, we need to keep an eye on it and she reached to his surgeon, Dr. Goumnerova, to see her thoughts on it. 

While Dr. Wright was wrapping up Seth’s nurse brought in his blood transfusion nicely concealed in a sheet for me to hang on his IV pole.  We made it sitting in the chair for three hours without knocking it off and without me fainting J

 

Seth continues to have low ANC numbers below 100 but we're hoping they work their way up this week so he can have his next stem cell collection.  Thursday Seth had a repeat hearing test and luckily he was able to do this while sleeping on my lap.  I was happy to hear that there have been no changes in his hearing and he remains at the same place he was before starting treatment.  I’m sure we’ll have many more hearing tests in the future but we take all the wins we can as they come!!!  Thursday night Steve and I switched places so we can both spend some time with both kids.   

 

Saturday we had some family time. Sadie was so happy to go visit brother at the doctors and more importantly to get pizza and cookies for lunch.  While snuggling Seth got his feeding tube out, one wipe of the nose on my shoulder and it didn’t stand a chance!!  He’s a determined little guy but I was a little happy Sadie could play with him without having to worry about one tube.   It’s always great to see the kids together and Sadie lights up when she gets to see Seth.

 

Steve and I have been discussing the idea of a G tube rather than an NG tube like he’s had and we’ve been able to schedule that for April 3^rd along with the placement of the long awaited ommaya reservoir for his intrathecal chemotherapy.  The GI nurse came to show me how it works on a doll earlier in the week and general surgery came as well to answer any questions beforehand.  He will be admitted after these procedures and begin his next round of treatment.  We are looking forward to Seth having both his face and arms/hands back for playing.

Now we wait for his ANC numbers to come up and recover enough to have his next stem cell collection.  We are hoping it will just have to be one day but there is the possibility of it being two.  Once that’s complete we are hoping to have at least a few days together at home before Seth is admitted again on April 3^rd.