Since the last time I posted we have been through the ringer and back. Nathen started his next round of chemo and about 3 days into the 5 day cycle he started running fevers. They started on December the 10th and was what they consider here a low grade fever(100.6) I was able to convince them to let us go back to the Ronald McDonald house with the pretense that If he spiked again we would bring him right in to Urgent Care.Wouldnt you know it at around 430 AM I woke up to Nathen heaving and getting sick on his stomache. I touched him and he felt like he just came out of the oven. I took him temp and it was a whopping 105.8. I was so scared and he was looking so bad. I called the Dr on call and told him I was bringing Nathen in and that he didnt look so good.We ended up being in urgent care half the day waiting for a bed in the day hospital.Then we waited there til late that afternoon for a bed in the inpatient area. Well long story short we ended up in the hospital for exactly a month and still had no explanation for the fevers. He was running a fever every day while we were there and the DR's finally said well we have NO CLUE and you can do the same stuff at the Ronald that we are doing here so we are going to let you go back there. I was thinking why could you not of thought of this a week earlier so That Nathen and I could have spent the holidays with his brother,sister and great grandma. But the good part is the whole time we were inpatient we had a private room so the kids were able to come up there every day to visit and spend the whole day with us. I want to also Thank a very very thoughtful,generous, and large hearted family for donating thier flyer miles so that my other two kids and grandma could be here for the holiday with us. THANK YOU SO MUCH to the Cole family. Your kindness has filled my heart more than I can say. It was the greatest gift to have all of my kids with me for the holidays. I miss Nicole and Zach more and more each day. It depresses me to know that they are growing and learning and I am not there to see and to show them how proud I am of them.Hopefully we will be at a point in our treatment soon that we can go back home and just come here for short stays and be home with our family more and more. So now back to Nathen and his fevers.....he is still running them but not so often. His counts are stuggling to come up even after he had gotten his stem cell rescue. He does not seem to be making platelets and has needed platelets quite a bit. Dr. Kramer said that Nathen can not do the intathecal treatments( into the port on his head that has a tube that goes into his spinal fluid) since his counts are not holdin their own. He needs to be making his own platelets to be able to be on this study so in the meantime they want to put him back on the 3f8 study to keep him getting some sort of treatment. It has been over a month since we have had any kind of treatment so I am welcoming anything to help keep the BEAST from growing back again. I am still worried however that the tumors will return into his brain since the treatments he will be getting do not treat this area, hence the reason for the intrathecal treatments. We have had our scans and bone marrow test done and the Dr's say they look fine however I am questioning the results myself since his MRI of the spine shows two areas that are showing up that they had not mentioned previously. It says there is a spot on the T9 Vertibre and also a place in the lower sacrum area( the lower back around the lumbar area) and also Nathen is struggling with walking and has been having alot of pain, a pain that is very similar to a good friend of ours daughter that had very similar results a month ago on her MRI and now they have been told that they are running out of things they can do to help, so as you can imagine that makes me even more nervous. But I keep praying and I know alot of people are praying with us, to keep the beast at bay, And I am praying that Our little friend Maddi will have GREAT SUCCESS in her treatments in Vermont. We will be starting Nathen's injections this coming Wed. and will start the 3f8 injections the following monday. After we finish this round we hope hos counts will be high enough to continue on with the intrathecal treatments. Please pray for my little man and also for our little Maddi to beat this monster and live a long healthy life.
Thanks to everyone,
Amanda
