Jacob had his first Avastin infusion nine days ago. I’m just now getting around to writing this blog post because last week was also the kids’ Spring Break. After Jacob's infusion in Gainesville, we made our way south to St. Pete. It was a wonderful week. We went to the beach twice, visited the Lowery Park Zoo in Tampa, took in a Rays Spring Training game in Port Charlotte, shopped the outlet mall in Ellenton and were able to spend time with TD's family. Jacob went on a very successful fishing trip with the big boys, too. It was a great week for new and special memories!
March 21, 2011
Getting ready Sunday night I realized that preparing to go to Shands is getting a little easier. I’ve gotten better at knowing what to pack for Gavin and after all these years I’ve learned that no matter how long your nurses and doctors tell you your appointment is going to be, you can add a few hours and that is most likely what you will get. For this reason I took TD's dad, Mr. Dana, up on his offer to come up from St. Pete and drive us to Gainesville to help with Gavin for the day. I have a hard time accepting help, but in trying to be less selfish, I wanted to do what was best for everyone. Gavin and Brie love their Pop Pop and I was able to give all of my attention to Jacob. We were all up at 6:15 and out of the house an hour later. Listening to my iPod podcast, Pastor Bob, on the way to Gainesville is becoming a tradition. I was lucky enough to witness another beautiful sunrise on I-10, hoping again it was God showing me the way. Jacob slept in the front seat, mouth open, head bobbing as usual and Brie slept in the very back seat and had been very grumpy before going to sleep. Gavin spent the first hour asking, "Where we going?" and finally fell asleep around 8:15...thank goodness. We arrived at 9:30 with plenty of time to get Gavin and everyone awake and ready. We were in the Shands Hospital Pediatric Hematology & Oncology waiting room (long name, tiny room) several minutes before 10:00. Gavin was happy because Disney's Handy Manny was on the TV and he was having his breakfast. They took Jacob right back to be weighed and measured and then right to the infusion lab. Jacob was a little over 5'7 tall! All of our family was invited to stay with Jacob in the infusion lab, but, there being five of us, we didn't want to cause too much commotion. Mr. Dana took Brie and Gavin for a walk and Jacob was told to pick a chair he wanted to sit in. Jacob picked a nice chair in front of one of the only windows in the middle of the lab. Since this was Jacob's first time he was very anxious and wondering what was going to happen. He was worried about how he was going to feel. I explained Jacob's concerns to the nurse and she had another person come and talk to Jacob. I'm pretty sure they called her a Life Coach. I don't remember her name, but she was very pretty and had a sweet voice. She explained to Jacob how his port would be accessed and how the medicine would be given and went through the procedures with him. At this point Jacob had had the prescription lidocaine and Prilocaine cream over his port for over an hour. She said Jacob probably wouldn't feel much at all. It didn't matter what anyone said to Jacob, he was still worried about having the port accessed (and rightfully so, I cant even imagine what he thinks about all of this!). Watching Jacob trembling, I wondered how he must feel starting his 2011 Spring Break out in an infusion lab surrounded by a dozen kids all fighting for their lives. We waited a few minutes and the Life Coach returned with a book of PS3 games for Jacob to choose from. Hillary, Dr. Smith's ARNP came in and talked to Jacob and answered my questions. She informed me that they would be taking blood from Jacob, but we wouldn't have to wait this trip for the results. Before receiving the Avastin at future appointments, Jacob will have blood drawn (from his port) upon arrival and will have to wait for the results. It can take several hours, but they have to check his white blood count before giving the medicine. Jacob will also have to have a UA to check for protein in his urine. I believe this tells them how his liver is handling the drug. Hillary gave me a long list of side effects to read and she went over the most common they see in patients. The sheet I had to sign listed fatigue, headache, abdominal pain, duodenal fistula, nausea, nose bleeds and impaired wound healing. I was concerned about duodenal fistula because I had never heard of it nor did I know what it was. Hillary explained to me that the intestines and organs can stick to the outter walls of the inner body. If Jacob experiences any abdominal pain they will do an ultrasound to rule this out. She said one of their other NF2 patients has had nausea and pain with the Avastin and they did the u/s and her insides were fine. They are giving her medicine for the nausea and pain. Jacob can ask for nausea medicine (Zofran) during his treatments if he feels sick. We were told that most side effects don't occur until the second or third treatment. I am to keep a journal of any side effects Jacob has to report to them when we return and she gave me their direct lines to call if there are more serious issues. At 10:30 the nurse came to access Jacob's port. She asked us how long his lidocaine had been on and removed the Press and Seal wrap covering it (we teased Jacob a little about being covered in plastic wrap… good times!). As she cleaned the site Jacob and I were both holding our breath. She then proceeds to ask me what size needle did Jacob's port take. Really? Was I supposed to know this? She felt around and decided a 3/4 needle would be best. I held Jacob's hand and encouraged him not to look. He didn't look. And he didn't feel a thing! That was a great moment for both of us. Jacob had blood drawn painlessly for the first time in his life and he wasn't going to have to experience any pain getting an IV for medicine. Jacob's nurse started the Avastin drip at 11:48 am. This appointment they administered the medicine over a ninety minute period. The next treatment will be administered over an hour and if Jacob tolerates it well they will continue adjusting it down to a forty-five minute period for the rest of his infusions. The amount of Avastin is given at 5 ml per kl of weight… in case you were wondering. Jacob said he didn't feel the saline flush or the start of the medicine. He was too busy playing Ballers Basketball game on the PS3. Later, when the little boy next to him was done, Jacob played a WWE game. Mr. Dana brought Jacob a double baconator cheeseburger and french fries. He ate while getting his infusion! Little things like not having to make Jacob fast before infusions are going to make this next year so much better than the alternative. Everyone in the lab had lunch. They had several pizzas brought in and offered slices to everyone there. Brie and Gavin ate with us and the time seemed to passed fairly fast. The machine that Jacob's Avastin bag hung on went off at 1:15. The nurse then hung a bag of saline to ensure all of the Avastin in the line was pushed through. Jacob was done around 2:00. He did not like the way it felt when the nurse removed the needle accessing the port. It seemed quick to me and she looked like she was being gentle, but Jacob said it hurt. We will ask next time for her to hold the port down at the same time she pulls the needle out. Jacob was done and we were on our way to enjoy our week in St. Pete. During the ride down I reflected on the day… I wondered how many children had been in the infusion lab this week. I looked up statistics when I got home and found that in the United States in 2007, approximately 10,400 children under age 15 were diagnosed with cancer and about 1,545 children will die from the disease. Cancer is the leading cause of death by disease among U.S. children ages 1 to 14 years and cancer is still relatively rare in this age group. On average, 1 to 2 children develop the disease each year for every 10,000 children in the US. This is just kids with cancer. This doesn't count Tuberous Sclerosis or NF2 or any of the other many horrible things children suffer from. It's so heartbreaking. It is also heartbreaking that I almost felt comfortable in the infusion lab. I wasn't uncomfortable and I wasn't scared. Both very strong feelings I have suffered in the past. Jacob and I had been in the infusion lab at the medical plaza many times in the past to have his IVs placed for MRI contrast. The infusion lab nurses are a lot better at getting IVs in little veins than the doctors and nurses in MRI. I can remember looking around and feeling sick seeing those children suffering and also feeling very thankful that my child didn't have to go through chemotherapy. It was always one of those moments where I could actually feel thankful (or least less frustrated), knowing things could be so much worse for Jacob than they are. We have spent so much time over the years sitting in MRIs, hospital surgical waiting rooms and multiple clinics and I have always carried the thought that I can't believe this is happening to my son. I spent so much time thinking that he shouldn't be going through this and wasting time being mad at God. When I watched the mom across the lab from me with her two children, or when I talked to the mom next to us, for once I didn't see her any different than me and I understood how she must be feeling. I still feel sympathetic for the sick children and their families. It is still difficult to accept, but it has gotten a little easier to swallow. I am understanding better that suffering is a part of life. I'm not sure if time is making me numb or if God is giving me the peace I have prayed for… to be the best I can for Jacob. I had certain dreams for Jacob. It has taken me a long time to dream new dreams for him and let go of how I thought Jacob's life should be. Jacob is the best teacher for that. He was incredibly brave getting his first infusion. He didn't complain. He and I both have great hope that this step in his treatment is going to be a positive one. It will not be something to be sad about.
After the infusion, Jacob was told he could pick an item (I wanted to write “toy” but Jacob is getting so big, and a lot of the items were not toys) from the treasure chest. Jacob was Jacob, picking a stuffed teddy bear out for Gavin. Always thinking of others. We were told that the infusion lab appreciates donations to the treasure chest, especially for items for the older children (teenagers). It’s now on my “To Do” list! Over the next few hours and into Monday evening, Jacob suffered a headache and was tired. I gave him Tylenol. Hillary informed me not to give Jacob Motrin or Advil while he is on the Avastin. Over the next few days Jacob had a few more headaches and complained about being tired. On Sunday, a week after the infusion Jacob suffered stomach cramps, but it is hard to say weather it is from the medicine or not. I wrote it in Jacob's journal. Jacob's next infusion is April 6 and he will also have an EEG that day.
Thank you Mr. Dana for helping make Jacob's first infusion a little less stressful!
Thank you to all our family and friends, for your continued prayers and support.
If you would like to leave Jacob a note or sign his guestbook please visit: