I haven't written anything about Jenna's massive medical history, so I'll give you a recap. When Jenna was 21 months old, she started puking and losing her balance. I immediately took her into the pediatrition, who told me it was probably a virus. That was on Monday, August 1, 2005. Bu that Thursday, her eyes developed a weird, rapid back and forth movement, or nystagmus. I took her to the ER on Saturday night and they saw some fluid in her ears and prescribed some steroids. She could barely walk by this time. On Tuesday, she still wasn't better so I took her back to the pediatrition, who was Dr. Bresnitz, by the way and I refuse to have my kids see her anymore. She didn't know and sent her down to the ENT, Dr. Taylor. He said her ears looked fine and it could be a growth in her head. He also said that in order to do any scans on kids, they have to be sedated and it is hard to sedate them, so he wanted to wait a few weeks and see what happens. What?! Are you kidding me?!
After talking with my friend Wendy McConnell, who is a nurse, I decided to call the Children's Hospital in Denver and see what they have to say and if we should take her there. They told me to get in the car and get there as quickly as we could. So on Friday morning, August 12th, we went to Children's and they started the battery of tests to get her diagnosed. Apparently, they don't care that it is hard to sedate kids. If it needs to be done, they do it. So finally, at about 10 PM we got the diagnosis. She had a type of pediatric cancer called Neuroblastoma and it was in a tumor on her left adrenal gland. They admitted us to the oncology floor that night and planned on doing surgery the next day.
The next day, after meeting and talking with Jenna's new oncologist, Dr. Maloney, they decided that they would do all the tests to try to stage the cancer before doing the resection. We went home that day to do laundry and to pack. We hadn't planned on having to stay for a couple of weeks. On Sunday, we called Bishop Reschke to come help give Jenna a blessing with David and Dad. Word had spread at church and Sheldon Lowder, Gary Snell and Corey Houskeeper came as well. Dad gave her the blessing and it was very comforting. After that, Jenna and I headed back up to Denver and David and Paige stayed behind. We were building an addition on our house and the carpet layers were coming that week and David needed to work. We stayed with our really good friends, Alyson and Kirk. They have been awesome to let us stay with them throughout all of this, and we really appreciate them.
Over the next week, Jenna did test after test to see if the cancer had spread anywhere else in her body and luckily, it hadn't. Her surgery was scheduled for Monday. David and Paige came up to Denver on Saturday. His mom and Karen came as well and my mom came on Sunday. We got to the surgery center and they got her history and prepped her with some drink that made her loopy. Then we were able to take her all the way to the OR and wait for her to go to sleep. I was so sad and emotional leaving her there. Did I mention that I was about five months pregnant with Jack during all of this? The surgery went well and they were able to do it laproscopically so she only has four little scars instead of a giant one, which also meant that she was able to heal faster. They had to remove the adrenal gland as well. This was Monday, August 22 and the cancer was gone.
After the surgery, she spent a couple more days in the hospital and then we took her home. The plan was to start chemo in a couple of weeks. I'm not sure where the miscommunication happened, but she was also diagnosed with Opsoclonus Myoclonus Syndrome (OMS) at the same time. It is an auto-immune disorder of the nervous system and it is what was causing her symptoms. Basically, it makes her body attack her brain. So somehow, we didn't realize that it was it's own disorder and that the chemo that she would do was to try to put the OMS into remission. She did six rounds of low-dose Cytoxan along with IVIG over six months. She was also on oral prednisone and began walking again after about a month of treatment. Every time we tried to wean her off the prednisone, though, she would start the OMS relapse. This happened several times. I finally got on the internet in about December of 2006 and found a Yahoo group of OMS families. I learned so much about this disorder and the big deal that it actually is. It is so extremely rare that most doctors have never heard of it, but there is a neurologist in Springfield, Illinois that kind of specialized in it. So we told Dr. Maloney we wanted to go see him so she got us set up. The first appointment we could get was March 1, 2007, so we gladly took it. Dr. Pranzatelli did a spinal tap in which he looked at the B-Cells and T-Cells to see what was going on there. Apparently, both were elevated, so he gave us a course of treatment and we went from there.
The treatment consisted of four rounds of chemo, Rituxan, given once a week for four weeks. It would target the B-cells specifically. And she also started injections of ACTH, which basically makes her body make its own steroids instead of giving them to her artifically. It worked! David and I learned to give the shots and she got them every other day. She did so well with them and rarely ever complained. We took her back to Dr. Pranzatelli in October, 2007 for a check up and he did another spinal tap. The b-cells were still in the normal range, so that was great news! We continued to taper the ACTH over the next few months and she had her last shot in April, 2008. She had been getting IVIG every month throughout all of this, so now it was time to taper the IVIG. That gets us up to date.
One of Jenna's favorite thing at the hospital was ice cream! The freezer was usually stocked.
We had been doing every other infusion at the hospital in Alamosa, which had been working out fine. When we saw Dr. Maloney in August, the plan was to have her last infusion done here and then go back up there in December to take her port out. Oh yeah, her port is a little box in her chest with a line that goes right into a vein and then right into her heart. It has been great and have saved her from having to have an IV placed every time. It is all under the skin so we just put EMLA cream on it to numb it and they put a butterfly needle in to access it when she needs an infusion. She got it before the very first chemo.
Jack has a runny nose, so I couldn't take him with us. David came home from work to stay with him, so that was nice. Jenna likes to stop at the DollarTree before an infusion and she picks some stickers, a puzzle and a new coloring book. We got to the hospital and got her accessed. Then we had to wait about an hour and a half for the pharmacy to deliver her IVIG. We learned a while ago that the pharmacies won't start getting the meds ready until the patient is in the building, so that stinks. She finally got started and sat down to do her puzzle. All of a sudden, she started feeling really sick and that wasn't normal. She finally fell asleep, which she also doesn't normally do. The IVIG came in two bottles and each bottle should take two hours to infuse. The first bottle was empty just over an hour after it started. That was too fast! I told the nurse that and she slowed it down for the second one. It's no wonder she was feeling sick! That's what happens if it is pushed too fast. I called her nurse, Robin, in Denver and she told me that Jenna should've been given more Benedryl and Zofran when she reacted and it should've been slowed down immediately. I was furious. But luckily, she felt fine when she woke up from her nap, so no damage was done. She finished up her infusion and we went home. I am so glad that this was her last one, but even if it wasn't, she would not be getting more done there.
I am so thankful for all of the miracles that Jenna has been blessed with. I still look at her and feel amazed at what she has gone through. She hardly every complained. The nurses and doctors all love her. So many people have prayed for her and for that we are forever grateful.
