I hope everyone had good Christmas and New Year celebrations. Actually, I know that isn’t the case, because some of our friends lost their children to cancer last year and this was their first Christmas without one of their kids. We can relate to the pain of being away from home and in a hospital over a holiday, but we can’t empathize with having to celebrate one without our kids. It doesn’t seem fair, but it happens a lot more than we realize.
We had a great time of course since we were able to be home for both Christmas and New Years. It was made even better by watching our Iowa State Cyclones beat Minnesota in the 2009 Insight Bowl on New Years Eve! We watched the game in glorious HD at our house with some friends and enjoyed seeing Eli’s bracelet over and over again on the wrists of the players. Speaking of Eli’s bracelets and the ISU football players, I finally got a copy of the Paul Rhoads show feature that highlighted Eli and the team. They did a fantastic job with it. You can check it out here:
Not to be outdone, the Iowa Hawkeyes also won their bowl game on January 5th at the Orange Bowl. Congratulations to them, and thanks to everyone who e-mailed/texted/facebooked when they saw them highlight Ricky Stanzi’s bracelets. That was exciting, and I snapped a pic of the TV when they showed his left wrist that has Eli’s bracelet on it. The Des Moines Register also did a small article on Ricky’s bracelets and mentioned Eli and Jenna (a girl Ricky is close with that has liver cancer).
Ok, enough about sports, we have some medical things to talk about. Eli’s blood counts have been dropping lately and we aren’t sure why. Since just after Christmas, we have had to get Eli several platelet and blood transfusions and have started giving him GCSF shots every night to try to boost his white blood count (aka, his immunity). Unfortunately the GCSF doesn’t really seem to be working very well as his counts are still very low. We aren’t sure why, but there is a running theory. The theory that Dr. Kramer holds is that Eli was blasted with chemo and radiation after his brain surgery in February 2009 until the summer. Since then, he has been on low dose oral Temodar (chemo) and Accutane. Accutane doesn’t affect his counts and Temodar SHOULDN’T since it’s a small amount. However, since his counts dropped so badly, we stopped the oral Temodar halfway through the second cycle. Dr. Kramer thinks that Eli’s bone marrow could be easily “irritated” since he likely doesn’t have as many cells as a normal person would (after 2 years of lots of chemo, this is normal). Even though the Temodar shouldn’t affect his counts, it might be offensive enough to his bone marrow that it can’t handle it without his counts dropping. This would be what we call the “hopeful theory”. The other two options aren’t good and we hope they aren’t the case. The other options would be that he either has had a Neuroblastoma relapse or he has secondary leukemia (a side effect known to occur in kids who have had lots of chemotherapy). So in order to figure out what is going on, Dr. Kramer asked us to come to NYC ASAP to get bone marrow tests done. Knowing how awesome Dr. Woods has been at Blank Children’s Hospital in Des Moines, I asked her if they could do the tests and look for neuroblastoma and leukemia. She got in contact with Dr. Kramer in New York City to find out exactly what she wanted to know, and decided that they could definitely do bone marrow biopsies exactly how they do them in NYC (even though it’s slightly different from how they would ‘normally’ do them at Blank). So Eli is going to have bone marrow biopsies done on Monday at Blank in Des Moines. Let me point out that all of this came about after 5pm on Friday and the two doctors have been planning and arranging all of this over the weekend. We are truly blessed to have such great doctors looking out for Eli.
So once again we are calling on Eli’s prayer warriors to keep him in your prayers as he goes through a bone marrow procedure on Monday. For those that are new or those that don’t recall, a bone marrow procedure is when they put Eli to sleep and then extract bone marrow from Eli’s hip bones (2 spots in the front and 2 spots in the back) with a really big needle. Believe it or not, they used to do this while the kids were AWAKE (we were in the room the first time this was done and I don’t think we’ll ever get that image out of our heads), but since Dr. Woods arrived at Blank, she has insisted that they put the kids under anesthesia for it like they do in NYC. There is a bit of debate as to whether they will actually get the bone marrows done tomorrow due to scheduling, so we’d appreciate prayers that this actually gets DONE tomorrow. Otherwise it will likely be Tuesday or Wednesday.
This will make the other “cancer parents” roll their eyes, but since we had taken Eli off of Bactrim/Pentamidine quite a while ago thanks to chemotherapy being over for 6 months, we had forgotten all about it. Well now that Eli has been on chemotherapy again and is once again at risk for a certain pnemonia, it is important that he is back on it. I think the doctors in NYC just assumed we remembered that, but since it wasn’t a part of the protocol that they laid out for us, we totally forgot about it. Dr. Kramer randomly asked last week if we were still doing Pentamidine and I don’t think she liked my answer of “huh?” After emphasizing the life saving importance of Pentamidine, we have been getting our doses done at Blank (who ironically never gives kids Pentamidine over IV and always does breathing treatments, which Eli hates, so they have been giving it to him IV like he likes it). 🙂 Now that we are caught up on Pentamidine, we just have to give it to him once a month (it is a one hour infusion). I’m pretty sure we won’t be forgetting again!
We should know some preliminary results from the bone marrow tests within the week, so I will post an update once we know something. His scans from the day before Thanksgiving were clean (including bone marrows), so that gives us some hope that Dr. Kramer’s theory of Eli having hypocellular bone marrow is the case and that it’s not Neuroblastoma or Leukemia. Thanks again to everyone for their prayers.
Don’t forget to randomly check on our photo album at http://photos.hornit.net to see pictures from our “adventures” around Iowa and New York City!
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