Ronda Green is sharing the story of her young son, Zane with us today. In the picture to the left, the youngster jumped off his bunk bed and hit the frame of his brother's bed. That led to his first ambulance ride and CAT scan. Zane has had a rough road with ITP but he still has a beautiful smile on his face...
Zane was born May 10, 2007, in Lawrence, Kansas. Thinking he was a just a normal active 2 ½ year old, we thought nothing of his bruising. In November of 2009 after noticing bruising on his legs he was taken to the doctor, and had a CBC done.
The next day I (Ronda) received a phone call from the doctor and was told Zane needed to be taken to the Cotton O'Neil Cancer Center to be seen by a specialist because his platelets were critical at 12,000. A normal range is 120,000 to 400,000. Dr. Jakica Tancabelic, M.D. diagnosed Zane with Idiopathic Thrombocytopenic Purpura (ITP). The symptoms of ITP are similar to the symptoms of other diseases that can cause platelet counts to drop. ITP symptoms can include, small red dots on the skin caused by broken blood vessels (petechiae), purple spots on the skin (purpura), large bruises, especially on the arms and legs, resulting from seemingly minor bumps (ecchymosis) and bleeding from the gums (gingival bleeding). If a person with ITP has very low platelet counts, it is possible to have internal bleeding or, in rare cases, bleeding in the brain.
|Zane's first stay in the hospital for |
IVIG and steroid treatment.
He was sent directly to Stormount Vail for intravenous immunoglobulin (IVIG) treatment. That was the first of many 3 day stays at the hospital. The first day consisted of the IVIG treatment and his first shot of IV steroids, very harsh and very hard on his little body. The second and third day in the hospital was to watch for dehydration, and the 2nd and 3rd shot of IV steroids. This picture was the harsh reality that he may never be able to be a “normal boy”.
After several IVIG treatments, Zane's body quit responding to the IVIG. Therefore we decided to use the predisone treatment. After 9 months of predisone, Dr. T (as we call her) decided it was time to take more proactive step. In November of 2010, Dr. T sent Zane to a specialist to consult for a splenectomy, which is a treatment as well for Chronic ITP. One of the spleen functions is to remove old red blood cells. In most patients with ITP, it is the main site of platelet destruction. In chronic ITP, surgery to remove the spleen is an option if the platelet count remains too low or doesn't respond to treatment. Only about 10 per cent of children with acute ITP have the operation. The surgeon said that Zane had a spleen and mini-spleens, therefore we were excited this would “cure” him! Zane also has to take a lifelong antibiotic to prevent infections. Zane came through the surgery with flying colors, but after a week his platelets went back down.
In May of 2011, Dr. T thought it might be a good idea to get his tonisles removed because of infection. Well, the surgeon took out infected tonsiles and the night of his surgery we had to rush him to the ER because his throat was swelling shut. He spent 3 days in the hospital for a simple tonsillectomy.
Since May of 2011 we have tried to keep Zane out of the hospital and continue bi-weekly blood draws. If Zane gets a simple cold or infection his platelets drop, which caused him another hospital stay in February, which consisted of IVIG and steroids. This instance Zane's gums started bleeding, which is not a good sign for ITP patients. It is kind of like a few months ago when Zane bit his tongue and it bleed for 24 hours. His platelets were 87,000 when he left the hospital and were back down to 20,000 one week later.
Dr. T has now determined that since Zane cannot stay out of the “critical range” that we should consider the treatment “Nplate” (http://www.nplate.com/). Nplate® is a man-made protein medicine used to treat low blood platelet counts in adults with chronic immune thrombocytopenia (ITP), when certain other medicines, or surgery to remove your spleen, have not worked well enough. We have to wait 30-days to see what the insurance company is going to say about the Nplate treatment, because of the cost. We have been told that the Nplate treatment will run approximately $3,000 a week. The Nplate treatment requires weekly CBC and the Nplate injection for an unknown amount of time, it all depends on Zane and his reaction to it.
Zane's biggest dream right now is to play baseball, he talks about it everyday, but the only way Dr. T will let him play is for his platelets to be above 50,000.
|Pure happiness.... Zane's platelets rose high enough to go for a ride |
with his brother, Wyatt.
What a couragous kid! I'm looking forward to seeing Zane on TV playing professional baseball.