First, I would like to announce that Joshua took the second EOI of his required testing during high school and did very well. He has now passed both Algebra I and Geometry EOI. That’s my boy!! That is coming from a proud mother and math teacher.
Micah – (grab a cup of coffee, this is a long one)
Micah ready for a long day
Wednesday was one of those days that is particularly difficult physically for Micah and emotionally for Mark and I. Micah was scheduled for his CT scan, blood work, and a doctor’s appointment. While Micah’s cancer has always responded to chemotherapy treatments and we have never had active tumor growth while on chemo, we are always somewhat anxious when it is time for scans. Micah and I arrived at Radiology at 8:30 a.m. in the pouring rain (thank-you to the hospital valet parking – they are so helpful). After all of the paperwork they brought us Micah’s contrast, 4oz. through his feeding tube every 20 minutes. Then it was up the elevator, across the cat walk and up another elevator to “Kids Care 7” – The Jimmy Everest Cancer Clinic. We prefer an oncology nurse access Micah’s port-a-cath so we go over to the clinic when any of his tests require the use of an IV. We returned to Radiology to finish our contrast and complete the scan. We waited for the technician to finish a CD copy of the scans and left.
Next, we went to physical therapy. Micah is usually welcome to drop by PT
Just too tired for PT today!
when we are in the hospital for other scheduled appointments and if they are free someone will work with him. He has made no progress with his “reflex sympathetic dystrophy” since the issues with his heart. Micah’s leg is drawn up and he can no longer extend his knee to walk and his foot continues to cause him a lot of pain. It is a difficult balance between rest, recovery, and rehab. Anyway, Candice was free and could work with Micah – trying to straighten his leg.
When we finished at PT we went up to the 10th floor to visit. We have become very close to Emma (6 months) and her family. She has been inpatient for about three weeks. So I wanted to check on them. Next, we stopped at the hospital cafeteria for a bite to eat. We sat at our regular table so we could see people pass by. We had the opportunity to visit with several of our friends.
Micah and Dr. Ike
Then, we had a wonderful surprise as we were walking back to the clinic. We ran into Dr. Ike. We first met Dr. Ike at about 3:00 a.m. on December 2, 2006 in the Emergency Room at OU Children’s Hospital. He was the Urology Resident on call that night. He was the first one to take the time find out what was wrong (remember this was our second ER visit and we had been to two different doctors’ offices during the previous two weeks). Dr. Ike was the first to tell us the Micah had a huge mass in his pelvis. By 6:00 a.m. Micah had been scanned , the rest of the urology team had arrived and we were discussing the cancer – Rhabdomyosarcoma. The events of the night are forever etched in my memory. Dr. Ike and Dr. Campbell, the urology attending physician, may have saved Micah’s life that night by catching his tumor growth when they did. Dr. Ike has now finished his residency and will be leaving to complete a fellowship in Chicago. We wish him the best!!
After our visit it was on to the clinic. There was so much going on in the clinic it was hard to take it all in. Several of our friends were in clinic and for several different reasons.
Sometimes it is hard to believe how long we have been on our own journey with Micah, until we measure it in the lives of those we have touched and who have touched us. We have cried with many families during those first horrific days of diagnosis. We have walked the ups and downs of treatment. We have celebrated the end of treatment with many and grieved the end of life with some of our precious friends. We love you all. And yet, here Micah is – fighting, blessing everyone who comes to know him, and surviving!!!! What an amazing boy; what an amazing God to see us through.
Unfortunately, while we were enjoying our friends, Micah was fading fast. He has had little energy for some time and today was no different. He has been running a low grade fever, his counts have been low, and he is having lower gastrointestinal difficulties (still or again?) We received his counts and it was confirmed that his counts are low. His AGC was 200 so his is neutropenic. His white count was 0.5 (normal is 4.0-11.0), hemoglobin was 8.2 (normal is 13.0-18.0) and platelets were26 (normal 140-440). Our nurse informed us that the doctor wanted to admit Micah for a unit of blood but there was no room on the 10th floor. It’s not that we don’t like the rest of the hospital – we have many nurses we like on the ninth floor who have taken care of Micah. But Micah likes being on 10 and he isn’t happy on other floors. We like being able to return to the comfort of our 10th floor home away from home. The nurses know Micah very well and are aware of all of his special needs. So this became a complex discussion – between the physician’s assistance, the nurse, our doctor (who was in the ER while this was going on), Mark (who is on the phone) and me. Finally, it was decided that we would go over to the 10th floor for “type and cross” then return tomorrow for the blood in the transfusion room on the 10th floor.
To add to this mayhem, Micah is experiencing agonizing pain because of the lower GI issue. Micah has huge blisters and open sores in his rectal area and every time he passes stool he screams in pain. Micah has not been able to gain complete control since his colostomy reversal surgery, so he is in “pull ups” (4T-5T size – my 18 year old – anyway), therefore clean up is painful also. He passed two stools while we are in clinic and all of the discussion and Brandon’s bell ringing are all going on.
We did go back over to the 10th floor for Micah’s “type and cross”. Sarah heplocked his port and we were done. Finally, our kind valets brought the van around and we are headed home again about 5:00 p.m.