| Cross posted from The Greginator, for posterity. SATURDAY, FEBRUARY 28, 2009 12:09 AM, CST |
What day is it? We've barely begun and find myself not knowing the date or day of the week. Today? Well, technically yesterday. Friday. Gregory is healing well from the placement of his central line. A touch of fever last night, but all is well. Pain is being handled and he's eating. Not as well as I'd like, but well enough. His white blood count is improving, his platelets are, too. His red blood count is dropping, though. Transfusions are a possibility. We still do not have a diagnosis. His doctor did say this: '....this is found in only one tenth (1/10) of 1% of leukemia patients.' This is pretty rare. They have run out of tissue for tests from his bone marrow biopsy. They need to run further tests and we discussed a second bone marrow biopsy, tentatively scheduled for this coming Monday. Thankfully, they found a way to complete the necessary testing with blood. Except the test can't be done until Monday. Which still means several more days of not knowing what is going on. He is comfortable, he's entertained and is surrounded by those that love him. All of the out pouring of love and support has been incredible. Thank you to each and every one of you. We hear you, we receive you and we love you. |
Saturday, February 28, 2009
Saturday, February 28, 2009
Thursday, February 26, 2009
Thursday, February 26, 2009
Cross posted from The Greginator, for posterity.
THURSDAY, FEBRUARY 26, 2009 10:43 PM, CST
Wow. First off, never in a million years did I ever think THIS is where we would be. That being said, we are and we are here for the duration.
Gregory is currently 3 1/2 years old and not yet in school. He is the last of our brood. His brother Curtis is 10 and sister AnnMarie is 7.
About two weeks ago Gregory came down with a croupy cough. Which developed into a deep moist cough. It refused to get better. On Monday February 23rd, he started dry heaving and looking like he was dehydrated. He went to the doctor's office, where he was swabbed for Influenza and RSV. Both were negative. At this point we went over to the SHMC ER to receive IV fluids. I guess once kids receive IV fluids, they should perk back up and start to act 'normal' again. Gregory was still lethargic. The ER Doc then ordered some blood tests. To make a long story short, there were indicators in his blood work that he might have a viral blood infection or Leukemia. We were admitted that evening with more tests being ordered.
He has been poked and swabbed more time than I really want to know. I lost track after the five nasal swabs. (in one setting) After having no luck, a Bone Marrow Biopsy was scheduled for Wednesday morning. One of the presenting factors for Gregory, is that his White Blood cell count was really high and his platelets were really low.
9:00 Wednesday morning they took him down for the Bone Marrow Biopsy. Two hours later we had 'results'. Leukemia. Not knowing how this works, I did not realize that these results were preliminary results. At this point we were moved to the pediatric oncology unit. I must admit, if your going to be sick this is the place to do it. More on the lush accommodations later. At this point more information came through. MDS was given as a diagnosis. Once again, I didn't realize this was preliminary. Blood was drawn for genetic testing. From what I can gather, the genetic testing will tell us exactly what we are dealing with and how to treat it.
Meanwhile, Gregory had a Hickman central line placed this morning. He's had a really rough day. He's now resting peacefully and comfortably. His blood work is still out of wack and it is being monitored vigilantly. Thank goddess for the central line. Once the IV line in his hand was removed he pointed his ever so cute index finger at the nurse and said, 'No.... More....Pokes!'. He is much more comfortable with a greatly reduced stress level.
I'm not sure what the time line is on getting results back from the genetic testing. I'm sure I've left a great deal of holes in this beginning entry. If there are ANY questions, please feel free to ask and I will update as often as possible.
Regarding visitors. Visitors are welcome. Please call in advance, though. Things can get kinda crazy and do so swiftly. Also, this is a 'clean' floor. Anyone with cold/flu symptoms are asked to not stop by. Additionally, along the lines of being a clean floor, flowers and plants are not allowed. Bacteria and fungus, 'ya know. Latex balloons are also out. I would assume because of the prevalence of latex allergies.
Please expect some of these entries to be hurried and not well written. I'm simply trying to get the info out. Thanks again, everyone. We truly could not do this without each and every one of you.
Peace, love, joy & music!
Mindi
THURSDAY, FEBRUARY 26, 2009 10:43 PM, CST
Wow. First off, never in a million years did I ever think THIS is where we would be. That being said, we are and we are here for the duration.
Gregory is currently 3 1/2 years old and not yet in school. He is the last of our brood. His brother Curtis is 10 and sister AnnMarie is 7.
About two weeks ago Gregory came down with a croupy cough. Which developed into a deep moist cough. It refused to get better. On Monday February 23rd, he started dry heaving and looking like he was dehydrated. He went to the doctor's office, where he was swabbed for Influenza and RSV. Both were negative. At this point we went over to the SHMC ER to receive IV fluids. I guess once kids receive IV fluids, they should perk back up and start to act 'normal' again. Gregory was still lethargic. The ER Doc then ordered some blood tests. To make a long story short, there were indicators in his blood work that he might have a viral blood infection or Leukemia. We were admitted that evening with more tests being ordered.
He has been poked and swabbed more time than I really want to know. I lost track after the five nasal swabs. (in one setting) After having no luck, a Bone Marrow Biopsy was scheduled for Wednesday morning. One of the presenting factors for Gregory, is that his White Blood cell count was really high and his platelets were really low.
9:00 Wednesday morning they took him down for the Bone Marrow Biopsy. Two hours later we had 'results'. Leukemia. Not knowing how this works, I did not realize that these results were preliminary results. At this point we were moved to the pediatric oncology unit. I must admit, if your going to be sick this is the place to do it. More on the lush accommodations later. At this point more information came through. MDS was given as a diagnosis. Once again, I didn't realize this was preliminary. Blood was drawn for genetic testing. From what I can gather, the genetic testing will tell us exactly what we are dealing with and how to treat it.
Meanwhile, Gregory had a Hickman central line placed this morning. He's had a really rough day. He's now resting peacefully and comfortably. His blood work is still out of wack and it is being monitored vigilantly. Thank goddess for the central line. Once the IV line in his hand was removed he pointed his ever so cute index finger at the nurse and said, 'No.... More....Pokes!'. He is much more comfortable with a greatly reduced stress level.
I'm not sure what the time line is on getting results back from the genetic testing. I'm sure I've left a great deal of holes in this beginning entry. If there are ANY questions, please feel free to ask and I will update as often as possible.
Regarding visitors. Visitors are welcome. Please call in advance, though. Things can get kinda crazy and do so swiftly. Also, this is a 'clean' floor. Anyone with cold/flu symptoms are asked to not stop by. Additionally, along the lines of being a clean floor, flowers and plants are not allowed. Bacteria and fungus, 'ya know. Latex balloons are also out. I would assume because of the prevalence of latex allergies.
Please expect some of these entries to be hurried and not well written. I'm simply trying to get the info out. Thanks again, everyone. We truly could not do this without each and every one of you.
Peace, love, joy & music!
Mindi
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