Scotts spinal fluid still with the pathologist, no results today.
One more uber important thing that I forgot to mention yesterday ... Scott grew 1 inch in the last month. Since he hasnt grown at all since starting chemo this is kind of awesome. Mind you, he's still a midget, but its a start.
Scott & Sunny
Thursday, July 16, 2009
Wednesday, July 15, 2009
Scott’s bloodwork looked pretty good. Anc 2500, hgb 13.6 (WOW!!), monocytes 11 and wbc 3.9. I was hoping the white count would be a little higher but was reassured that this was perfectly fine. Hopefully as time goes by it will creep up to normal. Some of his chemistries were a little off but again was told there was nothing major to worry about. His spinal tap was done with no problems but we won’t have the results for a day or two.
Sadly though, a little boy at our clinic died this morning. Thai had been fighting t-cell lymphoma (which is very similar and treated the same as t-cell leukemia) for many years and was one of the bravest, smiliest kids I’ve ever had the privilege to meet. He was truly awesome. A sad day. Rest easy little Thai.
http://www.caringbridge.org/visit/thai10
Sadly though, a little boy at our clinic died this morning. Thai had been fighting t-cell lymphoma (which is very similar and treated the same as t-cell leukemia) for many years and was one of the bravest, smiliest kids I’ve ever had the privilege to meet. He was truly awesome. A sad day. Rest easy little Thai.
http://www.caringbridge.org/visit/thai10
Tuesday, July 14, 2009
Its been five weeks since Scott's last clinic appointment (put back a week due to Dezzys birthday), but tomorrow we're back in again. Scott will have bloodwork done, his pentadamine breathing treatment, a physical and a spinal tap.
Its been a good break between appointments and Scott is feeling better than he has in a long, long time. He's eating well (although perhaps scoffing down a little TOO much), the neuropathy is easing, he's playing with friends out in the street and looking good with pink rosy cheeks, and incredibly, during the last couple of weeks, has detoxed and kicked his codeine and ativan habit! We are so proud of him and relieved that he's no longer leaning on narcotics to calm him down or take the edge off the pain. I think even he agrees now that being able to go outside and play is better stress-relief than ativan, demerol, and all that good stuff.
On the surface all seems well and groovy, yet a return of acute leukemia would be seen in the blood and spinal fluid before symptoms were seen.
So, we worry. And probably, we always will.
Anyway, like they always say, nothing like a good old fashioned sing-song to chase away the cancer-clinic blues ...
Its been a good break between appointments and Scott is feeling better than he has in a long, long time. He's eating well (although perhaps scoffing down a little TOO much), the neuropathy is easing, he's playing with friends out in the street and looking good with pink rosy cheeks, and incredibly, during the last couple of weeks, has detoxed and kicked his codeine and ativan habit! We are so proud of him and relieved that he's no longer leaning on narcotics to calm him down or take the edge off the pain. I think even he agrees now that being able to go outside and play is better stress-relief than ativan, demerol, and all that good stuff.
On the surface all seems well and groovy, yet a return of acute leukemia would be seen in the blood and spinal fluid before symptoms were seen.
So, we worry. And probably, we always will.
Anyway, like they always say, nothing like a good old fashioned sing-song to chase away the cancer-clinic blues ...
Friday, July 10, 2009
Yesterday our precious little Derry turned 15!! And unlike previous birthdays, disaster didnt strike and the day (which mostly consisted of building furniture, installing software, ooooing, aaaaahing and eating) went perfectly. Here he is, too cool to smile or even look at the camera, with his new toys ...
And here is "Bannockburn", Prince of the frozen wastes, destroyer of all that is good, slayer of fluffy kittens and master sock thief, or something like that. Believe it or not, this top level character which he has built over the last couple of years could be sold for around a thousand dollars, in part due to a rare 'picnic basket' add-on won on a gaming card. LOL. Oh yeah baby, and who says gaming doesnt pay?
On to our Jingle cat. Jingle has been at the vet every few days now for the last month and at his last visit (Tuesday) we were told that there was nothing more the vet could do. His ulcer had improved but was still very bad but more worryingly his eye was filling up with blood. The retina had become damaged and scarred and his vision was almost certainly gone in that eye. The vet seemed to think there was a very good chance he had a tumour behind the ulcer (in most cases tumours in cats are cancerous) and recommended we see an animal eye specialist in Tampa. I must admit I was ready to have Jingle put to sleep, and suggested it twice, hell he's 20 years old and there is no way Im putting him through any undue stress, pain, surgery or whatever, at his age. But anyway, David and the vet said that we should at least get to the bottom of it and see the specialist, so today we did, and would you believe it, there is no cancer, just a very bad ulcer and high blood pressure!! The high bp has caused capilliaries in his eye to burst and that is why we're now seeing a blood filled eye. So he is now on the full-spectrum ulcer meds, canine serum (thank you doggie blood donor!) and a blood pressure medicine the same as Scott had to take. The vet said that because the ulcer was so deep Jingle definately wasnt in any pain but its highly likely he is having mild headaches due to the bp. Anyway, hopefully now my raggedy old kitty will start to get better and live for many, many more years ... or a few months at least. Here he is looking a bit pathetic...but alive, oh, he's still a-live, ohhhhhhhh, he, ohhh, he's still alive ...
Tuesday, July 7, 2009
Thursday, July 2, 2009
I’m bored and fed up trying to clean cat pee out of the carpet so here I am posting nothing of consequence and a Rowan Atkinson video.
Its been a mostly good week for Scott, he’s looking and feeling great, his unconditional 10 year green card arrived in the mail, and he unlocked a new character on some game he’s playing (which is obviously cause for immense joy and merriment). The only downer has been lots of stress and worry about our little Jingle cat (and nope it wasn’t him who peed on the carpet). A couple of weeks ago he was diagnosed as having an ulcer in his eye and despite treatment it has gotten much worse until we were told on Monday that his entire eye could rupture at any time. After much discussion with the vet we agreed that sedating and operating on a 20 year old cat was too risky, we had the ‘end of life’ chat, and we also talked about a last ditch attempt to shrink the ulcer and get rid of the infection which had set in. The vet can’t culture the eye due to Jingles age and anesthesia issues so he doesn’t know exactly what we are fighting, so we are just throwing every damn thing at the problem and keeping our fingers crossed. Jingle is now on 6 different meds, 5 of them to be given 4 times daily. Oh and Jingle has to be in isolation also, yup he really loves this, poor kitty. Anyhow, he went for a follow up yesterday and we all thought the time was nigh as his eye looked even worse but when the vet looked he grinned and said ‘oh yes, much much better’. So tomorrow he goes back in again, then Monday, then Friday, and hopefully Jingle is going to be back to his old happy scampering ways very soon.
Its been a mostly good week for Scott, he’s looking and feeling great, his unconditional 10 year green card arrived in the mail, and he unlocked a new character on some game he’s playing (which is obviously cause for immense joy and merriment). The only downer has been lots of stress and worry about our little Jingle cat (and nope it wasn’t him who peed on the carpet). A couple of weeks ago he was diagnosed as having an ulcer in his eye and despite treatment it has gotten much worse until we were told on Monday that his entire eye could rupture at any time. After much discussion with the vet we agreed that sedating and operating on a 20 year old cat was too risky, we had the ‘end of life’ chat, and we also talked about a last ditch attempt to shrink the ulcer and get rid of the infection which had set in. The vet can’t culture the eye due to Jingles age and anesthesia issues so he doesn’t know exactly what we are fighting, so we are just throwing every damn thing at the problem and keeping our fingers crossed. Jingle is now on 6 different meds, 5 of them to be given 4 times daily. Oh and Jingle has to be in isolation also, yup he really loves this, poor kitty. Anyhow, he went for a follow up yesterday and we all thought the time was nigh as his eye looked even worse but when the vet looked he grinned and said ‘oh yes, much much better’. So tomorrow he goes back in again, then Monday, then Friday, and hopefully Jingle is going to be back to his old happy scampering ways very soon.
That’s about it really. Like I said, our green cards arrived which really should have been cause for celebration but with everything that has happened in the last 2 years, our residency is now of no major concern. A few years ago when we were kicked back to London (for 7 months!!) to fight the bureaucrats at the Embassy it was devastating, but compare that with having your baby’s life on the line and it pales into insignificance. Still, it’s good to have legal ID once more. We were beginning to feel like that dude in that movie who was stuck in an airport terminal, our British passports had expired along with our temporary US green cards, we were non-people. (Derry thought it was cool being an illegal and took to wearing his sombrero more often.) Anyhow, it’s done now. Scott looks funny in his green card picture. It was taken during treatment when his hair was growing in dark and curly, cept it doesn’t look curly in the picture, just messed up. He looks like a plump Billy Joe from Green Day which he is thrilled about. Derry looks funny because they made him tuck his hair behind his ears and I look Slavic and really, really mad.
showing solidarity ...
Wednesday, June 24, 2009
Tuesday, June 23, 2009
I'm almost too scared to say it but Scott is starting to feel better.
He hasnt thrown up in 2 weeks and his panicky charge to the bathroom is almost a thing of the past. He is also eating fairly well, still gluggling back too much Sunny D (which I should really stop buying but, according to Scott, it helps the medicines go down - lol), but apart from that he's doing good. The neuropathy in his ankles and feet is still an issue but he isnt complaining about it as much.
Last night we went to knock a few balls around and without thinking HE RAN a few steps. Scott hasnt run anywhere in over 2 years. Pretty cool huh?
He hasnt thrown up in 2 weeks and his panicky charge to the bathroom is almost a thing of the past. He is also eating fairly well, still gluggling back too much Sunny D (which I should really stop buying but, according to Scott, it helps the medicines go down - lol), but apart from that he's doing good. The neuropathy in his ankles and feet is still an issue but he isnt complaining about it as much.
Last night we went to knock a few balls around and without thinking HE RAN a few steps. Scott hasnt run anywhere in over 2 years. Pretty cool huh?
Sunday, June 21, 2009
Friday, June 19, 2009
ScienceDaily (June 19, 2009) — Despite great strides in treating childhood leukemia, a form of the disease called T-cell acute lymphoblastic leukemia (T-ALL) poses special challenges because of the high risk of leukemic cells invading the brain and spinal cord of children who relapse.
Now, a new study in the June 18, 2009, issue of the journal Nature by scientists at NYU School of Medicine reveals the molecular agents behind this devastating infiltration of the central nervous system. The finding may lead to new drugs that block these agents and thus lower the risk of relapse.
T-ALL, a blood-borne cancer in which the bone marrow makes too many lymphocytes, or white blood cells, strikes several hundred children and adolescents in the U.S. annually. While greater than 90% percent go into remission through a combination of chemotherapy and radiation, up to one third of this group end up relapsing. These patients are at particular risk for tumor cells to invade the brain and spinal cord, and to prevent this all patients receive chemotherapy injections into the central nervous system and in some cases cranial irradiation—approaches that cause dangerous side effects, including secondary tumors and potentially permanent cognitive and developmental deficits.
“In general, T-cell acute lymphoblastic leukemia is treatable with chemotherapy and radiation,” said Ioannis Aifantis, PhD, associate professor of pathology and co-director of the Cancer Stem Cell Program at the NYU Cancer Institute, who led the new study. “But you have a very high rate of relapse. And after the relapse, it is not treatable because the cancer occurs in tricky places like the central nervous system,” said Dr. Aifantis, who is also an Early Career Scientist at the Howard Hughes Medical Institute.
“We are very proud of this research and very excited about the potential implications for new therapeutic approaches to prevent or reduce the spread of leukemic cells into the central nervous system,” said Vivian S. Lee MD, PhD, MBA, the vice dean for science, senior vice president and chief scientific officer of NYU Langone Medical Center.
In the new study, Dr. Aifantis and his colleagues found that a key protein receptor embedded on the outer surface of leukemic cells is responsible for infiltrating the brain and spinal cord. “What we have found is that leukemic cells over-express this receptor.” said Dr. Aifantis, “If you knock out this receptor, these cells will not go to the brain under any circumstances.”
Previous research had strongly implicated a famous gene regulator called Notch1 in the progression of T-ALL. The Notch1 gene (a mutated version gives fruit flies notched wings) is an oncogene, or cancer-causing gene, in humans. Certain kinds of mutations in this gene have been found in nearly half of all T-ALL patients, and current estimates suggest that the gene’s regulatory influence might be implicated in nearly 90 percent of all T-ALL cases.
For their new study, Dr. Aifantis and his colleagues first introduced overactive forms of Notch1 into mice. As a result, the mice developed leukemia and the leukemic cells efficiently infiltrated the inner layers of the membrane covering the brain. “What happens is that the leukemic cells get into the cerebrospinal fluidthat protects our brain and spine, where they fill up the space and they can affect brain function, either by secreting chemicals and toxic factors or even by simple pressure,” Dr. Aifantis said.
His team then examined an array of other mouse genes to identify candidates that might fall under the regulatory spell of Notch1 to promote the brain and spinal cord infiltration. The screen revealed a promising gene for a protein named CCR7, which is embedded on the surface of lymphocytes. This chemokine receptor, as it’s known, normally senses and responds to small chemical attractants called chemokines, which act like recruitment signals for lymphocytes to converge on a specific site during the body’s response to infection or injury. In leukemia, however, these lymphocytes proliferate abnormally.
CCR7 was already known as a key player in normal lymphocyte migration and as a binding partner of two chemokines named CCL19 and CCL21. Previous studies had implicated these protein interactions in the metastasis of other tumors such as melanomas and breast cancers. Dr. Aifantis’s team also discovered that the gene for CCR7 was overactive in four of five T-ALL cell lines derived from human patients, bolstering suspicions that it played a central role in the disease. Conversely, a mutation that knocked out Notch1 also led to dramatically reduced CCR7 levels.
To characterize CCR7’s potential role in T-ALL, the researchers used two sets of mice: one in which the receptor was turned on, and a second in which it was turned off. When the team delivered an identical number of human-derived leukemic cells to both sets of mice, those with the CCR7 chemokine receptor turned off lived almost twice as long. Using bioluminescent imaging, the researchers quickly understood why: animals with the active CCR7 receptor had many more tumors. Tellingly, the T-ALL cells had infiltrated the brain and spinal cord of those mice.
Further experiments suggested that when healthy mice received leukemic cells in which the gene for CCR7 had been turned off, the cells could not migrate to the brain even though they reached other body tissues. As a result, the mice survived significantly longer than counterparts with an active copy of the gene. On the other hand, introducing a normal version of the same gene to mice otherwise lacking it was enough to recruit leukemic cells to the brain and spine.
“We wanted to determine whether CCR7 by itself was sufficient for entry into the central nervous system and that’s what this experiment shows,” Dr. Aifantis said. “By changing one specific gene, you now have your function back.”
Finally, the researchers identified the small protein that acted as the “come hither” signal for the CCR7 protein receptors. One candidate, CCL21, was undetectable in leukemic mice. But a second, CCL19, appeared in tiny veins of the brain near the infiltrating tumor cells. When the researchers introduced leukemic cells carrying a gene for CCR7 to mice that naturally lacked the CCL19 chemokine, the mice survived longer, suggesting that their increased life spans might be due to a disrupted interaction of the two proteins. The leukemic cells had no trouble infiltrating other tissue like the lymph nodes, but were completely incapable of infiltrating the brains of CCL19-deficient mice, the researchers report.
“Perhaps there are antibodies or small molecules that can block the interaction between these two proteins or reduce their interactions,” Dr. Aifantis said, “and hopefully that could be used as a type of prophylactic treatment to prevent a relapse in the central nervous system among patients who have already been treated for leukemia.” Such a treatment, he said, could prove a good alternative to the intensive and often poorly tolerated radiation and chemotherapy now used to try to block such a relapse.
The study was led by Dr. Silvia Buonamici, a post-doctoral fellow in the laboratory of Dr. Aifantis in the Department of Pathology and the NYU Cancer Institute, and in the Helen L. and Martin S. Kimmel Stem Cell Center at NYU Langone Medical Center. Other study investigators are; Thomas Trimarchi, Maria Grazia Ruocco, Linsey Reavie, Severine Cathelin, Yevgeniy Lukyanov, Jen-Chieh Tseng, Filiz Sen, Mengling Li, Elizabeth Newcomb, Jiri Zavadil, Daniel Meruelo, Sherif Ibrahim, David Zagzag, and Michael L. Dustin from NYU Langone Medical Center; Brenton G. Mar, Apostolos Klinakis, and Argiris Efstratiadis from Columbia University Medical Center; Eric Gehrie and Jonathan S. Bromberg from Mount Sinai School of Medicine; and Martin Lipp from the Max Delbrück Center for Molecular Medicine in Berlin.
The study was supported by grants from the National Institutes of Health, the American Cancer Society, the Dana Foundation, The Chemotherapy Foundation, the Alex’s Lemonade Stand Foundation, the Lauri Strauss Leukemia foundation, the G&P Foundation, an NYU School of Medicine Molecular Oncology and Immunology training grant, the American Society of Hematology, the Juvenile Diabetes Research Foundation, the National Cancer Institute, a gift from the Berrie Foundation, and a fellowship from the Jane Coffin Childs Memorial Fund for Medical Research.
Now, a new study in the June 18, 2009, issue of the journal Nature by scientists at NYU School of Medicine reveals the molecular agents behind this devastating infiltration of the central nervous system. The finding may lead to new drugs that block these agents and thus lower the risk of relapse.
T-ALL, a blood-borne cancer in which the bone marrow makes too many lymphocytes, or white blood cells, strikes several hundred children and adolescents in the U.S. annually. While greater than 90% percent go into remission through a combination of chemotherapy and radiation, up to one third of this group end up relapsing. These patients are at particular risk for tumor cells to invade the brain and spinal cord, and to prevent this all patients receive chemotherapy injections into the central nervous system and in some cases cranial irradiation—approaches that cause dangerous side effects, including secondary tumors and potentially permanent cognitive and developmental deficits.
“In general, T-cell acute lymphoblastic leukemia is treatable with chemotherapy and radiation,” said Ioannis Aifantis, PhD, associate professor of pathology and co-director of the Cancer Stem Cell Program at the NYU Cancer Institute, who led the new study. “But you have a very high rate of relapse. And after the relapse, it is not treatable because the cancer occurs in tricky places like the central nervous system,” said Dr. Aifantis, who is also an Early Career Scientist at the Howard Hughes Medical Institute.
“We are very proud of this research and very excited about the potential implications for new therapeutic approaches to prevent or reduce the spread of leukemic cells into the central nervous system,” said Vivian S. Lee MD, PhD, MBA, the vice dean for science, senior vice president and chief scientific officer of NYU Langone Medical Center.
In the new study, Dr. Aifantis and his colleagues found that a key protein receptor embedded on the outer surface of leukemic cells is responsible for infiltrating the brain and spinal cord. “What we have found is that leukemic cells over-express this receptor.” said Dr. Aifantis, “If you knock out this receptor, these cells will not go to the brain under any circumstances.”
Previous research had strongly implicated a famous gene regulator called Notch1 in the progression of T-ALL. The Notch1 gene (a mutated version gives fruit flies notched wings) is an oncogene, or cancer-causing gene, in humans. Certain kinds of mutations in this gene have been found in nearly half of all T-ALL patients, and current estimates suggest that the gene’s regulatory influence might be implicated in nearly 90 percent of all T-ALL cases.
For their new study, Dr. Aifantis and his colleagues first introduced overactive forms of Notch1 into mice. As a result, the mice developed leukemia and the leukemic cells efficiently infiltrated the inner layers of the membrane covering the brain. “What happens is that the leukemic cells get into the cerebrospinal fluidthat protects our brain and spine, where they fill up the space and they can affect brain function, either by secreting chemicals and toxic factors or even by simple pressure,” Dr. Aifantis said.
His team then examined an array of other mouse genes to identify candidates that might fall under the regulatory spell of Notch1 to promote the brain and spinal cord infiltration. The screen revealed a promising gene for a protein named CCR7, which is embedded on the surface of lymphocytes. This chemokine receptor, as it’s known, normally senses and responds to small chemical attractants called chemokines, which act like recruitment signals for lymphocytes to converge on a specific site during the body’s response to infection or injury. In leukemia, however, these lymphocytes proliferate abnormally.
CCR7 was already known as a key player in normal lymphocyte migration and as a binding partner of two chemokines named CCL19 and CCL21. Previous studies had implicated these protein interactions in the metastasis of other tumors such as melanomas and breast cancers. Dr. Aifantis’s team also discovered that the gene for CCR7 was overactive in four of five T-ALL cell lines derived from human patients, bolstering suspicions that it played a central role in the disease. Conversely, a mutation that knocked out Notch1 also led to dramatically reduced CCR7 levels.
To characterize CCR7’s potential role in T-ALL, the researchers used two sets of mice: one in which the receptor was turned on, and a second in which it was turned off. When the team delivered an identical number of human-derived leukemic cells to both sets of mice, those with the CCR7 chemokine receptor turned off lived almost twice as long. Using bioluminescent imaging, the researchers quickly understood why: animals with the active CCR7 receptor had many more tumors. Tellingly, the T-ALL cells had infiltrated the brain and spinal cord of those mice.
Further experiments suggested that when healthy mice received leukemic cells in which the gene for CCR7 had been turned off, the cells could not migrate to the brain even though they reached other body tissues. As a result, the mice survived significantly longer than counterparts with an active copy of the gene. On the other hand, introducing a normal version of the same gene to mice otherwise lacking it was enough to recruit leukemic cells to the brain and spine.
“We wanted to determine whether CCR7 by itself was sufficient for entry into the central nervous system and that’s what this experiment shows,” Dr. Aifantis said. “By changing one specific gene, you now have your function back.”
Finally, the researchers identified the small protein that acted as the “come hither” signal for the CCR7 protein receptors. One candidate, CCL21, was undetectable in leukemic mice. But a second, CCL19, appeared in tiny veins of the brain near the infiltrating tumor cells. When the researchers introduced leukemic cells carrying a gene for CCR7 to mice that naturally lacked the CCL19 chemokine, the mice survived longer, suggesting that their increased life spans might be due to a disrupted interaction of the two proteins. The leukemic cells had no trouble infiltrating other tissue like the lymph nodes, but were completely incapable of infiltrating the brains of CCL19-deficient mice, the researchers report.
“Perhaps there are antibodies or small molecules that can block the interaction between these two proteins or reduce their interactions,” Dr. Aifantis said, “and hopefully that could be used as a type of prophylactic treatment to prevent a relapse in the central nervous system among patients who have already been treated for leukemia.” Such a treatment, he said, could prove a good alternative to the intensive and often poorly tolerated radiation and chemotherapy now used to try to block such a relapse.
The study was led by Dr. Silvia Buonamici, a post-doctoral fellow in the laboratory of Dr. Aifantis in the Department of Pathology and the NYU Cancer Institute, and in the Helen L. and Martin S. Kimmel Stem Cell Center at NYU Langone Medical Center. Other study investigators are; Thomas Trimarchi, Maria Grazia Ruocco, Linsey Reavie, Severine Cathelin, Yevgeniy Lukyanov, Jen-Chieh Tseng, Filiz Sen, Mengling Li, Elizabeth Newcomb, Jiri Zavadil, Daniel Meruelo, Sherif Ibrahim, David Zagzag, and Michael L. Dustin from NYU Langone Medical Center; Brenton G. Mar, Apostolos Klinakis, and Argiris Efstratiadis from Columbia University Medical Center; Eric Gehrie and Jonathan S. Bromberg from Mount Sinai School of Medicine; and Martin Lipp from the Max Delbrück Center for Molecular Medicine in Berlin.
The study was supported by grants from the National Institutes of Health, the American Cancer Society, the Dana Foundation, The Chemotherapy Foundation, the Alex’s Lemonade Stand Foundation, the Lauri Strauss Leukemia foundation, the G&P Foundation, an NYU School of Medicine Molecular Oncology and Immunology training grant, the American Society of Hematology, the Juvenile Diabetes Research Foundation, the National Cancer Institute, a gift from the Berrie Foundation, and a fellowship from the Jane Coffin Childs Memorial Fund for Medical Research.
Thursday, June 18, 2009
Wednesday, June 17, 2009
Thursday, June 11, 2009
So another clinic day dawned, Scott and I shared a bottle of Pepto, downed some good pills and went forth unto the dragons den. I hate clinic.
However, we have been reprieved once more and all is well - ish! Woooooooohooooooooooooo!
His counts werent great, platelets - 260, wbc 4.4 and hgb 10.8. No unclassifieds! :) I was really surprised his hemoglobin was so crap since he has decent colour in his cheeks but his nutrition levels were also abysmal so it would seem the two are possibly linked. If he's not vomiting he's fasting (because he's too scared to eat) so maybe the lack of iron and protein are now showing up in the bloodwork.
His physical went fine, bp a little high but I think it was just nerves. No swollen lymph nodes or balls (yup he always gets a thorough groping down there because thats one of leukemia's favourite hiding places!!!!). Spleen also normal (again a hiding place).
Scott has been referred to a GI specialist, so hopefully we can get an appointment soon and nothing too sinister will be found. The possibilities of either crohns or colitis were mentioned today which are obviously not the most pleasant of conditions for Scott to have to deal with, anyhow we'll just have to see what the doc says and go from there.
Well thats it for now, Im so tired and my nerves are shot.
Thanks for checking in y'all.
However, we have been reprieved once more and all is well - ish! Woooooooohooooooooooooo!
His counts werent great, platelets - 260, wbc 4.4 and hgb 10.8. No unclassifieds! :) I was really surprised his hemoglobin was so crap since he has decent colour in his cheeks but his nutrition levels were also abysmal so it would seem the two are possibly linked. If he's not vomiting he's fasting (because he's too scared to eat) so maybe the lack of iron and protein are now showing up in the bloodwork.
His physical went fine, bp a little high but I think it was just nerves. No swollen lymph nodes or balls (yup he always gets a thorough groping down there because thats one of leukemia's favourite hiding places!!!!). Spleen also normal (again a hiding place).
Scott has been referred to a GI specialist, so hopefully we can get an appointment soon and nothing too sinister will be found. The possibilities of either crohns or colitis were mentioned today which are obviously not the most pleasant of conditions for Scott to have to deal with, anyhow we'll just have to see what the doc says and go from there.
Well thats it for now, Im so tired and my nerves are shot.
Thanks for checking in y'all.
Tuesday, June 9, 2009
On a brighter note
Yesterday Derry, Scott and I received congratulatory letters from the United States Citizenship and Immigration Centre stating that we have jumped through all the necessary hoops and were now Legal Permanent Residents of the USA.
It has been an hilarious experience, and now, just for fun, maybe we should do the whole process again but in reverse. All in favour of our deep-South David becoming a minion of her Majesty the Queen, say "aye".
As for Scotty boy, well he's an enigma for sure. One day he's duracelling up and down the pool, devouring everything in site, spouting forth weird and wonderful facts (we call him 'Oracle', he wasn't that way prior to the cranial radiation, something mystical happened in that human microwave!!!!) and chattering non-stop. The next, he's doing the dying swan routine.
He has his monthly appointment on Thursday and will also have his port flushed and a breathing treatment. Hopefully counts will look good and we can all exhale.
It has been an hilarious experience, and now, just for fun, maybe we should do the whole process again but in reverse. All in favour of our deep-South David becoming a minion of her Majesty the Queen, say "aye".
As for Scotty boy, well he's an enigma for sure. One day he's duracelling up and down the pool, devouring everything in site, spouting forth weird and wonderful facts (we call him 'Oracle', he wasn't that way prior to the cranial radiation, something mystical happened in that human microwave!!!!) and chattering non-stop. The next, he's doing the dying swan routine.
He has his monthly appointment on Thursday and will also have his port flushed and a breathing treatment. Hopefully counts will look good and we can all exhale.
Monday, June 8, 2009
Its been one year since Callum left us. Scott talks about him all the time, sometimes he's broken-hearted and other times he laughs and giggles at his 'highlander' daddy. Derry never mentions him. This morning Scott was reminiscing and coming out with some of his favourite doric phrases. "Awa and bile yer heed maither" (be off with you mum, and boil your head), "Ken fit like" (you know what I mean) and "Foos yer doos" (how are you doing).
Kevin is still very ill from the stroke he suffered a few weeks after Callum died. He's out of hospital but still needs full time care. He cant talk except to say, "aye". He seems to live in a world of confusion with no signs of recovery. I get so choked up when I think about Kev, we were incredibly close.
I still cant believe that I'll never again be able to pick them up, dust them off or put their world's to rights. More importantly, I'll never again hear Callum's interpretation of why the Giza monuments were built or what he thought of Margaret Thatcher and the Poll Tax. LOL.
Saturday, June 6, 2009
Friday, June 5, 2009
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