Saturday, November 22, 2003
Day +38 We are 48 hours and counting for John to be released on Monday. Today they are filling him up with blood to help boost his hemoglobin and give him more energy. We have Auntie Aud visiting and she is making a pot of beans with smoked ham hock at John's request. After the unit of blood is finished infusing John will be IV free until he returns tonight for hydration, even though John is drinking the required 2 liters of fluid a day. Better to be safe than sorry where John's kidneys are concerned. Our plan is to have dinner in Aud's room and watch a movie. It will give him a taste of freedom he really deserves after nearly 8 weeks as an inpatient.
Once John is released he will only be required to go to clinic twice a week to have his blood checked. If all goes well and the GVH stays away or in control John and I really are hoping he will be released back into Dr. Wolf's care early and we will shooting to return home by the first of the year. This is just our hope. We know of other patients that have been returned to home early and we really hope John is one of them.
Once John is released he will only be required to go to clinic twice a week to have his blood checked. If all goes well and the GVH stays away or in control John and I really are hoping he will be released back into Dr. Wolf's care early and we will shooting to return home by the first of the year. This is just our hope. We know of other patients that have been returned to home early and we really hope John is one of them.
Friday, November 21, 2003
Day +37 Tap...Tap...Tap...This is the sound of John's foot as he waits patiently to be released. Today they are taking John off all IV medications. John will be given IV hydration at night only and be released Monday as long as he stays as healthy as is is right now. This weekend while he is not tethered to an IV pole John will be free to wander the campus, perhaps even help Auntie Aud cook stew and corn beef.
Thursday, November 20, 2003
Day +36 John is still here in his lovely room on the BMT unit. I have to say we are really disappointed that this update isn't telling those who check the Nitty Gritty that John is getting out tomorrow. Everyone including the nurses are shocked that John is not leaving tomorrow. At this point the earliest he can leave will be Monday or Tuesday. We are trying to be brave about this, but I have to admit right now I am so homesick for Dr. Wolf that it is hard not to cry. While we appreciate and recognize that Dr. Stein is a brilliant oncologist he is not very forth coming with explanations or demonstrative. I know that he must have some reason for keeping John here instead of sending him to the village, but he doesn't tell us. On the other hand I know that Dr. Wolf would at least squeezed John's shoulder while saying, 'sorry guy, I have to keep you so you are safe'. I guess what I am missing is the squeeze. It is hard to see other patients who came after John now going home or to the village. 7 weeks is a long time to be in the hospital.
Hopefully in the near future Jen is planning to set up more portals to the blog so you will get Pop's (John's dad) take on being here at the City of Hope. I guess he got a couple e-mails of concern wondering if he is doing okay here too. So as of this writing Pop is fine, working hard and has a mild cold. I am sure you will read his perspective soon.
John is a bit more reluctant to write a journal this time...he just wants to get better and back to his normal 21 year old life.
This weekend Aud is coming down for a visit. She was suppose to come a couple weeks ago and had to cancel because she got the flu. We really are glad she didn't get it while she was here. As it is I constantly am using those hand wipes for fear of getting a germ and not being able to visit with John. This weekend I am looking forward to my sister's visit. I am hopeful (and I know she reads this everyday :) so it is a poorly concealed hint) she will help me make beef stew for John and corn beef for me.
Now for continuing squirrel saga: I know that it is time to begin weaning the squirrels from their daily peanut and bird food habit as the days HAVE to be numbered when John gets transferred out of here. I purchased this special 'wild' squirrel food. It is loaded with dry corn, a few peanuts and sunflower seeds. By the way it is also 'vitamin' enriched so I am not really too convinced this is officially 'wild' food, but I like to think I am doing the right thing. When I first saw it on the shelf I was surprised because I was not aware that squirrels liked corn kernels, but I want to do what is best for their health so I buy this instead of more bird seed. The plan is to give less and less food until they learn to go to someone else's window for food. I filled the bird house with the new and improved 'wild' food and a couple minutes later I see one of our regulars and she is digging through the feeder looking for peanuts and sunflower seeds. Her little paws are scooping out and throwing all the corn kernels out until she comes across the nut she wants. After a day of different squirrels taking their turn eating there is a huge pile of corn kernels under the tree. I thought at first it would be okay since the skunks would probably come by and eat what the squirrels drop (yes I hate to admit, skunks come by each night too...and a little mouse... but I didn't want to say anything for fear readers would think I was one of those future 100 cat household nuts). But no! The skunks have put their noses in the air to the 'wild' 'vitamin' enriched corn kernels too. I guess the animals here are so spoiled they will not tolerate 'wild' food. Consequently I spent a good part of the morning cleaning the kernels off the ground and decided it will be easier to just give less peanuts each day.
Hopefully in the near future Jen is planning to set up more portals to the blog so you will get Pop's (John's dad) take on being here at the City of Hope. I guess he got a couple e-mails of concern wondering if he is doing okay here too. So as of this writing Pop is fine, working hard and has a mild cold. I am sure you will read his perspective soon.
John is a bit more reluctant to write a journal this time...he just wants to get better and back to his normal 21 year old life.
This weekend Aud is coming down for a visit. She was suppose to come a couple weeks ago and had to cancel because she got the flu. We really are glad she didn't get it while she was here. As it is I constantly am using those hand wipes for fear of getting a germ and not being able to visit with John. This weekend I am looking forward to my sister's visit. I am hopeful (and I know she reads this everyday :) so it is a poorly concealed hint) she will help me make beef stew for John and corn beef for me.
Now for continuing squirrel saga: I know that it is time to begin weaning the squirrels from their daily peanut and bird food habit as the days HAVE to be numbered when John gets transferred out of here. I purchased this special 'wild' squirrel food. It is loaded with dry corn, a few peanuts and sunflower seeds. By the way it is also 'vitamin' enriched so I am not really too convinced this is officially 'wild' food, but I like to think I am doing the right thing. When I first saw it on the shelf I was surprised because I was not aware that squirrels liked corn kernels, but I want to do what is best for their health so I buy this instead of more bird seed. The plan is to give less and less food until they learn to go to someone else's window for food. I filled the bird house with the new and improved 'wild' food and a couple minutes later I see one of our regulars and she is digging through the feeder looking for peanuts and sunflower seeds. Her little paws are scooping out and throwing all the corn kernels out until she comes across the nut she wants. After a day of different squirrels taking their turn eating there is a huge pile of corn kernels under the tree. I thought at first it would be okay since the skunks would probably come by and eat what the squirrels drop (yes I hate to admit, skunks come by each night too...and a little mouse... but I didn't want to say anything for fear readers would think I was one of those future 100 cat household nuts). But no! The skunks have put their noses in the air to the 'wild' 'vitamin' enriched corn kernels too. I guess the animals here are so spoiled they will not tolerate 'wild' food. Consequently I spent a good part of the morning cleaning the kernels off the ground and decided it will be easier to just give less peanuts each day.
Wednesday, November 19, 2003
Day + 35 We are on a count down to finally getting John on out patient status. Today he begins the most important drug orally, Cyclosporin. They are quite large pills and as I have written before John must drink at least two liters of fluids to help flush his kidneys as Cyclosporin can cause kidney failure. However, it is an important anti-rejection drug. Yesterday they started him on MMF which is an anti-GVH drug and John has been tolerating all the pills like a champ. Today he began physical therapy, says they tired him out, but anyone who goes to physical therapy has half their body out the front door of the unit. Time will tell and we will notify everyone when he gets out.
Our plans for Thanksgiving are tenitive, we hope to rent a room at the Residence Inn at Marriott where there is a full kitchen. John plans on taking the breast bone out of the turkey and roasting it. He says by doing this it cuts the cooking time of the bird. Jennifer and Scott plan on coming down to keep us company.
I am sure many of you are wondering where is Scott in all of this. Well he is currently holding down the fort in Albany for us. We are so lucky that Scott graduated UC Davis this summer (official grad date is December 14 which John and I are planning on flying up to attend) and he is taking care of the three cats, Kelly, Nico and Nemo, the yard, the house, the bills, and the variety of stray cats on the block. John and I will never be able to show enough gratitude to Scott for being willing to put his life on hold long enough to help us. Scott is currently looking for a job (possibly a law clerk) for a couple years until he is ready to go to law school. We hope it will be Fall of 2004 or 2005. Depends which was wind blows him.
Our plans for Thanksgiving are tenitive, we hope to rent a room at the Residence Inn at Marriott where there is a full kitchen. John plans on taking the breast bone out of the turkey and roasting it. He says by doing this it cuts the cooking time of the bird. Jennifer and Scott plan on coming down to keep us company.
I am sure many of you are wondering where is Scott in all of this. Well he is currently holding down the fort in Albany for us. We are so lucky that Scott graduated UC Davis this summer (official grad date is December 14 which John and I are planning on flying up to attend) and he is taking care of the three cats, Kelly, Nico and Nemo, the yard, the house, the bills, and the variety of stray cats on the block. John and I will never be able to show enough gratitude to Scott for being willing to put his life on hold long enough to help us. Scott is currently looking for a job (possibly a law clerk) for a couple years until he is ready to go to law school. We hope it will be Fall of 2004 or 2005. Depends which was wind blows him.
Tuesday, November 18, 2003
Day +34 Not really much to report since we got the good remission news last night. John made Dr. Stein chuckle this morning which in itself is a feat. Dr. Stein has been taking John each day off of IV medications and adding them to his oral medications. Last night they changed John’s Pepcid (which is available over the counter), and quite frankly the easiest drug to tolerate to orally. John was giving Dr. Stein a ribbing about how he wasn’t challenging John’s stomach enough so I think he is going to take John off of one of the important medications today to see how he does. We are on a countdown if all goes well John will be released Friday or Monday. Yeah!!!!
Dr. Stein is a quiet genius. John is lucky that Dr. Stein for whatever reason was put in his life path. For example, Dr. Stein did not delay treatment for GVH or CMV. Because of this neither of these conditions has gotten the better of John (knock on wood and crossing myself at the same time). I mentioned a bit ago about the woman who had the perfect match and was an inpatient for over 75 days. She was all set to return to the Bay Area, hoping to go to Dr. Wolf’s capable hands around Thanksgiving and I ran into her husband this morning, without her. The GVH is out of control and she returned to inpatient status. I feel so bad for her and her husband. I really do not know the whole story, but I know that there was a delay in putting her on prendisone and she did get a CMV related pneumonia. So to say the lease I am grateful for Dr. Stein’s aggressive manner and staying on top of any potential problems John can and will encounter.
John and I realize that there is a potential up hill battle to full recovery. But we also know that John has been put in the best of medical hands. Not that this other woman hasn’t gotten great treatment; she has many factors that add to her list of potential problems, she is older than John, which is probably the biggest obstacle for her to overcome. I know she has many people praying for her, it just proves how arbitrary cancer is and how no matter what “perfect” match is offered for one reason or another some have problems others don’t. By the way, the little boy next door to John after 110 days was released from the hospital yesterday. Miracles do happen; this kid almost lost his fight from liver failure. Last night he slept in comfort away from the hospital, the beeping IV and prying eyes or caring nurses.
Dr. Stein is a quiet genius. John is lucky that Dr. Stein for whatever reason was put in his life path. For example, Dr. Stein did not delay treatment for GVH or CMV. Because of this neither of these conditions has gotten the better of John (knock on wood and crossing myself at the same time). I mentioned a bit ago about the woman who had the perfect match and was an inpatient for over 75 days. She was all set to return to the Bay Area, hoping to go to Dr. Wolf’s capable hands around Thanksgiving and I ran into her husband this morning, without her. The GVH is out of control and she returned to inpatient status. I feel so bad for her and her husband. I really do not know the whole story, but I know that there was a delay in putting her on prendisone and she did get a CMV related pneumonia. So to say the lease I am grateful for Dr. Stein’s aggressive manner and staying on top of any potential problems John can and will encounter.
John and I realize that there is a potential up hill battle to full recovery. But we also know that John has been put in the best of medical hands. Not that this other woman hasn’t gotten great treatment; she has many factors that add to her list of potential problems, she is older than John, which is probably the biggest obstacle for her to overcome. I know she has many people praying for her, it just proves how arbitrary cancer is and how no matter what “perfect” match is offered for one reason or another some have problems others don’t. By the way, the little boy next door to John after 110 days was released from the hospital yesterday. Miracles do happen; this kid almost lost his fight from liver failure. Last night he slept in comfort away from the hospital, the beeping IV and prying eyes or caring nurses.
Monday, November 17, 2003
DAY +33 PS
JOHN IS IN REMISSION!!! Dr. Stein just stopped by to say the BMB is clean and we will know at the end of the week whose cells are growing in John's marrow. It is a relief to know John has no cancer cells traveling around.
JOHN IS IN REMISSION!!! Dr. Stein just stopped by to say the BMB is clean and we will know at the end of the week whose cells are growing in John's marrow. It is a relief to know John has no cancer cells traveling around.
Day +33 Not much to report today. John is still doing great. Eating well could be drinking more fluids, but he says he isn’t thirsty since he gets so many fluids from the IVs. They will begin physical therapy tomorrow, his legs are strong because he walks around the unit or we go a feed the fish, but his arm strength is weaker. Besides it is just another hoop to have to jump through to get out of here.
To fight the boredom today I went and got John a latch hook rug for John to work on. It is of a white Siberian tiger (like the one that bit Roy) surrounded by jungle leaves.
The last week I kept thinking the squirrels were storing up extra for the winter since I would only have to fill up the birdhouse once a week. Now I have to top it off a couple times a week, and this includes supplemental peanuts each morning and afternoon. Actually the squirrels are looking a little cubby, but they are happy. Last Friday night when I was closing the shades to the room at midnight I saw why our food has gone missing. There was a possum that has joined the “Becca has a soft spot for every little stray creature” gravy train. Well this guy is such a pig!!! And he isn’t cute about eating with one peanut in his precious little paws at a time. No, this creature is licking all the seeds and nuts out with his long, slobbery tongue. Now where I have the birdfeeder is on the tree (yes the burning bush tree, which its leaves are currently turning a beautiful orange. Note for Laurie: Finally fall colors!! They just better not have cherry blossoms trees in the spring here because I plan on seeing them in DC with you!) outside John’s window, which is in the coy pond garden. The garden is locked on weekends so this possum each night is licking the house clean. Last night (Sunday) he came back and licked the last bits the squirrels and birds didn’t take. So first thing this morning I had to go to the tree, lift the spit contaminate house (yes I thought I was done with spit too) and give more food. I have a feeling now every morning until we move the feeder this is what John will have fun watching me do: balancing on a chair trying to fill the feeder and not get any drips on me! I guess what the reader who gets this far on today’s blog is that John is boring again and I am stuck reporting the minute details of the happenings at City of Hope wild animal kingdom. Perhaps tomorrow a witty story about the leaf blowers.
To fight the boredom today I went and got John a latch hook rug for John to work on. It is of a white Siberian tiger (like the one that bit Roy) surrounded by jungle leaves.
The last week I kept thinking the squirrels were storing up extra for the winter since I would only have to fill up the birdhouse once a week. Now I have to top it off a couple times a week, and this includes supplemental peanuts each morning and afternoon. Actually the squirrels are looking a little cubby, but they are happy. Last Friday night when I was closing the shades to the room at midnight I saw why our food has gone missing. There was a possum that has joined the “Becca has a soft spot for every little stray creature” gravy train. Well this guy is such a pig!!! And he isn’t cute about eating with one peanut in his precious little paws at a time. No, this creature is licking all the seeds and nuts out with his long, slobbery tongue. Now where I have the birdfeeder is on the tree (yes the burning bush tree, which its leaves are currently turning a beautiful orange. Note for Laurie: Finally fall colors!! They just better not have cherry blossoms trees in the spring here because I plan on seeing them in DC with you!) outside John’s window, which is in the coy pond garden. The garden is locked on weekends so this possum each night is licking the house clean. Last night (Sunday) he came back and licked the last bits the squirrels and birds didn’t take. So first thing this morning I had to go to the tree, lift the spit contaminate house (yes I thought I was done with spit too) and give more food. I have a feeling now every morning until we move the feeder this is what John will have fun watching me do: balancing on a chair trying to fill the feeder and not get any drips on me! I guess what the reader who gets this far on today’s blog is that John is boring again and I am stuck reporting the minute details of the happenings at City of Hope wild animal kingdom. Perhaps tomorrow a witty story about the leaf blowers.
Sunday, November 16, 2003
Day +32 Really not much to report today. John ate most of the bratwurst and Franco America spaghetti I made yesterday. Hardly complained at all, of course how could I go wrong with the specific instructions including the total minutes boiling and frying? Today I am making parmesano noodles and hamburgers. Because he is eating so much better Dr. Stein is decreasing his TPN (food in a bag), which is making John have a better appetite. And since he is beginning to have a better appetite Dr. Stein put John on a couple more oral medicines. As far as the CMV anti-viral even if John proves he can be released at the end of this week he will still have to have this medicine IV. If he is doing great next week they will change that to oral medication. All I know is John and I have a ton of movies to catch up with once he is out of here.
Can’t remember if I mentioned when John had his BMB on Friday that John asked me to take pictures. As soon as we develop them I will see if Jennifer can post them on the main website. I am not sure we really want John to see them, pretty intense, but he thought after 15 plus BMB he should know what they are doing back there.
Can’t remember if I mentioned when John had his BMB on Friday that John asked me to take pictures. As soon as we develop them I will see if Jennifer can post them on the main website. I am not sure we really want John to see them, pretty intense, but he thought after 15 plus BMB he should know what they are doing back there.
