Monday 25 February 2013
Monday 18 February 2013
Update on Mary
Mom's latest blood counts were not what we wanted to see. Her white count was very low, even though she had just finished her break week. She was still allowed to get her chemotherapy, but only just. Please pray that her white counts will rise so that her chemo dose does not have to be reduced again.
Also, her cancer count was up. It wasn't a dramatic rise, but it has been steadily going up the last few months, and it may be a sign that the chemotherapy she is currently on (Gemzar) is not working as well as it was. She has other options, but they will be harder on her body and they will restrict her activity and reduce her quality of life. She would like to be able to continue on this easier type of chemotherapy for as long as possible.
Her doctor recently referred her to talk to a radiologist again to evaluate whether the tumor has shrunk enough to make radiation possible. We don't have high hopes, but we would love to be wrong!
And, some very happy news- Emily is engaged! She will get married in August. We need all of your prayers that Mom will not only be able to attend Emily's wedding, but that she will be able to feel great and fully enjoy herself. We want to see her dancing until Midnight!
Also, her cancer count was up. It wasn't a dramatic rise, but it has been steadily going up the last few months, and it may be a sign that the chemotherapy she is currently on (Gemzar) is not working as well as it was. She has other options, but they will be harder on her body and they will restrict her activity and reduce her quality of life. She would like to be able to continue on this easier type of chemotherapy for as long as possible.
Her doctor recently referred her to talk to a radiologist again to evaluate whether the tumor has shrunk enough to make radiation possible. We don't have high hopes, but we would love to be wrong!
And, some very happy news- Emily is engaged! She will get married in August. We need all of your prayers that Mom will not only be able to attend Emily's wedding, but that she will be able to feel great and fully enjoy herself. We want to see her dancing until Midnight!
Sunday 17 February 2013
Mr. Mustache
The boys received some very creative valentines this year, complete with a fun fake mustache for each guy to wear. The older boys thought it was really cool...Kenny didn't exactly cooperate.
Thank you Evan, Micah and Natalie!
Thank you Evan, Micah and Natalie!
Wednesday 6 February 2013
Target Gangnam Style
We went back to Target. That was my mistake. I never learn.
This time we really had to go because Tommy needed new shoes, and I don't meant wanted new shoes, I mean his toes were actually poking out through the tip of his shoes, and it's cold outside. The bigger mistake I made was deciding to try on jeans. I also needed new jeans, because after you have a baby sometimes your clothes don't fit right anymore even if you lose all your excess "baby weight" thanks to a nasty bout of food poisoning. And so, we have a new Target dressing room story:
As soon as we entered the dressing room, Tommy ran up to the mirror, shouted "Oppan Gangnam Style!" and began doing a little Gangnam gallup, while continuing the song.
This is what the woman in the dressing room next to us heard:
This time we really had to go because Tommy needed new shoes, and I don't meant wanted new shoes, I mean his toes were actually poking out through the tip of his shoes, and it's cold outside. The bigger mistake I made was deciding to try on jeans. I also needed new jeans, because after you have a baby sometimes your clothes don't fit right anymore even if you lose all your excess "baby weight" thanks to a nasty bout of food poisoning. And so, we have a new Target dressing room story:
As soon as we entered the dressing room, Tommy ran up to the mirror, shouted "Oppan Gangnam Style!" and began doing a little Gangnam gallup, while continuing the song.
This is what the woman in the dressing room next to us heard:
"Oppan Gangnam style! Heeeey Sexy Lady...Mom! Look! You got new underwear! Wow! Look at them!"
I was mortified. And yes, I heard laughing.
In related news, thanks to "NASA Johnson Style" we have convinced him the lyrics are "Hey Science Lady" instead. So much better.
And now, here are some pics of Tommy playing Bananagrams with Jeff.
In related news, thanks to "NASA Johnson Style" we have convinced him the lyrics are "Hey Science Lady" instead. So much better.
And now, here are some pics of Tommy playing Bananagrams with Jeff.
Saturday 2 February 2013
Wild Week
On Monday Kenny came down with a little cold, which was a huge bummer because it meant missing all of our activities this week, but when you have a sick child you have to stay home, so stay home we did. It made for great fun with two older brothers who had tons of energy and only a very small place to exude it. But then on Wednesday Nic started to act a little off, and when he refused to eat dinner we knew something was up. He felt rather warm too, so we took his temperature and low and behold, 104°F. A temp that high means we have to get him to the ER as fast as we can, so we grabbed the hospital bag (I keep one packed), bundled him up, and he and Jeff set off for the ER.
I was sure they were coming home that night, because lately on ER trips he's been getting his x-rays, fluids, antibiotics and getting home in about three hours. Not bad. This time the doctor felt it was wisest for us either to check him in overnight or to come back to the ER the next day for further procedures. Since his IV was set we felt the kindest thing to do was stay and get the medicine in the morning instead of coming back and putting Nic through a second IV placement. Of course, one day in the hospital ended up turning into two because his fever stayed so high, and they suspected he might have some other complications. It turned out he was fine, he tested positive for RSV, a virus that is quite common and mostly effects infants and young children. The nurse was surprised he had it because they rarely see toddler with RSV in the hospital, but his sickle cell makes his immune system less responsive than it should otherwise be. The unfortunate thing about having RSV was that he was on isolation, which meant he couldn't play in the play room or walk the halls at all. I usually like to get him a little exercise to make sure he doesn't develop sickle-related lung complications, so instead we blew lots of bubbles and had the play therapist come in and set up a play area on the floor of his room to entice him out of bed. He finally was able to leave the hospital late Friday afternoon. At that point he was so miserable and tired, it was awful. We could have stayed in the hospital had we found that preferable, but the doctor told us he was willing to release Nic as long as we keep bringing him in to see one of the pediatricians in his group to get his lungs checked. We had an appointment today, and we will probably have to go in Monday as well, but it is far better than having to stay at the hospital, so we'll take it. It is hard on the whole family when Nic is in the hospital. Everything is thrown off, the parent who stays is exhausted from lack of sleep, Tommy is shuffled around, and Jeff misses work (thank goodness for sick leave). And, our hospital co-pay is not a pretty thing, so I will take the doctor co-pay/hassle of driving there over the hospital any day!
I wouldn't want to give the impression that we think Nic's hospital is second-rate. It is a very nice hospital, and they take good care of him and us while we are there, but it is still a hospital and home is always better. Honestly, for being a hospital it really is quite nice. The hospital has a new Ronald McDonald family room, guest rooms, and shower area, so it really is equipped to make families comfortable. All of the pediatric units have a bed for parents, and one parent is highly encouraged to be there at all times, so we didn't need to use the guest rooms, but the family area was wonderful. It is connected to the playroom, and has comfy couches, a TV, games, books, a computer area, and a kitchen with snacks and drinks, a fridge and a microwave. They also had toiletries and such, which came in handy because Jeff ended up going straight from the hospital to work and back two days in a row. I brought him new clothes, but I forgot soap!
We were very grateful to all be under one roof on Friday night. Now we are focusing on getting Nic up to speed (Kenny's pretty much recovered aside from a few lingering coughs). It snowed this weekend and Tommy got to get out with Jeff a bit...the photographic evidence follows.
I was sure they were coming home that night, because lately on ER trips he's been getting his x-rays, fluids, antibiotics and getting home in about three hours. Not bad. This time the doctor felt it was wisest for us either to check him in overnight or to come back to the ER the next day for further procedures. Since his IV was set we felt the kindest thing to do was stay and get the medicine in the morning instead of coming back and putting Nic through a second IV placement. Of course, one day in the hospital ended up turning into two because his fever stayed so high, and they suspected he might have some other complications. It turned out he was fine, he tested positive for RSV, a virus that is quite common and mostly effects infants and young children. The nurse was surprised he had it because they rarely see toddler with RSV in the hospital, but his sickle cell makes his immune system less responsive than it should otherwise be. The unfortunate thing about having RSV was that he was on isolation, which meant he couldn't play in the play room or walk the halls at all. I usually like to get him a little exercise to make sure he doesn't develop sickle-related lung complications, so instead we blew lots of bubbles and had the play therapist come in and set up a play area on the floor of his room to entice him out of bed. He finally was able to leave the hospital late Friday afternoon. At that point he was so miserable and tired, it was awful. We could have stayed in the hospital had we found that preferable, but the doctor told us he was willing to release Nic as long as we keep bringing him in to see one of the pediatricians in his group to get his lungs checked. We had an appointment today, and we will probably have to go in Monday as well, but it is far better than having to stay at the hospital, so we'll take it. It is hard on the whole family when Nic is in the hospital. Everything is thrown off, the parent who stays is exhausted from lack of sleep, Tommy is shuffled around, and Jeff misses work (thank goodness for sick leave). And, our hospital co-pay is not a pretty thing, so I will take the doctor co-pay/hassle of driving there over the hospital any day!
I wouldn't want to give the impression that we think Nic's hospital is second-rate. It is a very nice hospital, and they take good care of him and us while we are there, but it is still a hospital and home is always better. Honestly, for being a hospital it really is quite nice. The hospital has a new Ronald McDonald family room, guest rooms, and shower area, so it really is equipped to make families comfortable. All of the pediatric units have a bed for parents, and one parent is highly encouraged to be there at all times, so we didn't need to use the guest rooms, but the family area was wonderful. It is connected to the playroom, and has comfy couches, a TV, games, books, a computer area, and a kitchen with snacks and drinks, a fridge and a microwave. They also had toiletries and such, which came in handy because Jeff ended up going straight from the hospital to work and back two days in a row. I brought him new clothes, but I forgot soap!
We were very grateful to all be under one roof on Friday night. Now we are focusing on getting Nic up to speed (Kenny's pretty much recovered aside from a few lingering coughs). It snowed this weekend and Tommy got to get out with Jeff a bit...the photographic evidence follows.
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