Well, today is Day -8, meaning 8 more days until Gracie gets her new cells. :)
This is uncle Mack. I completely forgot to fill you all in on the speech, occupational, and physical therapy stuff! First off, how great is it that Sarah gets to learn and do all of these therapies that promote child development! She's having fun learning, and it'll be great for future babies! :)
In PT Gracie is learning to stand flat on her feet (she likes her tippy-toes), get up on her knees, and also go from a laying down to a sitting position on her own. She hasn't mastered all of these, but Sarah said she has really made progress.
When I left Minnesota, Gracie was almost clapping on her own. Now she can clap on command. She definitely understands what "no" means, and she has started to smile and shake her head "no" with a big grin on her face when mommy says no... Charming her mother to get her way. I have no idea where she learns these things. :) She's now learning to wave hello and bye bye. :)
Tonight when I was on the phone with Sarah, I heard Gracie yapping in the background as usual. :) Then I heard a very clear and intentional "Ma-Ma!" It was absolutely at the top of my list of the cutest things I've ever heard. Sarah said she's been saying that for a few days. Charmer that Gracie is, she says "ma-ma" all night until 3 AM because she doesn't want to go to sleep. Saying "ma-ma" makes mommy weak in the knees, so I have a feeling Gracie can do whatever she wants. :) Next we're working on some version of dada. :)
As far as how Gracie is doing, it sounds like she's doing great. I believe today is day 2 on Busulfan. She's tolerating it well, but she has lost some of her appetite. Also, clearly her sleep patterns are out of whack. I guess when you are in a room and don't go outside, the concepts of night and day sort of lose meaning. :) Weird, eh? She gets and infusion of Busulfan 4 times per day (every 6 hours), that sort of dictates her internal clock and rhythm.
Oh, Sarah also got to go outside for a bit today, which is great news. Sounds like Gracie did fine while mommy walked down to a coffee shop on the corner. Sarah said the weather is amazing right now, and she enjoyed getting out for a bit.
On the whole, Sarah sounded in much better spirits today. That is a relief for Uncle Mack. Gracie and Jimmy also sound like all is going well for now.
As always, thanks for checking up on Gracie. Gracie's whole family is so appreciative and lucky to have such a wonderful support group and community. Thanks for all of your prayers, comments and messages in the guestbook. Oh, and Sarah loved that her nurses from Shands signed the guestbook. She sais that she left your email addresses in Lake City on accident, and she's glad that you guys found her. :) Thanks again!
Wednesday, April 30, 2008
Register - National Bone Marrow Registry Program
Hey all. Just wanted to pass along some info about FREE registration for the Nation Bone Marrow Donor Program that I saw on Lauren's mom's yahoo site. http://groups.yahoo.com/group/laurenslife/
May 5th through the 19th The National Bone Marrow Registry Program isThe registry is a great way to help other folks with life threatening illnesses like Gracie and Lauren, possibly giving them a second lease on life. As mentioned above, it requires only a cheek swab (no blood or needles) and a bit of paperwork, and it FREE from 5/5 to 5/19.
letting people join the registry for FREE! Normally, they charge the
cost of processing your cheek swab (yes, that is all you have to do
besides some paperwork) to enter all of your info in the system.
Anyone in good health ages 18-60 is allowed to join the registry.
Here are some facts about joining the registry that you need to know:
When you sign up, you will be sent a packet that includes the
materials to swab your cheek and return with the appropriate
paperwork. The NMDP will take the items you send them and use them to
enter you into the registry.
Next... you wait. What are the chances you will be chosen? About the
same as winning the lottery. That's right, you may never get 'the
call'. However, if you do, you would have the chance to save the life
of another person... to be their hero.
If you are ever considered a 'match', you will have the chance to say
NO at any point in the process. If you stay a 'yes' then you will
have a physical done to make sure you are healthy and the other
person's doctor will decide what type of transplant s/he needs. Many
transplants these days are done from blood taken durring a Peripheral
Blood Stem Cell Donation. Some people will need to give actual marrow
which is taken under general anesthesia.
It would be so amazing to be able to save another life in honor of
the person who donated their cells to Lauren.
Tuesday, April 29, 2008
Tuesday Night Update
Hi everyone. Uncle Mack again... I just got off of the phone with Sarah so I thought I'd leave an update for you. A play be play of our phone call is below, but if you are pressed for time, here's the readers digest version:
In a nutshell: so far, so good - Gracie is doing well. Looking forward to better continuity across the coming days, and everyone is in need of a little more rest.
1. How is Gracie doing? Gracie is doing much better on the Busulfan than she was doing on Campath. I guess she just tolerates it better. It's the drug that typically makes them not want to eat. Sarah said that her appetite came back and that she eating and nursing like crazy. I guess it may be due to getting off of the Campath. This is also the drug that is supposed to make her lose her hair. Waaaa. :(
Gracie has been needy though, Sarah says. She wants to be held constantly, and Sarah thinks it may have to do with the amount of traffic in the room. Which leads to #2...
2. The BMT unit staff. So far, Sarah says that there are lots of different people coming in and out of the room. Across the next day or so, Sarah and Jimmy get to pick who they want to be their day nurse and their night nurse. I think that's pretty cool. It would certainly boost confidence in their capabilities if you get to pick your nurses. It will also reduce the traffic, and the continuity will allow Gracie to become more familiar with her nurses and ease some of her anxiety.
3. How is Sarah doing? Sarah is tired, a little homesick, and a bit stir-crazy. She essentially sleeps when Gracie sleeps, which sounds like not very often and not for very long. She misses all of you, and she especially enjoyed the church video you all sent. As you certainly know if you've spent much time in a hospital, time passes veeeeerrryyyyyy sllllloooowwwllyyyyy.... Sarah's looking forward to a) getting back to RMH, and then b) getting back to her home in Lake City. There isn't much room in their little hospital cell to get around, and Gracie is pretty demanding these days, so no time to read, chat, blog, etc...
After they get settled and have a dedicated care team, they will probably be better able to schedule time on and off of the unit for fresh air, naps, etc.... When Noni gets here, I'm sure that will help out quite a bit. In the meantime, Sarah said that someone sent her vitamin C that she's taking to keep her immune system strong. So thanks for that too!
4. The room. Uncle Mack tried to pull some strings through his previous employer, where folks have relationships with the hospital administrators, to get them into a bigger room. Unfortunately, it didn't work out. We do have friends in high places, but they happen to be at the wrong hospital... Oh well. I suppose it won't hurt for the staff to know that Gracie is a VIP in some Fairview administrator's eyes.
As it turns out, my contact's contact runs the oncology program at a different hospital that is also part of the Fairview system, but doubtful that person has the influence at UMinn Fairview Hospital. On the bright side, their room has a Nintendo Wii in it (Wiiiii want to play - for those of you who have seen the commercial), and Sarah says they play Wii tennis and golf and other games when they can. She says its lots of fun and allows she and Jimmy to get up and move around a little bit. I guess Uncle Mack will have to buy them a Wii when they go back to Lake City...
Sarah and Jimmy are going to upload some recent pictures soon, and Sarah will leave a mommy update sometime in the next few days when she get a few minutes. I think that's pretty much it for now. They really miss everyone, and thank you again for your warm wishes, thoughts, and prayers.
In a nutshell: so far, so good - Gracie is doing well. Looking forward to better continuity across the coming days, and everyone is in need of a little more rest.
1. How is Gracie doing? Gracie is doing much better on the Busulfan than she was doing on Campath. I guess she just tolerates it better. It's the drug that typically makes them not want to eat. Sarah said that her appetite came back and that she eating and nursing like crazy. I guess it may be due to getting off of the Campath. This is also the drug that is supposed to make her lose her hair. Waaaa. :(
Gracie has been needy though, Sarah says. She wants to be held constantly, and Sarah thinks it may have to do with the amount of traffic in the room. Which leads to #2...
2. The BMT unit staff. So far, Sarah says that there are lots of different people coming in and out of the room. Across the next day or so, Sarah and Jimmy get to pick who they want to be their day nurse and their night nurse. I think that's pretty cool. It would certainly boost confidence in their capabilities if you get to pick your nurses. It will also reduce the traffic, and the continuity will allow Gracie to become more familiar with her nurses and ease some of her anxiety.
3. How is Sarah doing? Sarah is tired, a little homesick, and a bit stir-crazy. She essentially sleeps when Gracie sleeps, which sounds like not very often and not for very long. She misses all of you, and she especially enjoyed the church video you all sent. As you certainly know if you've spent much time in a hospital, time passes veeeeerrryyyyyy sllllloooowwwllyyyyy.... Sarah's looking forward to a) getting back to RMH, and then b) getting back to her home in Lake City. There isn't much room in their little hospital cell to get around, and Gracie is pretty demanding these days, so no time to read, chat, blog, etc...
After they get settled and have a dedicated care team, they will probably be better able to schedule time on and off of the unit for fresh air, naps, etc.... When Noni gets here, I'm sure that will help out quite a bit. In the meantime, Sarah said that someone sent her vitamin C that she's taking to keep her immune system strong. So thanks for that too!
4. The room. Uncle Mack tried to pull some strings through his previous employer, where folks have relationships with the hospital administrators, to get them into a bigger room. Unfortunately, it didn't work out. We do have friends in high places, but they happen to be at the wrong hospital... Oh well. I suppose it won't hurt for the staff to know that Gracie is a VIP in some Fairview administrator's eyes.
As it turns out, my contact's contact runs the oncology program at a different hospital that is also part of the Fairview system, but doubtful that person has the influence at UMinn Fairview Hospital. On the bright side, their room has a Nintendo Wii in it (Wiiiii want to play - for those of you who have seen the commercial), and Sarah says they play Wii tennis and golf and other games when they can. She says its lots of fun and allows she and Jimmy to get up and move around a little bit. I guess Uncle Mack will have to buy them a Wii when they go back to Lake City...
Sarah and Jimmy are going to upload some recent pictures soon, and Sarah will leave a mommy update sometime in the next few days when she get a few minutes. I think that's pretty much it for now. They really miss everyone, and thank you again for your warm wishes, thoughts, and prayers.
New MPS Links
Just a quick post to point out our new MPS links. Look a little to the right and scroll down a few clicks, and you'll find links to Gracie's friends, doctors, hamburger clowns, and folks who can tell you ways to help kids who really need a hand. We hope you'll surf some of these when you have a little free time.
Monday, April 28, 2008
Monday Night Update
This is Uncle Mack. I spoke to Sarah a little while ago, and she sounded pretty good. She said Gracie seems fairly normal, playing and all. She also ate and entire thing of sweet potatoes today. :) The switched her antibiotic from Vancomycin to a less intense drug. It caused her to break out in a rash, but Sarah said they took care of it. They have also put her on a drug to control her blood pressure. Again, they say this is all within the bounds of "normal." It's just a little jarring to think about.
I just love this picture!
Tomorrow, she starts her first real chemo drug, Busulfan at 4:00 AM!!! Ugh! Please send Gracie your thoughts and prayers, as we hope these drugs do what they are supposed to do, reduce her immune system to a point that it won't attack the new cells that are introduced to her body during the transplant. Essentially, we want the drugs to weaken her so that the new cells will win the "battle" over which cells will control of her body. W are rooting for the new, healthy cells. :)
Again, Sarah sounded pretty good. She's not real happy with her room assignment - it's teeny tiny. It won't fit a bed and a crib at the same time. So far Gracie won't sleep in a crib, so Sarah sleeps with her. But, the hospital will not allow them to sleep in a bed unless it has rails... Anyway, the point is that the room is just too small for much stuff. From the sound of it (haven't seen it yet) it's about the size of 1/2 of a small hotel room. Cramped quarters for living the next 6+ weeks! Ugh... We might see if we can change that. We'll keep you posted.
Thanks again for your thoughts and prayers. Keep em coming!
Day -10
Today is our 3rd day of Campath, and thankfully, Gracie seems to be tolerating it much better. Her fever has gone away and she is much more playful than she was on Saturday. They started her on TPN last night which is basically all the nutrition she needs. She is still eating and nursing, which is encouraged, but due to the fact that she has had some vomiting and also they can't tell how much breastmilk she's getting, they went ahead and gave her the nutrition just for safety's sake.
This morning they drew blood at 4 am (this happens everyday) and both her hemoglobin and potassium were low so Gracie has had some red blood cells and some extra poatssium today so far. She's looking pretty good (a little pale because of the low hemolobin level) and doing well according to the doctors who visitied us about an hour ago. She seems to feel better and has been playing and flirting with all of her nurses today.
A couple of nice ladies from Speech Therapy and Physical Therapy came by this morning, and unfortunately Gracie was still drowsy from Benadryl and not interested in talking or playing much. I went ahead and asked that they start coming to visit in the afternoons when Gracie is in her prime, so I am really looking forward to seeing what all we can do to help Gracie along developmentally.
Anyway, so far so good. Gracie starts Busulfan tomorrow.
By the way, Rylie is down the hall from us and seems to be doing well. Also, Chance's mom had her new baby yesterday! Cooper Allen was born at 8:30 am yesterday morning. Congratulations Tracie and Ben!!!
This morning they drew blood at 4 am (this happens everyday) and both her hemoglobin and potassium were low so Gracie has had some red blood cells and some extra poatssium today so far. She's looking pretty good (a little pale because of the low hemolobin level) and doing well according to the doctors who visitied us about an hour ago. She seems to feel better and has been playing and flirting with all of her nurses today.
A couple of nice ladies from Speech Therapy and Physical Therapy came by this morning, and unfortunately Gracie was still drowsy from Benadryl and not interested in talking or playing much. I went ahead and asked that they start coming to visit in the afternoons when Gracie is in her prime, so I am really looking forward to seeing what all we can do to help Gracie along developmentally.
Anyway, so far so good. Gracie starts Busulfan tomorrow.
By the way, Rylie is down the hall from us and seems to be doing well. Also, Chance's mom had her new baby yesterday! Cooper Allen was born at 8:30 am yesterday morning. Congratulations Tracie and Ben!!!
Saturday, April 26, 2008
Hello from 5D- the Transplant Unit
So Gracie was admitted yesterday and we are settled into our little room. Little being the operative word. Yikes. 1 or 2 months in HERE? I think I'll need the walls padded by Monday.
Anyway, last night Gracie made a valiant effort to sleep in the crib here, but by 3 am she was awake and not interested in sleeping anywhere without Mommy. So the nurses removed her crib and brought in a hospital bed for the 2 of us to share. Hopefully Gracie will be ready to try crib sleeping again soon. Mommy would sure like to have a bed of her own now. :)
Ok, so lets talk about today. Today is Day -12 and she started Campath today, which is an immune suppressing drug. Side affects: Fever, rash, and general yuckiness. She just registered a temp of 102.1 and has been vomiting up about half of everything she takes in. :( No rash so far. She just choked down a dose of Tylenol to fight the fever, and they'll be sending her for a chest x-ray to look for any infection and starting her on IV antibiotics in a few minutes. Those are standard procedure for fever spikes so we are not really worried that there's really an infection, just being cautious and following protocol. I hate that she's feeling bad already though. It just breaks my heart for her. I hope this day doesn't continue to drag like it has so far and I hope for a better night tonight as well.
Anyway, last night Gracie made a valiant effort to sleep in the crib here, but by 3 am she was awake and not interested in sleeping anywhere without Mommy. So the nurses removed her crib and brought in a hospital bed for the 2 of us to share. Hopefully Gracie will be ready to try crib sleeping again soon. Mommy would sure like to have a bed of her own now. :)
Ok, so lets talk about today. Today is Day -12 and she started Campath today, which is an immune suppressing drug. Side affects: Fever, rash, and general yuckiness. She just registered a temp of 102.1 and has been vomiting up about half of everything she takes in. :( No rash so far. She just choked down a dose of Tylenol to fight the fever, and they'll be sending her for a chest x-ray to look for any infection and starting her on IV antibiotics in a few minutes. Those are standard procedure for fever spikes so we are not really worried that there's really an infection, just being cautious and following protocol. I hate that she's feeling bad already though. It just breaks my heart for her. I hope this day doesn't continue to drag like it has so far and I hope for a better night tonight as well.
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