She's doing better now. We're going to try and go for it and head to the coast. If anyone needs to get ahold of us, cell phones don't work out there, and we won't have email. You can reach us at the condo using it's land line if you need to. If you don't know the number, my mom has it.
Love to you all,
Sabrina
Thursday, April 10, 2008
Some minor bumps in the road
Hi everyone--just wanted to give you a brief update.
I just got off the phone with Rob, who is on his way back from the hospital with Grace after her weekly infusion. I was unable to go because I am actually quite sick myself, though on the road to recovery. We had some minor problems at the hospital today.
Grace's infusion typically takes two hours. However, if the patient tolerates the medications well, the staff gives the parent and/or patient the option to speed it up to 1 1/2 hours. Because Grace had tolerated the previous infusions well, and because we are trying to get on the road for our trip to the coast, Rob went ahead and told them to speed up the drip. Unfortunately, Grace did not tolerate this well at all. She felt quite sick and lightheaded, and vomited twice. I just spoke with her, and she's doing better, but still not feeling too great. Lesson learned--take the whole two hours!!!! Don't try to rush it!
We are waiting to see how Grace does before we hit the road. The medical facilities in Westport are practically non-existent, so I want to make sure she is well recovered before we head out. Today is Rob's birthday, and we were hoping to hit the new Cabela's on our way, but we'll see.
In related news, Grace had an appointment with her rheumatologist earlier in the week. The lesion is looking a little better, and has actually shrunk by 1mm, which is great news. Grace has also only gained 1 lb, which is further good news. Though she is retaining quite a bit of water (another side effect) which makes her appear like she has gained more. At this appointment, I also learned to give her the methotrexate shots in preparation for when we can cut back on the steroid treatments and give her only the methotrexate at home. The nurse let me practice on her (Grace wanted no part of it), and I am proud to say that I am a natural. The nurse told me I missed my calling, and should have been a nurse!
The timeline for the treatments is also under scrutiny. Grace's liver enzymes were slightly elevated this week. Still within the normal range for a child receiving her treatments, but a little on the high end. She is sceduled to receive a treatment next week, but then will likely be taking a week off. We'll let you all know more as we find out additional information.
Thanks for your good thoughts. We truly appreciate them.
On a selfish note, I'd like to take a minute to wish Rob a happy 39th birthday. I always knew that he is a great husband and father, but he has really shown that over the last few weeks. He's the best.
We'll update again later.
Love,
Sabrina
I just got off the phone with Rob, who is on his way back from the hospital with Grace after her weekly infusion. I was unable to go because I am actually quite sick myself, though on the road to recovery. We had some minor problems at the hospital today.
Grace's infusion typically takes two hours. However, if the patient tolerates the medications well, the staff gives the parent and/or patient the option to speed it up to 1 1/2 hours. Because Grace had tolerated the previous infusions well, and because we are trying to get on the road for our trip to the coast, Rob went ahead and told them to speed up the drip. Unfortunately, Grace did not tolerate this well at all. She felt quite sick and lightheaded, and vomited twice. I just spoke with her, and she's doing better, but still not feeling too great. Lesson learned--take the whole two hours!!!! Don't try to rush it!
We are waiting to see how Grace does before we hit the road. The medical facilities in Westport are practically non-existent, so I want to make sure she is well recovered before we head out. Today is Rob's birthday, and we were hoping to hit the new Cabela's on our way, but we'll see.
In related news, Grace had an appointment with her rheumatologist earlier in the week. The lesion is looking a little better, and has actually shrunk by 1mm, which is great news. Grace has also only gained 1 lb, which is further good news. Though she is retaining quite a bit of water (another side effect) which makes her appear like she has gained more. At this appointment, I also learned to give her the methotrexate shots in preparation for when we can cut back on the steroid treatments and give her only the methotrexate at home. The nurse let me practice on her (Grace wanted no part of it), and I am proud to say that I am a natural. The nurse told me I missed my calling, and should have been a nurse!
The timeline for the treatments is also under scrutiny. Grace's liver enzymes were slightly elevated this week. Still within the normal range for a child receiving her treatments, but a little on the high end. She is sceduled to receive a treatment next week, but then will likely be taking a week off. We'll let you all know more as we find out additional information.
Thanks for your good thoughts. We truly appreciate them.
On a selfish note, I'd like to take a minute to wish Rob a happy 39th birthday. I always knew that he is a great husband and father, but he has really shown that over the last few weeks. He's the best.
We'll update again later.
Love,
Sabrina
Thursday, April 3, 2008
The 2nd infusion is behind us . .
Today's 2nd infusion is history! Grace did very well today, simply averting her eyes when they started the IV line, and taking everything like a trooper. Because of my pretty bad cold, we had to be in isolation while in the infusion unit. The poor nurse had to put on a gown, mask and gloves everytime she came in. This was done to protect the other children in the unit who are severely immuno-compromised. We were out of there in about 3 hours today--not bad!
Today's side effects have been a little more problematic. Thankfully, no nausea, but Grace is pretty agitated and irritable. She is finding it difficult to sit still for any length of time, and is pretty emotional.
I spoke with our school district nurse this morning, and we now have a plan in place for Grace on the day she returns to school after treatment. Last week, she made it through a couple of hours, and then was in the health room complaining of a headache. With this new plan, she will be allowed to relax in the health room, drink some water, have a snack and take some Advil if needed. She can then return to class if she feels like it. She will also be given more leniency for snacking/drinking in the classroom if absolutely necessary. In addition, because her immune system is suppressed, the district will notify us in the case of an outbreak of any communicable diseases such as chicken pox or strep throat.
Over all, this is becoming more routine. We meet with her rheumatologist on Monday, so we should have some more information on the length of treatments, etc. at that time.
That's tonight's update. I am now off to drink some TheraFlu and go to bed. Rob is also pretty sick--in fact he's worse than me. We are so thankful for the delicious dinner brought to us tonight!
Thanks for all your positive thoughts,
Sabrina
Today's side effects have been a little more problematic. Thankfully, no nausea, but Grace is pretty agitated and irritable. She is finding it difficult to sit still for any length of time, and is pretty emotional.
I spoke with our school district nurse this morning, and we now have a plan in place for Grace on the day she returns to school after treatment. Last week, she made it through a couple of hours, and then was in the health room complaining of a headache. With this new plan, she will be allowed to relax in the health room, drink some water, have a snack and take some Advil if needed. She can then return to class if she feels like it. She will also be given more leniency for snacking/drinking in the classroom if absolutely necessary. In addition, because her immune system is suppressed, the district will notify us in the case of an outbreak of any communicable diseases such as chicken pox or strep throat.
Over all, this is becoming more routine. We meet with her rheumatologist on Monday, so we should have some more information on the length of treatments, etc. at that time.
That's tonight's update. I am now off to drink some TheraFlu and go to bed. Rob is also pretty sick--in fact he's worse than me. We are so thankful for the delicious dinner brought to us tonight!
Thanks for all your positive thoughts,
Sabrina
We're off to infusion #2 . . .
It's cold and dark, and Grace and I are about to make our pilgrimage across the Snoqualmie Valley and across Lake Washington to Children's Hospital and Medical Center. She's doing fine this morning, looking forward to seeing her favorite nurse, Amanda. (Gosh, I hope she's there!) Someone from her Brownie troop delivered another basket last night, and a wonderful volunteer from PTA is bringing us dinner tonight. The support and kindness of our friends has been so overwhelming . . . and so very appreciated!
Stay tuned for another update later tonight. I am a little concerned because some of the meds tend to have cumulative side effects, meaning that the relatively mild side effects we experienced last time might be a little more pronounced this round.
Thinking positive thoughts,
Sabrina
Stay tuned for another update later tonight. I am a little concerned because some of the meds tend to have cumulative side effects, meaning that the relatively mild side effects we experienced last time might be a little more pronounced this round.
Thinking positive thoughts,
Sabrina
Thursday, March 27, 2008
1st Infusion under our belt . . .. .
Well, we made it! Grace and I left our house about 6:30 this morning, and got to Seattle about 7:30. We even had time for a short detour to Starbucks in U-Village!! We arrived at the hospital about 8:00 and we were both quite nervous. The nurses are fabulous, however, and we soon felt more at ease. We received the good news today that our infusions will actually take more like 2 hours (rather than the 4-6 hours we were previously told.) However, the whole process takes longer than I thought, so a two hour infusion can actually take about 4 hours by the time they get the meds from the pharmacy, apply the numbing cream, find a good vein, put in the line, hang the meds, etc. I'm sure the process will get faster once we're a little more familiar with the routine.
We're home now, and Grace is doing well. She's very irritable, and very hungry. Both of which are side effects of her meds. The appetite is something we will have to control--or at least control what foods she eats, but for today I'm being a little more lenient. The grouchiness, however, is already taking it's toll on me . . . .. ;)
I must say however, that all of this was really put into perspective for me today. As hard as it is, and as overwhelming as all this seems, it is literally NOTHING compared to what so many families are facing. We saw alot of very sick kids today, whose meds are many times stronger and have many more insidious side effects than Grace's, and whose families spend hours and hours every week at Children's Hospital. It was very humbling.
Following are a couple of pictures. One of them is of Grace's lesion to give you an idea of what it looks like, and the other is of her writing in her new journal during the infusion.
Our best to all of you,
Sabrina
We're home now, and Grace is doing well. She's very irritable, and very hungry. Both of which are side effects of her meds. The appetite is something we will have to control--or at least control what foods she eats, but for today I'm being a little more lenient. The grouchiness, however, is already taking it's toll on me . . . .. ;)
I must say however, that all of this was really put into perspective for me today. As hard as it is, and as overwhelming as all this seems, it is literally NOTHING compared to what so many families are facing. We saw alot of very sick kids today, whose meds are many times stronger and have many more insidious side effects than Grace's, and whose families spend hours and hours every week at Children's Hospital. It was very humbling.
Following are a couple of pictures. One of them is of Grace's lesion to give you an idea of what it looks like, and the other is of her writing in her new journal during the infusion.
Our best to all of you,
Sabrina
Wednesday, March 26, 2008
Our Bags Are Packed and We're Ready to Go!
Tomorrow is the day. Grace and I spent some time tonight gathering a bag of things for her to do tomorrow. Her Brownie troop has organized a gift basket for her, which will be delivered every Wednesday night in anticipation of her Thursday treatments. Tonight's basket contained High School Musical stickers, markers, a blank journal and other goodies. Grace is thrilled, and Rob and I are truly touched at the support our community is showing us. We are so grateful for each of you!Grace is handling everything just fine--at least on the outside. I know she is nervous, but she seems to be doing OK. Tonight was her musical performance at school, which I'm sure helped to take her mind off of things. We'll all be glad to get through tomorrow. It will be easier when we have an idea of the routine of the place and how she will tolerate her medication and the IV in general.
I've packed my bag for the hospital, too. Though I'm thinking it's rather optimistic of me to think I'll get through 4 back issues of Gourmet and Bon Appetit! In a way, I'm looking forward to the time to spend alone with Grace.
I will update tomorrow night with how it went. Please keep up in your thoughts.
By the way, the above picture was taken in February at Grace's birthday party at Libby Lu's. Isn't her smile fantastic?
Monday, March 24, 2008
Just a couple of pictures
Thought you guys might enjoy seeing a couple of pictures. These were taken last week at Children's Hospital when Grace was having her MRI. The one where I'm holding her is before they put her to sleep. We were both a little nervous! The one with the popsicle is taken after she woke up. I really love both of them.
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