Grace got to take the day off today from going to Children's Hospital. The timing was perfect, because her class had a field trip to the Woodland Park Zoo today, and she would not have been able to go if we'd gone for the infusion.
Tonight I administered the first methotrexate injection at home. (We've had MTX in the infusion center, but this is the first one I did at home.) Grace was a little bit scared, but I did great (if I do say so myself!) and the whole thing was over in less than a minute. The first one is behind us, and it is always the hardest.
Next week we go back to the infusion unit at Children's. However, we will be going on Wednesday intstead of Thursday so that Grace can go with her Brownie troop to the Encampment weekend. After that, we'll see what our schedule is.
Grace has an appointment with a top pediatric dermatologist in Bellevue next week. (She is impossible to get into, and is only doing this as a favor to the first dermatologist we saw in February. ) I'm not sure what--if anything--will come out of this appointment. She might give us some ideas of what we can do to minimize the appearance of the lesion. I will also talk to her about the area of hair loss, and if there is anything that can be done about that. I've read that the hair loss is permanent, but who knows?
Grace is doing well. As of this week, she has gained about 6 pounds, but it really doesn't show all that much, and she is thrilled about the new clothes she has gotten out of this! I am in search of a new First Communion dress for her, however, since the one I bought her no longer fits. Good thing I've got until June 8 to find one!
That's about all for tonight's update. Thank you so much for reading.
Thursday, April 24, 2008
Friday, April 18, 2008
Another one down!!
Hi everyone,
Sorry this post is a day late. Thank you to those of you who called wanting to make sure that everything was OK.
Yesterday went much better than last week. Unfortunately, Grace did vomit on her way to the infusion. I think she was just really nervous given the events of last week.
When the meds were hung, I went to get her breakfast in the cafeteria. In weeks past, she usually becomes ravenously hungry about 20 minutes into the infusion. I became a little concerned when that did not happen this week, and the breakfast went untouched. She started to feel more and more nauseated. The nurse came, and suggested that because Grace had started the infusion with a totally empty stomach (due to the vomiting), that we had created a vicious cycle: Grace couldn't/didn't want to eat because of the nausea and fear of vomiting. The empty stomach, however, was make the nausea worse. If she had started with a little food on her stomach, she probably would have been OK, but we had just started out on the wrong foot.
The nurse called her doctor, who prescribed a dose of Zofran, which is a FABULOUS anti-nausea med used in patients receiving cancer treatments. Grace took the Zofran, and started to feel much better within just a couple of minutes. It was miraculous. She still didn't feel like eating much, but she felt better.
Selfishly, I was glad she felt better because we had plans to meet an old friend for a quick lunch yesterday. Typically, Grace is "amped up" after a treatment, and after she started to feel better yesterday, this proved to be true once again. So, we walked around U-Village for a few minutes and then met Lara for lunch. Grace managed to eat most of a hamburger and some fries. By then, Grace was starting to get very tired, which is also par for the course. So, we loaded her up in the car and brought her home. She spent most of the afternoon on the couch, and felt great this morning and was able to go to school.
We are taking next week off from the steroid (methylprednisolone) therapy. I will administer a methotrexate injection at home next Thursday. The following week, she goes for her infusion on Wednesday in order to be sure that she feels 100% healthy by Friday so she can go to Encampment with her Brownie troop that weekend.
Thank you to Christine for a wonderful dinner last night!
Thank you everyone for reading.
All my best,
Sabrina
Sorry this post is a day late. Thank you to those of you who called wanting to make sure that everything was OK.
Yesterday went much better than last week. Unfortunately, Grace did vomit on her way to the infusion. I think she was just really nervous given the events of last week.
When the meds were hung, I went to get her breakfast in the cafeteria. In weeks past, she usually becomes ravenously hungry about 20 minutes into the infusion. I became a little concerned when that did not happen this week, and the breakfast went untouched. She started to feel more and more nauseated. The nurse came, and suggested that because Grace had started the infusion with a totally empty stomach (due to the vomiting), that we had created a vicious cycle: Grace couldn't/didn't want to eat because of the nausea and fear of vomiting. The empty stomach, however, was make the nausea worse. If she had started with a little food on her stomach, she probably would have been OK, but we had just started out on the wrong foot.
The nurse called her doctor, who prescribed a dose of Zofran, which is a FABULOUS anti-nausea med used in patients receiving cancer treatments. Grace took the Zofran, and started to feel much better within just a couple of minutes. It was miraculous. She still didn't feel like eating much, but she felt better.
Selfishly, I was glad she felt better because we had plans to meet an old friend for a quick lunch yesterday. Typically, Grace is "amped up" after a treatment, and after she started to feel better yesterday, this proved to be true once again. So, we walked around U-Village for a few minutes and then met Lara for lunch. Grace managed to eat most of a hamburger and some fries. By then, Grace was starting to get very tired, which is also par for the course. So, we loaded her up in the car and brought her home. She spent most of the afternoon on the couch, and felt great this morning and was able to go to school.
We are taking next week off from the steroid (methylprednisolone) therapy. I will administer a methotrexate injection at home next Thursday. The following week, she goes for her infusion on Wednesday in order to be sure that she feels 100% healthy by Friday so she can go to Encampment with her Brownie troop that weekend.
Thank you to Christine for a wonderful dinner last night!
Thank you everyone for reading.
All my best,
Sabrina
Thursday, April 10, 2008
A little while later . . . .
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
Love to you all,
Sabrina
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
Subscribe to:
Comments (Atom)