The tumors in Ruby's lungs are stable.
Stable is good, stable is the best news we can ever realistically expect.
Stable is a miracle!
Thankful to have more time together.
Thank you all for your love and well wishes. We are grateful to be surrounded by you, near and far. I assure you we can feel and are uplifted by you!
So for now we will continue with Opdivo (Nivolumab) immunotherapy every other week as we have been doing. Another 3 months and do a chest CT.
And miss Annie is 7 months old today!
I'm so tired, but its a good tired. Thankful for all those things that wear me out :)
Thursday, June 22, 2017
Tuesday, June 20, 2017
MRI day today
Its about 5pm. Annie is napping, the three musketeers are playing, ac is cranking because its hair dryer hot outside.
I've been awake since about 5:15am. Annie crying. It worked out as I needed to feed her by 6am since she had to be fasting for her swallow study this morning. Mark went to the gym, she eventually fell back asleep for a bit. I sleep-rested: not sleeping but trying to.
I took Annie to the Riverton Primarys and by time she was done Mark was there in the waiting room with Ruby. Annie did great. She cries easily at non-immediate-family faces, but was happy and smiling. She did better this time and they said we don't have to thicken her liquids as long as we use a slower flow nipple on her bottle! This was great news and I'm glad she's doing better.
Mark took Annie home. Ruby was kinda grumpy off the bat since she hadn't eaten since about 9:30pm last night. I had water, but didn't eat so that I could empathize with her. They accessed her port, but its not the same as being in her usual space at the salt lake location in the oncology clinic. The needle was too long so it stuck out of her port a good 1/4". Better than having to get an IV though. Ruby was tired of waiting but once we went back to do the MRI she stopped in the doorway. Foreign room, foreign machine, nurses she didn't recognize, etc. I held her and they started the sedation.
Then it got sad.
She fought it hard.
Scream-crying, shaking legs. I didn't like it. I held it together.
After she was out and they took her back, I called Mark and had a little cry. I felt better after sharing my feelings. All the medical stuff is getting harder as she gets older. Understand more, gets scared more, has more of an opinion. I got some veggies and dip then read a book for a bit. They finally called me back about 12:45ish I think. She took a while to wake up. It gave the nurse time to deaccess her port. We were going to leave it in for tomorrows business but I didn't want her to have to sleep with it and have that needle sticking out so far. She stayed asleep while we took all the adhesive off which is the part Ruby really struggles with. She wanted sausage and fries...so we stopped at mcdonalds before going to pick up S and J from Aunt Sheri's house (they had such a great time, thank you!).
Hurried home so I could pump then took the 3 to each get their own pack of gum I had promised earlier. Mark is at the temple now and I think I need to go lay down to feel a little less zombie-esk. Hoping for earlier bed times tonight, leaving for the hospital about 7am.
The tumors could be stable. They could have spread. I hope I will live my life in a way that will make me not regret or wish anything were different, regardless of the news we get tomorrow and in the future.
I've been awake since about 5:15am. Annie crying. It worked out as I needed to feed her by 6am since she had to be fasting for her swallow study this morning. Mark went to the gym, she eventually fell back asleep for a bit. I sleep-rested: not sleeping but trying to.
I took Annie to the Riverton Primarys and by time she was done Mark was there in the waiting room with Ruby. Annie did great. She cries easily at non-immediate-family faces, but was happy and smiling. She did better this time and they said we don't have to thicken her liquids as long as we use a slower flow nipple on her bottle! This was great news and I'm glad she's doing better.
Mark took Annie home. Ruby was kinda grumpy off the bat since she hadn't eaten since about 9:30pm last night. I had water, but didn't eat so that I could empathize with her. They accessed her port, but its not the same as being in her usual space at the salt lake location in the oncology clinic. The needle was too long so it stuck out of her port a good 1/4". Better than having to get an IV though. Ruby was tired of waiting but once we went back to do the MRI she stopped in the doorway. Foreign room, foreign machine, nurses she didn't recognize, etc. I held her and they started the sedation.
Then it got sad.
She fought it hard.
Scream-crying, shaking legs. I didn't like it. I held it together.
After she was out and they took her back, I called Mark and had a little cry. I felt better after sharing my feelings. All the medical stuff is getting harder as she gets older. Understand more, gets scared more, has more of an opinion. I got some veggies and dip then read a book for a bit. They finally called me back about 12:45ish I think. She took a while to wake up. It gave the nurse time to deaccess her port. We were going to leave it in for tomorrows business but I didn't want her to have to sleep with it and have that needle sticking out so far. She stayed asleep while we took all the adhesive off which is the part Ruby really struggles with. She wanted sausage and fries...so we stopped at mcdonalds before going to pick up S and J from Aunt Sheri's house (they had such a great time, thank you!).
Hurried home so I could pump then took the 3 to each get their own pack of gum I had promised earlier. Mark is at the temple now and I think I need to go lay down to feel a little less zombie-esk. Hoping for earlier bed times tonight, leaving for the hospital about 7am.
The tumors could be stable. They could have spread. I hope I will live my life in a way that will make me not regret or wish anything were different, regardless of the news we get tomorrow and in the future.
A "feel better friends" volunteer made and shipped this doll to Ruby...she even has a port :)
update...this evening Dr Witt called to talked about Annie's results and could see the radiologist notes from the MRI...her brain looks good and normal!
Monday, June 19, 2017
scanxiety feelings
Scans have seemed to take forever to get here. I don't like waiting. Especially on a day like today. By 11am Ruby was scream-crying at me and a hot mess. By dinner she had fallen asleep, said her tummy hurt, and was extremely grumpy. It has been hard for me to decipher what the cause of her problems are because there are multiple choices: 4 years old, needs a nap, shares a room with 2 older sisters, ate too much junk food, needs a nap, has cancer, needs to go to bed earlier. I've been really worried the last few days that its that dang cancer.
Wednesday we will find out the results from the scans, and I will be surprised, overjoyed, grateful to God if the tumors are stable.
Because as of now I'm not sure.
And if they're not...I'm trying to think of what my plan will be. Like, literally where will I go, what will I do. When we've had news like this before it makes you want to just scoop of your family and go be together in a bubble. Because they are what is most important. And if you have to see other people, you have to talk about it, and have them mourn with you and it becomes more real. If you have suggestions let me know :)
Thank you friends/family who have volunteered to bring dinner and help with the girls tomorrow and Wednesday!
Tonight we got up in the mountains and besides the mosquitoes and a diaper blowout, it was great. Cool enough for jackets, saw a moose, deer, and an amazing sunset on the way home.
Wednesday we will find out the results from the scans, and I will be surprised, overjoyed, grateful to God if the tumors are stable.
Because as of now I'm not sure.
And if they're not...I'm trying to think of what my plan will be. Like, literally where will I go, what will I do. When we've had news like this before it makes you want to just scoop of your family and go be together in a bubble. Because they are what is most important. And if you have to see other people, you have to talk about it, and have them mourn with you and it becomes more real. If you have suggestions let me know :)
Thank you friends/family who have volunteered to bring dinner and help with the girls tomorrow and Wednesday!
Tonight we got up in the mountains and besides the mosquitoes and a diaper blowout, it was great. Cool enough for jackets, saw a moose, deer, and an amazing sunset on the way home.
Tuesday, June 13, 2017
the week before scans
The baby is crying, this may be short, but I keep delaying updating the blog until I have more time...yeah, that hasn't happened. The last month has been one of sleep deprivation. Annie is up 1-3x in the night and not napping well. She's back on reflux medication. She seems happy...just not for more than 20 min at a time in her crib :)
Lack of sleep has really taken its toll on me. I've kind of slipped into survival mode. It has really made me see how important sleep is and how much better I am when I am sleeping well!
School is out and although its cool and rainy today, I like the break from the heat. We've already been swimming lots and I'm proud to report I've gotten my hair wet all but 1 of those times :) Sometimes, oftentimes, as a mom its easier to sit and observe than get in there and be with them. Totally worth the gross hair.
Spent some time on the phone yesterday getting things in order for next week. Another hold-your-breath time coming up.
Tuesday Ruby has an MRI. She'll have to be sedated. This will be to check her head and neck. At the same time/place we're going to have another swallow study (done with x ray) for Annie. Trying to be efficient here people...and have to take less trips/babysitters/etc. Wednesday Ruby will have a PET-CT scan, appt with Dr Holly, and possibly another infusion of Opdivo (Nivolumab). One of my most very least favorite things is having Ruby sedated. Its scary to see your child lifeless. Ruby also tends to wake up and have to be given additional meds...which then takes her forever to wake up and/or she is ultra grumpy and mean.
Thankful that we are here though. When I think about last year...we had just heard Annie's heart beat for the first time, found out the Opdivo didn't work (or maybe it did), and had Ruby's Rally. I felt like cancer was a death sentence for our angel, the 3rd musketeer, our Ruby tube squeeze. I had no idea if she would live to meet her baby sister. Sigh. She did. And we are here and together.
I have been better at embracing that this cancer theme in our life may be here indefinitely. I've met a few other moms of melanoma kids. We are planning to go to the Melanoma Research Foundation pediatric summit in Colorado in September. So far I think 17 or so kids(and their families) nationwide are registered to go. In November I'm hoping to take Ruby to St.Jude for a 2 day melanoma clinic to have them look over her case. More just to get another evaluation, maybe learn something new, and provide any information that may be helpful to future patients like Ruby.
Everything seems to have been pretty good within our family the past year. Lately though I wondering if maybe the craziness of our life is manifesting itself here and there. Lack of communication, more crying, less peace. I haven't written lately in part because I don't want to spill my guts here. It should be to my journal, Mark, our family. I don't want a pity party. I do want to be real. You get the gist.
So for now I will focus on the things that keep me grounded and do my best to keep on keepin on.
Lack of sleep has really taken its toll on me. I've kind of slipped into survival mode. It has really made me see how important sleep is and how much better I am when I am sleeping well!
School is out and although its cool and rainy today, I like the break from the heat. We've already been swimming lots and I'm proud to report I've gotten my hair wet all but 1 of those times :) Sometimes, oftentimes, as a mom its easier to sit and observe than get in there and be with them. Totally worth the gross hair.
Spent some time on the phone yesterday getting things in order for next week. Another hold-your-breath time coming up.
Tuesday Ruby has an MRI. She'll have to be sedated. This will be to check her head and neck. At the same time/place we're going to have another swallow study (done with x ray) for Annie. Trying to be efficient here people...and have to take less trips/babysitters/etc. Wednesday Ruby will have a PET-CT scan, appt with Dr Holly, and possibly another infusion of Opdivo (Nivolumab). One of my most very least favorite things is having Ruby sedated. Its scary to see your child lifeless. Ruby also tends to wake up and have to be given additional meds...which then takes her forever to wake up and/or she is ultra grumpy and mean.
Thankful that we are here though. When I think about last year...we had just heard Annie's heart beat for the first time, found out the Opdivo didn't work (or maybe it did), and had Ruby's Rally. I felt like cancer was a death sentence for our angel, the 3rd musketeer, our Ruby tube squeeze. I had no idea if she would live to meet her baby sister. Sigh. She did. And we are here and together.
I have been better at embracing that this cancer theme in our life may be here indefinitely. I've met a few other moms of melanoma kids. We are planning to go to the Melanoma Research Foundation pediatric summit in Colorado in September. So far I think 17 or so kids(and their families) nationwide are registered to go. In November I'm hoping to take Ruby to St.Jude for a 2 day melanoma clinic to have them look over her case. More just to get another evaluation, maybe learn something new, and provide any information that may be helpful to future patients like Ruby.
Everything seems to have been pretty good within our family the past year. Lately though I wondering if maybe the craziness of our life is manifesting itself here and there. Lack of communication, more crying, less peace. I haven't written lately in part because I don't want to spill my guts here. It should be to my journal, Mark, our family. I don't want a pity party. I do want to be real. You get the gist.
So for now I will focus on the things that keep me grounded and do my best to keep on keepin on.
this was ultimate survival mode photo...Mark was out of town one weekend (over our anniversary-we've made it 12 years hooray!) and Annie was up lots and lots in the night.
6 months old
she looooved having aunt b come visit
dinner w my neighborhood girlfriends was more than awesome.
amazing food and I nearly peed my pants from laughing.
wonderful party for this womans daughter, now 18 years old,
who has been fighting to stay alive her whole life
Dr Holly and her son were there!
Sunday morning before church
road trippin it to St.George
petting a wild tortoise
my best efforts at getting us all in a pic at the park.
it was hot.
gathered at the Baking Hive to meet a new friend.
This momma is inspiring. Her daughter has had cancer her whole life, relapsed 4x.
Jane o, love her much.
best.teacher.ever.
soccer party fun.
love that Jane loves soccer and has been able to
play with the same girls the last few seasons
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