I think when someone we know or someone we love is going through something really hard we often don't know what to say. We don't know what we can do to help.
I absolutely love this article.
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
Tuesday, April 12, 2016
Friday, March 25, 2016
Ruby
This week has been hard.
A wonderful thing about being human is your ability to forget.
Little things can bring back those memories like they were yesterday. Smells, sounds, places.. and empathy.
My dear friend's little girl was just diagnosed with metastatic melanoma. Absolutely nothing about this is fair. I can't stop thinking and praying about her and her sweet family. Their's is a journey that I've walked and tried desperately to forget.
People say God won't give you more then you can handle. I disagree. God will give you trials that can break you. God will give you trails that bring you to your knees and test your faith in ways you never thought possible.
Isn't it great we have God though? Isn't is great we know He will never leave us? No matter how hard things get.
We need your prayers for this little girl. Please pray for sweet Ruby.
A wonderful thing about being human is your ability to forget.
Little things can bring back those memories like they were yesterday. Smells, sounds, places.. and empathy.
My dear friend's little girl was just diagnosed with metastatic melanoma. Absolutely nothing about this is fair. I can't stop thinking and praying about her and her sweet family. Their's is a journey that I've walked and tried desperately to forget.
People say God won't give you more then you can handle. I disagree. God will give you trials that can break you. God will give you trails that bring you to your knees and test your faith in ways you never thought possible.
Isn't it great we have God though? Isn't is great we know He will never leave us? No matter how hard things get.
We need your prayers for this little girl. Please pray for sweet Ruby.
Tuesday, September 22, 2015
Life
Here I am again! Apologizing for not keeping those who care up to date. Avery is doing great! We went in again the very end of June for her scans.
First thing we did is go up to the lab for a blood draw. I have a bad fear of needles so I tried to be as calm as I could be for Ave. She did so amazing! She held still and there were no tears.
After scans, we headed straight to imaging where Avery got her skeletal survey. This is the big one! I stood by the computer monitor when I wasn't by Avery - which in itself is a miracle! The first 3-4 times we had this test done it was traumatizing to say the least. Avery was too young for me to explain what we were doing and all she knew was that she had to be stripped down to her underwear, lay on a cold hard table, and have complete strangers holding her down. She would scream and kick the entire time. After each x-ray an image would pop up on the computer monitor where a technician would check to make sure it was correct and send it to the radiologist who would look over it for signs of LCH.
I watched image after image go through and really paid particular attention to her skull. This is where she had a flare up 6 months ago. I was SO SURE I could see lesions (because I'm an expert right??) I mentally prepared myself for us to go up to clinic and hear the word "treatment" again. I of course, was devastated - but I was not going to be blindsided again like the last time. We stopped to get lunch in the cafeteria while we waited for doctors to go over her scans.
She usually gets whatever she wants when we are there. Can ya blame me?? :)
We headed up to clinic where she had her usual weight, height, blood pressure and temperature taken and we were taken back to hear the news. Doctor walked in and said, "Everything looks great. Come back in a year." I about fell on the floor!! I guess it teaches me right for thinking I have a medical degree or something. :) We were so ecstatic. Here's to hoping all this becomes a distant memory for her.
First thing we did is go up to the lab for a blood draw. I have a bad fear of needles so I tried to be as calm as I could be for Ave. She did so amazing! She held still and there were no tears.
Waiting with Aunt Caitlin in the waiting room.
After scans, we headed straight to imaging where Avery got her skeletal survey. This is the big one! I stood by the computer monitor when I wasn't by Avery - which in itself is a miracle! The first 3-4 times we had this test done it was traumatizing to say the least. Avery was too young for me to explain what we were doing and all she knew was that she had to be stripped down to her underwear, lay on a cold hard table, and have complete strangers holding her down. She would scream and kick the entire time. After each x-ray an image would pop up on the computer monitor where a technician would check to make sure it was correct and send it to the radiologist who would look over it for signs of LCH.
I watched image after image go through and really paid particular attention to her skull. This is where she had a flare up 6 months ago. I was SO SURE I could see lesions (because I'm an expert right??) I mentally prepared myself for us to go up to clinic and hear the word "treatment" again. I of course, was devastated - but I was not going to be blindsided again like the last time. We stopped to get lunch in the cafeteria while we waited for doctors to go over her scans.
She usually gets whatever she wants when we are there. Can ya blame me?? :)
We headed up to clinic where she had her usual weight, height, blood pressure and temperature taken and we were taken back to hear the news. Doctor walked in and said, "Everything looks great. Come back in a year." I about fell on the floor!! I guess it teaches me right for thinking I have a medical degree or something. :) We were so ecstatic. Here's to hoping all this becomes a distant memory for her.
I told her to give me her best "No LCH face!"
Here are a couple pictures of Avery lately
Started her second year of preschool and is LOVING it!
Now has a baby sister and they adore each other!
Saturday, January 10, 2015
Diagnosis
Yep. I'm still here. I know many people have stopped reading and that's ok. I haven't been good about posting and life always seems to get in the way. This blog has turned into something that will just hopefully help me remember anyway.
Today I realized it's been two years since Avery was diagnosed.
Since then Avery has had:
22 rounds of chemo
22 rounds of steroids
30 port accesses
6 MRI's
1 CT scan
1 Lumbar Puncture
1 bone marrow biopsy
9 skeletal surveys
4 ER trips
As for news since last January…
When she was done with treatment we were told to come back in three months to make sure she was still doing good. I remember having the worst anxiety the week leading up to it. LCH has such a high recurrence rate and I was terrified of hearing that she would have to go back on treatment. They told us Avery only had about a 20% chance of reoccurring. Pretty reassuring, right?
Her skeletal survey and MRI came back with the news we were hoping for. She was still disease free! They even told us we wouldn't need to come back for another six months!
Six months later we came back for another skeletal survey on October 22nd. I was still a little worried about it, but not nearly as much as I was the first time. Thomas had gotten the morning off of work and came up to the hospital with us. They don't let you in the rooms during a skeletal survey if you are pregnant and I wanted someone to be with Avery. After the scans we headed up to clinic to get the results. We were taken back into the clinic room and were seen by the resident. After that we waited… and waited… and waited. The doctor came in to tell us he would be right with us and we waited some more. At this point I was started to get annoyed (you'd think I'd get a clue that they were acting weird!) and just wanted them to come in so we could go home.
When the doctor finally came in they told us that Avery had a new skull lesion on the left side. Her last lesion was on the right. He told us to come back in three months and if had gotten worse or she had more we would resume treatment. Luckily, unless they get really bad she will only have to take a daily medication at home.
Today I realized it's been two years since Avery was diagnosed.
Since then Avery has had:
22 rounds of chemo
22 rounds of steroids
30 port accesses
6 MRI's
1 CT scan
1 Lumbar Puncture
1 bone marrow biopsy
9 skeletal surveys
4 ER trips
As for news since last January…
When she was done with treatment we were told to come back in three months to make sure she was still doing good. I remember having the worst anxiety the week leading up to it. LCH has such a high recurrence rate and I was terrified of hearing that she would have to go back on treatment. They told us Avery only had about a 20% chance of reoccurring. Pretty reassuring, right?
Her skeletal survey and MRI came back with the news we were hoping for. She was still disease free! They even told us we wouldn't need to come back for another six months!
Six months later we came back for another skeletal survey on October 22nd. I was still a little worried about it, but not nearly as much as I was the first time. Thomas had gotten the morning off of work and came up to the hospital with us. They don't let you in the rooms during a skeletal survey if you are pregnant and I wanted someone to be with Avery. After the scans we headed up to clinic to get the results. We were taken back into the clinic room and were seen by the resident. After that we waited… and waited… and waited. The doctor came in to tell us he would be right with us and we waited some more. At this point I was started to get annoyed (you'd think I'd get a clue that they were acting weird!) and just wanted them to come in so we could go home.
When the doctor finally came in they told us that Avery had a new skull lesion on the left side. Her last lesion was on the right. He told us to come back in three months and if had gotten worse or she had more we would resume treatment. Luckily, unless they get really bad she will only have to take a daily medication at home.
I can't really describe what it felt like to hear the words again. Just being able to say that her LCH was gone for the past 9 months was such a huge weight off my shoulders and now I can't say that anymore. It's just so discouraging to know that no matter how many times she goes on or off treatment that it can always come back. Her next scan is on Wednesday - three days before her Chemoversary! Hopefully we will get the news we are hoping for and she can continue to be a happy and healthy little girl.
Avery and her new baby sis!
Wednesday, October 1, 2014
Make a Wish Trip Day 7 and 8 - Downtown Disney and Boggy Creek Airboat Rides
The next three days of our trip were much more relaxed. It was nice because we all needed some extra sleep and for our feet to heal!
I knew I wanted to go to Downtown Disney to eat and to look for a souvenir for Avery. We didn't buy anything at the Disney Parks which was fine because Avery didn't even ask but I knew I wanted her to have something to remember the trip. We got to Downtown Disney just in time for our reservations at the T-Rex restaurant.
The food wasn't the best but you couldn't beat the atmosphere. We were seated in the ice age room which would randomly change colors and it was hard to tell exactly what you were eating because everything was blue! lol. Avery loved looking at the life size dinosaurs that actually moved and roared at you! After we went through most of the shops and I ended up finding a cute picture frame with all the princesses on it for Avery. And since it was Valentine's day I had to stop at Ghiradelli and buy myself some chocolate covered strawberries. :)
We went back to the hotel to enjoy some down time and played in the pool. That night we went to Olive Garden for dinner and Avery ended up falling asleep on the bench!
The next day we got up and headed to the Boggy Creek Airboat Rides. I had heard it got crowded later in the day and I so we went early only to be turned away. They were running the boats but they told us that unless the temperature is around 90 degrees (which it definitely wasn't in February) that the alligators aren't active at all and we probably wouldn't see one. To kill time we let Avery feed the koi fish and then we drove to Subway to have lunch and wait for the day to heat up.
The last time I was in Florida it was July we did the airboat ride and had several alligators swim right up to boat. I was pretty disappointed when we only actually saw one alligator the whole boat ride but Thomas and Avery enjoyed just being in the airboat. We stayed after to watch the demonstration where a guy actually lets you hold a baby alligator. I was too scared at first but he convinced me to try after my three year old did it and wasn't even scared!
The rest of the day was more relaxing at the hotel and we all went to bed early.
Make a Wish trip Day 7 - Magic Kingdom and Epcot
Really kicking myself for taking so long to finish blogging this trip. I am currently 32 weeks pregnant and getting prepared for baby #2 as well as Avery starting preschool has kept me busy.
My most vivid memory of this day honestly was how bad my feet were hurting. I had three blisters on the bottom from walking so much and my body was telling me to be DONE. But how can you do that in Disneyworld?? :)
This was the day we had to checkout of our blue house at Give Kids the World. We took the train to the Gingerbread house to eat breakfast for the last time and the sweet volunteer driving the train found a towel to tuck around Avery's legs because she was cold. After breakfast we went and packed up our stuff and went to the House of Hearts to officially check out. At first I was really embarrassed because I couldn't stop crying but the receptionist told me that lots of parents cry when checking out!
After officially leaving GKTW we headed to Magic Kingdom. My parents wanted to see Avery meet the princesses and I'm really glad we went back a second time. Avery was so much more excited this time and the princesses spent so much time with her. We waiting in line to meet Snow White, Aurora, Cinderella and Rapunzel. Snow White started off with a big lipstick kiss on Avery's forehead so all of the other princesses kissed her on the cheeks and all over her face! She loved it!
Next we headed over to meet Ariel for the second time and ride that ride. Ariel's Grotto was pretty new when we went and every single time we went on it we ended up getting stuck! The ride would stop for several minutes before starting up again and Avery would get super restless!
After that we headed over to the Dumbo ride which Avery could've rode all day long! I think we went on it three or four times before we made her go do something else. I really wanted to meet all the characters we could since it was our last chance to use our Genie pass and so next we went to this big circus tent where you could meet Minnie, Daisy, Donald and Goofy.
We decided to head to Epcot because I knew Avery would want to meet Anna and Elsa. While walking back to the park entrance there was a parade going on with all kinds of characters dancing in the street! Watching my dad dance around was one of the best parts of the day. :)
Once at Epcot we headed straight to the Norway Pavillion where Anna and Elsa were. All we had to do was follow the line of little girls in Elsa dresses! :) I quickly found the worker in the blue shirt and explained our situation and showed her our genie pass. She escorted us past a FOUR HOUR wait. I felt terrible at first and had to keep telling myself that I would much rather trade waiting in line to a year of what Avery had to go through. Once again the worker there was especially sweet. Once he saw that Avery was a wish child he made sure to give me a Cinderella pin he had to add to her pin collection.
After meeting Anna and Elsa we stopped at a restaurant in Mexico to have dinner. I had picked pretty much every single place we went to eat before we left on the trip and decided to let Thomas take a turn deciding where to eat :)
Once we'd eaten we decided to take a trip over to France and on the way over there we saw Alice from Alice in Wonderland! We were escorted again to the front of the line and while walking the worker told us that the Genie pass is really the ONLY thing that will get you to the front of character lines. Other disabilities will get you in front of rides but they aren't allowed to with character lines unless you had that pass. I was so glad we had taken advantage in as many places as we could! Alice was very cute with Avery. She taught Avery how to curtsey and told her to say "Yes, your MAJESTY!" I don't really think Avery knew what she was talking about but she was excited to meet her anyway.
When we got to France we of COURSE had to order as many pastries/treats as we could! I think we ended up with six different desserts to try and they were delicious! It started getting dark and we were all pretty tired. My dad, Thomas and I went for one last ride on the Test Track and had a lot of fun designing our own cars.
We headed right to our hotel to check in and crash for the night.
Friday, July 25, 2014
Make a Wish Trip Day 6 - Universal Studios
We spent our 6th day at Universal Studios! My parents had flown in the night before and they met us at Give Kids the World so we could head to the park together.
We spent a little bit of time hanging around Give Kids the World so they could see it and had breakfast at the Gingerbread House before we left.
We headed to Universal Studios and I had mapped out pretty much our whole day. Universal Orlando is broken up into two different parks - Universal Island of Adventure and Universal Studios. We went to Island of Adventure first because my parents were wanting to see Harry Potter world and I had heard that section of the park gets crowded really fast. On the way in there is Suess Land which is perfect for Avery so we stopped there first to ride the Cat and the Hat ride. She absolutely loved it! We must have gone four or five times in a row before we decided we needed a break! She definitely could've kept going.
After that my parents and I headed up to Harry Potter World. Avery didn't like the look of the castle and immediately started to freak out a little when we got near it so Thomas took her back down to Suess land while we explored the park a little bit. We stopped in HoneyDukes to look at the candy, we went on Flight of the Hippogriff (which is about as roller coaster as I get! :)) and Harry Potter and the Forbidden Journey. That last ride I got so sick on the first time, but I knew my parents wouldn't go unless I did so I sucked it up and went again! This ride is really intense but it's definitely a "must go" while you are there and the second time I could keep my eyes open a little bit longer. :)
Ave had gotten really used to sleeping in her stroller so we met up with Thomas after she'd woken up from her nap to go down to the Jurassic Park ride and eat lunch. Avery wasn't tall enough to go on the ride so we stayed behind to play some games. I have never been very good at carnival type games but I ended up winning two stuffed animals for her! She was pretty impressed with me and I got to be the "cool parent" until Thomas got off the ride :). While walking around I noticed there was another child ride I had missed while planning called Pteranodon Fliers. The ride had over a two hour wait but once we had shown them our Gold Fast Pass they escorted us right up to the front of the line where Avery got to ride it twice! It was super short and I can't imagine waiting two hours to go on it but we had fun anyway!
After that we decided to head over to Universal Studios. There wasn't much for Avery to do at this park but there was a Curious George (who she loves) ball park so I knew we had to go there. On our way in we stopped at the Dispicable Me 3D ride because I knew Ave would enjoy it. While we were in line we saw another family wearing Make a Wish attire. We smiled at them and waved since we obviously had something in common and kept standing in line. The dad was right in front of us and was wearing a bracelet that said something like LCH awareness. My mom stopped him to tell him that Avery and his child had the same diagnosis!!! This is REALLY amazing because LCH is so rare that most people have never even heard of it. After the ride was over we met up with the mom and dad so we could talk a little. I can't really describe how it feels to know that someone else is going through the same thing that you are. It's comforting and awful at the same time to see another family affected by this disease. They were so sweet and we talked as long as our kids would allow before heading off on our way.
Next we headed to the Curious George Ball Park where there were a few other children's rides. We ended up on the Woody Woodpecker roller coaster and must've done that one four times before moving on. :) After the ball park Avery had pretty much had it. Going to theme parks five days in a row can really take a toll on a two year old so we headed back to Give Kids the World to relax for the rest of the night.
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