Tuesday, July 23, 2019
#HealingForHaylie-Post 101
And just like that, Haylie is off to Camp Esperanza. It’s the hospital
camp for all the kids with cancer. Last year she had only been home
from the hospital for 3 weeks and it was rough. She went to camp in her
wheelchair and had to get transported back to the hospital mid week for a
blood transfusion. 😬 This week is going be great!
Monday, July 22, 2019
#HealingForHaylie-Post 100
Haylie update - July 20, 2019
The last few weeks have been a challenge. The verse, in this world, you will have trouble came to mind several times. It seems we have been up against so many obstacles lately. The last year has been the season of ”no” it seems. Our oncologist has said no lakes, no community swimming pools, no Galveston beach...Haylie said she just wants to spoil all of her fun. 🙈 We were so excited when we got accepted by Lighthouse ministries for a retreat for families going through cancer to spend a week in Destin.
Haylie absolutely loves the beach and has always wanted to go to a beautiful white sand beach. We had planned a family vacation last summer to go on a cruise and take the kids to some amazing beaches, then we had Haylie’s diagnosis, spent the summer in the hospital and everything was canceled. She even has her room decorated in a beach theme. It has always been her dream. Finally, a bright spot.
For the past few months when we watched others getting to do fun things and she couldn’t I just kept telling her, it’s ok, you get to go to Destin to the beautiful beach. We had planned on leaving on Sunday but the hurricane changed our plans. We ended up leaving on Sat afternoon to get ahead of the storm. After driving through some outer rain bands and a tornado 🌪 we ended up in Florida at 4am. Thank you to the Lairsen’s who callled ahead and reserved a hotel for us right on the beach. Haylie found her happy place! The double red flags prevented us from getting in the water but it was so beautiful.
On Monday we arrived at the Lighthouse retreat. I actually cried when we got to the room and I saw the beautiful view. It was like we finally had a week to just rest. Then the bad news...the flesh eating bacteria level had risen and Haylie’s oncologist said it wasn’t safe for her to get in the water. Oh the tears. To be so close to the water and not allowed to get in, it was just heartbreaking to witness honestly.
I’m so thankful for the amazing volunteers that still made this an unforgettable beach week without even getting in the water. My absolute favorite time was Common Ground, where other parents going through cancer just shared their journey. I was amazed listening to them talk and my heart feeling exactly the same thing. To be around other families who completely understood what it was like, it helped me more than I ever imagined. God knew exactly what I needed.
On Thursday we were able to go parasailing. I found a place that said Haylie could take off from the back of the boat and land back on the boat without getting in the water. It was definitely a highlight! We then played a little miniature golf and had a steak dinner so it was a great family day.
So, in this world we will have trouble, that is a guarantee. Plans don’t go as expected. But I love the end of the verse...but take heart, because I have overcome the world. Thank you Jesus! We have a future hope that is greater than any disappointment we might have here.
We are headed home now and I am thankful for this week. For the laughs, tears and memories. Destin was beautiful and we will definitely be back, and next time, we are hoping to even be able to get in the water. 😉
The last few weeks have been a challenge. The verse, in this world, you will have trouble came to mind several times. It seems we have been up against so many obstacles lately. The last year has been the season of ”no” it seems. Our oncologist has said no lakes, no community swimming pools, no Galveston beach...Haylie said she just wants to spoil all of her fun. 🙈 We were so excited when we got accepted by Lighthouse ministries for a retreat for families going through cancer to spend a week in Destin.
Haylie absolutely loves the beach and has always wanted to go to a beautiful white sand beach. We had planned a family vacation last summer to go on a cruise and take the kids to some amazing beaches, then we had Haylie’s diagnosis, spent the summer in the hospital and everything was canceled. She even has her room decorated in a beach theme. It has always been her dream. Finally, a bright spot.
For the past few months when we watched others getting to do fun things and she couldn’t I just kept telling her, it’s ok, you get to go to Destin to the beautiful beach. We had planned on leaving on Sunday but the hurricane changed our plans. We ended up leaving on Sat afternoon to get ahead of the storm. After driving through some outer rain bands and a tornado 🌪 we ended up in Florida at 4am. Thank you to the Lairsen’s who callled ahead and reserved a hotel for us right on the beach. Haylie found her happy place! The double red flags prevented us from getting in the water but it was so beautiful.
On Monday we arrived at the Lighthouse retreat. I actually cried when we got to the room and I saw the beautiful view. It was like we finally had a week to just rest. Then the bad news...the flesh eating bacteria level had risen and Haylie’s oncologist said it wasn’t safe for her to get in the water. Oh the tears. To be so close to the water and not allowed to get in, it was just heartbreaking to witness honestly.
I’m so thankful for the amazing volunteers that still made this an unforgettable beach week without even getting in the water. My absolute favorite time was Common Ground, where other parents going through cancer just shared their journey. I was amazed listening to them talk and my heart feeling exactly the same thing. To be around other families who completely understood what it was like, it helped me more than I ever imagined. God knew exactly what I needed.
On Thursday we were able to go parasailing. I found a place that said Haylie could take off from the back of the boat and land back on the boat without getting in the water. It was definitely a highlight! We then played a little miniature golf and had a steak dinner so it was a great family day.
So, in this world we will have trouble, that is a guarantee. Plans don’t go as expected. But I love the end of the verse...but take heart, because I have overcome the world. Thank you Jesus! We have a future hope that is greater than any disappointment we might have here.
We are headed home now and I am thankful for this week. For the laughs, tears and memories. Destin was beautiful and we will definitely be back, and next time, we are hoping to even be able to get in the water. 😉
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| Running to the white sand beach for the first time! It’s her happy place! |
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| Awe, love the beach! |
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| On the pier where we saw dolphins! |
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| 30A! Now we finally know what that stands for. 😂 |
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| Beach picnic and luau at the retreat! |
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| Having fun in the sand |
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| We finally have a beach picture! |
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| So close...next time |
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| Brennen finding shells for Haylie |
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| Parents date night! |
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| Haylie and Michael parasailing! |
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| Brennen and I parasailing |
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| On the boat |
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| A competitive game of putt putt! |
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| Our view for the week. |
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| Our wonderful family partners that volunteered and served us all week. |
Tuesday, June 25, 2019
#HealingForHaylie-Post 99
Haylie update - June 24
Today Haylie finished her last day of her 5 days of her hospital chemo. Yay! We are so thankful to be done with this round. It started out a little shaky when the nurse missed her port on the first day...again. That is the 5th time that her port was missed. 🤦🏽♀️. Thankfully another one of our favorite nurses stepped in and accessed it right away. Haylie decided to leave her port in because she was pretty sore for the first 4 days. This proved to be a challenge every night when she wanted it out to sleep, but turned into a positive every morning when she didn’t have to be accessed again and again.
Today Haylie finished her last day of her 5 days of her hospital chemo. Yay! We are so thankful to be done with this round. It started out a little shaky when the nurse missed her port on the first day...again. That is the 5th time that her port was missed. 🤦🏽♀️. Thankfully another one of our favorite nurses stepped in and accessed it right away. Haylie decided to leave her port in because she was pretty sore for the first 4 days. This proved to be a challenge every night when she wanted it out to sleep, but turned into a positive every morning when she didn’t have to be accessed again and again.
Her body continues
to get stronger! She has tolerated the nelarabine (chemo) really well
with round. Thank you everyone for the prayers. Her bloodwork looked
great on Thur. The good news is she won’t have to take the steroids this
month because she had the 5 straight days of chemo. We are hopeful that
this will be her best feeling month yet and we can really enjoy summer.
She started physical therapy last Wednesday to try and get some of her strength back. She is still struggling in some areas, but I can’t tell you how much better she is today than 2 months ago. God is good and continues to go before us. She has taught me so much. I think I’ve learned more this year about life than in my last 15. She wanted to eat dinner on the fancy China and I figured why not! Before, I probably would have said no because I didn’t want to wash it all and I would have missed a fun family memory. Better enjoy some of the fun things in life now so you don’t look back and regret not really living. Make time for family and friends and tell people how much you love and appreciate them.
Facebook has done a great job of reminding me of what was happening everyday last year. A year ago I was rejoicing that I finally was able to get back to the hospital after being out sick and then having to have my emergency surgery. Man, June was a tough month on us last year.
I was also reminded of the way friends, family and our community loved on us during that time to get us through. We are so incredibly blessed. Thank you everyone for supporting and praying us through our journey. Haylie still has over a year of chemo treatments left, but I continue to stand in awe as I look back and see how far we have come.
#HealingForHaylie
She started physical therapy last Wednesday to try and get some of her strength back. She is still struggling in some areas, but I can’t tell you how much better she is today than 2 months ago. God is good and continues to go before us. She has taught me so much. I think I’ve learned more this year about life than in my last 15. She wanted to eat dinner on the fancy China and I figured why not! Before, I probably would have said no because I didn’t want to wash it all and I would have missed a fun family memory. Better enjoy some of the fun things in life now so you don’t look back and regret not really living. Make time for family and friends and tell people how much you love and appreciate them.
Facebook has done a great job of reminding me of what was happening everyday last year. A year ago I was rejoicing that I finally was able to get back to the hospital after being out sick and then having to have my emergency surgery. Man, June was a tough month on us last year.
I was also reminded of the way friends, family and our community loved on us during that time to get us through. We are so incredibly blessed. Thank you everyone for supporting and praying us through our journey. Haylie still has over a year of chemo treatments left, but I continue to stand in awe as I look back and see how far we have come.
#HealingForHaylie
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| Getting started on day 1 this round |
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| Finishing day 2 |
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| Our sterile face |
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| Our little helper |
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| Dr Leavy! |
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| Working on her balance |
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| Eating dinner on the fancy China just for fun |
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