Fox and Broom

A mom's adventures in keeping healthy, keeping her sanity, and making stuff.

Archive for the tag “IOH”

The Legacy Retreat Part IV

February 3rd started with that amazing breakfast. Sam, Jesse, and Max were taken to their sessions. Gabriel, Sol, and I were sent to a large room for the final meeting.

You know it might be a hard meeting when you see tissue boxes every 3rd chair.

I am trying to remember this from memory, so it might be out of order. Jill, a volunteer and a coordinator, spoke to us about the legacy of Inheritance of Hope. How the effects continue afterwards. I know that I will forever be thankful to my volunteers. Rob, Anna, and Emily will always be important to me and my family. Gabriel and Solomon plan to be volunteers at future Retreats. I couldn’t be more proud. This is how the legacy continues; families are served then choose to serve other families. I think it is a beautiful way to pay it forward.

Deric Milligan took the stand after Jill. The 14+ kids were sent to their own groups. This was where the tissues really came into play. He spoke of the creation of Inheritance of Hope. He spoke of the families it has affected, including his own. His wife, Kristen, passed away in 2012. Three months before her passing, she had created a video message for all of the people being served by IoH. She was not able to make it to the Retreat that was happening at that time and her video was meant for those folks, with words of encouragement. I believe it is now shown at all Retreats. If you wish to see it, it can be found here.

The final meeting was hard and beautiful.

Our volunteers gave us a gift of a photo book and a very large stack of pictures. It was such an unexpected thing and I couldn’t hold back more tears.

We were supposed to go to SeaWorld, but made the decision to go back to Universal. Our tickets and Goldpass were good for a second day. Why not?

With the rough morning, Gabriel bought the whole family lots of candy at the first candy store we came to. We had jellybeans for weeks. We went on rides we hadn’t made it to the day before, as well as a few rides we had ridden, and just thoroughly enjoyed ourselves.

Mardi Gras was happening at Universal. We managed to see a little bit of the parade as we were leaving. People were dressed in amazing costumes all day.

We were too tired to try to find a place to eat, so we just made PB& J sandwiches for the little guys and PB & banana sandwiches for Gabriel, Sol, and myself. It was a good ending to our day.

The Legacy Retreat Part III

February 2nd was a full day. Lots of laughter, love, sadness, grief, and healing. This day is what makes Inheritance of Hope what it is.

We woke up early to indulge in the tasty buffet. My mom went to church while we went to our sessions. She waited on us to be done before she drove home. Rob had managed to put together a picture of her and I in a frame to give to her. She’d had a fun time with us, but had some work waiting for her and she had no interest in going to Universal Studios.

I won’t discuss the sessions, but I will tell you that I brought up Camp Kesem. If you are unfamiliar with this organization, please look it up. Especially if you, a family member, or a friend has kid(s) and has been affected by cancer. My older kids will be going for their fourth year this summer. My kids always come back happier and more confident.

The kids threw eggs in their sessions.

I am pretty sure Max just threw eggs to throw eggs.
Jesse definitely just wanted to throw eggs.
Sol got some satisfaction in throwing the eggs.

They were to write something on the egg that scared them and throw it as hard as they could. If it weren’t so messy, this would be a great stress reliever in general. We might do this or something similar every once in a while at home.

To make it quick, we got on the bus, got our lunches, and landed at Universal Studios. It was super sunny and perfect for a fun time outside. What I have not mentioned previously is that Gabriel and I were going to be leaving the park at around 4. The boys were staying with our volunteers to play until they dropped. Or until 10.

Obligatory dorky family photo. Laugh all you want, it was fun.

IOH gave us a Gold Pass. I had no idea such a creature existed. This wasn’t even in the realm of a Fastpass. It was something different. We would stroll up to the person checking Fastpasses, show them the Gold Pass, and they would call an escort for us. Ho-ly cow. We were usually led to a door and taken to the ride through back hallways, allowing us to go ahead of the Fastpass and regular passes.

We went on Minions and Transformers. Max LOVED Transformers. We spent some time in Diagon Alley, then a lot more time in Hogsmeade. Jesse got his wand. We rode Escape From Gringott’s and went on Hagrid’s motorcycle ride twice. That ride is awwwwwwwesome. Poor Sam hit his head pretty hard while riding on it and was no longer so enthused about it.

I am laughing because Megatron moved and Gabriel jumped. I told him I would protect him from Megatron.
The sidecar was fun, but I prefer being on the motorbike.

Gabe, Max, and I went back to the hotel. Max was so worn out that he fell asleep on the bus. When we took him to the toddler area, they put a pillow down for him. He woke up enough to see the pillow and ran to it. For a little monster, he can be so cute. I suspect it is his survival mechanism.

Gabriel and I were scheduled for 4 things. The first item on our list was a visit with a counselor. This sounds like a weird start to a date night, but it helped clear the air. I am not so good at expressing myself. I hold my thoughts to myself as if they are precious stones. It’s kind of a Scorpio thing, I guess. I let Gabe take some of those stones and I left feeling lighter and he seemed happier that I had let him take some of the load.

We separated to get pampered. He got a massage and a new shirt. I had my makeup done, picked out some Kendra Scott pretties, and new clothes from Dillard’s. My makeup had taken up more time than it should have, so we were rushed to our next appointment.

The Legacy Video.

This is probably the most important thing that came from the retreat. I wasn’t sure I would be able to do this. I was afraid that it would just be 10 minutes of me weeping. This is the hardest thing in the world. I made a video, with Gabriel, for my family. It is a visual and auditory reminder of me: my face, my voice, my personality. It is something for my family to hold on to after I have left this plane of existence.

I got the courage to do it from our volunteers, many of whom had been served on previous retreats. I got the courage from videos of the children of parents who had passed. I got the courage from people who spoke about how much it meant to them to have something like this as a reminder of a loved one.

So I just started talking. I pulled up memories. Gabriel has been a part of my life for so long that he was able to talk about the same memories with me. The talking became easier and the anxiety just disappeared. I told my boys silly stories about things I had done. I told them about silly things they had done. I told them how proud I am of all of them. How so very talented each one is in his own way.

My heart felt so good after we had finished. I knew that I would have to rewrite the letters that I had originally written in my IoH application. I will have to write more than one letter to each person. It was an inspiring experience.

We were then sent to Bonefish Grill for our date. We shared our table with two other couples. We had good conversations and good food.

We met up with our kids when we got back to the hotel. I was worried that Max would be too refreshed to sleep, but he was ready for a full night’s sleep. The boys had had a lot of fun playing around at Universal. They had spent most of their time casting spells in Hogsmeade and Diagon Alley. They were totally satisfied with the day. Our poor volunteers look exhausted.

Someone once told me to learn something new everyday. I learned many new things on this day. It was a good day.

The Legacy Retreat Part II

I suppose I should cut any surprise anyone might have and admit that I used a wheelchair. It’s going to be visible in this post. I hate wheelchairs passionately. The last time I was stuck in one, I was so weak and in so much pain that I had trouble speaking. They evoke memories that I don’t like to revisit.

Now that I got the hate on wheelchairs out of the way, I will explain it.

Somewhere around November, I started having horrible back pain. I started limping and there were more than a few times when my right leg decided it was done being a leg. It happened once while I was going downstairs. About scared the pee out of me. But I didn’t spill my coffee.

My next scans showed that I had two compressed discs in my back. No idea when or why they happened. It explained the pain and the leg suddenly crapping out on me. My oncologist, Dr. C, actually happened to be around when it did its thing.

“Does this happen often?”

I had to admit that it did. He had an office assistant get a cane for me. It was one with four feet. I tripped over it instantly, cuz that is how I roll. My husband got me one with just one foot for Christmas. It is beautiful, with a raven as the handle.

When I filled out more paperwork in November/December for the retreat, I was asked if I would like to use a wheelchair. I chose to use a wheelchair just at the parks.

I started a new chemo in December. By early January, I was no longer limping. I gave up using my lovely cane. I still had an appointment with a pain doctor and kept it to ask him about this.

With my new chemo, I take a lot of steroids. The steroids took care of the back pain. I don’t need a steroid shot at the moment, I ingest enough to help. I am happy to take the pills if I don’t have to get that injection.

There were two things that I did not think of.

I get Zometa injections with my chemo. Zometa helps to keep my bones from falling apart. It has the scary side effect of necrosis of the jaw. I have to let my oncologist know if I will need any sort of jaw, tooth, or gum surgery. I take very good care of my mouth. I have never flossed so much in my life and I see my dentist twice a year.

Another side effect of Zometa is acute bone pain. This can be helped with Claritin. Yes, the allergy med. It has an ingredient that honestly helps with bone pain. Most of the time.

The second thing I did not consider were the Granix injections I take after my chemo. I get the Granix sent to my house and I inject myself for five days after my chemo. The Granix helps to plump up my white blood cells and keeps my immune system working decently. Chemo is really rough on the cells. Guess what one of the side effects can be. Yep. Bone pain.

When we left for Orlando, I had gotten an infusion two days prior. By the time we had arrived, I was having trouble standing up and some trouble walking. I was glad that I had asked for the wheelchair ahead of time.

Now that I have the long, drawn out version of the explanation taken care of, let’s get into February 1, Day 2 of the Retreat.

To start the day off right, we shook ourselves out of bed at 6:30 am. We had tickets for the breakfast buffet at Tradewinds. I have never had a buffet like this in my life. The cook made a custom omelet right in front of you. You could get fresh squeezed orange juice. If you wanted honey, you scraped it off of the honeycomb. It was amazing. I never did get an omelet, but I had scrambled eggs and oatmeal every morning. I am still trying to figure out how they made the eggs. They were the fluffiest, most delicious scrambled eggs I have ever had. I have tried many different styles of scrambling eggs since I got home and none of them are the same.

After breakfast, we went to our sessions. I wish I had written down the topics, but I won’t be writing about anything that was spoken in our groups, anyway. That is private.

After we got the boys from their groups, we headed out to the buses and loaded up. My mom was able to ride the bus with us. I wasn’t sure if she would be allowed. We were given our lunches that had been ordered in December. I couldn’t remember what I had ordered for everyone. It was kind of like Christmas.

Our first park was Magic Kingdom at DisneyWorld. I grew up going here pretty often. It still makes me smile.

We had five volunteers with us. They were awesome. Rob had the whole Fastpass thing down pat. I was in awe of his skills. The Fastpass is not something that I grew up with and I haven’t been to DW often enough in recent years to figure it out. We went on more rides than I think I have been able to go on since the ’90’s. The boys had fun. Gabriel had fun. I had a blast.

I didn’t go on all of the rides. There were some where I just wanted to watch my boys smile. It was a perfect day.

By the time 8pm rolled around, along with the first bus back to the hotel, we were ready to leave.

The hotel housekeeping had left us a few surprises. Milk and cookies and origami towels. The boys had a swan in their bathroom. It was no longer a swan when I tried to take a picture. Gabriel and I had Baby Yoda. Squee!

A funny bit of trivia to end this post: I found out that one of my volunteers has a daughter who has my brother as a teacher. It is a small world after all.

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