Monthly Archives: December 2014

Welcome Home!

AJ is happy to see his aunties Mitzi and Charise.

AJ is happy to see his aunties Mitzi and Charise.

Aunt Char-ee missed AJ so much she came and kidnapped him one night. aka, Spoiling him even more than before, she couldn't stand him crying when she stopped by one night so she grabbed him and took him home to sleep in her bed for snuggles.

Aunt Char-ee missed AJ so much she came and kidnapped him one night. aka, Spoiling him even more than before, she couldn’t stand him crying when she stopped by one night so she grabbed him and took him home to sleep in her bed for snuggles.

We are home!

We are so excited to all be back under one roof! It has been a week and we are finally getting all unpacked, laundry done, house getting cleaner, and settling back in. Our whole family has gotten sick since we got back. It is like all of the germs were building up in our bodies knowing that they couldn’t come out while we were staying at the Ronald McDonald House and are now making up for it!

 

Back to real life outside of our cancer bubble. We have spent the week so happy to be together as a family: going to nativity celebrations, Frozen on Ice, a welcome home party for AJ, cleaning, hanging Christmas decorations, and adjusting to life in our new phase. Since AJ was diagnosed on Sept 12, we had only been home as a family for 2 weeks. Since then we have been to Disney World, had our parents move home from Africa to live with us, and 8 weeks in Jacksonville for treatment.

AJ falls asleep in random places now because he is still quite tired. This was at church on Sunday.

AJ falls asleep in random places now because he is still quite tired. This was at church on Sunday.

Silly Papa Gates wearing  Hadley's princess wig.

Silly Papa Gates wearing Hadley’s princess wig at Disney on Ice.

 

We are getting adjusted to our new living arrangements and after so long are happy to discover our bedroom has a floor! We were starting to question it based on the piles and suitcases we just kept swapping each quick visit home. AJ is doing great, other than his new found narcoleptic-like lifestyle where he falls asleep randomly throughout the day.

 

Thank you for all your prayers and love! AJ has minor surgery to remove his port on Tuesday (Dec 23) and then we wait until February for our next MRI to see how the tumor looks. In the mean time, we will continue to post thoughts and entries that I never finished while in Jacksonville.

Happiness!

Happiness!

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We love Dad! | “Hijacked” photos of AJ

[Now that AJ’s proton therapy treatment is completed and he and MeiLani are home, we’re picking back up on posting photos we hijacked from MeiLani’s phone. Click here to see past “hijacked” or “hacked” photos. — Chuck]

We love Dad!

We love Dad! (taken September 20, 2014)

AJ loves Hobby Lobby! | “Hijacked” photos of AJ

[Now that AJ’s proton therapy treatment is completed and he and MeiLani are home, we’re picking back up on posting photos we hijacked from MeiLani’s phone. Click here to see past “hijacked” or “hacked” photos. — Chuck]

We went to Hobby Lobby to pick up something for Grammy. AJ found planes instead.

They went to Hobby Lobby in Jacksonville to pick up something for Grammy that was out of stock in North Carolina. AJ found planes instead. (Taken on December 5)

Hero of the Day: Isabella Harvey & her bald princess

Isabella Harvey and her bald princess

Isabella Harvey and her bald princess

Our hero of the day is five-year-old Isabella Harvey, who is battling leukemia for the second time and the three organizations that created a special memory for Isabella last month.

Thanks to the wonderful folks at Gianna Nicole’s Heart of Hope, Isabella “got the surprise of a lifetime” when she was surprised with a special photo shoot with her favorite Disney princess, Cinderella. “But this was no ordinary Cinderella. This gown-wearing beauty was bald — just like Isabella, who lost her hair to her battles with the disease and had to have a plate inserted into her head as a result of her treatment.”

GNHofH worked with Mother Hubbard Photography and Bella Princess, who specialize in taking princess-themed photo shoots.

The goals of Gianna Nicole’s Heart of Hope are “to assist other families battling pediatric cancer and to enrich our community in ways that would honor our precious angel. No family should ever have to endure the burden of financial difficulty while fighting for their child’s life. Our hope is that these families will be able to focus only on their child’s life and not the financial burdens that come along with this dreadful disease.”

[Read the full story and see the photos on BuzzFeed or MTV.]

He’s home!

Graduation day means saying goodbye

The Giving Bike

The_Giving_TreeI don’t know why but I’ve thought a lot about the children’s book “The Giving Tree” this past week. Overall, I’m not a huge fan of the book (because I feel like the boy just takes advantage of the tree) but I’ve thought about the evolution of the relationship between the boy and the tree. It reminds me of the relationship between AJ and his bike throughout seven weeks of radiation.

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The hospital hog

We have been so lucky with pretty minimal side effects, but his relationship with his “hospital hog” demonstrates that having nuclear radiation shot into his brain every day has had an impact.

Our first week here, he could not get enough of it! He would ride it to every doctor appointment, every radiation treatment, the mall, the grocery store, and our daily walks along the riverfront after treatment or at sunset.

On the eve of his last proton therapy treatments, our little boy is exhausted. His body gets worn out so much faster. About three times a day he will have major meltdowns from sheer exhaustion. In talking with some of the prostate patients, they said by their last week and for about a week after, they just wanted to stay in bed and sleep.

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So very tired, so much of the time.

Last week we went to our usual launching point for our bike ride. AJ laid on the ground and said , “Please no mommy! The bench!”

When I ask if he wants to ride it into his therapy appointments, he replies, “No mommy, you carry me!” Instead of him riding it around the mall or grocery store, he prefers to lay with his blankey and snuggle.

His poor little body is worn out. So my sweet boy, until further notice I will gladly hold you on my lap at the bench, carry you each day to your doctor appointments, and pad your bed with groceries.

We will miss our Jacksonville Sunsets

We will miss our Jacksonville sunsets

Can a gift given 2,000 years ago still matter today?

The reason for the season:

Merry Christmas!

Thank you Jay Fund for a great day!

Is it weird that I don’t want it to end? …Our Supreme Test

AJ's sticker chart for each day we have radiation! Almost there!

AJ’s sticker chart for each day we have radiation! Almost there!

Last night, I found myself very nostalgic. I sat and watched my baby boy sleep, his long brown eyelashes against his beautiful pale puffy cheeks.  It was my last night to have just him and me as daddy, papa, and Houst are joining us tonight for our last weekend (aka graduation party all weekend long!) before finishing on Monday.

Is it weird that I kept thinking, “I’m not ready for is to end”? What a weird thing to say, right? There are two reasons for me feeling this way…

Radiation Vacation

Radiation Vacation

First, I really have enjoyed this special time.How many moms get to spend this much one-on-one time with their third child? No work, no cleaning, no appointments (lol, except seven doctor appointments a week I guess). My number one focus was AJ – keeping him healthy, happy, and eating.

If that meant sitting and watching him play at the mall play place for two hours, I did it! If that meant sitting in the car when he falls asleep so he gets his nap instead of possibly waking him when transferring him, I did it. If that meant letting him eat two cupcakes for dinner just so he was getting calories, I did it. I truly have enjoyed this special time with my sweet AJ. No matter what happens, I will treasure these past seven weeks for eternity!

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Chilling in the car during nap time.

But then I realized my desire to stay had an even greater driving force… I realized that come Monday, when we are done with radiation, done with oncology checks, done with the Ronald McDonald House, done with Florida…

The next thing on the list to do is to go home, back to regular life, and just wait…. and wait…. and wait…

And I am not good at waiting!

Houston's favorite person-- Nurse Gina

Houston’s favorite person – Nurse Gina. He loves to get on matching gloves and “help her”.

From here on out, there is nothing else we can do to fight cancer other than pray and have faith. There is nothing else the doctors can do! We will have about eight MRIs over the next two years that will reveal if radiation worked. If we find the tumor is still growing then we will take it from there (possibly talking invasive brain surgery or limited-success chemotherapy with lots of side effects).

Each day here, I’ve felt like I was doing something to fight cancer. Come Tuesday, it is 100% in the Lord’s hands. And even though I have great faith that He knows the greater plan for my family, it is still humbling and hard to completely turn it over to Him.

Elder Wickman of the Seventy said, “Mortality’s supreme test is to face the “why” and then let it go, trusting humbly in the Lord’s promise that ‘all things must come to pass in their time'” (D&C 64:32).

Well… Here comes our supreme test then…wish us luck and keep us in your prayers. We greatly appreciate them!