Monthly Archives: November 2014

Cuddling trumps boat parade and fireworks.

Michael's last night in Jacksonville (2)

Cuddling with Dad

Michael's last night in Jacksonville (3)

Watching Lightning McQueen

[Taken from MeiLani’s Facebook post on November 29]

It has taken 8 years of marriage, 5 years of kids, and a 2-year old with a brain tumor to help me realize that I’m not a bad mom if I decide to stay in and snuggle for daddy’s last night in town instead of taking a tired 2-year old cancer patient and a 4-month old to a late-night Christmas boat parade and fireworks.

(You know that if my two older kids were here we would have been all over it!)

I love how AJ is pinching Hunter’s cheeks. I’m not sure it is a sign of endearment or to make sure he is focused on lightning McQueen.

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When you’re in the papes, you’re famous!

Families_form_special_bond_for_Thanksgiving_at_Jacksonville_Ronald_McDonald_House[Taken from MeiLani’s Facebook post on November 28]

Some of our friends made the Jacksonville newspaper!

On Thanksgiving Day, 7-year-old Oliver Crowson, his parents, three siblings and grandmother will be six hours away from their Marietta, Ga., home.

They will be in Jacksonville, at the soon-to-be expanded Ronald McDonald House, a free home for families of critically ill children receiving treatment at local hospitals. They will celebrate blessings they did not appreciate quite so much three months ago.

That was when Oliver started having headaches and vomiting. Both were unusual for the very active Oliver.

“I never get sick,” he said.

Initially his parents, Katie and Chase Crowson, were not all that worried. An X-ray showed something suspicious at the top of his spine, but they figured he just hit his head. A subsequent MRI revealed a tumor larger than a golf ball in his cerebellum. He had brain cancer.

The worrying then began.

Click here to read the full article.

We have loved spending Thanksgiving and these two special months with our RMH family. Remember, it’s easy to help raise funds for the Ronald McDonald House of Jacksonville. All you have to do is collect soda can tabs!

Everyone knows… “You’re in the papes, you’re famous!”

“On Gratitude”

“Regardless of our circumstances, each of us has much for which to be grateful, if we but pause and contemplate our blessings.”

Good news! …kiss my babies for me!

After a 3+ hour delay this morning with trying to fit people in who didn’t get their treatment even after the Proton team stayed into the late hours last night — the machine is still working!!!

Aj had his treatment this morning a few hours late. Then the dr met with us and scheduled another proton treatment for AJ on Friday to get a third treatment in this week! (less than 4 is bad… less than 3 is really bad) Yea!!! THANK YOU University of Florida Proton Institute for coming back in on your Thanksgiving vacation to help our kiddos!!!

MeiLani is heading back down to FL with Hunter so AJ and daddy won’t be lonely for Thanksgiving. Houst and Hadley will stay here in NC for the holiday weekend. If you see them- please give them a hug for us since they will not be with mommy and daddy for the holiday.

Give our Houst and Hadley kisses from us if you see them this weekend! So grateful to have 4 hours to sit and hold this little man!

Give our Houst and Hadley kisses from us if you see them this weekend! So grateful to have 4 hours to sit and hold this little man!

A HUGE THANK YOU to all of those who have donated to http://www.fundly.com/savethecheeks. I was not looking forward to driving back down to FL tonight until my family reminded me that THAT is why my wonderful angels are donating — to make my life easier. Hunter and I were on a flight within 3 hours!

I will miss watching the Turkey Bowl tomorrow. I don’t think it has even crossed Michael’s mind yet. We might have to cook up another Football game when we get back because he will be sad to miss out. Save some of your strength men!

The machine is running!

Thank you for the many prayers on our behalf today. Many of you have told me that your kids are joining in on the fast. Please give them a big hug and tell them THANK YOU!!!

I was sitting here starting to worry that if the machine doesn’t get going soon, these kids will doubt the power of fasting. I was really hoping to have good news for you to announce to them when they break their fast at dinner. Within minutes, I received news that…

THE MACHINE IS RUNNING!!!!

Cyclotron is fixed mom

Smile Mom! God helped them.

They are just opening one of the three rooms (the children’s room) to test its strength. Please pray that it doesn’t overheat and shut down again. And please know, and let your kids know, we appreciate their prayers and faith!

AJ is scheduled to be 2nd in line tomorrow for a proton treatment!!!

Cyclotron is fixed - thank you

Our faith, prayers, and fasting is not in vain!

praying handsTHANK YOU!

I want you all to know that your faith and prayers are not in vain. Words cannot explain how much they have lifted our spirits today and last night!

Yesterday was a hard day for me. Really hard. All the things I usually try to do to help get my mind in a good place were not working. Hugging my children just made me miss the one that wasn’t there. Cleaning was more just walking in circles holding things because I was unable to focus. While walking for exercise with my newborn, I found myself on the green belt curled up in a ball next to the stroller in tears. My head was a mess. I couldn’t stop thinking of the picture they had painted of what conventional (photon) radiation might do to his little growing brain.

I want each of you to know that we have felt your prayers! Michael and I went to bed at peace with the news that AJ was headed to photon today. As I shared with my family last night, we do not always Understand the Lord’s Plan (recounted by Mitzi)- but we do KNOW that He has one. After being so terrified of photon therapy most of the day yesterday, for some reason now it just feels right.

AJ had his first round of photon this morning which we are at peace with and feel good about. We are scheduled for another round tomorrow if the machine is not back up and working yet, which makes us nervous.

If the machine is not back up and running by Sunday… I will be back… curled up on the green belt if anyone would like to come cry with me 🙂 More than two photon treatments leaves too many unknowns for our AJ.

Thank you for your continued prayers to lift us and to fix that machine fast!

Can AJ Switch to Another Treatment Center?

Proton Therapy Centers Location Map and ListingsSince the proton machine in Jacksonville is broken, I have had many people ask whether AJ can just go to another treatment center. There are many reasons why this won’t work:

1)  There are only a few dozen proton treatment centers in the entire world and only a handful of which excel in pediatric care.

2) The next closest treatment center of the same caliber recommended highly for pediatric patients is in Boston, which has an approximately 6-week long waiting list.

Hacked photos of AJ - Mask3) Even if we went to one of the other lesser known or lesser experienced pediatric proton locations, they would have to start the logistical process that would take many days. There is a special Mask that AJ has to wear that was molded for his face for this particular machine.

With every day that passes w/o treatment, the tumor’s blood supply regains strength.

Proton vs conventional radiation therapy

Radiation Therapy

braintumorcomparison_graphicRadiation therapy is a treatment for cancer using high-energy radiation to kill cancer cells.

The cancerous cells are shot with a laser beam to strip electrons from the nucleus of atoms that are part of the molecules of the cells. This damages the DNA of cancer cells, ultimately causing their death and eliminating their ability to proliferate. Without healthy DNA, the cancer cells can no longer function properly or repair themselves, leading to apoptosis — or programmed cell death. If you deliver enough radiation to the tumor, all the cancer cells will die.

Radiation therapy can damage normal cells as well as cancer cells. The only safe dose of radiation to healthy tissue is a zero dose. Therefore, treatment must be carefully planned to minimize side effects. The problem is that it is virtually impossible to only shoot cancerous cells while avoiding the healthy cells.

Benefits of proton radiation

proton vs conventionalProton therapy is a new type of radiation that more effectively targets cancer cells. Proton beams differ from photon beams mainly in the way they deposit energy in living tissue. The largest difference between the two is that proton therapy releases the bulk of its energy at one specific, concentrated area — radiation goes exactly where it’s supposed to go. Whereas conventional photon beams deposit energy in small packets all along their path through tissue.

In theory, using proton beams in place of conventional photon beams reduces the exposure of normal tissue to radiation, allowing the delivery of higher doses of radiation to a tumor. Because of this, physicians are able to act more aggressively, increasing the radiation dosage while limiting damage to healthy tissue and organs. This is especially relevant to AJ’s situation because proton therapy is less harmful to kids’ brains.

Video

Here is a video that explains the difference between proton and photon radiation. It also gives a picture of the incredible machine that delivers AJ’s treatment.

Our Limited Understanding of the Lord’s Greater Plan

God has a good plan for your lifeThe proton machine at the University of Florida Health Proton Therapy Institute has been broken for a few days, which means AJ can not receive his daily proton therapy. Most of the other patients received recommendations from their doctors to switch to photon therapy starting yesterday (Monday) until the machine is fixed. AJ’s circumstances are different. Due to his age and the size, location, and type of cancer, his doctor recommended we hold off on photon therapy one more day to prevent damage to the brain stem. She said if the machine was still broken on Tuesday, her recommendation would change because at that point AJ would just need the best treatment available- no matter which kind.

This was quite worrisome to many of us because of the things we have learned about the differences between proton and photon therapy. However, the doctors feel one or two rounds of photon treatment, although not optimal, will not cause excessive harm to AJ’s brain.

Later, Lani shared her feelings with me about the subject. She said that she has learned from all of this that we can’t judge the Lord’s plan. She recounted how before treatment began, the scheduler made and mistake which caused AJ’s start date to fall back four days. At that time, Lani was very frustrated because it meant they wouldn’t be done in time for Thanksgiving. The delay also meant that AJ would have to have an additional MRI because AJ’s most recent MRI would be 32 days old and the doctors required one within 30 days of beginning treatment. Lani explained that the mistake was actually an answer to prayer and a great blessing from God.

Because the scheduler messed up, which pushed back their start date, which caused them to have to have another MRI, the doctors discovered that AJ’s tumor was already growing back and was not originating from where they previously thought. This made it possible for them to know exactly where to focus the proton treatments.

After explaining this to me, Lani asked, “How are we to know that if maybe this tumor is in places that we don’t, the doctors don’t even know – but the Lord knows? How are we to know if maybe his little body needs a booster of 1 or 2 photon treatments in order to kill this thing? And if not his body, maybe someone else at the Proton Institute but the Lord knows it won’t make a difference to the rest of us.”

This morning at 9:00 AM, AJ had his first round of photon treatment. Again, the doctors feel this one round of photon treatment will not cause excessive harm to his brain. If we need to do more than two, then they will be quite worried.

We appreciate your faith on our behalf. And for those joining us in fasting, please know that we are not fasting in vain. We are really hoping that he only gets 1 or 2 photon treatments at most! So we still need to fast and pray that the machine will be fixed ASAP!

Lani and Michael have great faith. My little baby sister has taught me so much through this. Thank you all for praying and fasting with us.

Join us in a family fast

Fasting2 (Custom)Dear friends & family,

We just received notice that AJ’s treatment for today has been canceled. Most of the other patients have switched over to traditional radiation treatment (aka, photon radiation). A VERY ugly picture was painted as to what this type of treatment would do to AJ’s little two-year-old brain. So, the doctors have recommended that we wait and hope and pray that the machine is up and running tomorrow.

If the machine is still down at 11:00 AM tomorrow, we will be forced to do the photon treatment so that the tumor does not regain strength. This is a very scary scenario for AJ. Please join us in praying that the machine is fixed before then. In addition, the Hock family invites any who are interested to join them in fasting.

Jesus showed the importance of fasting by His own example (see Matthew 4:2; Luke 4:1–4).

Jesus showed the importance of fasting by His own example (see Matthew 4:2; Luke 4:1–4).

Fasting is a religious practice to draw closer to God or call upon Him for deeper answers to prayers. When we fast, we abstain from eating and drinking for at least two consecutive meals, while focusing on a personal plea we ask of God. When individuals and groups fast, we should also pray to understand God’s will and to develop greater spiritual strength. Beginning and ending with a prayer is the best way to open and close a fast.

Fasting is a principle of the gospel of Jesus Christ for developing spiritual strength; it has always existed among true believers. There are frequent references to fasting in the Old Testament and in the New Testament.

Beginning this evening, we will be fasting that the engineers working on the proton cyclotron will be blessed and guided to be able to find and fix the problem. We will also pray that our hearts be softened to be willing to accept God’s will as it pertains to AJ.

Thank you so much for your love, kindness, prayers, meals, care packages, donations and most of all faith.

Love the Hock and Gates families