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Ezra Tasman - Road to Recovery

$35,871 of $45,000 goal

Raised by 526 people in 5 months
Created March 20, 2019
Team Ezra
on behalf of Joshua Tasman
First, I would like to convey how grateful the Tasman’s are from all the messages, and support that have come in so far. I know they haven’t been able to respond to everyone but they want to thank everyone for their words of encouragement, support, and willingness to fill any need that has arose during this challenging time. Thank you doesn’t fully convey what they’ve felt from your support.


At the bottom of this text you’ll find a summary of the bullet points known as a [TL:DR] (too long, didn’t read). I know sometimes we just want the facts so we wanted to make sure that anyone who wants the facts can get at the bottom.


The Journey

Joshua, Jenni, and Ezra’s journey truly began near the end of last year. When Joshua had heart surgery the day after Christmas (18’) to replace a heart valve. Shortly after that (Feb 19’) Ezra had a bad case of bronchitis hospitalizing him for two days. Now they find themselves in the hospital again, this time with Ezra fighting for his life, because of a cancerous brain tumor.

Early last week, Ezra began vomiting constantly for 48 hours. Initially they had thought it was related to hitting his head a day prior and that he may have a concussion. When meeting with their pediatrician he immediately noticed Ezra's fontanelle (soft part of an infant's head) was bulged opposed to sunk as it should, and ordered an emergency CT scan.

On March 12th 2019 - 9 month old Ezra was diagnosed with a brain tumor and had severe swelling of the brain. The following morning Ezra began, a 2 part, 12 hour surgery to relieve pressure and remove the tumor on his Cerebral Cortex and Brainstem. A small step forward in his fight.

March 19th we were told that the tumor was found to be a rare, aggressive form of brain cancer called Atypical Teratoid Rhabdoid Tumor (ATRT). This form of cancer requires quick and intense form of chemotherapy as the cancer has the ability to re-grow to its prior size within only a few months.

As Ezra recovers from his surgery he will begin rehabilitation therapy, directly followed by chemotherapy treatments. This plan of attack is aimed at stopping the re-growth of the cancer and putting it into remission. Due to the rare form of tumor that this is, they only have one suggestion for treatment that is quite new. We are hopeful for its success but it is still a new procedure with many unknowns.

Watching Josh & Jenni look on helpless, as their little boy enters surgery, his motionless body laying on a stretcher with tubes and wires everywhere is enough to make anyone's heart sink. To see the endless stream of tears running down their faces as news turns from bad to worse can make us feel helpless. However there is still hope, and together we can help…

This is where I ask for friends, family and our community to step in. We together can help alleviate at least the financial stress Josh and Jenni have had since Ezra began this journey. With Josh's unexpected heart valve replacement surgery and recovery, as well as Ezra's stay in the hospital in February,  the Tasman's have spent over $20K in medical expenses over the last 3 months and will have to owe tens of thousands more during Ezra's treatment.


[TL:DR | Journey]

- Josh had heart surgery in Dec 18’

- Ezra was hospitalized with bronchitis in Feb 19’

- Ezra was taken into emergency surgery Mar 13, 2019 for a brain tumor and swelling of the brain

- March 19th, Ezra was diagnosed with a rare, aggressive form of brain cancer called Atypical Teratoid Rhabdoid Tumor (ATRT)

- In the last 3 months the Tasman’s have spent over $20,000 in medical bills and the journey isn't over yet

- We together can help alleviate at least the financial stress Josh and Jenni have had since Ezra began this journey


Conclusion

We don’t know how long this journey is going to be, we can only hope for a speedy, and successful treatment. The team at DeVos Children’s Hospital have been careful to only share news that are supported by facts, and continue to remind us all it will be a journey to be taken one step at a time.

Any amount that you can afford to give will be going to help care for a generous family that could really use the support.

The love, support, gifts and the encouraging messages these two have received have been crucial. Trust me when I say, they have needed every ounce of care so many of you have put forward.  So on behalf of the Tasman's, thank you so very much.


- Austin McKee
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We are still waiting for Ezra’s blood counts to come back up but he has been a mostly happy boy and seems to be handling this round better than the last one. #hospitallife #hopefullyhomesoon @ Helen DeVos Children's Hospital
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Today, Ezra starts his fifth round of chemotherapy which means more drugs, more nausea, and more sleepless nights.

This round being his fifth of six, we’re starting to see the light at the end of the tunnel, but the beginning of these rounds are always the hardest.

Before experiencing cancer in this way, I didn’t know much about it. I knew you needed chemotherapy drugs, possibly radiation, and your hair would fall out, but that was the extent of my knowledge.

I was naive.

Frankly, most people probably are, because why wouldn’t they be? In school, we learn cancer is bad, drugs help, and life goes on. Simple as that.

Unfortunately, it’s not that cut and dry.

Ezra’s last three rounds of chemo, known as: High Dose Chemotherapy With Stem Cell Rescue, only have two chemo drugs given to him over the course of two days. That’s less drugs than his previous three rounds, but they’re much more intense.

When these drugs start (one of them in particular), he also starts a regiment of baths.

Now these aren’t fun, play with your toys, baths. These are the clean all the hazardous oils off your skin so you don’t get burned baths. Ezra hates them, the nurses hate them, and mom & dad hate them.

They’re a nightmare.

Every four hours during the day and every six hours at night for the first 96 hours, Ezra has to get woken up if he’s sleeping, stripped naked, and dumped into a bath. Then he’s meticulously cleaned from head to toe to ensure he doesn’t get burned from the chemo seeping through his pores.

It’s a four person job to hold him down so he doesn’t rip his tubes out and ensure he is fully cleaned.

An older child or an adult could obviously take their own shower/bath, but since he’s still a baby, it’s much more of a challenge.

Jenni handles the bulk of the load during these baths waking up with Ezra in the middle of the night, trying to keep him calm, and helping him get back to sleep after the fact, so prayers for her and Ezzie are greatly appreciated.

#FightForEzra #CancerWarrior #Cancer #PeekIntoOurNightmare
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It’s Ezra’s engraftment day today, which means his stem cells have established themselves in his little body and have begun making new cells. That also means his counts have risen rapidly and well hopefully be home tomorrow or Tuesday.

He’s off most of the meds he had from his fever (steroids, morphine, etc), so now we’re just waiting for him to tolerate his full feedings without throwing up.

This round was a bit challenging, but he also received a different treatment this time around, so hopefully they last two rounds will go much smoother. Either way, we’re excited to spend some time at home.

#FightForEzra #CancerWarrior #ATRTWarrior
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Ezra's fever is gone!

After a stressful couple of days, his fever has broke and he's feeling much more like himself. We didn't even have to go to the ICU thankfully. Unfortunately, he's still hooked up to everything, which is a huge hassle, but he'll hopefully have that all removed later today.

His counts are still down, but they should start rebounded very shortly. If all continues to go as planned, we'll be out of the hospital in the next week or so.

Thank you for the prayers and support!

#FightForEzra #TodayIsAGoodDay #CancerFighter
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$35,871 of $45,000 goal

Raised by 526 people in 5 months
Created March 20, 2019
Team Ezra
on behalf of Joshua Tasman
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