Connor's Crusade

$2,143raised of $5,000 goal
42%

Organizer: Sarah Requena Beneficiary: Connor Requena

Benefit for Connor Requena, 10 year old fighting ALL, a type of leukemia. Connor has been fighting ALL since 10/31/2011 when he was just eight years old. He will be done with treatment in January 2015

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Fundraiser Details

It all started on Oct 5, 2011, with a fever. Then a cough. Just when we thought he was getting better, the fever would come back. He was extremely weak, barely able to walk ten feet without stopping to rest. He had also been very itchy and scratched so much that he ended up with bruises (petechiae) on his legs and three infected spots where he scratched himself raw and the Dr. started him on antibiotics. Took him to the ER on Oct 21 when his fever spiked, and he got a shot in each leg of a stronger antibiotic. About ten minutes later, Connor was complaining his leg was wet. He couldn't stop bleeding where the shot was in his left leg. We were really hoping they would have admitted him for IV fluids and antibiotics, but didn't realize Bay Park doesn't admit kids under 16 years old. When he still wasn't better on Oct 25, we took him to see the Nurse Practitioner in our Dr's group since our usual Dr. was ill. She was going to send him for bloodwork, but then got a 2nd and 3rd opinion from 2 other Dr's in the office and they decided it was MRSA and just changed up his antibiotics again. Almost took him to the ER again on the 27th when his leg started looking even worse and fever spiked again, but called the on-call Dr. and was told to just have him seen in the office the next day. As soon as Dr. Kahle saw him on Friday Oct 28, he looked very concerned and sent us straight for bloodwork. It didn't take long before we got a call from the office telling us to take him straight to the PICU at theToledo Children's Hospital as a direct admit. His hemoglobin was 4!

Once we got up to PICU we met Dr. Jamie Dargart. She introduced herself as a hematology/oncology doctor. Did I hear that correctly? Oh, his hemoglobin is low, hence hematology. My heart started beating again. She took his history and did an exam. The nurse hooked up an IV which was extremely difficult with his dehydration, she had to dig around quite a bit. Once it was in blood started spraying everywhere. Then Dr. Jamie took Marcos and I down the hall to a little room, asked us more questions and then hit us with it. She thinks it's leukemia. And our hearts stopped. No, I told her. My dad, uncle and grandpa all were extremely anemic and it ended up being their appendixes. Theirs were hidden in their backs and it took exploratory surgery to find out that it was appendicitis causing the anemia. She didn't look too optimistic. We went back to be with Connor. After his new set of labs came back and he was typed and crossed he received 2 units of blood and a unit of platelets.

Connor was moved out of PICU today. He's looking and feeling a lot perkier after the transfusions. The nurse asked if he wanted to ride in a wheelchair or walk to HEMOC, I suggested he walk to get some exercise. It was a LONG WALK, but he made it! As we were walking we passed signs guiding us in the right direction... Pediatric Hematology/Oncology. It was all I could do to keep from falling to the ground and crying my eyes out. There was that dreaded word again, oncology. Ahh, that's why they said they were transferring him to HEMOC, it's their lingo for Hematology/Oncology. HEMOC does sound less intimidating too. Our room is private, new and comfortable. Looks like he'll get spoiled here, flat screen TV, toy room with wii, nourishment room available 24 hours for late night snacks, a private bathroom and a bed for me so I won't have to leave his side. He will be getting 2 more units of blood tonight and more tests over the next few days so we can get a definitive diagnosis.

A few test results came back today. Chest xray was clear, abdominal xray shows enlarged spleen and liver, blood counts are still low, but high enough to not need anymore transfusions for now. Still leaning towards leukemia, but he doesn't have enough white blood cells to diagnose. Will do a bone marrow biopsy and aspiration tomorrow to see if that gets us any closer.

Connor had a good day today, thanks to the all the blood he received! A HUGE thank you to everyone who has ever given blood or tried to give blood. And thank you to those who were able to come visit Connor today, it really lifted his and our spirits and kept our minds off of his illness. Among his visitors were friends, family and even Darth Vadar himself! Apparently one of the HEMOC docs is a huge star wars fan and arranged for a full cast to come visit all the kids today. That really made his day!

So we finally have a diagnosis. Connor has Acute Lymphoblastic Leukemia, or ALL, a form of cancer of the blood. While no parent wants to hear this, it is actually a relief to finally know what is wrong and start treatment for a cure. Also a relief that it's the more treatable type of leukemia. We've known from day one that they were leaning towards this, but didn't know which type he might have. It took longer to get a firm diagnosis because his low blood cell levels and low bone marrow fluid. Actually, his low white blood cell count is a good thing. If it had been elevated it would have meant it would be harder to treat. He will be getting a port put in tomorrow morning to receive medications and to draw blood. While he's sedated for the port insertion he will have a spinal tap to see if there are leukemia cells in his spinal fluid and chemo will also be given into the spinal fluid. He seems to be feeling pretty well and is in good spirits. He is mostly worried about pain associated with procedures and losing his hair. Treatment will be rough for 6-9 months, then will be maintenance for 3 years. Thank you everyone for your support and prayers, please continue to pray for remission.

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Updates

Updates

02/19/2014
by Sarah Requena
So it turns out Connor must have a small tear in his esophagus from throwing up so often. Never want to see that again though. SCARY. Dr did a head CT because neurological problems can present with frequent vomiting, but it was clear. He will have a chemo hold (no chemo) for a week because his immune system is very low, ANC is 561, then recheck labs next Wednesday. His bilirubin is only slightly elevated as are his liver enzymes. They did a bleed test to see how long he would bleed if he had a cut and his APTT is slightly elevated. Not sure what exactly that means, but will recheck next week also. Thank you for keeping Connor in your thoughts
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02/18/2014
by Sarah Requena
A day in the life of childhood cancer... Connor has been throwing up about every other day lately. Tonight he finished dinner, took 13.5 of his 16.5 Tuesday night pills, got up and said I feel sick. "No! You just took your pills!" Too late, he was in the bathroom throwing up. As I got up to get him a washcloth to wipe his mouth, he starts yelling that he threw up blood. When I got to the bathroom I saw a small amount of blood in the toilet. "Don't worry, you probably just irritated your throat." He starts to heave again and up comes a bunch of blood. Let me tell you, not a lot freaks me out, but THIS freaked me out. He's yelling for me to call the doctor; I'm trying to figure out if warrants 911 or just a call to the on-call doctor. I decide on the on-call. I tell them it's urgent and they are nice enough not to tell me they'll have the Dr. call me back, but just put me on hold while they get him on the line. After going over his symptoms with Dr. Strunk I am able to calm down a little. He thinks Connor may have a small tear and wants me to bring him into the office tomorrow... unless it happens again tonight, then we will need to go to the ER. I'm glad we didn't have to jump in the car and rush to the hospital tonight, but I'm also glad we will be going there tomorrow. I've been debating whether to call for him to be seen anyways. Two weeks ago when Connor had his spinal tap, Dr Dargart raised his nightly chemo again. This is the mercaptopurine which is the one that his liver doesn't like. Well, his urine has been tinted a little bit orange/red lately and his eyes seem to be getting a little yellow indicating his liver is getting mad again. Please say a little prayer for Connor tonight.
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02/18/2014
by Sarah Requena

Hospital Visit

Written Feb 7, 2014 11:00am by Marcos Requena

<img src="http://www.caringbridge.org/assets/ugc/26/31/12/52f510e1a589b4863f33042e.jpg" alt="" width="300" height="400">We ended up taking Connor to the ER Weds. night and they had a hard time accessing him again. I think this is the first time he has ever cried being accessed. They had to find a longer needle to be able to give him fluids.  As of yesterday Connor is feeling much better and is at home.  I haven't seen him yet this morning since I had to be into work early but I am assuming that everything is ok.  Now hoping he doesn't go through much more pain with the withdrawals from the chemo and steroids. 

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02/18/2014
by Sarah Requena

Written Feb 5, 2014 4:56pm by Sarah Requena

<img src="http://www.caringbridge.org/assets/ugc/6s/7/t/52f2b7aca689b44b650d0ee9.jpg" alt="" width="300" height="400">
I would like to start by apologizing for not updating Connor's CaringBridge more often. It's so easy to post updates to facebook and I often forget that not everyone has one.Anyways, Connor had his once every 12 week spinal tap and IV chemo yesterday and started his 5 days of steroids. Aside from his port not wanting to work for the pre-op nurse, the procedure went well. The anesthesiologist even let Connor push his own meds into his line to put him to sleep, That was his first time doing that. He has always liked to take part in his treatment doing what he is able to. One of his favorite things is to put his blood into the vials and gently shake them for the nurses. He also would rather take his needle out of his port himself, but this was a first being able to push his own meds. I think it gives him a little feeling of control over something he doesn't have much control over.

Here are a couple of Marcos and my facebook posts from the past few days... 

It's that time again....Connor goes for his next spinal tap w/ chemo, IV chemo, and steroid pulse this Tuesday. Four more of these procedures to go and less than a year of treatment left. So I am glad that all his little friends are here to play with him in his lego room today. I think they are having their own super bowl party. lol Big thank you again to Rayz Cafe for the poker run that they did last year for them to build him this room. I can't remember the last time that he hasn't been down there.  Tomorrow he goes for blood work to check his counts, really hoping that his liver enzymes have leveled out by now. Four more of these treatments Connor Jacob four more!!!

Well everything went well today until we went to get Connors prescriptions. His back started hurting a lot so we had to get him a wheel chair to get to the truck. Even in all that pain Connor was hungry and insisted that we stopped somewhere to eat. We stopped at Denny's got Connor seated and ordered our food and all of a sudden all over the table Connor let's it all out. Poor waitress came to the rescue and cleaned it all up. We get our order canceled and go to the truck and it won't start!!!! By this time Sarah and I had had enough and start at each other lol Got the truck started and enjoyed a quiet ride home.  What a day.....hoping Connors pain doesn't get any worse so he can go eat Caldo, his favorite, at Lito and Lita's house later. Thanks to all for the thoughts and prayers today!

I don't know if it's just me, but I think with each treatment this gets harder and harder for Connor. He was in so much back pain yesterday. Today he has a terrible headache and just feels crappy. He ate a big bowl of chicken noodle soup, but it all came back up. He held out as long as he could for pain meds because he already takes so many pills he doesn't want to take any more. It's 3:30 in the afternoon and I haven't been able to get him to take his morning pills. He's had zofran twice for nausea and codeine twice so to him that's enough pills. He balled his eyes out when I tried to get him to take his steroids. He is just so sick of this! So am I! I don't tell you this to make you feel sorry for him, or us, but to bring awareness (and to vent). He has gone through SO MUCH crap and he has the EASY type of the EASY cancer!!!! I can not even imagine what the poor kids who are not as 'lucky' as Connor are going through. Makes me SICK!

On a brighter note, here's what Marcos had to say about Steeven today... 

"Steevie has the BIGGEST heart ever!!! Last night when Connor wasn't feeling well he went and gave him a big kiss and told him that he loved him soooo much and then gave him his leap pad to play with. And right now Connor is feeling really bad so he went and took Connor his moms cell phone and said they could play games together. After that he told grandma to call the dr to make Connor Jacob feel better and then turned to Connor and told him that the dr would make him feel better. I love this little kid!"

Me again... So, after a call to the Dr to get more codeine okayed, Connor's headache is under control. He's on his third nap of the day. After the second one he vomited again and has not kept any liquid down all day. I called the Dr again. If he keeps vomiting we will have to make a trip to the ER for IV fluids. She doesn't want us driving all the way to TCH in this weather so we would just go to Bay Park if necessary. They will more than likely not be able to access his port and would need to start an IV. Connor was NOT happy when he heard that and is trying his best to keep something down. As I'm typing he woke up and feels like he's going to be sick again. :(  Hoping we can hold out til tomorrow to go to TCH HEM/ONC clinic for fluids, but it's not looking promising.

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