Braden's Battle (Kicking Cancers Butt)
Organized by: Jennifer Sinclair
September 23, 2016
This Fundraiser is for Braden and his Battle against Cancer. My son Braden was diagnosed with B-Cell Acute Lymphoblastic Leukemia on March 28th 2016 in Costa Rica.(Shortly after we moved there full time.) It has literally turned our lives upside down!!
Please take a few moments to read about his Battle so far!! Thank You!!
A portion of the donations will also be donated to the Organizations and Hospitals that have helped Braden & Our Family since diagnosis.
A Portion Of The Donations Will go to Hospital dé Niños Hemotology/Oncology Department in San Jose, Costa Rica
A Portion Of The Donations Will go to ALCCI in Costa Rica (it is where we were able to sleep and take showers and eat etc. while we were in San Jose...it is like the Ronald McDonald house here in the states.)
A Portion Of The Donations Will go to Children's Hospital of Pittsburgh of UPMC Hemotology/Oncology
My family and I had finally decided to sell everything and move to Costa Rica to live a Pura Vida life. We had been going back and forth to Costa Rica for the past 10 years after falling in love with the country on our first trip. Living in South Florida saving as much as possible to go down and stay as long as possible before having to return to the US to start saving again.
We attempted to move to Costa Rica full time in July of 2012, our daughter was then 6 and were prepared for the struggle of trying to make a living there now that our daughter was older but we were not prepared to find out 2 months after moving there that I was pregnant. (About 6 months after being told I couldn't have any more children after trying for 6 years)
The news of our pregnancy was like a sign that we were meant to be in Costa Rica because having a child there would allow us to gain permanent residency which would then make it easier for us to live there without having to do a visa run every 3 months. It would also make it easier for us to work and make a living there legally.
So as it goes 9 months later in May of 2013 our son was born abroad in Costa Rica. Unfortunately he had some medical issues that needed attention in the first year. Since he was just an infant we decided it would be better for us to return to our home country when he was 4 months old for his medical needs especially since he was going to need 2 surgeries.
He had his first surgery in May 2014 at the age of 1 and then had his second and final surgery in May 2015 at the age of 2. We decided after his last surgery and perfect follow ups that we were ready once again to move to Costa Rica full time and work on our residency process which can be costly & timely.
We saved up as much as possible and sold everything to move back down to Costa Rica in September 2015. My sister had also decided she wanted to move down with my nephew who was also eligible for citizenship due to his father being Costa Rican and we could help each other since my husband was still going to have to fly back and forth to Florida for work until we could get our residency started and get on our feet.
We all flew down together in Sept. to get settled and in Oct. my husband flew back to Florida to work. Things were going great my sister and I had found a job under the table and made some great new contacts for leads to other work. (You have to multi-task to be able to make a living down there) I was now working, homeschooling my 9y/o daughter, raising my 2 y/o son, helping my sister with her 2 y/o son and trying to also do some marketing work on the computer at night. (Costa Rica is not as cheap as it once was especially when you have children)
We had gotten to the point where my husband could ship all of his tools down and come down full time. He flew down in February of 2016 after shipping his tools and the rest of our personal belongings down.
Towards the middle of March we had all came down with some sort of virus that had been going around. We all got better except our son and was complaining of his knee hurting and blaming it on my nephew claiming different stories of how my nephew had hurt his knee playing how little boys do. This complaining and a slight limp went on for about a week. It very rapidly got worse (over just a few days) and he then began complaining that his other knee hurt as well. A day or 2 after he started complaining about both knees hurting he had went from a slight limp to just shuffling and not even wanting to walk at all. I then had to take him to the hospital. He had also been having on and off fevers in the few days prior to taking him to hospital. It would go away in the day and come back at night.
On Easter Sunday (3/27/2016) the day we took him to the hosp. he had a 104.0 fever along with not wanting to walk at all. (Being that he was my second baby I knew if he had the fever is for 3 consecutive days it was time to go) I had a friend go with me to the hospital to help translate the medical terms etc. When we arrived at the hospital they took him in and drew blood immediately. The blood results came back that he was severely anemic (very low iron) and his hemoglobin levels were also extremely low (his was 4.5 and normal hemoglobin level is about 12) They decided that they had to keep him over night and give him 2 blood transfusions and then have him transferred the next day by ambulance to San Jose Children's Hospital (about 5 hours from where we lived)
A nurse and pediatric doctor traveled with my son and I in the ambulance as my husband followed behind. When we arrived there we were taken to do more blood work and x-rays etc. My husband and I had to take turns being with our son because the hospital only allows 1 parent to be with the child at a time. Since we are Americans we pleaded with security to allow us to both be with our son until we could get the results of what was wrong.
When we were brought up to the hematology department we knew the bad news was coming, our hearts dropped and the tears started flowing before we even met with the oncologist. The doctor called us in, he did not speak good English but CANCER is the same in every language. The translator began explaining that they had to do more tests but the doctor was POSITIVE he had some form of leukemia cancer. We just broke down in that moment. After a moment we had to pull it together and discuss the next steps to come. The translator explained that they were going to give him another blood transfusion and a platelet transfusion to get him healthy enough to be put under with anesthetic so they could do a bone marrow biopsy to see how bad the cancer was in the marrow and a lumbar puncture to see if the cancer cells had spread to the spinal fluid.
At this point in time he had been admitted at which point we were both not allowed to stay with him at the same time. We had to take turns being inside the hospital. At first they said we had to change out downstairs at the front gate but we explained to them we could not leave him alone to do so and talked them into letting us exchange places at his bedside and the other parent would exit immediately.
This was torture for my husband as he let me stay with our son the majority of the time while the hospital set him up across the street at the ALCCI house for a place to sleep and eat. (it's like like the Ronald McDonald house in the US) This made communication about what plans to make difficult.
The very few times we were able to be in the hospital together we discussed what would be best for our son as far as treatment and weather or not we would be able to get him back to the US.
Since our son was born in Costa Rica he could have received treatment there but the doctor advised against it due to the fact that his bone marrow was at 95% blasts (95% bad cancer cells) and if he needed a bone marrow transplant that is something that they are unable to preform in Costa Rica due to lack of medical equipment, funding etc. She also advised against it because she felt since he was a US citizen he would get better more comfortable accommodating care and another major issue the communication issues (my husband speaks no Spanish and I speak some Spanish but surely not medical Spanish that is a whole different ball game)
Everything was happening so fast I didn't even know which way was up. We had nothing to go back to in the US. We had sold everything we didn't have a place to back to or a vehicle or jobs or anything. We had planned on living in Costa Rica for the long term so we had absolutely nothing to fall back on. We couldn't go back to Florida we had nothing to go back to. My mom lives in Florida but she works all the time and lives in with her client and her house was already rented out and not to mention the Children's Hospital in Miami is ranked #25 in the nation.
We discussed what we were going to do and the best and only option was to take him to Pittsburgh where my husband's family was and the Children's Hospital of Pittsburgh is ranked #6 in the nation plus we were gonna need a lot family support especially for our daughter, who at this point has no idea what is going on with her brother since she flew to Florida with a family friend the day after Braden went into the hospital to stay with my mom for 2 weeks so she could do her Florida state testing for school.
We were in an extremely difficult situation we did not have hardly any money saved, the work we were doing in Costa Rica was just enough to live on and surely not enough to buy 3 emergency plane tickets to get our boy to the US to start treatment immediately.
We didn't even have anything to sell (nor time to sell anything) because we still hadn't received our shipment of my husband's tools etc. Because it was and STILL IS held up by Costa Rica Customs.
We were literally stuck between a rock and a hard spot with a 2 y/o little boy who had just been diagnosed with cancer, he was scared, he was going through so much getting poked with IV needles once a day sometimes twice a day, he was in a strange place, he couldn't be with both his parents at the same time, he was in a big room surrounded by 9 other cancer patients of various diagnosis, ages & stages with only glass partition walls separating them.
We contacted my husband's aunt in Colorado who is a part time travel agent and asked her if she would possibly be able to purchase our plane tickets to get Braden the states because we had very little time to get him there, he needed to start treatment immediately he was very ill and the cancer was spreading very vast (hence the term ACUTE) She said she would get the tickets and got on the ball right away but that was only part of the battle.
We still needed to get medical clearance to take him on the plane, we had to contact my husbands family outside Pittsburgh to see if they would have a place for us to stay, we had to contact the Children's hospital in Pittsburgh to see if they would accept his transfer, we had to get all of his medical documents translated to English so they would know the situation and diagnosis etc.
After getting through that part of things, getting him accepted in Pittsburgh and having the plane tickets on reserve until we knew exactly when we could fly... we were still 5 hours from our house and had to figure out how we were going to be able to get there to get our dog and to pack as much as possible into a couple suitcases and get on a plane.
We talked with the doctor about transferring him back to the hospital near our house, where we initially took him to the ER, so he could stay 1 night there and be monitored and give my husband and myself a chance to take turns going to the house to pack and get things in order etc.
The doctor was fine with this idea and contacted the hospital in Liberia (30 mins from our house) and asked them if Braden could be transferred back to them and be monitored for the 1 night before our flight out the following morning. They said yes and that was a bit of a relief, they said they would transfer him by ambulance the next morning at 7am.
Well the next morning moments before we were supposed to be getting in the ambulance to go back to Liberia hospital, the Liberia hospital called back and said they now did not want to accept the transfer because they did not want to be responsible for transporting him to the airport and leaving him there.
Another curve ball! We had to push our flights another day. Later that day the oncologist contacted the Liberia hospital again and told them that she would sign whatever paperwork was needed and she would accept the responsibility/liability of allowing Braden to go to the airport. They said they would accept that and again set up to transfer him the next morning at 7am.
But yet again the next morning moments before we are supposed to be getting in the ambulance the Liberia hospital director called and denied the request again. So again the oncologist contacted the hospital director and asked again and they said no.
Now at this point our airline tickets are already confirmed for us to fly out (April 2nd the very next morning!) We then spoke to the oncologist again and told her how we really need to go home and pack a few things and get our dog etc. etc. She said she could not understand why they would not accept him even after she said she would accept responsibility. So she said that since our flights were all scheduled to fly out of Liberia early the next morning, she would give us all of his medication he needed and would allow us to take him home with us so we could pack our stuff and she would keep in contact with us over the phone and through what's app and if something happened or if he got a fever or anything we could take him to Liberia hospital and they would have to take him in through ER.
Obviously we agreed to keep in touch and give him his meds and get him on the plane and go straight to the hospital from the airport in Pittsburgh. By the time we got discharged and made the 5 hour trip home we got to our house at like 7pm. We stayed up all night packing what we could and saying goodbyes it was very surreal and sad.
The next morning we had to be at the airport very early. When we got to Pittsburgh my mother in-law and my sister in-law met us at the airport with 2 cars... 1 for the dog and luggage and the other to take us straight to the hospital. When we got to the hospital they were expecting us. We had to go through the ER and meet with the oncologist and do the majority of the diagnosis process again because he came from out of the country they had to do all the procedures again except for the lumbar puncture since they had already done the first 1 in Costa Rica and they had already injected the chemo in his spine just days before.
The day after arriving to Pittsburgh children's hosp. They took him in for surgery early in the morning to install a medi port in the right side of his chest just under his collar bone which has a catheter that goes in a main artery and stops just before his heart.
This port makes it easier and more convenient for nurse and patient instead of having to give an IV in a vein each time. When Braden got to Pittsburgh they had such a hard time finding a good vein because the nurses in Costa Rica had blown them all.
We stayed at the hospital for the next 10 days starting treatment and getting blood transfusions and platelet transfusions etc.
Meanwhile our daughter was still in Florida still testing and she had no idea that her brother has cancer.. she had no idea that we all flew to Pittsburgh... she had no idea that instead of going back to Costa Rica when she was done testing she would actually be flying to Pittsburgh.
Some people might think it was wrong to not tell her anything but I look at like she is taking important tests for school and I didn't want to distract her with very negative news right in the middle of it all. Plus it is not really something that you tell a 9 y/o over the phone. When she was done testing we told her that instead of flying to Costa Rica we were gonna have her fly up to Pittsburgh and she was actually excited and didn't really question why.. she was just excited that she was gonna see her grandma and family.
The day before she flew in Braden was discharged from the hospital so he was able to go with us to pick her up from the airport. After we picked her up we went and got something to eat and sat her down and explained it all to her. We told her everything that happened up to then. (We are very open and honest about reality with both of our children.) I don't think she understood it all at first but she is learning and understanding more and more as we all are. The most important part to me was that I didn't want her to treat him different or not want to be around him because he is sick. Which she is not.. she treats him the same as always so I am happy about that.
It has been a rough road and there is still a lot of bumpy road ahead.
I will post more updates soon about how things have gone since arriving in Pittsburgh and starting treatment.
Thanks for taking the time out of your day to read about our story and Braden's Battle!
Donations will be used to help with the cost of transportation, medical expenses not covered by insurance, helping our family to start over and get back on our feet, it will help with housing and utility costs, other expenses etc.
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