I know I have not updated this page in a while. Here is the latest:
We were discharge from the hospital Tuesday afternoon. We stayed at the Ronald McDonald house until Wednesday because we had an appointment with the neurosurgeon that day. The news is good and bad.
Bad news: The MRI scan with and without contrast showed significant increase in the left parietal temporal lesion mostly cystic with midline shift. Basically, it showed a lot of cystic tumor pushing on Uzias's brain causing it to shift.
The neurosurgeon said that there is nothing he could do surgically to help the situation. According to him, the cysts are created due to rapid death of cancer cells. And according to him it happened because the tumor did not have enough blood supply to support its grow. The neurosurgeon thinks it happened because the tumor is trying to grow very fast and the body cannot supply its demand. They just want to put him on hospice care.
Good news: The findings are consistent with the treatment we are doing in North Carolina. The treatment in North Carolina is looking to create and environment where the cancer cells cannot survive. Basically restricting the cancer cells blood supply. However, we have to look more into it by looking at prior MRI scans and other things. Our goal is for the MRI to show no active blood supply, meaning to show that all cancer cells are dead. The doctor in North Carolina is sending us to his colleague (another doctor) in Salt Lake City Utah. We will be heading out in the next couple of days, and will be there for 30 days.
Uzias says to me, "Mami don't worry, God is with us and he will protect us." In the hospital he was entertaining me by dancing and singing. That little kid, I love him. At the hospital the doctors never give any hope. It's amazing how they can instill a crippling fear in you. A fear that makes you want to dig a hole and bury your head in it. Lucky for me, God is greater than that fear. Before we began this treatment, we prayed to God for guidance and wisdom to make the right choice, I believe God answered our prayers and continues to answer our prayers. God gives me the hope I need to continue walking through the valley of the shadow of death. I will keep walking though, I will fear no evil for You are with me; Your rod and Your staff, they comfort me. Here is a verse from one of my favorite Psalms 34:3 - O magnify the Lord with me, and let us exalt his name together.
As soon as I figure out how to post pictures, I will post some picture.
Here is an article written by Milton Carrero from The Morning Call
Thanks Milton and Mr. Blockus for informing Milton about Uzias's journey.
Upadate on fundraising:
We feel truly blessed and grateful that for your gifts. They give us hope and encourage us to keep going when things get a bit difficult. Thank you to all!
This week a family member brought us a gift that helped us pay for half of the April 24th visit.
My good friend sent us a nice check that help us complete the April 10th visit .
My family members have been helping with selling wrist bands. We have made about $1500 from that already it has help a lot.
April 13, 2013 was the 5K, we had a great tur out. I was very happy to see a lot of people I know there. It was nice that they came to show their support. I don't know the outcome of the 5K, it is being processed by Seven Generation Charter School. As soon as I hear something from them, I will post it up here.
Before the month of March ended we received about $3000 from the follower of Amy's blog, http://www.stitcherydickorydock.com/
. I met Amy at the airport on my way home from North Carolina. We shared our story and connected in many ways. We were blessed when she wrote about Uzias's journey on her blog and her followers embrased us and blessed us with their donations. It helped pay for Uzias's follow up visit of April 10th.
Uzias and dad came back from North Carolina. Uzias did great the week and half he was here. No headaches, no stuttering, high energy and strength seem to have improved. He went back to North Carolina for treatment April 10th. Everything was fine, but at the end of the second day there, Thursday April 11, he had a seizure. He was taken to the ER for a cat scan. There was no sign of bleeding or anything unusual. Except for a big mass. The same day he went back to the clinic. Dr. Buttar got the results from the ER but according to him everything was fine. The next day during the consultation with the Doctor, he said everything is going according to plan. The blood labs taken revealed that the cancer is not progressing and the Doctor thinks the tumor is breaking down. Good news. Uzias was schedule to come back Friday but the flight was canceled and he was not able to make it until Saturday afternoon. I noticed when he came back that he did not seem as well as he was when he left. He was stuttering a bit and complaining of a headache.
Rough past two weeks. Uzias came back not feeling well as mention before and it continued. Starting Friday April 19, he started getting up in the middle of the night complaining of headaches. He was having trouble falling asleep and staying asleep. To make it all better, my middle child was sick as well, he was having high fevers, congested and coughing. Monday, April 22, I called the Doctor about Uzias and he told me to bring Uzias in, yes, all the way to North Carolina. We manage to schedule a flight using a travel voucher my sister had given me. And off to North Carolina they went. This time the treatment went a lot better. No incidents. Thank God! Uzias was tired through out the treatment but when he got here yesterday he seemed to be doing very well. He is doing good so far. We had the consultation with the Doctor on Thursday and he said labs are still looking good. Uzias should not have to go back to North Carolina for six weeks. We have been trying to just hang in there, hoping for the best. I have been exhausted. Even though I have help from my sister and mother, it is hard to work and take care of two kids all by myself. My middle chid (Isaias), was a little better, but my little one (Miqueas) decided it was his turn to get sick. I had to drink a lot of coffee at work to stay awake. Nevertheless, we made it through the week. That's why I have not been able to give any updates. I tried a couple times but found myself drooling in front of the computer.
April 14, 2013
I was genuinely happy to see everyone at the 5K yesterday. Thank you for showing your support.
Huge THANK YOU to the SevenGen family, thank you to Mrs. Moyer & Ms. Pulizzano, for organizing the event, and everyone helping out. Thank you to, Jandl Elementary, PennState, Iglesia Metodista Libre Central, to my friends and family there and to everyone there. Thank you for showing you care. Words are great, but actions always speak louder. THANK YOU.....! I will try to post some pictures soon.
April 6, 2013
Uzias says to me last night, "Mami, I don't know how you are going to feel about what I am about to say?" What? He says, "you know God is the one healing me, right? I have been feeling better since we have known God". I said to him, "yes I know and I am glad you know." Wow! His faith is immovable! God is good, all..... the time.
April 3, 2013
Well Uzias and dad came back from NC last Friday. We have been adjusting to the changes of me working and my wonderful mother-in-law staying with Uzias all day. Uzias seemed sad at first but I think he is coming along. He is having a good time testing gramma's limits, lol, poor gramma. Health wise, he is looking good, fighting tiredness at all cost, and no complains of headaches, and no stuttering. Thank you God! Uzias and dad will be going back to NC next week, Wednesday thru Friday for additional treatment. Thank you to Children's Flight of Hope for flying us to NC & back for the 3rd time. Working feels good but I miss Uzias as well, I call him everyday at lunch time. Thank you all for your prayers and support, God bless.
March 29, 2013
Thank you God! Praise God! It has been an awesome week. Uzias and dad had a great time in North Carolina and it's time for them to come back. They will be here today at 4pm. Uzias has been counting the days. GOOD NEWS: Uzia's headaches have improved. They are becoming less frequent and less painful. The doctor was very happy with the lab results. He said we are moving in the right direction. He said that the headaches will continue to get better. We have to come back every two weeks for 3 days, for treatment and lab work. Uzias will keep his picc line in until the treatment is complete. Overall, Uzias has been very happy and energetic, we have skyped a few times, and he looks great. He had some occasional headaches and vomiting, other than that he has been doing great, no stuttering or hesitation when speaking, which is a great sign. I feel very encouraged this week and my spirit has been renewed by God's wonderful grace and mercy. Thank you for your prayers and support. God bless you all.
March 25, 2013
I have a lot to share but I have not found the time to sit down and put things in writing. Trying to settle and get back to the norm after 3 weeks away. I must say, GOD IS GOOD!
Uzias is feeling better, headaches are getting better. He was very sick during the weekend but I spoke to him today and he says he feels good. He is counting the days to get back home.
I am humbled, blessed, motivated and filled with hope by the support and donations received from the follower of,http://www.stitcherydickorydock.com/, Amy, who I met yesterday on the plane from North Carolina to Detroit (connecting flight). Amy and I had the opportunity to share God, yes, we talked about our spiritual growth and our understanding of what is happening in our lives right now. Amy shared Uzias's story on her blog and many of her followers have blessed us with their support, prayers, donations. I am speechless and humbled by your action, humongous thanks to Amy and to the,http://www.stitcherydickorydock.com/, followers. May God bless you and may he multiply in great everything you have given to me.
March 24, 2013
Thursday: We went to the clinic a little late, Uzias still had the headache but it did go away when he did the hyperbaric chamber. After that, he had an alright day. A little tired, and I think the headache came back but a little bit more tolerable for him. We had a consultation with the doctor, and he was not sure what was causing the symptoms but he decided to add a different protocol to the one we are already doing.
Friday: We went to the clinic early, did the hyperbaric chamber, ozone and the new protocol, called BX. After that we came home. Uzias was doing good, but later in the afternoon he was fighting the headaches again, he laid down for a while and then got up and was feeling okay. Thanks to a wonderful supporter, I started doing something called "wet sock treatment" to help alleviate the pain a bit. Thanks Charity!
Saturday: Uzias got up feeling good, he played with his new Lego toy, which a friend of ours was kind enough to send him, along with some other goodies, thanks Alex! He laid down at around 3pm with a headache but just for a little bit. I did the "wet sock treatment again and he had a good night sleep.
Oh!, We picked up dad yesterday at the airport. Uzias was very excited. A bitter sweet experience since I am leaving today. I start work on Monday, I had already delayed the start date a month, need to go before they give me the boot. I am on my way to the airport. My husband will stay here with Uzias until the end of the week. Yes, one more week and we will all be home (first part of treatment done). Uzias is looking forward to that. I am excited to go home and see my other kids, but I don't want to leave my baby (Uzias), I know he is going to miss me. I understand him better than anyone and I am already having a hard time. One good thing, my middle child turns 4 yo today and I will be there to celebrate with him. Thanks again for your support and prayers. Have a nice Sunday everyone.
March 21, 2013
I have good news and bad news:
Uzias's headaches are getting worst. He is waking up with a headache during the night and in the morning. The headaches are a sign of swelling of the brain and possible tumor growth. Tuesday we went into the clinic for an hour to do hyperberic chamber. After the clinic we spent sometime in the play ground. Yesterday we were a little late again because Uzias was not feeling well. He did well throughout the treatment but got up this morning at around 3:45
complaining of a headache.
The heachaches can also be a sign of swelling of the brain caused by the treatment. If this is the case then it's good because the treatment is being effective. I have to thank God for Uzias. He is a strong little man and his spirit is not easily broken. He has an immovable faith. He was asking me yesterday when is his next MRI because he want to know how much the tumor has shrunk. I see this as God's grace. I am choosing to concentrate on God's grace, God is in control. He is good, all the time. Keep praying, and don't forget to thank him for answering our prayers.
March 18, 2013
We are back at the clinic today. We were schedule for 11am but did not get in until 12:40pm. Uzias has not been feeling well. He has been experiencing dizziness followed by headaches. It goes away after about an hour of laying down and then he emerges back as if nothing happened. The dizziness is something new but headaches are very common given the situation. I am a little worried, but holding on to Jesus. Besides feeling dizzy yesterday, we had a nice weekend. Relaxed Friday, nice quiet Saturday. We took a nice nature walk yesterday in the morning and that was it. Uzias started feeling sick later in the day
yesterday at around 6pm. He woke up with a headache today and said he was dizzy after taking a shower followed by a headache. Thanks for your prayers and support. Keep praying.
Here is the unbreakable spirit I am taking about. Let me tell you, Uzias does not let silly headaches keep him down. After the headaches have passed, he goes right back to singing, playing, jumping around, laughing and telling me how much he loves me and how much he misses his dad and brothers. He always has a smile on his face. God is good!
Posted on 03/15/2013 by Organizer
Update on fundraisers completed and fundraisers taking place in the near future:
Thank you! Thank you! Thank you!
Seven Generation Charter School, planned another even to help us raised money. This time is a 5K run. The 5K will take place on April 13 @ 8:30am. A fun run will take place @ 8:00am. Here is the flyer for the run: 5KFlyerFinal.pdf, hope to see everyone there. Please feel free to spread the word and circulate the flyer to any runners or running clubs or anyone else who might be interested.
Another wonderful fundraiser taking place is Tshirts being sold for $20 to benefit Uzias. Austin's Auto Service and some great friends ours covered the cost of the tshirts. Please contact me if you are interested in buying or selling some tshirts to help us out. Thank you Austin's Auto Service and to our the great friends.
My younger sister took the initiative of ordering $200 wrist bads to sell for $5. She sold them all in one weekend and raised $380. Thank you sis. She will be ordering more. If anyone is interested in selling them or buying one or a few, let me know.
Another event took place February 28th. An evening of Native American Story Telling with Mr. Aptaker. Thank you Seven Generations Charter School. Amount raised was $241. It was more than story telling it was an hour of entertainment and limitless imagination. Thank you Mr. Aptaker! Thanks to everyone for the support! I really appreciate your act of kindness.
Fred J. Jaindl Elementary School raised $200 by having a staff dress down day. Thank you soooo, much Jaindl Elementary. Awesome way to show your support and care for Uzias.
The yoga class Saturday Feb. 16th raised $306.00 for Uzias, a total of $900 with the two yoga classes. I want to thank everyone who made donations, it's amazing, thank you for your kindness and generosity. A special thanks to Prabha Sinha and her husband, and West End Yoga for event and taking the initiative to help us, strangers. THANK YOU! My family and I are very grateful.
Thank you to the Seven Generations family for an awesome Yoga Class fundraiser hel Saturday February 2. Amount raised was a total of $560.00. It was a great turn out. I heartfelt thank you! I am very touched by your generosity.
Thank you to everyone for your support by liking and sharing this page with your friends. Special thanks to those I reached out to and ask to shared. Thank you! God bless you all for the prayers, support, gifts and kind words of encouragement. It is all very helpful and appreciated.
Updates during treatment:
Well, we had a good week and we are happy is over. Uzias tough day was Wednesday when he got the shot. It was rough, he he inconsolable, he cried and cried. After the shot he felt tire and a little sick, was dizzy but he took a little nap and then we continue with the rest of the treatment. We were there from 11am to 5:30pm, long day. That day he was very tired, so he came back to the apartment and just watched TV and went to bed early. Thursday was a better day. He was still tired and hurting a little but he felt better. Today, he is just happy we get the weekend off. We went in this morning for an hour and that was it. He is relaxing and chilling. It's a little cold for us, so, I don't think we will be doing much this weekend. Maybe we will go out for a walk or something. That's about it. Thanks for your prayers and support. God bless you all. Wishing you all a very nice weekend.
We had a long weekend with beautiful weather. Unfortunately, Mr. Uzias did not want to come out of the hotel. We went out Saturday for a couple of hours to a nice park near the water, we had a great time. Sunday, we went out to eat and that was it, Uzias was holding me hostage the entire day. He was feeling okay, I guess, maybe just a little tired. Yesterday we went to the clinic for treatment, it went well. He got sick after his last IV. I was a little scared, he was dizzy and was crying saying his head was hurting. The nurse said it was probably because of the last IV. He slept for a while and was feeling better after but not enough to do the last thing on the schedule (the oxygen chamber). Oh, and we moved into the apartment. It feels a lot better here, we like it. I have not been grocery shopping yet but I will tomorrow and hopefully have a home cooked meal, we need one. Today, we had most of the day off. We went to the clinic to do the oxygen chamber only, he liked it, he said he felt like he came out with new pair of lungs. Tomorrow, we have a long day of IV's, AARSOTA again, and oxygen chamber. He is expected to feel very sick tomorrow after the AARSOTA. That's all! I will keep you all posted. Thank you for the prayers and support.
In the hospital for a 9:30 am appointment for a picc line. After getting the AARSOTA yesterday Uzias was not feeling well. He was a little sore from the vaccine and had trouble walking and sitting down. He did not have a good night sleep last night and he woke up crying about a headache. He did not want to get up in the morning. I helped him into the shower and he felt a little better after. We got the picc line done and over with, thank God! He was scared and I am sure this is why he had trouble sleeping. He did great through the procedure, he is a tough little man. After the picc line today we came back to the hotel ate lunch and then went to the clinic about 1:30pm for
Ozone, mineral trace IV and another IV to help stimulate the lymphatic system. We saw the doctor and he added somethings to the protocol for next week. We are off tomorrow, yayyy! Too bad we can't go home. We miss the family. My 4 year old called last night and Uzias was tearing as soon as he heard him say Imiss you. We are going to try to find a park to go for a walk this weekend, weather is going to be in the 60's. Annnd that's all folks! Thank you all for your prayers and support.
We were in the clinic today from 9:30am - 1:30pm. Uzias had ozone, vitamin C+ IV and AARSOTA - the technology and know-how to extract, from urine, the proteins that are produced by the cancer cells and develop a vaccine "Autologous Antigen Receptor Specific Oncogenic Target Acquisition" (AARSOTA). This vaccine is administered intramuscularly at specific intervals to promote an antigen-antibody response and provide immunological information to the antibodies. The immunological response enhances specific cancer fighting ability by the body's defense system.
This is our second day here. We have been at the clinic since 9am. They did labs, ozone, vitamin, mineral and other IV's. This is in addition to other supplements he is currently taking. All done with the last IV. All in all a good day. Found a great price for a 1 bedroom apartment furnished with cable and Internet all included for $62 a day, available on the 11th. That's better than the hotel we currently have. And that's all folks!
Update on moving forward with treatment:
We flew down to North Carolina on February 13th for the first 3 days of the initial treatment consultation. Those 3 days Uzias had labs done:
- They sent hair and saliva sample,
- A 12 hour urine sample
- We were given instruction for another urine sample (to fill a gallon) to get done once we got back home and ship to the lab overnight
- Uzias got serveral IV's to test for tolerance
We had a consultation with the Doctor who was very confident about the chances of the treatment being successful. He told me that the goal of the treatment is to have Uzias live a happy and long cancer free life. He reiterated how important and perfect it is that Uzias has not had any radiation treatment. He says best results are seen in those patients who have not had any chemo or radiation, specially radiation. After the 3 days, we headed back home. Children's Flight of Hope sponsored our airfares to and from North Carolina on a very short notice. Thank God for that! Thanks to Children's Flight of Hope.
We returned back home (February 15th) and sent out the stool and urine sample as directed. We were sent home with a few supplements to use while we waited on the urine and stool sample results to come back before going back to North Carolina. Once the results for the urine and stool sample came back they called us to schedule the appointment to go back to North Carolina. We are in North Carolina Now. We flew in, March 4th and started treatment on March 5th. Everything is going well so far. Our airfares were once again sponsored by Children's Flight of Hope and they will be flying us back as well. Thank you for the prayers and support. May God bless you all and multiply everything you have given to us.
Since the surgery Uzias is doing well. Thank God! We have been waiting and gathering information about options treatment for Uzias. We have been looking into Proton Radiotherapy, Burzynski and Center for Advanced Medicine and Clinical Research. Here is what we have found and decided so far.
The doctors from Hershey sent medical records to CHOP (UPenn proton center) to review to see if Uzias qualified for Proton Radiotherapy. They finished reviewing everything February 6, 2013. CHOP pathologists feel that Uzias tumor is currently most representative of a high-grade (IV on a scale of I-IV) tumor called glioblastome multiforme (GBM). Hershey pathologists called the most recent pathology a "recurrent glioneuronal neoplasm with anaplastic features", the same as before. In able for Uzias to qualify for Proton they needed another MRI to make sure the tumor was stable since surgery. Unfortunately the MRI showed that there has been an interval increase in residual tumor size since his post-operative MRI in January. UPenn (Proton Center, CHOP) has decided that Uzias is not a candidate for protons because they feel that the likelihood of long-term control is low and that protons would not offer any advantage. UPenn recommended IMRT (intensity-modulated radiation therapy. Therefore, we have decided to proceed with other options.
Currently not accepting any patients under 18 years of age because they currently do not have a pediatric doctor on board and the FDA will not allow them to continue taking patient with a pediatric doctor. This may change but as of 2/11/13 it was still closed.
Center for Advanced Medicine and Clinical Research:
Had a consultation with Dr. Buttar on 1/9/13. Dr. Buttar said that Uzias is a great candidate for his treatment because he has not had radiation. We would need to go to North Carolina for 3 days initialy, then come back home for 2-3 weeks and go back to North Carolina for 4 weeks. The entire treatment cost is $50,000 and $10,000 any additional week of treatment needed.
We did not make a desicion then (1/9/13) because we do not have the money. We have only raised about $2000 so far. Which of course is great and very much appriated, but unfortunaly not enough. We decided to pray and wait. We feel, at this point that the Center for Advance Medicine is our only option and even though we don't have the money we will be applying for loans and borrowing money (from anywhere, credit cards, people, whatever it takes) to get Uzias there no later then 1/18/13.
While we were waiting to make a decision, these past six weeks, we continued doing as much as we could here at home, we are supplenting, using a rife machine (we bought that prior to surgery total cost of $5,000 on a credit card), juicing, and other alternative things we had been doing before.
Uzias is not in pain, he seems to be doing very well. Thank God! Can't thank him enough. From past experience we know that even though he seems well, that things can be going on that we don't see. Nevertheless, we are very thankful that he is not in pain and that he is functioning well.
We had our minds set on Burzynski but only God knows why things happen the way they do. I trust God's wisdom. Thank you everyone for your prayers and support, for the donations and everythig else sent our way. Thank you for your kindness and generosity. We are still going to continue fundraising for Uzias. We will be selling some wrist bands and t-shirts to help with raising the funds we need. Another thing, I have a job, that should help a lot. My mother in law will be staying with Uzias for a bit. My start date is for February 25, but will ask to start a little later, in able to go with Uzias to North Carolina. Once again, thank you and God bless. I pray that God multiplies your blessing and returned to you everything you have given to me and more.
Update January: (For those that do not know)
Uzias was taken to the Lehigh Valley Hospital's emergency room on 1/3/13. He was not responding after spending an entire day in bed with very little to eat. His a CT scan revealed that his brain had shifted due to increased pressure from tumor. He was then given steriods to help with the inflammation while waiting for the Hershey Children's Hospital ambulance to pick him up and take him to Hershey Medical Center where Uzias has been seen since he was diagnosed in 2010. Uzias was up and aleart on the way there and from there on. It was determined when we got to there by his Neurosurgen that an emergency surgery to debulk the tumor was needed. January 4, 2013, Uzias had his fourth surgery to remove part of the tumor (debulking of tumor instead of resection) this time. Everything went well during and after surgery. About 90% of the tumor was removed. Since then Uzias has been doing great and recovered from surgery very well with no complications at all. The doctors again recommended radiation treatment for Uzias. We agreed to an appointment with Children's Hospital of Philadelphia (CHOP).