First of all, I would like to thank my family and friends who have been so helpful to us, especially my sister Jasmin, Vanessa, Rachel and Amie. They have been so helpful in babysitting and taking care of my other son, Rafael, when Mateo has had a bad day and I needed to focus only on Mateo, or just when I needed a break. Rafael is turning 1 year old this month. And just like all toddlers his age, he is constantly on the move--he just took his first couple of steps. I have to admit; sometimes I feel guilty that Rafael gets neglected and that we are missing out on his milestones. But, I feel better knowing that he is well taken care for when he is with aunties who love him so much.
These past few months have not only been heartbreaking for us, but also an adjustment. Mateo requires our constant care. Some side effects of the steroids are excessive weight gain and increased thirst. Not only does he require a wheelchair and walker to get around, but he constantly needs to go to the washroom. Up until now, Michael and I have been sharing in the responsibilities of primary caregiver for Mateo. However, finally, the insurance just approved home health care last week. At first, I resisted the idea of having a nurse come in. I personally wanted to take care of Mateo myself. Nothing gives me more pleasure and satisfaction than always being there for him. I remember crying the first time I left him to run a couple of errands. All I kept thinking was that I missed him so much and that I hated leaving him. I don’t know if it is because he is my first child or that we spent a lot of time together when he was growing up; but I have always felt a great connection to Mateo. I don’t know who needs the other more, him or me. All I know is that I can’t even think of life without him.
Mateo with Nurse Cindy
We have several part-time home health nurses. The insurance has approved for a nurse caregiver for up to 12 hours a day. Unfortunately, because Maxim Home Health Services are short staffed, the nurses have only been able to help us for less than 8 hours a day. The primary nurses’ names are Maria and Cindy. They have been so very helpful. They help with all of Mateo’s needs. Most importantly, helping me carry Mateo in and out of the car or just on to the couch. Now that I am 5 months pregnant, I can’t lift Mateo as much as I use to. Our nurse Maria has such a small frame and I sometimes worry that she will not be able to carry out this duty for me. But she has a big heart and is willing to try. Cindy also has children of her own; and she is really good with Mateo. Although Mateo sometimes is difficult to understand (the steroids also make his facial and tongue muscles weak; so Mateo doesn’t speak as clearly as he use to), Cindy can usually decipher what Mateo needs. I guess, like all mothers, even though some days I am overwhelmed and stressed, I hate to admit I need help. Up until now, I was doing everything- take care of Mateo, dispense his medicine, take care of Rafael, cook, clean, and laundry. I don’t know how I do it all sometimes. I think that God gives me the strength and my love for my children keeps me going. But now with the aid of the nurse, I am able to spend more quality time with Mateo and Rafael and still be able to do all the house chores. I still don’t feel comfortable with the nurses changing the IV bags of antineoplastons—there are some things that I just prefer I do myself.
Mateo with classmates
Mateo started his first day of kindergarten on September 1st. It was the happiest and proudest day of my life to see Mateo be able to reach this milestone. Mateo was so excited that he walked to the closet to pick out his clothes, walked to the bathroom and got ready and even walked to the car. This is the same little, sick boy that usually is so tired from all the medication that he usually spends most of the day watching tv and has to use a “peepee” cup, in stead of always going to the washroom. (The steroids make Mateo very thirsty –and what goes in, must come out. Usually he needs to go about every 15-20 mins).
Before school had started, Mike and I were discussing whether or not to let Mateo go to kindergarten. Mike didn’t want Mateo to go, because he knew how susceptible he was to getting sick-- and everyone knows that school is a breeding ground of germs that are passed from one child to another. Mike didn’t want to take a chance of Mateo getting sick, and possibly going to the hospital from just a common cold. I agreed, but I knew that deep down Mateo had his heart set on going to school even before he had gotten sick. How could we say “no” to one of his only wishes; especially after all that he has been through. We couldn’t. I remember that before Mateo was diagnosed with his brain tumor, I was always amazed at how smart Mateo was. At age 4, he could count up to 300; and he would always beat me at that memory card game (you know the one that you have to get as many pairs, by remembering where they are). I might be partial because I am his mother; but even now with his condition, I still think that he is one of the brightest little boy I know. I know now that some people don’t see Mateo the way I do, but they just have to look a little deeper into his soul and really get to know him. Sometimes I think I am so lucky to be his mom. I knew that Mateo had to go to school, there was no other option. So, my sister wrote a letter introducing Mateo to all his classmates and told them very politely to be considerate and to stay away if they are sick. With that and his Batman backpack, off he went to his first day of school. Seeing his happiness and determination on his face that day, I know that we made the right decision.
Mateo goes to Evergreen Elementary School in unincorporated Carol Stream. It is a public school; and they have a good special education program there which is incorporated into the mainstream classroom. His teacher is Mrs. McGinnis and the teacher’s aid is Jenny. Mateo’s nurse goes with him everyday to class. The faculty has been so great and understanding. They even switched his best friend and neighbor, Sophia, to his class. They understand that Mateo sometimes might only be able to attend 30 mins. of class before he gets tired or sometimes longer. If he misses too much school, they will even send a tutor to our home to help him catch up. The principal even let me go to school with him and the nurse for the first week of school. Of course, I had to wait outside the classroom door—I hope I didn’t embarrass him too much. Now, while he goes to school, I am able to spend a little one-on-one time with Rafael. I know that letting him go a little and being independent is a good thing for both of us.
The only thing I can tell any parent is to please listen to your children. Really listen to them, not just hear them half-heartedly as you are distracted with cooking dinner or doing bills. They have so much to say and teach us. This is the only way to know what their spirit needs to grow and flourish.
Mateo is getting his an MRI on September 12th. This will be his 2nd one since the beginning his antineoplaston treatment. Please pray for him.
Thank you all for your help, support and prayers!
Dear Friends, Family, Supporters & Sponsors,
First of all, Ailene and I would like to thank everyone for your donations and prayers for Mateo. God is watching over him and He is listening to our prayers. Please be vigilant in your devotions when it comes to praying and asking God for his grace & mercy on Mateo.
On June 17, 2005, Ailene and Mateo were discharged from the Bruzynski clinic in Houston. Since then, Mateo has been under the care of physicians here at Children’s Memorial Hospital and home health care providers.
Ailene has been competently administering his daily medication via infusions. Mateo is continuing to take his infusions; and we are able to raise the doses without major complications. Currently, he has reached his maintenance dose of the A-10 solution (280 ml/dose) and is working on reaching his target maintenance dose of 25ml/dose of the AS2-1 solution (now he is at 17ml/dose).
These are great achievements considering some current patients have yet to reach this dose level.
Here is the BEST news of all………
God truly is listening to all of our prayers. Before, while our son was being bombarded with the “Thalamic Pain Syndrome” (TPS), we would plead & beg in our prayers for it to stop. Two weeks after starting his treatments, the TPS episodes were considerably less. At one point, he went for days without having any.
When looking back and comparing what he was enduring prior to June 17th and starting the Burzynski antiplaston treatment, we strongly believe God is listening and answering our prayers.
More great news…….
On July 21, 2005 Mateo had his first MRI since the treatment started. If you have read his previous update, you already know that we discontinued the conventional chemotherapy because after six weeks of the treatment, Mateo’s tumor had increased 25%.
Well, after six weeks of antineoplaston treatment and THOUSANDS of prayers collectively, the MRI showed no signs of growth. This blessing brings a sigh of relief. We will definitely continue the antineoplaston treatment.
Currently, Mateo has had some physical challenges we feel should be shared. He has added 32% to his original body weight of 40 lbs, bringing him up to 53 lbs. This change is due to his necessary steroid medication. The steroids are being used to control swelling in his brain. While the treatments do work, the steroids have weakened his limbs. This and the additional weight are making mobility an issue. These side effects are reversible when the medication is no longer taken. Mateo’s facial muscles have also weakened, giving him sleepy eyes and a lazy tongue.
At this time, it’s not know if it is the medication is making him tired or if the exhaustion is from all that he is enduring or the tumor itself, only time will tell.
Last, but not least, God still continues to bless the Rotger family. We recently found out that Mateo and Rafael will be big brothers to God’s third blessing to us. Ailene is expecting in February 2006.
Personal Note from Dad:
On behalf of my family, I want to thank all of you who have kept us in your prayers. This truly is the hardest thing I personally have ever faced. Mateo is the most courageous little boy I have ever known. Through this entire ordeal from doctor visits, hospital stays, MRI’s, surgeries and treatments, Mateo has NEVER, not once complained or asked why this is happening to him.
Mateo accepts the cross given him to bear and carries it without complaints. Through his courage we can all learn a few things. My wife, Ailene, is truly an amazing woman. Through her father’s illness and this unfortunate circumstance, she has taught me much about compassion and love. I have learned that we all need more of it to be better people.
Parents-- God has given us a great responsibility…our children. Don’t take anything for granted. Shower them with love and affection, not material things. The love and admiration they show is God’s thank you for taking care of them.
Please continue to pray for Mateo and our family. GOD IS LISTENING and he will answer our prayers in his time. All we need to do is continue to be patient and vigilant.
Thank you and God Bless you, The Rotger Family
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