The Beginning

Friends & Family,

I am actually finding it difficult to start this blog....where to begin? The past few days have been filled with fear, love, grace, awe.... I want to start this blog at the beginning so everyone can catch up to where we are today. I know some of you already know all of this but a lot of you do not so here we go.

Okay,

So Monday I called our Doctor to make an appointment for Ben, Olivia and Me. Our Primary reason was our concern for Ben. He had been pale, bruising easy and badly, two bloody noses, tired and a low grade fever. About two weeks prior we started noticing small things that progressively became more and more out of the ordinary. Bruising went from normal two and three year old bruises to slowly healing or worse than usual. A week ago this last Monday Ben got the flu with a low grade fever, congestion, cough, paleness & fatigue. Olivia and I also got sick with this flu and experienced the same symptoms with the exception of the paleness. Ben has always been a fair skinned boy but this was different he was losing colour. I say "losing" because it was not all at once. The fevers came and went but Ben's continued so I contacted the Doctor last friday(one week ago today) and they were closed. I called first thing this last Monday and asked if they could squeeze him in and they said okay so we got there at 10:00am and waited for the Doctor. When he came in and saw Ben he said that we needed to get Ben a blood test right away. I asked him if he thought Ben was anemic and he said that it was possible but he believed that he also needed to be tested for luekemia. He also said he would be testing for some chronic virus' that could cause the same symptoms but that he believed it was important to get the luekemia possiblilty addressed. I went in to get the kid's blood drawn and then took the kid's home with expected results in two-four days.

Tuesday started as a normal day. Got up at six am to get Matt out for work and to make the kids breakfast. Ben was acting fatigued but mostly normal ( he did not seem dangerously sick). I continued to work until about 1:00pm and I got a phone call from the lab asking for me. I was told that the lab had Ben's results back but that they were unable to reach the Doctor. I was also told that reaching the Doctor could not wait and that I needed to get Ben to the Emergency Room immediately that he was in serious danger. What kind of danger I did not know. The tech's exact words to the person making the call was "Call that Mom and tell her that baby needs to be in the emergency room right now". I made a couple phone calls while Sammy(our nanny) got shoes on the kids and threw together a bag. Sammy drove towards Estrella Banner until we were told to go to Phoenix Children's Hospital. We went straight there and Matt also headed straight there from work.

I called the lab tech back and asked if she could please fax the paperwork to PCH since we were headed there. She said yes and also told me to tell the admitting staff that Benjamin was in "Blast Crisis" neither she nor I knew what this meant but when I told the admitting staff "Blast Crisis" we were moved into a room in less than three minutes.

This is where the fear started...my Dad and Matt had looked up "Blast Crisis" online and found out that this is a term used for the Terminal stage of a kind of luekemia called CML. I was not informed of this because no one wanted to have me freaking out but initially it was thought that Ben had anywhere from hours to possibly days to live. THANK OUR BLESSED JESUS that this is not the case but I will get us to that place soon. Ben was looked at and then we were spoken too by a couple of Doctor's before we were taken to have his chest exrayed and given a room. Ben was admitted to PCH at about 4:00pm(2 hours after arriving). They re-did the blood tests and decided to start him on I.V.'s and also gave him a platelet transfusion and a red blood cell transfusion. Matt and I spent the night next to his bed and waited for my sister to get in at 9:30 that same night and my parents and brother to get in at 10:30 the following morning and my mother-in- law came at 4:30 the following afternoon. This brings us to Wednesday Morning. Ben had three blood transfusions the first night and had some pink color back by Wednesday Morning. At this time I was still unaware of the concern that he was Terminal. My father got in from the airport right before the oncologist came to visit us. The oncologist let us know that even though Ben's life had been at risk and he was indeed a very, very sick little boy he was not in "Blast Crisis" we in no way lay blame for the wrong initial info because we all believe that it saved his life by getting him in ASAP. We have been told by his doctor that had we not gotten him in when we did his blood count was so low that he would have shortly been dealing with his major organs shutting down and they believe that we would not have been able to recognize the danger before it was too late to do anything to save his life. PRAISE GOD!!!! We were told that even 12 hours more could have killed him!! PRAISE OUR MIGHTY AND KNOWING GOD!!

Dr. Henry is Ben's Oncologist and he let us know on Wednesday Morning that we were looking at either AML or ALL as the likely forms of Leukemia that Ben had. AML has curability rates of 50-70% and about six to eight months of Chemo therapy as form of treatment. ALL has curability rates of 70-85% and 3 and 1/2 years of Chemo Therapy as form of treatment. Both rarely need Bone-Marrow transplants!! My Dad cried out "PRAISE THE LORD" and I not knowing that there was fear of Ben possibly Dying soon just soaked in the information. By the way I must say I am glad I didn't know and my family made the right choice in not telling me this.

Yesterday at Noon Ben had a procedure called Bone-marrow Asperation. This means they removed some samples to test for exactly what type of Leukemia we were looking at. Yesterday at about 5:30 we were told that Ben has been diagnosed with ALL and a type called Pre-B!! PRAISE GOD!! We are looking at 80-85% curability. If we could have picked which one we wanted to end up with this would be it. His chances are the best in this situation!!

Now his treatment will consist of chemo therapy for the next three and a half years. Ben started today with a surgery to insert a IV port into his chest so he does not have to go through being stuck for an IV over and over for the next years to come. They also will be doing his first of many Spinal taps tomorrow. At this time they will also give him his first round of Chemo-Therapy....we have been assured that he will be feeling better in about 2 days!!! The Doctor's words were " he will seem like a new kid"

So there you have a very brief summary of the last few days. I would like to let you know all the many awesome ways that God has worked in this situation in so much detail but I will have to pace myself. I want you to know that I have a new friend who I now consider a family member who will forever be dear to my heart. If it were not for this person and her actions we have been informed that Ben would likely have died this week!! If she had not listened to GOD speaking to her heart my baby would most likely not still be with us. SHE SAVED HIS LIFE!!!!

I love you all and keep watching for more posts. Tomorrow is his first treatment of Chemo Therapy so I will keep you posted.