Oh yeah,

The full results for the lumbar puncture and bone marrow asperation will come tomorrow but they did let us know that initially it is looking better than the first.

Sunday Evening

Yesterday Ben had another Platelet transfusion so he could have another lumbar puncture (spinal tap) where they would also inject his spinal fluid with another Chemo treatment & also so he could have another bone marrow asperation so they can assess how the Chemo is working. The Chemo made him tired and quiet again, he didn't really talk much and stayed in bed most of the day.
Today they tested all the levels in his blood and although his platets were in good numbers his red blood count was down very low again so they gave him a red blood transfusion this morning. He napped for several hours today and when he woke up he was rested and the transfusion was finished so he felt much better. We walked around our floor because he is not aloud of our floor without a mask and he didn't want to wear a mask. Honestly though I am glad he doesn't because I don't really want him wandering the hospital anyway :). They had to start giving him a stool softner because one of the Chemo drugs call Vinchristine really makes it hard for him to go. We are praying that we will be able to counteract this once we get home with a really good diet so that he will not have to be on stool softners all the time.
Olivia went to Uncle Tim and Aunt Carol's yesterday. Ben (denny) slept at the hospital with little Ben last night so Matt and I could spend the evening together with Olivia. I think it really helped her to have a night with us. Valerie picked her up this morning with Baby Jack and took her to church with her and then home with her for the night. I stayed with Ben today and Matt slept now I am going to rest tonight and Matt will stay the night with Ben tonight.
We are praying that we get to go home tomorrow. It all depends on insurance so pray for us. I think Ben will do much better when we get him home. He has told us several times now that he thinks he is in trouble and that is why he is not aloud to go home with Mama, Daddy and Sissy. It makes me sad that he doesn't understand but I am praying that God keeps him comforted when I cannot.
Matt and I wanted to thank everybody. It is so hard to even keep up with all the people praying, babysitting, bringing food, visiting Ben, do laundry, cleaning our house....just to name a few. I want you to know that we are grateful for every one of you and all that you do. We are thanking God daily for the blessing of love we are recieving from you. Thank you so much.

Jamie

8-28-2009

Ben is in room 221-b now.

Friday Morning

Today we are hoping to get to go home so we will see how that works out. If we go home then Ben's next Bone Marrow Asperation (removing Marrow for testing) will be Monday. If we stay admitted today then they will do this tomorrow. He will not be put all the way under anymore they will be using conscience sedation(twilight). This sedation also keeps him from remembering what just happened and he wakes up very happy.

Friday Morning

Yesterday was a good day! Ben got a lot of rest that he needed, we asked to be moved to a different room that would be more quiet. The room we were in had an older boy who stayed up late so Ben wasn't really sleeping good at all. He took two naps yesterday and slept okay through the night. It is hard for him to sleep great because they come in every two hours to check his vitals and it usually wakes him up.

Ben had to have platelets last night because his count was low again. His NP (nuetraphils{white blood cells}) was only 30. They told us a child who is not sick with Leukemia would be above 5000!! He may or may not reach zero but either way he is immune system is really low right now.
My sister went home wednesday and my mom left monday. My dad is leaving this upcoming Monday and my Mother-in-law will be leaving on Sunday. We are so grateful they came to be with us it was such a blessing.

Yesterday we had to wait for the platelets because they had a shortage and could not get them to Ben right away. We found out that at times they do not have blood or platelets in the whole state and have to wait until they can be shipped. This worried us a bit and we are beginning to research more about blood drives or even just knowing if some people out there have the same blood type as Ben so we can call if needed. We are still learning about this so we will let you know if their is a need. They have let us know that they prefer that donors don't specify it for Ben only because blood is given expiration dates, but also if it is not specified for him then it can still be on shortage because the blood can be sent anywhere in the nation so we are not sure what we will do but the nurses told us that just in the last month they have had shortages that required blood to be shipped from another state. This only is a concern if Ben has any problems and needs an emergency transfusion if his levels are really low like when he was first admitted. Pray for us that God gives us the info we need on this. I will posting all the pictures on Facebook that Rita (mom-in-law) has taken since we have been in the hospital!

Thank you for your prayers!

8-26-2009

By the way I forgot to tell you the Steroid that they gave Ben last Saturday he has to take for 28 days in a row. The biggest side effect is hunger and he ate the biggest breakfast today. I have no idea where he put all that food but it was good to see him eating again. He hasn't really had a normal appetite since we have been in here. :)

Also my son loves to let us know just how big his bowel movements are. Last night he said "Mom that was a big one! Good job for Ben!!" aaaahhh boys!!

Wednesday Afternoon

I feel like I need to mention yet again how amazing our support has been. I am waking every morning with one of my first thoughts being of the huge numbers of prayers that are being made daily for Ben. Thank you so much.

Yesterday was a fairly easy day for Ben. Matt and I devoted the whole day to playing with him and cuddling with him. He was quiet but seemed to enjoy his day. The entire day was pretty uneventful until the evening. At six o'clock Ben had to have an injection in each thigh of his "P.E.G." another chemo drug. They numbed up his legs prior to the injection but he still felt them. He is a little champ though, took it like a man. I feel like my baby shouldn't have to take it so well but I am sure God is giving him a special strength reserved just for little ones. I know God is holding him tighter than me through this. Late in the night he told me he had to go potty and I got up and pulled back the covers and his sheets were soaked with blood. AAAGGGHH I ran into the hall probably white as a ghost and got the nurses. Ben had wiggled & tossed so much trying to go to sleep he had pulled a part his IV. Luckily they just had to clean it out and reattach the IV because he didn't pull out the needle. Then this morning the IV hose broke and they had to take out the needle in his port. But even though that wasn't the best we did make the best of it. I was able to give him a shower and let him stand in it as long as he wanted. Showers are comforting for him so he took a looooooooong one. They aren't going to hook a needle up for a couple of hours so he gets a long break were he doesn't have to be hooked up to any cords of any kind. Olivia came today to see him during the time were he wasn't hooked up so they got to play freely. We pulled them around on his floor in a wagon, then they walked around the floor out of the wagon. He was sad when she left but he was also tired from playing hard with her. It was good for him to see her.....Matt and I realized they have never been apart before. Poor guy he loves his "Sissy".
We are praying we get to go home soon!! Maybe tomorrow or the next day. It all depends on some paperwork getting done. Hopefully they won't take too much more time getting it done.

We love you all for your support!! Thank you for all the wonderful Birthday wishes....I had a surprise Serenade from some very special peoples....Matt brought in a cake and lit some candles and almost gave me a heart attack because the hospital has smoke detectors and I was afraid he would set off the sprinklers and get us in trouble :) Crazy Man!! Thank you EVERYONE!!

Amazing Coincidence

I had to come down to post that the neatest thing happened just now. Dr. Wilson came in to see Matt and I. He is an endocronologist here at Phoenix Children's Hospital. He is from Matt's home town in Newton, MS. His cousin grew up in the house that Matt grew up in. He was a very sweet kind man who answered a lot of questions for us today (Ben will have to see a endocronologist later on during his treatment) . Another way God is letting us know he is with us. :)

8-24-2009

Today is my Birthday and I wanted to let you all know that I logged on to facebook and cannot believe how overwhelming it was to see all the birthday wishes. So overwhelming in fact that I feel like I must share with you my thoughts & prayers this morning.


For years now I have disliked my Birthday. I used to like it very much but then things kept happening around my Birthday that brought me down. My dear sweet nephew passed away one year and he was so special to many of us. A good friend of mine commited suicide two years after that. Last year Matt was diagnosed with his Cancer the day after my birthday and now everything with Ben. This was making sad this morning so I found a small window of quiet time this morning before I took my shower and got ready to go today. I prayed that God would begin to heal my hate for my Birthday and I need to tell you that he softened my heart today when I got my Birthday wishes on facebook. Thank you so much for the encouragement you guys are wonderful. I am looking forward to celebrating my birthday this evening in a little hospital room with my husband and my sweet, sweet baby boy!

I love you all so much!
Jamie

Monday Afternoon

We got some good news this morning when we came in. The results of Ben's Lumbar Puncture (Spinal Tap) came back negative for Lukuemia cells. This is such an awesome answer to prayers because this means that we do not have to worry about treating Ben with Radiation to his brain. We feel like a weight has been lifted.

Also Matt has been doing some research and is learning more each day about Ben's particular type of Lukeumia. We originally were told that "ALL" type "PRE-B" has an 80-85% curability. Through Matt's research in the wonderful library at the hospital called the emily room, put in place for family's like us to research their childrens diseases, we have found out that the 85% is an overall average for children and adults. What we are learning is that this average means that adults have more like a 60% curability where children under the age of ten are place at 90.9%. I am sure you can imagine what good news this is to us. Every little percent is huge to us. So I ask that you Praise God today with the direction we believe he is taking us daily.

Ben is doing well today although he is still very tired he is tolerating the Chemo wonderfully. He is complaining of headaches so they gave him Tylenol this morning but so far has not had any nausea that we can tell and no vomiting. He is still not feeling very talkative or playful but he was teasing me playfully about an hour ago. He was wiping my kisses off his face and laughing when I went back to give him more.

So far his appetite is beginning to pick up. The Doctor let us know that one of the medications that he is on, a steroid, will greatly increase his appetite and to expect that he could gain 20-25 pounds while on this steroid.

It looks like we will not be released to go home with Ben tomorrow like it was originally planned. His blood pressure is still a little high and we want to be sure that he is okay. We are hoping for maybe Thursday or Friday.

I have a prayer request for all of you that are praying for us. I am a little nervous to take Ben home because we have many new routines to adjust to. I hope you will join me in my prayer that God will perform a miracle in me. Aside from general hygiene Ben will have many special routines throughout his day and I will be in watch for germ exposure for the next three years. Those of you who know me well know I can be extremely scatterbrained so I ask that God will bestow a grace to me to give me immediate help in this area. I want to be the best protector I can be for him to keep him from getting sick as much as possible. I also want to be as on top of things as I can be.

The Chemo Therapy will deplete Ben's immune system after each treatment the worst days for him will be between day 7-10 and he will be having weekly treatments for six months so he will have pretty much no immune system for the next half of a year. He will be given antibiotics every Saturday and Sunday for the next Three and a half years to help prevent a particular form of Pneumonia. I believe this will also help protect him from other exposure.

Thank you again for your prayers. I will never be able to say enough how much that I believe that God is honoring our faith and prayers on a daily basis to benefit Ben's outcome in this. I will never be able to tell you how much it means to me that I believe all of you are taking apart in his life with your prayers.

I am working on posting some pictures from the last few days but have limited resources for that here at the hospital.

Jamie

Ben is in room 217A. It changed when he was brought back up from PICU.

In the old testament before they went into battle the israelites claimed victory in the name of the Lord. Their faith was so strong that they knew the outcome would be victory before they even began the fight. This is why I have chosen to name this Blog Claiming Ben's Victory.


Jamie

I was unable to post yesterday because it was so hectic. Ben was scheduled for surgery Friday Morning to have a permanent IV port put in so that it would be easier for him to recieve fluids, transfusions & Chemo Therapy. He was also scheduled to have a Spinal tap and his first Chemo Therapy treatment injected directly into his Spinal column. This is to kill any Cancer cells that may be in his spine. He was also supposed to have another Chemo therapy medicine put into his IV port later Friday afternooon. During surgery his platelets were so low that they could only due the port IV they decided not to do the spinal tap and Chemo injection because they were worried that he would bleed into his spinal column.
Friday night my Mom was taking a shift so that Matt and I could go sleep in the hotel room. She took over at about 8:30pm, at this time ben's blood pressure was high and so Mom and the nurse promised to call if anything changed for the worse. Matt and I went to the hotel and spent the first time alone together privately that we have had since Monday. We prayed to together for Ben we asked God that he would heal our son and not take him from us. We both also told God that we know he is sovreign and that we want his will in this. We fell asleep around 10:30 and Mom called at 1:00am and said get down here as soon as you can. When we arrived they let us know that his blood oxygen levels dropped to 60(they are supposed to be above 90) and his blood pressure was very high. They moved him to the PICU(pediatric intensive care unit) they assured us this was precautionary and that they are able to monitor him better there. They took an Xray and discovered that he had fluid on his lungs they told us this was because of all the fluids he had been recieving. They also took swabs from his nose to test for virus' and infections. They put him on antibiotics just in case he does have these. We will not have results of the swabs for three days (monday). Ben and I fell asleep at about 4:30am Sat. morning and I woke up at about 7:00am. Ben was still asleep and they did another xray to see if the fluids in his lungs had gone down since they gave him medicine to make him pee it out. They also redrew his blood to test for any abnormalities. Matt and I left to go home and get some paperwork for the hospital and then we went to the hotel at about 2:00pm to get some sleep. During this time Benjamin had his spinal tap and his injection of Chemo in his spine. He woke up well from this procedure and had his other Chemo put in his IV port. We woke at about 7:30 because Aunt Jill and Uncle Kelly brought us some food. The Lord is good and that food made both of us feel so much better. We called my Dad and asked if my sister could stay the night so we could rest up. This morning (sunday) my Dad called and let us know that Ben was being moved back up to the 2nd floor. We have been with him at the hospital since about 9:30am. He is not feeling well(likely from the Chemo) so he is very quiet. He will not speak to me or look at me. At first I was saddened and thought maybe he felt betrayed that we slept away from him but a father of another child on our floor told me that this is normal from just having a chemo treatment. So I am asking God for the grace not to take it personally. I did cry at one point and he finally spoke to me and said "mama come here you need hugs & kisses" so see God answered my prayer. That is all Ben has chosen to say but it is enough for me. :)

Once again I need to tell all of you reading this that I am daily encouraged by just the sheer numbers of prayers and all the support we have recieved. Even through the good news we have a long road so please continue to pray for us. I can tell you that God is ever changing the course of Ben's road through your prayers.

Jamie

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.