BACK ON TRACK!

Hello, we are happy to inform you all that Soren is back on track. His counts went back up to 1150 from 150 that is so good. Of course they could always be higher at one point they were 5000 (just to give you an idea of how they fluctuate). We are so happy because it has been about three weeks with low counts and that means no Chemo. His infection did set him back so we are very excited that he can begin his chemo and continue on in his consolidation phase of chemo. He was feeling much better he had a good day at the clinic he let his favorite nurse Kim access his port like a big boy! This is another blessing as well. It usually takes all three of us to hold him down. I wasn't able to go to the clinic today because I had to work but, Soren called me and was very proud of himself that he didn't cry. So that made my day. So now that he is back on track he is able to move along and finish this phase of his chemo which should last about a month. A special thanks to all who are praying for him please continue to pray for him as he is still being treated with intense chemo.

HELP SUPPORT SOREN'S TEAM

I just wanted to say that this blog is a perfect way to keep everyone informed about our son's progress. I know sometimes it may not be the most uplifting thing to read but, it brings an interesting perspective on this disease. I will be honest prior to this I had no idea what Leukemia even was. I firmly believe that everything happens for a reason. I know that even though this has been a difficult time for us all, we are adjusting to our new lifestyle which seems to revolve around counts. I know that this blog helps me journal this process and remind myself that this is just a part of our lives now. Although some of the things we have been through have been tough I am sure without having SUPPORT FROM FRIENDS AND FAMILY this would be much more difficult. Unfortunately, there are many children that we see regularly that do not have the support that we do. That is why I decided to support the Leukemia Lymphoma Society and help Light the night on October 6, 2007 at Fresno State. This helps raise money for The Leukemia Lymphoma Society. This organization helps out many families who may not be fortunate enough to have medical benefits or even assist with rides to and from the hospital as well as many other resources. They also assist in helping find a cure! I know we are only one family but, there are many cases of Leukemia each year. Most of the time I feel helpless so I figure the least I can do is help with raising awareness, to help support other families ,and of course help raise money to assist in finding a cure. So we have provided a link in the upper left corner just click on it and join. The way it works is in order to be considered a team we need to have at least 10 team members each member will be able to raise their own money everything is set up already you can just e-mail all your friends and family and they can donate directly to the Leukemia Lymphoma society from your donation page. It is really that easy I know we all forward jokes every now and then so why not do something for a good cause! You can choose to walk and raise money yourself. There is no minimum amount that you need to raise every bit helps. Another important detail you don't need to be in tip top shape all ages are encouraged and welcome ( remember I will be 8 months pregnant so believe me I won't be walking very fast) If you are unable to join you can donate money to those of us participating on a team in Soren's honor called SOREN'S TEAM.

There's No Place Like Home!

Thanks for your prayers we are home. We are all doing much better. Soren did not need to have his medi-port removed! It turned out his infection was just a skin infection on top of the port called a pocket infection. It was treated with a couple of antibiotics.THANK YOU FOR YOUR PRAYERS! He seems to be doing much better we are now just waiting for his counts to go up so he can start back on his chemo. I know Tim and I usually complain about always being home but, we much rather be home than at the hospital. I want to thank our co-workers for being so understanding with our schedules. We both continued to work even though our little guy was in the hospital we did each take a day off. My mom was here with us and she stayed the night with Soren so we could get some sleep. Now, we just need to keep him healthy so we can stay home!

Part Two of 7-7-07

He is still at the hospital. The doctors say that he will be there until Sunday, "Hopefully before Sunday". It all depends on if the infection goes away. They are saying that the infection is a "pocket infection" in the skin, which is better than having it in the blood or in the medi-port. He has taken a lot from the nurses and doctors but he seems to be doing well. This morning my wife was surprised to find that while he was eating, a tube to the medi-port disconnected which caused a puddle of blood in his bed. It is amazing how this medi-port works. If there is a break in the line, the blood will start to flow outward. He was alright but I can tell my wife was extremely stressed out. So far the medi-port does not have to come out but that could change. I am becoming more tired each day. I cannot imagine how my son feels. I would like to thank all the people who have prayed for us. I think that because of all the prayers and concerns he is doing well. I would like to ask everyone to continue their prayers in hopes that he is healed and there is no more surgery.

Part 2 1/2 (by mommy)
Yes I happened to be there when his medi-port disconnected. It was scary at first there was so much blood I couldn't really tell where it was coming from. The good thing is I was there and not Tim. I told the nurse I am so thankful this happened while I was here because if my husband was here you would have two patients to deal with. Soren was very calm (HE MUST TAKE AFTER HIS MOM) he said I have an emergency call an ambulance that was it. I was very happy that the nurse was able to clear the line this kind of thing could of resulted in something worse.

7-7-07 is NOT SO LUCKY Afterall

So you would think with all the media coverage about today, 7-7-07 it would be a lucky day......well it's a lie. What seemed to be the start of a normal day, Soren came running up to me complaining about pain near his medi-port. I thought it was minor until I realized the look on his face. I grabbed the thermometer and proceeded to take his temp. 99.5 that was high but nothing alarming. About 5 minutes later his temp came back at 100.7. My fear set in about that time my wife came home from the grocery store. We took his temp for the eighth time only to see 101. I called the hospital immediately and was told that he would have to be admitted. I think my wife said it best when I arrived. She said something like, "I hate coming here". As we got our room the nurse and doctor rushed in to see how Soren was doing. It turned out that he has an infection that would result in a surgery that would replace the medi-port with a new one. He is on several antibiotics with some side effects and they told us that at minimum he would stay here until Friday. So here we are typing on our blog and the funny thing is my wife says (sarcastically) "Today is 7-7-07 a supposedly lucky day".....well so much for lucky but PLEASE PRAY FOR SOREN. He is going through a lot this week.

P.S.
As much as we don't like being here at the hospital we really do appreciate the facility and the staff. We are so grateful that we do live so close. We are also very grateful to all the nurses and Doctors who care for our son! Everyone here is so pleasant and helpful.

What has changed?

As far as our schedules, they go something like this....Tim works from 6AM to 12 noon and then continues to work at home via computer. I began at 12:30 and work until 9pm. This is our schedule Mon., Wed., & Thurs. On Tuesday we take Soren to his oncology appointments (which usually last anywhere from 7 to 12 hours). On Friday, we both work early, so we needed someone to watch Soren and I am very grateful to say that my mom once again came to help us out. I don't think I would feel comfortable leaving him with anyone else. She has been amazing through all of this. Thank you Mom I know we could not do this with out you! Tim works on Saturdays as well so usually our only days together are Friday evenings and Sundays. We cherish the family time! I know this sounds hectic but, we manage. Thankfully Tim and I really enjoy what we do so this makes it worth it and of course both employers have been AMAZING through all of this.

Living with Acute Lymphoblastic Leukemia

Wow, all this medical stuff can be confusing. First of all, it took the doctors a couple of days to determine what type of Leukemia he has. Leukemia is a disease of the blood. He has what is considered the most common A.L.L. It is caused by a rapid proliferation of immature lymphocytes, which would normally have developed into mature T or B cells. There are several subgroups of ALL. To determine the subgroup, doctors use the first sample of bone marrow taken from the child. This sample is analyzed to identify cellular characteristics to help plan the best treatment plan. Each subgroup has a different response to treatment; some require less chemotherapy, while others require aggressive treatment to acheive a cure. It was determined that Soren has ALL B cell type. Within these subgroups, there is a classification of high-risk, low-risk, and average-risk. He is considered Average-Risk, which, is not what we wanted but again we didn't have a choice. So being that he was classified, he entered the first phase called induction. It is the most important phase since its purpose is to kill as many abnormal white cells in the shortest amount of time possible. By the end of this phase 95% of children are in remission. He too was in remission by the end of this phase. He is now in the consolidation phase which consists of new combinations of drugs to destroy any cancer cells that have survived the induction phase. Because he is in the standard average risk they decided to be more aggresive with the chemo and medications. But thanks to all your prayers he is doing very well considering. His counts are not great but we have not had any major side effects. So due to the fact that he is in this phase we need to continue to isolate him from other children and adults who are not 100% HEALTHY. This has been a huge adjustment for all of us. It basically means we became a hermit family. It is very hard. I will often go to the grocery store and begin crying as I see other parents with their children, knowing that I can't take my son out. But I know it's only for the time being. It is still very difficult to deal with. As for Soren, he will ask for his friends every now and then. Thankfully he is too young so he really doesn't understand it all. Tim and I have became his friends; we play with him and he keeps us going. It is really amazing how tough he is!

P.S. I often get asked what causes LEUKEMIA ? Well I wish I had the answer! That was one of my first questions as well. Unfortunately, there is no answer to this very important question. I do know we are taking part in a couple of studies that we hope can make a difference, if not for our children but, our grandchildren or even great grandchildren. Just the thought of preventing another family from going through this is enough for us!