Soren's Team!

Wow! First off I'd like to thank you all for participating. It was really nice to see all the pictures hopefully next year Soren and I can join too! As a team we raised 3,948.74 that is just awesome. For those of you who participated please leave feedback on your experience in the walk. I want to thank all of you who came to walk with Tim and for those who helped raise money in honor of Soren. I heard we had a fun rowdy group that's great I can't believe I missed all the fun again. Special thanks to Jennifer and Ricardo who worked especially hard to help make our team so successful!

Kiss Country Radio-thon 2007

As many of you know we were back in the hospital last week because Soren had a virus and a fever with low counts! He is at home and feeling much better he just shared his little virus with mommy and daddy. They released us with directions that said keep him off his meds. and wash hands frequently and stay away from sick people. So does anyone want another child LOL! While we were there one of my favorite radio stations was there having a fundraiser for the hospital. I was blown away with the amount of people I saw volunteering it was pretty cool. I wanted to contribute something since this truly is our home away from home. I wrote a short letter with hopes that Tim would read it on air ( Because he is the stronger one) he told me no babe you read it. So I went to the radio DJ and asked her to read it but she talked me into reading it so I did. I did get choked up on a couple of parts so for those of you who may have been listening I typed it out. I do however think it is something for everyone in the valley to ponder on. I know many of our friends and family are working hard to help us out with Soren's Team for the Leukemia Lymphoma Society. I know someone told me we should of been change bandits instead of doing the light the night walk. Let me explain. The radio-thon collects for the hospital for instance the funds go to purchasing equipment for the hospital such as incubators for preemies etc. That is just awesome. The light the nigh walk assists with research not just for children for everyone! So basically they are two entirely different things. Thanks for all your support either way anything helps either organization.

To Kiss Country and all their dedicated listeners,

On behalf of my family I'd like to thank you for your devotion to such an awesome facility. On April 27, 2007 our son Soren was taken to his regular doctor for what we thought was a regular cold and maybe an ear infection. That day the doctor sent us to get lab work that evening she called and asked if we could take him to Valley Children's Hospital the next day for some more lab work. On Saturday, April 28, 2007 we went to Children's hospital and a couple hours later we received a call to come back to the hospital that our son Soren was going to be admitted to the oncology department because they suspected he had leukemia. We drove right back and walked straight in to a room that was ready for us. They sat us down and confirmed our biggest fear our 3 year old son had leukemia. I recall feeling completely helpless, but I remember all the staff was very supportive and there with us. So basically in about 24 hours we were directed to one of the best places possible. That whole day was a blur, but one thing I do remember was Dr. Johnson welcoming us to the family. Soren was diagnosed with A.L.L. Leukemia will continue to receive treatment ere for the next 3 years ( until 2010). There have been times when we had to come back to the hospital 4 times a week for chemo. We are fortunate to live in Fresno and be able to drive back and forth and continue work and be a somewhat normal family. Just knowing that we have a facility of this magnitude in our back yard with the quality of staff here to care for our children means the world to me. I would like to thank all of you who have chosen to make this hospital a priority. As a parent we always want to give our children the world why not make sure that if and when necessary there is a world class facility available to them. The children really deserve to have a hospital that specializes and caters to all their needs. Thanks again for supporting this hospital and putting our children first. God Bless all of you who continue to support our children and help provide them with such an amazing hospital. Trish

Light the Night Walk In Soren's Honor!

I went to a meeting a couple of weeks ago to kick off this event. I was very impressed. I was able to meet many people who have been affected by this organization in a positive way. I realized that I was doing the right thing. Considering all of this has been so new to us all. I know many of you have constantly asked if there is anything you could do or even felt sorry for us. Unfortunately, many times there was nothing you can do but, pray for all of us. Now, if each of you either participate or donate to Soren's Team you are helping us and many others out there who can only pray that one day there will be a cure! Your donations help with research, as well as families that live here in the valley who may not have health insurance or even a ride to the hospital. Leukemia took the lives of 6 people(19-35 years of age) during the month of June, 2007 here in Fresno. It affects everyone young and old. I am very glad that many of you have chosen to walk with us for such a great cause. I understand that many of you are unable to attend but, I ask that you make a donation anything would be greatly appreciated. It can be something as small making a sandwich for lunch and donating your lunch money. For those of you who are walking please try to raise at least $ 100 dollars. That can be asking 5 people for ten dollars and two for 25.Whatever you chose to do know that you are making a difference. I apologize for not being as involved as I would have liked to be. This whole bed rest thing really threw me off. I know now that my team most likely will not meet it's goal. But just know every little bit does make a difference!

Finally

Soren is now in the interim maintenance phase. He should be in this phase for about two months and then it will get crazy. So in this phase he can be normal. The only thing is now I can't do anything. However, dad took him to the zoo and they had tons of fun! We just have to be extremely careful since it is now flu season. Soren is feeling much better he is mommy's little helper. Thank you for your prayers!

What's New in the Jacobsen Household!

We are still waiting for Soren's counts to go up so he can move on to the next phase. His ANC counts are still very low which means he is unable to fight off anything. So he is still isolated. I know this blog is used to keep everyone updated on Soren's health. But since everyone is so faithfully praying for him I thought I add another request to your prayers. This week I started to have contractions and had to be taken in to the hospital. They were able to monitor the baby and she is fine. I was given a shot to stop the contractions and two shots to help develop her lungs if she comes early. I am now on bed rest! So please pray that she waits it out and that I don't go crazy. Thankfully my mom was here to stay with Soren while we were at the hospital that just amazes me how my mom always happens to be here when we need her. She usually comes up every Thursday to watch Soren for us while we both work on Friday. But, it just so happened she came early and went with us to his clinic appt. Then she stayed here with us even on her birthday to help us out. So just continue to pray for all of us as we deal with another obstacle.

Just Waiting

Hello, I just wanted to update on Soren's progress. Last Wednesday he had a blood transfusion because his hemoglobin counts were too low. He also received some chemo after his transfusion. He is doing pretty good we are praying that his counts go up by this Wednesday. So we can move on to the next phase. Soren can't wait to go visit everyone! He is doing great thanks to you all for your prayers. He loves going to the hospital and doesn't even cry when he is getting poked! It still amazes me how tough he is. He does have a favorite nurse who is just amazing with him. Her name is Kim, she is awesome! Soren says his prayers every night. He says,

"Dear God, thank you for this food ,

pray for Soren to get better,

for my counts to go up,

pray for my baby sister,

mommy and daddy,

Nana and papa,

papa, great grandma and papa, Ama, and ..... in Jesus name AMEN!"

On our way to Interim Maintenance

Today was his last day of chemo for this week. For the last two weeks he has had chemo 4 times a week. He has been doing pretty good a little moody at times and nauseous but, overall he is doing fine! Keep praying for him. The next couple of weeks he will be finishing up this consolidation phase and moving into Interim Maintenance. However, his counts are dropping which is normal for him at this stage. The reason we are excited that he is almost ready for the next phase is because it will not be as intense as this phase he is currently in. We may even be able to be a little more normal! So as soon as he is on the next phase his counts should begin to go up! We shall see... I know I am getting a little ahead of things It has just been hard for him to have to be so confined. This Wednesday will be a tough day for him. He will have a different dose of chemo and what is called PEG (two long needles administered at the same time in his quadriceps). This is just brutal for us all, he has had this done several times and many of the times we were able to do it while he was still out but, this time he will be awake. After this he is very sore. Like I said before your prayers are extremely helpful!

P.S. Happy 30th Birthday Tim!

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!