KFI AM 640 David Cruz

David Cruz thank you so much for airing our story this evening.  We hope with the story being on your talk show we will be able to help more families in the same situation as us.

We know a lot of people have a dozen questions on how to help, please visit our own Be the Match website at http://www.bethematchfoundation.org/goto/salaguirre If you would like to see if you qualify to join the bone marrow donor registry please go to the bottom of the page and click on Join the Registry.  You can also find out more information on the website on why there is an age limit and what other health factors can affect whether you can be on the registry.

We would also like to say thank you to the following departments for organizing a bone marrow drive and blood drive on January 4th in Sun City at Riverside County Fire Station #7 at 26780 Bradley Rd in Sun City, CA 92586:

AMR Riverside

Riverside County Fire Dept/ CALFD

Riverside County Sheriff’s Department

Menifee Bone Marrow Drive

Please join us on January 4th for a Blood and Bone Marrow Drive.  Our neighbor and friend Jeff LaRusso and Theresa Williams have organized the drive to help our family.  The drive will be held from 12pm – 5pm on January 4th at Fire Station 7, 26780 Bradley Road, Sun City, CA

For more information please call Theresa Wiliams at 951-722-8813 or Jeff LaRusso at 951-722-6713.

When signing up as a bone marrow donor, you will need to be between 18-44 years of age.

If you are not able to make it that day, you can easily go to our personal Be the Match website and signup.  Once you are on the website you will go to the bottom of the page and click on “To join the registry online”  http://www.bethematchfoundation.org/goto/salaguirre

If you do not want to join the registry, but you would like to help, please consider donating to our fundraiser. Our goal is to raise enough to pay for at least 50 tests, which is about $5000.00, we have already raised $885!  You can click on the “Make a gift” link below the thermometer on our Be the Match website http://www.bethematchfoundation.org/goto/salaguirre

Thank you for everyone’s support!!!

December 28, 2012

Today we took the kids to Wrightwood to play in the snow. Sal was a little worried about going but I think it was worth it. He had some problems with the high altitude and the cold air but once he was use to it, he was a little better. Each day he realizes how much muscle mass he has lost, but each day he is slowly working to gain it back. He wasn’t able to walk too much or ride a sled, but he was able to share in the laughs and enjoyed watching the kids laugh and play in the snow. It is hard to live in fear of not knowing when the Leukemia will come back, but that doesn’t mean we have to dwell on it. We need to enjoy our lives and make memories that will last a lifetime. Today was one of those memories that we will have. Sal may not be able to do everything that he was able to do in the past, but he is still able to try. We still need to find a donor, but in the mean time we want to enjoy little things like going up to the mountains. :)

December 23, 2012

We are waiting for the doctor to release Sal so we can bring him home!  This was his last round of consolidation!  They are also going to remove his PIC line that he has had in his arm for the past seven months!  He is so excited he will be able to take a shower without having to wrap his arm!!!  The next couple of days are going to be busy!  We have been celebrating Christmas Eve with our neighbors the Bofills and Castles for over 10 years, so we will be cooking all day tomorrow and we are also cooking food for the Menifee Christmas Dinner that serves Christmas dinner for people in need.  So needless to say we need Sal home so he can start peeling potatoes!  We are cooking 30 pounds of potatoes, two turkeys, and two hams…..We don’t have time for this cancer!  :)

Our journey is not over yet , but we want to say thank you to several people:

We would like to say THANK YOU so much to the OCTA IT Department (Orange County Transit Authority – Computer Dept)  They adopted our family this year and brought the kids gifts and money for us to do something with the family!  Sal worked for OCTA 5 years ago.  A driver saw our TV interview and mentioned it to a supervisor.  Somehow, the word spread and the IT department wanted to adopt us.  Sal worked in the IT department for a little while during his 10 years that he worked for OCTA.  We are so blessed to have people like the IT department in our lives…even after 5 years of not seeing him they still remembered him and wanted to do something special for us :)  THANK YOU SO MUCH!

We would also like to say THANK YOU to the 163rd Security Force and Family Readiness Group at March Air Force Base.  On Friday, we were surprised with a large BUCKET of food, games, and toys for the kids along with $75 in Walmart gift cards.  They have been so helpful during the past 7 months.  When Sal was first diagnosed they came and cleaned our backyard and they have continued to check on us each month :)  Thank you so much!

We would also like to say THANK YOU to the Riverside Sheriff Deputies that have donated their vacation time.  We are VERY grateful for this.  Sal had about 5 months of vacation and sick time when he was first diagnosed and I believe in October it ran out, not sure on the exact time.  If it wasn’t for the donated vacation time we would have to pay $1400 a month for insurance!

We would also like to say THANK YOU to the Court services for all or their donations.  Mylene Green for organizing a very enthusiastic Zumbathon fundraiser!

We would also like say THANK YOU to the Riverside County Sheriff’s academy class that will be graduating in January for their donation. Sal used some of the money to buy a bike to take Jacob to school when he was home, so not only did you help Sal but you also made Jacob happy :)

We would also like to say THANK YOU to all of the people that have helped the past seven months go by a lot smoother.  If you have not been in our exact same position, there is no way of making someone understand how tiring, emotional and physically hard it is on everyone involved.  The kids have been blessed with amazing teachers and friends to help them.  Sal and I have been blessed with AMAZING friends.  The Mull Family, Canales Family, and the Shumway family have been so gracious to give up time to organize fundraisers to help us financially during this time.  You know you live in a great community when everyone tries to help each other even if they don’t know you!

We would also like to say THANK YOU to Maria (aka Grandma) and Anthony, Brian and Candie, and Dennis for everything that they have done.  They have made us feel like family and have helped us so much

We would like to say THANK YOU to the “Guys”.  They stayed with Sal several days during the first two months to give me a break and I am not sure how we could have done it without them.  They not only supported us physically but also financially and emotionally.  No matter where they lived they wanted to help Sal in whatever way they could.

Last but definitely not least, we would like to say a HUGE THANK YOU to the staff at Kaiser Permanente 4 West in Riverside.  I can not say enough about how great they have been during the past seven almost eight months.  They have had to deal with our highs and lows.  We could not have done it without their help!  THANK YOU SO MUCH FOR EVERYTHING!!!  As with anyone in any profession it is a calling and these nurses are angels.  They have helped Sal stay strong and keep fighting.  I don’t think he could have made it this far without their strength that they gave him.

 

December 22, 2012

Day 18 Sal’s numbers are going up so the doctor just came in and said that she would discharge him tomorrow if his numbers look good. He hasn’t had a headache today so we are hopefully that he will not have any problems tonight and will be home :) his numbers for today are white blood count 7.8 platelets 14 and hemoglobin 10.0

December 21, 2012

Day 17 Sal had a rough night and morning. He has had a severe headache for the past few days and this morning he was throwing up. The doctor planned on sending him home today but since he had such a bad night and morning he is keeping him for another day or two. Sal had a MRI and more blood work and we are waiting for test results. His numbers went up really fast. His white blood count is 3.5, hemoglobin 9.4, and platelets 13.

December 19, 2012

Day 15 Sal is still having problems with having pain after getting his shots so they up the dosage on his pain medication.  Last night he had a low grade fever but it wasn’t anything to be concerned about, but they are monitoring him a little more. Today he has had a normal temperature, but they are still checking him to make sure he is ok.  Hopefully, the counts will start to go up soon!

Counts for today

White Blood Count 0.4

Hemoglobin 9.1

Platelets 25

December 18, 2012

Day 14 Counts are still low, but this isn’t unusual.  Sal is still getting diluadid to help with the pain.  His platelets went up a little from the transfusion that he received yesterday, but his hemoglobin went down. He is still within the normal range with his hemoglobin so he doesn’t have to have a blood transfusion yet.  If his platelets go back down tomorrow he may have to have another transfusion, but we will have to wait and see.

His numbers from today

White Blood Count 0.3

Hemoglobin 9.4

Platelets 31

Why a Bone Marrow Donor is needed

We recent asked our transplant coordinator what the difference is in different types of transplants.  This is the explanation that he gave us.
When looking for a donor for Stem Cell Transplant, the best one would be: in the order of having the best choice -
1. Autologous Transplant – meaning your own (this type of transplant is only used in certain diseases where your marrow is not affected by the disease, so this would not work for Sal).
2. Sibling Donor who is a perfect match to patient
3. Unrelated Donor who is a perfect match to patient
4. Unrelated Donor who may not be a perfect match but still is within the range of a safe transplant
5. Cord Blood Donor that is a good match to patient.
Cord Blood is used as a last resort because of the complications of GVHD (Graft versus Host Disease). GVHD can still be controlled with medications that is started at Transplant.
Sal’s Dr. did not want to start searching for a Cord Blood Donor for Sal since the chemotherapy that he has been receiving is controlling the leukemia at the present time. Eventually Sal will need an Allogeneic Stem Cell Transplant and at that time his Doctor wants to make sure we have something available for the transplant.
At this time, there is not a donor that is a perfect or even a some what perfect match, so the doctor is now widening the range to look in the cord blood donor database.  As you can tell this is not the best option.  We are hoping with the help of our friends and family we can spread the word of how important it is to register as a bone marrow donor.
Please go to http://www.bethematchfoundation.org/goto/salaguirre  and register today, if you do not qualify because of age or health, please donate to help raise money to cover the cost of the tests that are sent out each day.