July 31, 2012

Yesterday, we went to see the transplant doctor in Hollywood.  We are very optimistic about what he said. The doctor said that each week on Wednesday the doctors get together with the board at the City of Hope and discuss the new patients that they have seen that week.  So tomorrow the doctor will present Sal’s case to the board at the City of Hope and they will discuss what the next step will be.

Because of the subtype of Leukemia (M5 Acute Monocytic Leukemia) that Sal has he will have to receive a bone marrow transplant, when this procedure is done he will stay a minimum of 6-8 weeks at the City of Hope.  Some of his visit will be outpatient, which he will still stay at the City of Hope but it will be in the bungalows that they will provide.  During this time I will have to stay with him to care for him.  He will not be allowed to go home and he will not have a nurse to check on him.  We do not know when this will happen, but we know that we will need help.  The doctor said that they will need to find a donor match and once they find a match Sal will be given various tests to make sure his body will be able to handle the transplant.  We did find out that Sal’s brother Rick is not a match.

Before the transplant Sal will have to have a round of chemo. He will also be given medication that will help prevent his body from rejecting the transplant.  I am not sure how they get the bone marrow from the donor, but I do know that Sal will receive the transplant through his PICC line, just like a blood transfusion.  Once he receives the transplant the doctors will observe to make sure he doesn’t have a reaction to the transplant.

Today, Sal will be readmitted to the hospital to recieve his third round of chemo, the consolidation phase.  This phase is to keep Sal in remission.  Leukemia usually comes back and to prevent this the doctors will continue to do consolidation chemo treatments until Sal receives the bone marrow transplant.

Sal will be at Kaiser Riverside on the same floor, but we are not sure what room yet….we did ask the nurses to reserve a room with a view this time :)   If you would like to visit Sal while he is in the hospital PLEASE call or text us prior to coming up.  Each round of chemo is different and we do not know how Sal will react to this round.

Thank you for your love and support during this time :)

 

July 29, 2012 Thank you!

We just wanted to say thank you to everyone that participated in the Storm Stadium fundraiser on Thursday night.  We had so much fun.  Sal really enjoyed seeing everyone there.  Again, we can’t believe the outpour of support that all of friends have shown us.

We would like to say thank you to the Riverside Sheriff’s Department, Storm Stadium and the city of Wildomar for organizing the fundraiser.

We will be updating the blog later this week.  Sal will be going to see the transplant doctor tomorrow.  We will be meeting with the doctor to see what Sal’s next step will be.  On Tuesday, Sal will be going back for a consolidation treatment at Kaiser in Riverside.  He will be in the hospital for approximately three weeks.  From our understanding, Sal will continue to recieve consolidation treatments until he receives a bone marrow transplant.

Thank you so much for your support!

 

July 15, 2012

Sal and I would like to say thank you to everyone that participated in the Zumbathon that was held at the Temecula Valley Fitness.  We really appreciate everyone’s support!  I know when I walked in and saw how many people were there to support our family I started crying.  I can’t believe how many people have supported us through this journey.  We have been blessed with great friends!

We would like to say a special thank you to Temecula Valley Fitness for allowing our friends the use of their facility to raise money for our family.

For some reason we can’t add the photo, so here is the link of a photo from yesterday’s event   Zumba Photo

July 12, 2012

We are happy to announce Sal was told he was in remission yesterday.  The doctor said he was really worried about the results, but was very pleased when he got them.  Sal has a appointment with the Bone Marrow doctor on the 30th of July for a consultation regarding transplant, after that he will be going back to the hospital on July 31st for another round of chemotharapy. He will be there for another three weeks. The first week will be Chemo followed by observation just as before.

His White Blood Cell count is still low it was only at 3.0, so we still have to be very cautious. He still has to wear a mask and cannot be around anyone that is sick. Still no fresh fruits and everything that he eats has to be cooked all the way through. We dont want to do anything that could get him sick in anyway.

This is what we have been waiting for. Thank you for all your love and support we could not have done it without you all. We still have a long road ahead of us and as Sal says “We are still in the fight”.

July 6, 2012

Sal is readjusting to home life….he can’t do too much so he is playing video games with Jacob.  I think Jacob has been beating him on  Battlefield 3 and Black Ops.

Sal is still adjusting to being home.  He wants to eat at the same times he did at the hospital and wants to know where his breakfast in bed is at.  We both still wake up at 5am for his blood draws (even though he doesn’t have them anymore) and then go back to sleep around 730, which is around the time the nurses would change over and he would be done eating his breakfast.

We appreciate our friends giving us this time to spend with the family.  We have really enjoyed having everyone under the same roof!  Once Sal is cleared and can be around a larger group of people we will definitely have everyone over for a BBQ or something :)

 

July 4, 2012

Happy Fourth of July!!

Day 1 – The Aguirre family will be enjoying a day of relaxing at home with the entire family :)  Much to our surprise the doctor decided to send Sal home yesterday afternoon. Sal said as a parting gift he had to provide the doctor with another bone marrow test. Sal was extremely excited to do another test.

The doctor said that Sal is still Neutropenic (not sure on the spelling) but he should be ok at home.  So he still can not be around fresh plants, flowers, fruits or vegetables.  We still do not know if he is in remission.  So far there are no blasts in his blood.  His white blood count is still at 2.0 but the doctor thought that he would be ok at home with his family.

The kids were so excited to see him.  On our way home we surprised Kiera at her volleyball practice.  She was so excited that she was crying, the coaches were crying too :)   Last year, Sal would take her to her practices and watch them.  While waiting for her practice to end, he would visit with a very sweet grandma named Maria.  Ever since summer camp last year she has become part of our family.  This year she bought Sal a tshirt that said Heritage Volleyball and told me that she missed seeing him at the practices and couldn’t wait until the day he would be back home.  Yesterday, we surprised Maria by bringing Sal in his new shirt and of course pajama pants….because we didn’t know he was coming home and I forgot he didn’t have any pants at the hospital.

When Sal came home, Cheyene and Jacob were so excited.  Cheyene kept saying how weird it was to see Dad at home.

We are very excited that Sal is home, but we are still nervous about the test results.  Sal has a doctor’s appointment next week to see the doctor and hopefully get some test results.  If he is in remission, Sal will have to do another round of chemo in about 3 weeks.  When he does this round of chemo, he will be in the hospital for approximately 3 weeks.  This will continue until we find out if he is able to get a bone marrow transplant.  During the next couple of weeks, we will be going to see the transplant doctor to see what Sal’s options are once he is in remission.

This is a very long and challenging journey.  We appreciate everything that everyone has done in the past two months.  We still have a lot that we will be challenged with, but we are hoping that it will include remission and a bone marrow transplant in the very near future.

During the next couple of days, we would like our friends and family to give us a little time to get readjusted.  Please call before you come over, we would like to limit the number of visitors expecially since Sal is not on any kind of antibiotics.  He still does not have enough white blood to fight off any type of infection.  If you are even slightly sick or even think you might be sick, please do not come by and visit.

When Sal is feeling better and up to his OLD self, he will try to see everyone.

Thank you everyone for your encouragement!!!

We would like to wish Madeleine and her family a safe drive home today.  Madeleine is a 17 year girl that we meet at the hospital.  She is from northern California and has had to come to Riverside Kaiser to receive a special treatment for the type of cancer she has.  She is a remarkable girl and is very blessed with a wonderful mom and aunt that have accompanied her during her treatments in Riverside.  We hope to see her the next time she is down.  Good luck Madeleine!

July 3, 2012

We are still waiting to see the doctor today, but we figured we would give everyone an update while we wait.

The doctor will be doing another bone marrow test, but we are not sure when.  He is still waiting for Sal’s counts to go up.  The Dr. said that his white blood count is going up slow and this isn’t a bad thing as long as there are no blasts or abnormal cells.

The doctor stated that we have come to a point where we need to make a decision on what the next step is going to be.  But we will not know what our options will be until the counts go up and we get the results from the bone marrow test that he will be doing.

Right now is a very stressful and scary moment, but we are still hanging in there and hoping for remission.

Sal’s counts for today

White Blood Count 2.0 (which was the same yesterday and it was 2.1 on 7/1/12)

Hemoglobin   9.1 (on 7/1 it was 8.8 and on 7/2 it was 8.7)

Platelets   91 (on 7/1 it was 68 and 7/2 it was 76)

His pottassium was a little low today so they had to give him some.  Since he has not been on an IV he doesn’t get the extra pottassium that was in his IV.