Author: Katrina

Hi everyone!!!!  We finally have good news to report!  Craig is finally starting to recover from whatever it was that kicked his butt.  He is on his 20th day in the hospital, but was moved last night from the ICU onto his normal floor.  He is still pretty tired from not eating or moving much these last couple of weeks.  His greatest goals now are nutrition, physical movement, and getting those white cell counts up so he can get home!  Craig’s doctors feel he should still be able to have his transplant by September.

Judy and Brad were here since Saturday.  It was hard for them to see Craig so sick, but I am so glad they were able to see him improve after they arrived. We have begun filming a with an awesome gal for a documentary show called True Life.  Craig is hoping to raise Leukemia awareness and encourage anyone who watches to consider becoming a stem cell/bone marrow donor.  The show should air this winter, we will let you know for sure!

Until our next update,

We love you!

-Kat and Craig

Today is Day 10 of Craig’s hospital stay…and nothing has changed.

Last night he was moved to the Cardiac Intensive Care Unit so that he could be monitored more carefully.  He is still running fevers that have spiked as high as 103.4 degrees F.  He is still unable to take deep breaths or move much because of the pain in his lungs.  He administers his own pain meds with a special button he calls “his buddy.”  He rests pretty much all day, and is only alert for a handful of minutes each day.  Gary, Leah and I try to make him laugh or smile when we can.  Otherwise, Craig tells me he just wants to go home.

There are calm periods of time when all Gary and I can hear are the bubbling of Craig’s oxygen through its water filter and the clicking of the pumps that push his antibiotics.

Other times feel hectic when nurses are trying to make him comfortable while technicians wait to use their testing equipment and swarms of doctors surround the bed.  They poke and listen and ask rounds of questions that Craig tries his best to answer clearly.

Although there are no definite answers to what’s going on here, doctors do think that Craig’s blood counts will rise over the next few days and that should help his body work out some problems.  They are also concerned with his nutrition, since he hasn’t been eating more than a couple spoonfuls of cereal a day.  Craig’s nurse Ann has conducted some taste tests with nutritional drinks and it looks like Vanilla Carnation Instant Breakfast is the winner for now!  Yuummmmm (kind of).

I hope to have better news to report in the next few days.

Love you all,

Kat

Hi guys,

We brought Craig to the hospital on Friday the 3rd with a fever.  This is pretty a typical scenario during his neutropenic time after chemo.  Usually after tests and scans and cultures, the doctors don’t find much and just wait for his blood counts to return, his body to recovering on its own.

But this time ’round, they have found MRSA in his blood.  It’s a strain of bacteria that is really resistant to antibiotics and can be a pain the arse to get rid of when your immune system is compromised.  Craig will be on a strong antibiotic for at least a month, and will remain in the hospital for a couple of weeks.  Because the doctors want Craig to be free and clear of this well in advance, transplant could be delayed once again. Grrrr!

Right now Craig is still battling fever, a racing heart and chest pains.  I hope he won’t remember to much about this week- it’s a rough one.  I am currently in his room, waiting for him to return from surgery.  They are removing the port from his chest, as it may be a harbor for infection.  His low counts leave him breathless and weak, and they will likely take much longer than usual to return to normal because of the infection.

Please keep us in your thoughts while we fight off this dang MRSA and we will continue to think of all of you when we feel we are at our wits end!  We are DETERMINED to get through this!

Love and hope,

Kat

The transplant had been scheduled for early July but after the doctors have spoken they feel another round of consolidation chemo is a must before transplant. So that means the process will begin in 6 weeks (tentatively Aug. 4th).  The transplant will include 5 days of chemo and a day of full body radiation. Day ZERO will be the last day of the preparative treatment and the day of the transplant. Rick, my little brother, is going to be my half match donor.  On Day Zero they will put Rick asleep and harvest the marrow from his lower back.  Thanks, brother!

In the meantime, I will be staying at the OHSU for a week to receive another session of chemo to keep me in remission.  My mom is here now and my Dad, Rick and Gary will be joining us shortly to celebrate my birthday on the 25th.  I’m bummed I will be in the hospital for their visit, but family is the best medicine for me and I’ll take a dose of that anywhere.

Thanks to everyone who came/volunteered/dontated at the Dana Point marrow drive earlier this month!  Kat and I wish we could have been there to see everyone.  It is very exciting to think that someone from our community may have the chance to save a life!

-Craig

Craig began a second induction chemo a couple of days after our last post.  He received 5 days of the drugs, including 2 kinds of chemo he had not been on before.  We assumed it was going to be another month in the hospital just like the first round in November, but we were able to get home much sooner than we thought!  Because Craig’s body is still relatively healthy (aside from the Cutis) and not full of rapidly-multiplying Leukemia cells (like when he was diagnosed), the treatment did not affect him as intensely as it did in November.  He was discharged a few hours after his 5th day of treatment, granted he had no fever and would immediately return if he got one.

 

Gary came up from California the day after Craig got home.  He will be staying with us for this induction and through the transplant that will most likely follow.  We are so very lucky to have his support and company!  It is so hard to leave Craig for work when he is feeling sick, but it eases my heart to know that he is spending time with and being cared for by his brother.  Thank you Gary!

 

This week has been a busy one. Gary and Craig have been visiting doctors and clinics daily since Sunday.  Craig had his day 14 bone marrow biopsy on Monday, along with a spinal tap.  He has also had several blood and platelet transfusions, which is expected during this time.  Last night his fever spiked above the 100.5-degree rule, and we marched him right to the OHSU emergency room.  A re-admission to the Bone Marrow Transplant Unit was inevitable, and although there is no immediate threat of an infection, keeping him here until his counts are renewed is the typical protocol. Craig is already getting antibiotics and anti-fungals to help him ward off whatever might be causing his fever.  His counts should be back to normal in a week.  He is not happy about being back in the slammer, but it is definitely better to be safe!

 

We got some good news, however, while we were getting checked in today.  Results from the day 14 biopsy came in and the marrow is clear of Leukemia cells!  Horray! This means that  we were able to easily reach a second remission.  It also means that we will be moving into a transplant ASAP.  We have not spoken to the AML doctor or the transplant specialist since this news, but we already know that without a matching donor, we are looking at the riskier option of the mismatch or haplo transplant.

 

More info to come.

 

For now, we celebrate!!!

 

*******The City of Dana Point is sponsoring a Bone Marrow Drive in honor of Craig Brandmeier on Thursday June 11th from 12-8 at the Community Center on 34052 Del Obispo St. Dana Point, Ca.********

It’s hard for me to say it but yes, my leukemia has relapsed. Three weeks ago, I noticed some bumps on my chest, thinking nothing of it when we left for Hawaii. After we got back from our trip my doctors had the bumps biopsied. We got the test results yesterday and it is Leukemia Cutis, a manifestation of the disease in the skin, which usually precedes and full-blown systematic relapse.  It is very rare, as it is only found in about 3% of Leukemia patients. I will be undergoing another induction chemotherapy to get me back into remission, lasting 30 days, give or take a few. This will start on Monday the 18th. I will be at OHSU hospital this time so please keep the comments coming the love and the support helps tons! I will update more once I know what the game plan will be. Take care and think positive!

 

OHSU Hospital
3181 S.W. Sam Jackson Park Rd.
Portland, Oregon 97239-3098

 
What will I do, you ask?

 

I WILL BEAT THIS.

 

Also many thanks to everyone that showed up and or supported the relay for life, it was a great success!

Hi everyone, we have some big news. We met with my stem cell transplant doctor as well as a new transplant doctor, they are both working together to come up with a good plan for me. Well the first thing we found out is, i won’t find a donor for a full match stem cell transplant, reason being is my typing is so rare and they can tell based on statics. Please note that we still encourage everyone that can to become a donor – save a life. There are two transplant options that  they considered one is a mismatch donor someone that’s not 100% and also a haplo identical transplant which is one of my brothers who is a 50% match. The problem with both of these transplants is that they have a 50% chance of death from the transplant alone, this is due to a huge problem with host vs graft disease.

The doctors believe that i have about a 40-50% chance to just stay in remission forever, which is a lot higher then we originally thought. So right now what do we do? Well i am having another bone marrow biopsy in about two weeks, this biopsy if it shows a % of less then 1% residual disease (cancer) in my bone marrow that they suggest i don’t do anything and that we just go on with life and get checked a couple times a month. My last bone marrow biopsy before i started my consolidation chemo was .08% so i truly believe it will be zero. So that’s the news, we wait for the biopsy and go from there, i appreciate all the love and support and cards from everyone.

 

I WILL BEAT THIS.

 

Craig

Well, what can I say? Not much new on our end… The two potential donors that they had found both came back as temporarily unavailable, which is a big bummer (meaning they could be moving, sick, having a baby, etc). So they started the search process again last week (new donors are added daily) so we should hear something soon. So far, chemo has been very easy for me, the only hard part is my numbers get very low about a week and a half after the chemo, when I will have to go in for blood and platelets because I will get a bloody nose that won’t stop. I’ve met some great people in my chemo room and all the nurses have been amazing. I am very blessed that chemo is going well for me and that I don’t get sick like most of the people I have met. We only have one more round of chemo left, which will start around the beginning of April; after that we will be waiting for a donor. The reason they are only doing 4 rounds of chemo is that 4 is the ideal number- after this it’s either going to come back or not.  But because of the severity of my leukemia a transplant is needed no matter what.

 

Kat and I have decided to take a trip after I recover from my last chemo session, we will be heading to the Big Island of Hawaii for a week. This will be our honeymoon and time for us to relax and have a good time before we get involved in a transplant. Other news – my parents are organizing a donor drive with the City of Dana Point. If everything goes according to plan, we are hoping to register anywhere from 100-200 new donors to the database with the testing costs waived. So please stay in contact with my parents as well as checking the site for any updates, I believe its going to take place late April. Kat and I are also planning a donor drive here in Portland, I am trying to get Jamba Juice to try and help sponsor it, and Kat’s working on maybe having one at her mall where she works.

 

I just want to say thanks to everyone, all of you have been a blessing in my life. The support, comments, mail and phone calls have been amazing. I couldn’t ask for a better group of friends and family supporting me. The only thing I ask is that if you are healthy and willing – become a marow donor. Save my life or someone’s life, it’s the greatest gift you could give anyone. (www.marrow.org)

 

UPDATE WE GOT MARRIED ON 02/17/09 SEE PICS HERE http://www.midnightrev.com/pics

Craig is a hard match. That’s what we learned last week from the doctors. So far, out of all of the registries, national and international, there is only a single potential match- just one! Potential, as in, that one person will need further testing to see if it is 100%. We are eagerly waiting to see if there might be any news on this person in the next couple of weeks. In the meantime, our transplant coordinaters and searchers are still working on finding other matches. Keep your fingers crossed!

Many people have been asking us how they can be tested to see if they are a match for Craig. It is not exactly feasible for one person to be tested for a single person, unless they are a sibling or parent. It is very costly and very unlikely that it would be a match. The only option to help in this way is to register through the national donor program (check out marrow.org). A test kit costs about $50. It gets sent to you and all you have to do is a cheek swab, and send it back. Sometimes there are free testing sites at blood drives, where they waive the cost of the test kit.

By going through the national registry, you are not only broadening Craig’s search for a donor, but for so many others in similar situations. Right now he has ONE potential match. You may not be a match for Craig, but imagine if you were another person’s only match. You could very literally and directly save somone’s life by becoming a registered donor.

That may be too heavy of a favor to ask, we understand. If nothing else, check out a local blood drive to help us give back what we have used from the blood banks.
XOXO.

Hello everyone!
It’s been a while since we’ve posted an update. The truth is, there has not been too much craziness to report (I guess that’s a good thing). We have been eagerly waiting to hear if Craig’s brothers are potential donor matches. We finally found out yesterday that neither Gary or Rick is a match. Although we were a little bummed, we also knew the chances for one of them to be a match was only 25%.

And so, we move on…and we begin the process of searching the national registry. Once the search starts, we will know more about how challenging or easy it will be to find that special person! It all depends on how many potential matches there are. We’ll let you know as soon as we find out!

In the meantime, Craig is getting his chemo treatments this week. We are currently sitting in the hospital room, wishing we were watching American Idol, but the other patient sharing the room has reign over the remote!

We can’t say thank you enough to everyone for all your support and prayers.

Ttyl,
Kat and Craig