Thursday, February 28, 2013

Dear Friends, Family, and Everyone

Our Story

I’m writing this in a moment of complete desperation and also with hope that things will come together.  A week after celebrating our 1 year anniversary, my husband was diagnosed with acute lymphoblastic leukemia (ALL) at just 25 years old.  He had just finished a six month training program for his company and had worked only five days in his new official position.

Tom had been feeling really tired, dizzy, weak, and not himself.  He had been travelling for work, working on his final presentation, we had been house hunting to buy our first home, and there was so much going on that we just thought it was normal.  After a few weeks of this continuing, I made him go to the doctor who told us while it was unusual side effects for mono perhaps that was it.  He took some blood work just in case and wrote Tom off of work for a couple of days. Two days later, Tom received a phone call from the doctor instructing him to get to the emergency room straight away as his blood levels were beyond frightening.

I was on my way to orientation for a new job when Tom called me and said he needed to go to the hospital.  After five minutes of trying to figure out if this was a joke, I turned around.  Within two days we had the confirmation that he had Leukemia, July 25th 2012. Our entire world that seemed to finally be going somewhere with careers and a house… came to the biggest halt, word’s fail me to describe that moment.  The worst feeling to come, when I had to call his parents to confirm the suspected horrible news.  Little did we know what was ahead of us.

In short, the beginning looked promising.  The oncologist we were assigned felt highly confident in treating Tom, said he might be back at work, cancer free in February.  What actually occurred was that he couldn’t get Tom into remission.  Poor Tom did five rounds of very intense chemo, that also brought along various life threatening infections such as e. coli in the blood stream, chemical meningitis, VRE, and various neutropenic fevers.  November 5th, we received the news that Tom was still not in remission (when it was expected that the first round would achieve this and he’d done five).  It felt like we would never get there.  November 7th we were sent a different hospital where we met Dr. Carroll to talk about a bone marrow transplant, which can only be done once remission has been achieved.

Dr. Carroll achieved remission with a different chemo regimen the first time around.  This was the best feeling ever.  I’ll spare all of the in between details, but we’re happy to announce that after a few months, they found a bone marrow match for a donor and the date has been made for March 22nd.  The hospital has asked us to move closer, which we are doing for ease and Tom’s safety after the transplant.  Here’s the kicker. 

Because Tom had only begun his job in January (after graduating top in his class at CSU, Chico for the business college), he has now officially exhausted his state disability funds.  This was our main source of income, as I’ve been actually on a leave of absence for carpel tunnel so my worker’s comp checks (which were merely a fraction of Tom’s) are gone very soon.  In order for Tom to receive a transplant, he must have a 24/7 primary caregiver as well as backup caregivers just in case.  This means I cannot go back to work until he is stable enough to be on his own and we don’t know when that will be.  It could be a couple of months, could be six months, and if (God forbid) things just really don’t pan out well it could be a year, etc. 

We do not qualify for cash aid through the state and not being eligible to work immediately he does not qualify for unemployment. Due to only working six months after just graduating from college, he doesn’t qualify for social security disability, and due to being a permanent resident (not a citizen) he also isn’t allowed to draw on social security supplemental income.  We have virtually exhausted our options.  Seemingly we’ve found the only niche that no agency/organization can help. We do qualify for food stamps, but we need help to pay rent, gas to the hospital, electricity, etc.

This is really long and I do apologize about that, but we’re in need of some sincere help.  At 24 and now 26, we have no savings, no retirement to pull from, we have no house to sell, nothing.  It pains me to have to be at this point when only less than a year ago we were on top of the world, but we’re asking for the help of family, friends, strangers, anyone and everyone. If you could please help us out and pass this on, that would mean the world to us. Thank you, thank you, thank you… for helping to save my husband’s life.

To donate simply visit
-choose transfer, click on “send someone money”
-it will bring you to a page where you enter your email address and then mine: and enter your donation amount. Should be easy.  Thank you, thank you, thank you!!!!

If you are interested in all of the details of our journey thus far or would like to follow Tom’s story through his bone marrow transplant, you can follow us here!

 Day after our wedding July 2011
 The handsome devil at our wedding July 16, 2011
 Our visit with Kris December 2012
 First stay at Sutter General, wearing his "Decimate Leukemia" shirt designed by his brother Oliver
Fun photo from our honeymoon in Wales

Saturday, February 23, 2013

Home Stretch- Official Dates!!!

Ladies and Gentlemen, the moment we have all been waiting for has finally had a date determined!!!!!

March 22nd 

has been chosen by the donor for the transplant date!!!!!!!!!!!!!

We've finally come to the point of knowing when it will be!  The staff was really pushing for the donor to choose the fifteenth, but the 22nd was the earliest of the three original dates that had been suggested to the donor and as far as we know, the fifteenth wasn't put forth as a possibility until at least last week. But we have it!  

This means Tom will go in either the 12th or 15th she said depending on the pre-transplant chemo regimen the doctor chooses for Tom.  Apparently one of them is nine days long and then the transplant happens the next day and one is six or seven days long.  So, most of his testing is done apart from the marrow biopsy which was pending transplant date because to be considered valid, it must be done no more than a certain number of days before transplant. 

Back Up Caregivers:

If anyone (UK or US) would like to come stay with us for any period of time (preferably when Helen isn't available to be here due to room as well as so it's more helpful), they'd not only be very welcome, but super appreciated.  We aren't 100% sure what to expect as everyone's transplant is so different, but the hospital would like us to be "prepared for the worst and hoping for the best".  Having a "backup caregiver" would give me the opportunity to run errands or do whatever needs to get done (as he needs someone around... not necessarily conjoined to him, but with him 24/7), maybe running him to his appointment or walking Izzy... nothing too involved. So, this could be someone who wants to visit for a week, or someone who would like to just volunteer a day... anything. 
If you're interested, please let me know so maybe we could try to work out a schedule that would be as functional as possible in terms of people visiting. Our current plan consists of Helen coming out around the transplant time for a few weeks, when she's gone Louie and Kelly will be able to visit on the weekend to allow for errand running (thanks guys!!!), my mom says she can be a backup for if I get sick or if needed, but if anyone else is interested in hanging out with the big guy... I'm sure he wouldn't mind a break from me either. Email me if interested:


Some or most may know that we have been urged by the hospital to move closer for both ease of driving distance (since we will be doing the drive every day for a few months!!!) and also for Tom's safety if he should happen to spike a fever and need to get to the hospital (thinking of traffic and car time).  We have been having quite the search in the suggested Pocket Area of Sacramento, also known as Greenhaven we are told. 

We were originally running into the issue of Izzy being of a breed that's often restricted or being over 30 pounds. One nice property manager lady told us we should have her made a "companion dog" given Tom's status; Apparently a "companion" dog is much simpler than a "service" dog in the sense that it just requires a simple letter from a doctor or therapist stating that having the dog around would create a better healing environment... at least that's what our letter says haha. So, I am proud to announce that our nosy little furry nuisance is a "companion" dog.  It has made our search much easier and seemingly quite cheaper (as deposits apparently cannot be charged!). 

So we sort of have an idea and are just awaiting a phone call tomorrow, but we may have made up our minds on a place.  Hopefully we can get as much done as possible before Tom goes into the hospital (I'm sure he's looking forward to moving house and then doing possibly 5 weeks in the hospital!). 

Across the Pond News

Sounds like the pig race fundraiser was a successful and fun night!!! Thank you all who made it to take part, those who organized it (yes, I realize I spell both "organize" and "realize" differently, but I assure you in America I have spelled it correctly, haha), and thank you to everyone for all of their efforts in making the night fun and a success!  Also, thanks for letting us join you to watch our two pigs lose! I thought for SURE I would at least beat Tom, but I think my pig was dead last (suiting really).  IF anyone would be so kind as to email me  some photos of the event I would love to post them on a blog for everyone to see! Can't wait to hear all about the event via skype with Helen tomorrow! Again, many many thanks to you all!!!

Friday, February 15, 2013

Getting Ready for Transplant

Sorry, for the long gap, typing isn't the easiest with a bum hand.  Great news though, they have a match!!! They actually chose the male 9/10 match and here's why:

  • One, he's a 25 year old male so he's likely to be of more physical relation to Tom than the woman in her 50's (who was actually a 10/10) and apparently that can be of assistance.  
  • Secondly, the one marker that he didn't "match" is not actually an issue so long as it's the only marker that doesn't match, which it is. It's just a certain gene, that on it's own has shown to be of no importance, but combined with other non-matching markers it does become an issue and that's why they check it. 
  • Lastly (and possibly most importantly), the woman has actually donated before to someone, so she is now limited to only donating once. This means that if they were to have chosen her as the donor, if Tom were to relapse she would not be allowed to donate to him again... and they would have to then start this whole search over and chemo, etc. while Tom is at risk. She is however being kept on as the "backup" donor in case guy #1 backs out. 
Now that they've located a donor, the ball has really begun to roll.  Tom has already started his tests and whatnot to make sure that he is a suitable candidate health wise to do the transplant.  The dates that were originally projected (proposed to the donor to choose) were March 22nd, 29th, or April 5th. Tom would go in the week before the selected date for chemo to wipe out the marrow and then they most often do the transplant the day following the end of chemo, but if health issues arise they sometimes give a "breather" day. 

Because Tom will not have had chemo for nearly two months with those given dates, Dr. Carroll is actually pushing for it to be sooner.  He's worried that leaving it too long could risk Tom's current status of remission. Patti (the bone marrow transplant coordinator) at first told us that they didn't see that as possible, as the week before has four other transplants and the clinic might not even be able to handle processing that many stem cell samples for transplant, not to mention the transplant unit is only six rooms. Anyway, then yesterday we were told that the doctor is still pushing for it to be sooner so they had to move Tom's testing to be done by next week just in case.  So, if the donor okay's it... sounds like Tom may be in for the first or second week of March!

We haven't currently been approved to stay where we are, so we're being urged to move closer to the hospital.  We've been given mixed thoughts as to what the doctor may rule in the end, so we've started looking, but we shall see. 

I know this is long, but like I said, once the donor was chosen so much has happened so quickly!  We've been putting everything together, such as his needed "advanced directive" that outlines his wishes in the event he isn't in a state to communicate them himself (which actually had some rather comical suggestions), and our "at home" plan that must be shown and approved.  Apparently once home, he must have someone with him 24/7, literally they've informed me that I cannot even go to the grocery store and leave him alone. So not only do we have to let them know what our plan is for if I'm sick or who's going to relieve me while I do errands, they prefer to meet with these people as well to let them know what the "job" entails.  Tom and I have a sneaking suspicion that it may be just a bit less serious than what they make it out to be, but the social worker yesterday said they just want us to "plan for the worst, but hope for the best."  

So there you have it.  Over and Out. Hope you're all well!

Sunday, February 3, 2013

Possible Wonderful News

Before we get too excited, we haven't met with the doctor yet, but received some possible good news from one of his transplant coordinators!  We asked her the other day if there was any news on whether anyone had sent in their blood for further HLA typing (marrow typing), as when we left the hospital after Tom's last chemo round we were told no one had sent anything in.  Whether anyone would have responded would determine whether Tom would have to do another "maintenance" round of chemo or if he would get to just have an extra long break and then go in for pre-transplant chemo (where the marrow cannot bounce back).

Well, when we asked the nurse she said she hadn't gone to the meeting the previous week and she'd already signed out and was on her way out the door.  She then actually turned around and went and checked her emails to find some good news!  One of the three people had already submitted everything in, but was only a 9/10 on the matching and they want a 10/10.  She said they were only awaiting CT scans on the others!!! So fingers crossed we will here more on Thursday when he meets with Dr. Carroll and double fingers crossed it's that both people were perfect 10/10's!!!! The doctor likes to have at least 2 lined up in case the person backs out for whatever reason, which sadly does happen.

The Organization of the registry has some information regarding the typing process.  I thought I'd share a link to it if anyone was interested in knowing more or even joining the registry.  Be The Match Registry has a lot of information on all aspects of the bone marrow transplant process.

Aside from that, all of the blood he received last week did him well as he registered in at 10.0 for hemoglobin, 1.9 white blood cells, and 1.4 absolute neutrophils.  He did receive a bag of platelets as he was borderline at 21, but everything is going up and up and the shot he received to boost WBC production should be kicking in as well. So we only go to Sacramento on Thursday. :)

Quick Plugs:  A good week for news on our end, as well as the Giants had a smashing start to their season Saturday (Tom's rugby team to the US folks), and lastly the Super Bowl was an excellent game!  Thoughts and Prayers toward the remaining two being matches please and while you're doing that, throw in a good word for Tom's Granddad if you would. Thank You!!!!