Thursday, December 26, 2013

Biopsy Results 12/16/13

Sorry if I've kept anyone waiting on edge.  Two weeks ago, Thursday (12/12,), we got Tom's biopsy results and he is leukemia free!!!!!

Because Tom did not get graft vs host disease as they intended with his dli (the stem cell top up they did Oct 30th following the week of chemo), they are nervous that this remission won't stick without some form of extra reinforcement.  So they did a second dli on 12/17/13 with double the cell dosage as last time. It went well and they sent him home.

So far he seems to be responding well, we're just waiting for the stem cells to mature and hope to see some graft vs host.

In the meantime, my sister Corinne and her family along with Kathy have moved back, we had Corinne and Madalynne visiting over the weekend, we had a really good Christmas with the Walshaws, Saturday we venture north for Christmas with the Mahutgas! We have had a busy household this last week with the Belleci girls (Corinne and Madalynne), Helen and David, Oliver and Jess, and Alex! Tom goes to the doctor's next on Tuesday but only for labs and a dressing change... Not quite sure when he actually sees Dr. Carroll again.

We hope everyone has had a fantastic Christmas! Thank you to those who've sent us cards and gifties, those of the edible variety have been demolished already.

May everyone have a wonderful and SAFE New Year's! I will do my best to keep this updated with his upcoming results, etc.

Wednesday, November 27, 2013

Giving Thanks 2013

Here we are again, it's time to bring out the draw string pants and the loose shirts, tuck in those bibs, and dig in!  Thanksgiving!!!!

Personally, this has always been a favorite holiday of mine.  Though typically, meat choice aside, Mom would do the same spread of sides for each holiday... I just always liked Thanksgiving.  Maybe it's because both parents tended to be present, maybe it's because it's full of desserts (a more likely reason), or maybe it's those amazing hand-turkey crafts you do in school. Whatever the reason, I always look forward to a slice of pumpkin pie and some green bean casserole.

Food and nostalgia aside, the most redeeming part of this holiday (to me) is the part where we all say what we are thankful for.  Now I know on facebook it's a popular thing in the month of November to write something each day, but I personally like to think about it through the month and really celebrate everything I'm thankful for on the day of Thanksgiving.  Last year I wrote a blog and this year I'm clearly doing the same. Keep in mind this is what I'm thankful for, I can't speak for Thomas (though clearly he would agree because it's so good).

My 2013 Thankful List:

This year, I am of course thankful for the fact that after five long weeks in the hospital, Tom was sent home Monday and will be able to join the family for the holiday in the comfort of home. Last year he was released the following day. 

I am SO incredibly grateful to be able to report that his counts are recovering really well now (they were a little slow in the start, but the doc seems pleased now).

I'm so thankful to have had Helen out here for the duration of all of this.  For those who don't know, she has actually changed her return flight home twice during this stay because Tom was having such a difficult time. My level of gratitude is not even possible to articulate.

I am very thankful for my mother who at the drop of a hat, changed her appointments and came down to spend the days with Tom because both Helen and I got sick and were banned. Thank you so much for being so selfless.

I am so happy to have a job that I love, that not only gives me Thanksgiving off to be with my family, but will also pay me for it.  I worked very hard for a long time to finally have something so good with such amazing and supportive coworkers who make meals for me to take to the hospital... I'm blessed.

I am thankful to even have a place to call home and be able to host Thanksgiving.  Not even 8 months ago we weren't sure how we were going to even make ends meet.  Which leads me to my next one...

I am (and I know this goes for Tom and our families) SO incredibly grateful for the sincerely amazing generosity of all of those who have helped us in this last year.  There are way too many names to list, so please take no offense and know that with our most heartfelt appreciation we absolutely thank every one for all of the love and support.  I was very quick to leave my hometown when I was younger, but I tear up every time I tell the story of how my home community was there when I needed them and most of them not even knowing Tom and some not even knowing me, came out and supported us and helped us make it for months. Thank you Leslie and Erin/Eric and the Mesker Family, my mom, and Sav Mor, for doing all that you did to make that fundraiser such a success! I can only hope that I can be generous enough in life to really deserve it.

And for those outside of my hometown, you are not forgotten either!  We had such an amazing sense of support rise up in the Santa Cruz area and we really have the Kirby Family to thank for that and for coming up with the idea to share our story and put it out there.  It took a lot and I felt so horrible and thought everyone would judge us, but I was also scared about how we would make it work if I didn't and we were just absolutely flabbergasted by the amount of sincere care and support we received.  And I have not forgot team East Coast!  I was just telling my mother how one silver lining is the amazing bond I've been able to make with family I didn't know so well previously.  And thank you to everyone who has ever sent us cards, notes, called, cheered us on, etc. We needed it and still do and we appreciate it so much!

While the situation we are in is one I would absolutely never wish on anyone, it has really made me see how many wonderful people there are and how loved we are and how much support we really do have. Now I'm at my desk with tears in my eyes as I'm writing this, but really thank you.

Lastly, while it may go without saying... I'll say it anyway.  I am so thankful to have a husband who continues to fight, no matter how hard it gets (and it's been hard), how many weeks sick, how scary possible outcomes could be... You always do it and you pull through and I am so grateful to have such a shining example of perseverance and courage. You're my hero.

To the business side of things, Tom should have a bone marrow biopsy soon (maybe a week or so) and that should tell us if this has worked or if we have to continue and do it again, etc. Please keep him in your prayers for good results.  Thank you, thank you, thank you.

Happy Thanksgiving to Everyone!!!!!

Monday, November 4, 2013

Catching Everyone Up... Apologies.

Sorry, it turns out that working full time is quite exhausting and with Tom being in the hospital I just didn't get around to the blog.  WARNING! It's LOOOONG as much has happened in the last few weeks! (Sorry!)

 Here's the scoop:

Tom went to the doctor's on October 21st (Monday) and was told that the previous plan hadn't worked as the leukemia had progressed and was now visible in his blood. They said he needed to come in the following day for treatment and so he did.  He did five days of chemo and then a DLI which is a donor leukocyte/lymphocyte infusion (stem cell top up ... basically a miniature version of his transplant, minus the fact that they don't have him on any anti-rejection meds so the risk is a bit higher).

He was in until last Wednesday (30th) and they released him that afternoon.  That night, his heart rate was about 160 and his blood pressure was all over the map... he went by ambulance to the ER (which I'd just like to point out that I beat the ambulance ... driving legally of course... by about five minutes).  ER didn't know what to tell him as he stabilized and so after about four hours spent in there, they told us to go home.

He had an appointment with the doctor the next morning and was told there that he was going back in.  Due to the ER trip and apparently the fact that typically they wouldn't have let someone leave with a white cell count of 0.0 (but did), they wanted to monitor him through what they expect to be full of fevers and possibly graft vs. host disease (what they're hoping for).  He's not expected to go home until his counts rebound.  Saturday night he had a minor fever, but not enough to warrant blood cultures and starting antibiotics (he went to 100.2 and they do that at 100.4).  Today he had a fever of 100.6 so he's got that fever they were expecting and is on meds.

So that's, in a nutshell, what Tom's been up to.  Since we've been in there have been a few "hiccups" if I were to put it mildly.  Number one, on Saturday October 26th they came in to give Tom some blood (as he was low) what they read aloud was unwashed A+ blood... Tom is undetermined due to his bone marrow transplant, so he requires washed blood so that he doesn't have any reaction and he's on his way to being O- ... so when I asked the nurses to re-read it and they repeated what I'd thought they had said, I asked if they would go double check it because it wasn't correct.  I was assured that it was correct and that in fact the doctor himself had written such orders.  I told them that there was no way that the doctor would have written that and politely (as much as you can be in such a situation) asked that they go call and recheck because they weren't hanging it until then.  Guess what?!  It turns out that he was supposed to get washed O-!!!!! So Thank GOD I had stopped them as Tom flat out said he didn't want to "cause any trouble" so he wouldn't say anything! 

So they apologized and then a few hours later he got the correct blood as it takes awhile to wash the blood, etc.  As if that wasn't enough to get them on their toes and investigate how that occurred.... Monday night (just two days later) it was sometime between 11pm and 1am (an inconvenient time is all that matters, really) and the charge nurse comes in and tells Tom, "Hey, sorry, but it turns out that unit of blood we just gave you ... was the wrong blood.  Your nurse was about to hang the second unit and noticed it was incorrect and called the lab and they confirmed."  Half asleep I said, "Did you just say you gave him the wrong blood?!"  OH MY GOODNESS!!!!!!  Luckily it was washed and it was at least O type... but they'd given him positive instead of negative (for those who don't know... positive can receive negative, but negative cannot receive positive).  But due to it being washed, those antigens were not present (so we're told) and luckily Tom had no reaction other than his hours of complaining that he felt really weird and out of it.  SO, we proceed to tell this guy about the mishap the two days prior and he assures us they'll do all they can to "investigate" this matter, we discussed the SIX TIERS of personnel that blood must go through before getting hung and how NONE of them caught it (total system failure)... he assured us we would be kept up to date on the "investigation", etc.

Did anyone mention this mishap in the morning? No. In fact, it was the following day that he had his DLI treatment and no one discussed with us whether it'd impact it, etc.  After the DLI a staff member came to discuss the incident with us and called it an "oversight".  That's as much as we've heard on the matter.  Blood rant over.

Since then, we have been making a list of things that just aren't jiving around here.  One being that when he came back in they put him in a room so small that it wouldn't fit the portable hepa filter (which we'd been told was a must for him) so they just didn't put one in!  When I brought it to the nurse's attention, they moved us into another room.  They have been all confused and weird about his medications; Some let us store food, others throw it out. Some let us warm food up, others tell us they can't. Some ask Tom to turn off his pushed medicines on the pump, others act as if we've committed a crime. They ask Tom his "ins and outs" and then don't record it, so his nurse reviewing his chart thoroughly asks why he hasn't been to the bathroom in three days or why he isn't eating (when neither of these things are the truth).  He had a medical assistant come in last night come in multiple times to stock everything in the room (lights on, things thumping around), change things out,  and then (icing on the cake) wake him up at 4 am and ask if he'd used the bathroom, why he hadn't used the bathroom, said she'd bring things over for him to use the bathroom, would bring him drinks so he'd use the bathroom, etc.  Finally Tom said, "I just want to sleep!!!!"  He then asked for his nurse and requested that between 10pm-7am unless it's nursing staff doing vitals or meds, no one is to enter and wake him.

Those last few paragraphs are only a couple of bullet points on the list of reasons why we may be seeking treatment elsewhere. I won't bore you with the rest of the details... if you're still reading. Just adding this in here after taking a million years to add the photos at the bottom.... they just took Tom's temperature 102 something so looks like we're in for a long night.

On a much lighter note... below are photos from the Cleveland Light the Night Walk in which my sisters, their friend, and Madalynne took part to support Tom.  Followed by photos of the Sacramento Light the Night Walk.  A GIGANTIC Thank YOU to all of those who participated or donated! You guys made it such a success! Even though Tom couldn't make it, he worked very hard on it and was featured as an honored hero, so it means a lot to us the support we received!!! Enjoy!!!

PS. I will do my best to keep the update more frequent while hospitalized in order to avoid such long updates. :) 

Cleveland fun/support:

Team Cleveland Group Photo, thanks guys!!!!

Cleveland Walk 

Isn't she just darling? 

Team Cleveland <3
Kathy, Madalynne, Corinne, and Antonia.
Sacramento Fun:
Tom with the IV Therapy nurse who placed his new PICC line
Oliver and Tom having an afternoon jam session
 David retrieved Tom's picket so we could have it
 Emily, Helen, and Lilyana
 Helen with the Tom sign :)
 Myself and Emily
 Teri and me
 Me with the picket sign... isn't he handsome?
 Sacramento Team Photo! (Scott you're definitely hiding in the back!)
 Lily being a trooper
Scott and Teri

Sunday, October 6, 2013

This Year's Light the Night Walk

SOOOOOO it's October!! Yes, that means that baseball season is coming to it's end.... but it also means that it's time for the Light the Night Walk, benefiting the Leukemia and Lymphoma Society!


Saturday, October 6th 
Raley Field
Tom will be an honored hero/volunteer which means we can all gawk and cheer him on!!!! YAY!  If you would like to sign up to be on our team and participate in the walk here or if you would like to help in fundraising for our team but won't be walking... please visit our Team Page and register!

Team Decimate

If you have a shirt from either the walk last year or from this year's fundraiser, please feel free to sport them!!! We won't be having any made.  If you don't have either of those, that's okay too... if it helps, the color for leukemia is orange!  You giants fans out there can sport some of your gear ;)

If you happen to not live in the area, but would love to take part in the walk.... here is the link to find a Light the Night Walk nearest you! (Thank you Corinne for asking that question.)

Light the Night Walk Near Me

While I'm listed as the "team captain" this walk has totally been a Tom project.  As I mentioned previously, he's been volunteering for months in which he's been putting things together for this event, he's an honored hero (which apparently means he'll be presented with something), and it'd be fantastic to just see everyone and cheer him on!  This has already been a bit of a trying month, so let's try to make it awesome! Please share and spread the word!!!!

If you'd just like to donate, you can donate to the "team" as a whole (in which it will evenly disperse across team members as collected donations) or you can choose a specific team member.
Perhaps it's cheating a bit, but below are links to mine and Tom's personal fundraising pages.

Tom's Page                                  Laura's Page

Thank you again to everyone! You've all been so incredibly amazing, loving, supportive, and just more than we could ever ask for this last year!!! I'm hoping that we'll get to see a lot of faces this year!  Since we're only about ten minutes from Raley Field, maybe we'll host a get together again this year!!!

That's all for now! Please keep Tom in your prayers as beginning this week the medicine they had him stop should be out of his system and the effects of inducing graft vs. host should start.  They'll be keeping a "close" eye on him, but we'd appreciate good thoughts and lots of prayers. 

Monday, September 30, 2013

Six Month Results

It has definitely been awhile since I've posted anything, apologies for that.  Truth be told, things were getting back to normal.  I started working, we'd been busy with weekend plans, Tom was entertaining a return to work, you get the picture.

Last Friday Tom had his six month post-transplant bone marrow biopsy- standard procedure for this time frame.  The biopsy would give us a glimpse at his percentage of donor cells and the outlook on his future of recovery. Today we got those results.

Following an uncomfortable silence and us both trying to control our anxiety, the doctor came in and proceeded with general small talk.  Asking us about the weekend, the reptile show that we went to, checking out Tom's back (he's been having some incredibly painful nerve problems the past four days, which consisted of a trip to the ER to waste four hours on Saturday), he continued on and then finally it was time to get down to business.

He said that Tom is at 99.08% of the donor's cells which for at this point in time is good even though that's a little lower than last time but he says it's still good. Then he told us that the bone marrow yielded some early leukemia cells. He said that because of the proteins on the cells he was able to discern that they were leukemia cells and that a lot of times those proteins aren't there and get mistaken for normal young cells, so I suppose at least it was caught early.  Dr. Carroll mentioned that it was less than 1% leukemia cells at this point and said he feels confident that it can be taken care of.

The Plan:

The plan is to take Tom off of his graft vs. host medicine and hope that his immune system (as the medicine suppresses the immune system) will act up and with a little graft vs. host, attack the remainder of leukemia cells. They will keep a close eye on Tom to make sure that the graft vs. host doesn't get out of hand and shut things down.  The doctor feels that while it may not be ideal, it may just be necessary to get this under control.  In about a month they'll do another biopsy to see where he stands and if it hasn't done the trick, it's more chemo and possibly more donor cells.

Tom as given a medication to help with the nerve spasms that he's having.  Both that medicine and the stopping of this graft vs. host meds shouldn't be noticeable for possibly a week.  He goes in again next week on Monday as well.

While this obviously is not the news we were hoping to hear, I guess it's the hand we're dealt.  On Sunday I went to the bone marrow transplant survivor picnic and saw people from the 90's stand up and give testaments to their treatment, saw Dr. Carroll's first Sacramento patient, and many others who all talked about the hard battles they've fought... some of them two and three time transplantees.  It was so inspiring to see the faith they've put in the doctor's and specifically in Dr. Carroll.  So here's to hoping for the best and trying not to feel back at square one.

Friday, August 23, 2013

Long Overdue Update 082313

Well we've been busy bees I suppose!  Tom has been doing really well, he finished his treatments and his back recovered well.  A couple weeks ago he had his weekly appointment and was told he could go three weeks until seeing the doctor again, so we'll see what kind of results that yields this coming Wednesday.  Fingers crossed for good ones!

To fill his time he's begun volunteering at the local Leukemia and Lymphoma Society.  As mentioned before, Tom is one of the honored heroes this year for their big fundraising walk in October, Light the Night.  Since he began volunteering he's also been asked to be the volunteer coordinator!!!  So mark your calendars for October 26th and join us at the walk!!!! You can join our team or donate to our team at the following link: Team Decimate.  We know so many of you helped us throughout this last year and so please don't feel pressured to donate.  Also there are many other ways to partake such as joining us for the walk or passing on the link to others!

Last year we had shirts made which you can feel free to wear again this year (one of the reasons we decided to keep the same team name) and we also had a bbq before hand. Or please feel free to wear your Team Tom shirts!!!!  This year I'd really like to get everyone there for the pre-festivities and to see Tom in his role as honored hero.  I'm hoping we can get as many people registered and involved as possible and really celebrate Tom and what he's conquered this year! A month later is his remission anniversary so perhaps we could celebrate that the same day.

So that's what Tom's been up to, that and keeping the house in order, cooking delicious meals, taking care of Izzy... doing his best to keep busy.  I've just been working.  The last blog posted I hadn't started my new job, but now it's been over a month and I'm loving it!  It's fantastic to be in such a supportive environment and doing something in my field (child development). 

Fun things we've been up to: We went to Santa Cruz last weekend to meet up with Hannah and Michael (Tom's cousin and her husband) who were out on their honeymoon from England.  Tomorrow we're going clay pigeon shooting (my first time... I'll be sure to post photos), I participated in the Color Run Sacramento 5k with Alyse and that was a lot of fun! Can't wait to do that next year! We have some company coming out this coming week!  Helen and David will be arriving next week and after picking up David we're off to San Luis Obispo for the three day weekend (my b-day weekend) to see Oliver and Jess! So we're excited about that!  The following weekend Tom is actually in a wedding!!! We'll be off to San Francisco area where Tom is a groomsman in Bo and Jamie's wedding! 

As you can see, it's been a bit busy and luckily easy going for Tom so I apologize to those who wait and follow the blog, I've been a neglectful poster.

Hope everyone else is doing really well!!!! :)

Friday, July 12, 2013

As the Year Mark Soon Approaches 07.12.13

Hey all!

So today is the 12th of July which means we have a few big dates fast approaching.  Number one, our second wedding anniversary is next week (the 16th)! The week after is Tom's 1 year mark from being diagnosed with leukemia (the 25th).  Oddly enough, that is also the day he has scheduled his last chemo treatment!!!!!!!  His intrathecal (spinal tap) chemos have been wreaking havoc for him in terms of headaches and nausea, so it'll be sort of the perfect day to wrap everything up and be done!

It's been one heck of a year for sure but we have a lot to be grateful for many many many THANKS to EVERYONE for the love and support and continual prayers, the care packages, the donations, the phone calls, cards, everything... THANK YOU!!!!!  It feels like it's been a decade of a journey and at the same time a flash before the eyes. Tom is doing so well and the doctor still seems pleased with him.  Again, apparently the six month mark is the big one for Tom to get past, but all is anticipated to go smoothly (knock on wood).

So what else are we up to?  Well Tom is hoping to start volunteering for the Leukemia and Lymphoma Society and assist with the Light the Night fundraiser that he's one of the honored heroes of this year. That said, expect to be hearing more about that as the event nears in October.  He's also taken to doing a lot of cooking/baking inspired by Gordon Ramsay so as part of his anniversary gift I got him a couple of the Chef's cookbooks.  Okay, you may have seen through my plan!  I'll be also benefiting greatly in this new found hobby when I come home from a day of work to a Ramsay inspired dinner. That's right, home from work, I've got a job!!!! 

I've officially resigned from Starbucks and in an odd turn of events this week (of which I won't bore you with the details) I went to an interview and came away with a different job entirely, but a winner!  I was (not sure if I mentioned this or not but just in case I did) going to start a job as an in-home therapist for children with autism this coming Monday.  Well, that job was very part-time, nights and weekend hours, unpredictable hours and money, etc. but could have evolved into something.  Wednesday's interview ended up in an offer for a position that's full time m-f, 8-5 sort of thing, benefits, etc. It's doing pretty much what I did as an intern in Chico so I'll be comfortable in doing it.  I'll be working with in-home daycare providers to better the care, etc. I'll spare you the boring details.  So that's what I've ended up with.  Monday I have orientation and Tuesday I start!

In other more delightful and fun news, we got to have a visit with Alyse and baby Quinn today!  We met up for a coffee date/tasting like old times at Starbucks.

 We're making sure she understands coffee tasting basics early on! 
She was giving Tom a run for his money in strength!
The Cool Kids

Team UK

The 19th of this month is the Endurance Cycle Race and I'm told volunteers to cycle are still needed. Click here for details on the event and whom to contact if interested.
Unit 27, Kingsgate CentreHD1 2QB Huddersfield  

Time: Starting July 19th at 9am and going until July 20th at 2:00am so check your calendars! 
Part of the funds raised will also be benefiting the children's leukemia fund as well. 

So that's it in a nutshell!!! We're doing well over here and things seem to finally be making their way slowly back to normality! 
Hope everyone is enjoying their summer!

Tuesday, June 25, 2013

Update 06/25

Apologies for the lack of any kind of clever or helpful title.  Tom's hanging in there. He just had his 2nd of 5 intrathecal chemos yesterday.  It was definitely a doozie.  They should take about a half hour if they go superbly well and this one took about an hour and a half.  On top of that they also had him stay in an unused xray room laying flat for about 20 minutes (whereas last week they allowed him to walk out and go home) so it must have been rough.  He said they were just poking around constantly, sounds horrifying.  Needless to say, he's ended up with the excruciating intrathecal headaches to go along with it which leave him a bit laid up.

On the other hand, the doctor said everything was looking a-okay for Tom on Monday.  He told Tom that if he keeps it up then the six month marker being a big one should look good.  He said Tom might even be allowed to travel in three-six months time!  So that was exciting news.  Seems very pleased with him.  Apparently the six month post transplant is a big marking point as right now they'll be watching him closely for chronic graft vs. host as opposed to the acute graft vs. host.  Tom is doing very well though, he's definitely in the top of his "class if you will" along with another couple of people. I wish we could say the majority, but there have been some rather upsetting cases along the way.

The lady I had mentioned I'm sure in previous blogs who came along and sort of smashed everyone's records in terms of getting out of the hospital fastest, I may have also mentioned that she was experiencing some neuropathy (paralysis)... Well, apparently after it (the neuropathy) had consumed her entire body and has now also left her without her sight, she's been to UCSF and they've also concluded that it must just be from some of the meds that were used (so "luck" of the draw really) and they're just hoping it's temporary and will cycle through.  She is currently hospitalized.  Keep her in your thoughts.  The nurses told us they had another patient have that last year and he's just come around having regained it back and is doing therapy, etc. So hopefully it will do what they said and just cycle through for her.  Poor thing.

On a brighter note, tomorrow evening we're going out for a meal with Tom's "birthday twin" (the elder lady who got her bone marrow transplant the same day as Tom).  She's also doing remarkably well and will be soon going back home to Modesto (yay for her!!!), but her daughter who's been staying here in Sacramento with her as her caretaker will be going home (to Modesto as well) on Thursday when the other daughter/grandson arrive to take over.  So we wanted to get in a little celebration dinner to celebrate the two of them as we've grown close with them over this journey.  They're so wonderful! She's in her late 70's and she is just full of life and they're such a joy to see in the infusion center.

I think that's basically it for us around here. Things are going well and we're both kind of getting back into the swing of things. Hopefully in the next couple of weeks I'll be able to make an official job announcement on my part.  Tom is also looking to volunteer with the leukemia and lymphoma society so we'll see what comes of that.  Though nearly half way over, this year still seems to hold a lot of opportunity!

Have a marvelous rest of the week!

Tuesday, June 11, 2013

Fun Happenings and Relieving News

Hey everyone!!!

Too Much Fun!

So we've had a super busy couple of weeks!  We had Will out here visiting which was super fun!  Oliver and Jess were up for a few days as well and Alex and his friend graced us with their presence for an evening... so grateful to have company while we awaited Tom's results! :)  Will and Tom watched a lot of rugby and Cops.

This weekend, in particular, has been super busy! Friday was Brian's (my youngest brother/sibling) high school graduation!!!!
 Brian, myself, Grandma Peg, and Daniel.
 Daniel, my Dad, Brian, myself, Mom, and Grandma.
Dad, Daniel, Brian, and Tom.
Saturday Tom requested that we do breakfast at his favorite buffet around, Rolling Hills Casino.  After stuffing ourselves with an incredible amount of food, we had a quick round to check out the car show they also had going on.  We then hit the road to get home (as it was very hot... about 110F) and Tom needed to get a dressing change as he'd sweated it off!
That afternoon I joined Ashley and Alyse for a girl's date in which I was surprised with the plans! Here's a quick look of what we did! We were pretty much the stars of the class!
 Myself and my painting of Izzy.
Alyse with her painting of her dog Chewy, myself and Izzy, Ashley and her painting of Rosco!! Thanks girls!!!
Also that evening we were joined by Joe and Natalie from Jackson for dinner and some hilarious Cards Against Humanity in which I'm sure I could be rich if I had a dollar for every time Natalie exclaimed "There's something wrong with your wife!" to Tom (I swear Natalie, it was just the cards I drew... the real culprit is the person who picked them haha). Good times.
Sunday we met up for breakfast with Alyse, Clayton, Quinn (their adorable baby girl), and Ashley.  It was fantastic! While Tom was most certainly out of his element (I think it was a bit too "hippie" for him... with the one man flute band and all) and I think I may have purchased the most expensive coffee I've ever come across... we had a wonderful time.
We later joined Louie and Kelly over at their house who we haven't seen for ages and had dinner. Woo! Seriously! That is our weekend in a wrap! No wonder we were both so tired yesterday!
Not to do with our weekend, but for some fun... Team East Coast sent me some photos of them sporting the Team Tom shirts at a family get together (Doug's Retirement)!  I love it! So I definitely had to share and thought maybe other's might want to share theirs and it could be a fun little blog segment. Team Tom travels :) Note that they are sporting both flags! ;)

 So we have Linda, Linda and Michael, and Fred :)
Sitting in front are:  Nicholas (Jack's grandson/Doug's son), Jack, Cynthia, Evelyn (Cynthia's mother age 92), Lauren (Doug's daughter) and Pam (Doug's wife).  Back row wearing our team Tom shirts are:  Fred and Linda, Doug, Linda and Mike.
Thanks again to Aunt Linda for sharing photos with us! We always enjoy seeing them!  These were too good to of course not share with everyone else!!!
If anyone else wants to share photos sporting their shirts, please don't be shy and email them to me! I think it'd be super fun! Decimate Leukemia shirts (from last year's LLS walk) totally count too!!!
Lastly, given that it's out there now... we're also super excited to congratulate my sister (Corinne) and brother-in-law Mat on expecting their second child!!!! :)
Whew! I think that's a wrap on that!!!!


Now... for the Tom news!!!!

Tom's biopsy results came in yesterday! The doctor was worried about Tom's dip in counts and had Tom do an impromptu bone marrow biopsy to check for a possible return of leukemia or graft vs. host disease.  Much to our relief/surprise it came back fully clear!!!!!  Tom's marrow shows that he's at 99.83% the donor's cells.  With his counts starting to make their way back up they've speculated that maybe he just had an undetected infection that his body fought off ... but everything is good! 
Tom's hair is coming back in... he's almost got a full beard and his eyebrows/lashes back.  The rest of his hair is a bit slower in coming back in, but it's definitely on it's way!  He's starting the first of five intrathecal chemo's (spinal tap chemos) on Monday.  This will be once a week for five weeks unless they cause his counts to dip (which they can do and is normal), in which case they will have him go every other week for them.  This is just a precautionary thing to make sure that no leukemia has hidden out in the CNS and that if there is they get it. After these, as far as I understand he will be officially done with chemo treatments (party worthy?).
Happy Father's Day to those father's out there! Have a wonderful week everyone!

Wednesday, May 29, 2013

Tom's results today 05/29/13

So the good news was that Tom had been officially moved to one day a week (though he's so far only enjoyed that for two weeks).  His numbers were on the lower side last week as far as white blood count goes but no one seemed too concerned as apparently they can just go up and down and they weren't low enough to warrant a booster shot. 

Today Tom went in for his usual appointment (labs, dressing change, and saying hello to the doc), his labs came back with an even lower count (absolute neutrophil count of 0.2) and while the doc said he could still go about things... he's postponed Tom's five intrathecal chemo's (spinal tap chemos) until he can figure out why his numbers are so low.  The intrathecal chemo can also cause one's numbers to drop so they don't want to start that until they get to the bottom of it all.  The doctor has instead scheduled Tom to go in for a bone marrow biopsy this Friday as he's afraid that the leukemia could be back and be the culprit or that Tom may have chronic graft vs. host disease. 

So hopefully things go well, they told us this was a possibility it's just one of those hurdle zones that this tends to pop up for people and just a high probability of it so think positive and let's hope and pray it all works out.

Rastrick Reunion Photos and Tom's "Surprise"

Thank you so much to everyone who made the UK Class Reunion a success!!! I am told it was quite a lot of fun and the photos that I've stolen via Rachel's post on the facebook page (thank you!).  If you have facebook and are part of the Tom Walshaw Medical Fund group chances are you've already seen these, but for those who haven't... enjoy!

ps. Will would like me to remind everyone that the "go get funding" page is still open!

As far as Tom's "surprise" went, last night Will arrived via Joe's chauffeuring to startle Tom at about 10:15pm!!! His response I believe was, "what are you doing here?!" Also Oliver and Jess arrived yesterday and are here for a few days and Alex is on his way up today as well... and Joe will be meeting back up with us this evening for an evening at the drag races.  =)

Monday, May 13, 2013

Good News Galore

To start, let us begin with Tom's health.  He's been doing really well.  Counts seem to be pretty good, the doctor is really pleased with him.  Tom has successfully driven to Salinas and back last week as well as Jackson and back on Saturday.  Granted he was rather exhausted the following days, but that's a long haul.  He's not feeling constantly nauseas though from time to time he does experience it, but it's just one of those things.

He was allowed from every day doctor's visits down to twice a week visits (Monday and Thursday) for the last two weeks.  They've also been lowering his dosage of anti rejection meds (which is partially responsible for his lower magnesium levels) so with his magnesium levels doing better with him taking them at home, plus his overall wellness, the doctor says that he may be able to cut down to one visit per week! We find out on Thursday.

I should clarify that the following sentence is not categorized as "good news" per say:
Uncle Philip will be leaving us on Thursday and will be replaced by David who is arriving Friday for a four day weekend (though by "replace" we don't mean replaced of course).  Tonight he'll be making dinner, garlic mashed potatoes and sirloin is what I'm told is on the menu. A little jealousy is encouraged.

It's been nearly 90 degrees almost all week and I think I was actually 90 yesterday.  It's to be in the mid-high 80s all week... might make Tom not so sad about being stuck indoors (in air conditioning).

A large thank you and appreciation goes out to the runners of the Leeds half marathon (if I have the title of the event wrong, blame Tom).  Will Goodrum, Michael Whitwam, and Jonny Henshaw you guys are amazing! Also to Auntie Marcia and the Brighouse Echo for the article in the paper about Tom and the UK Medical Fund's School Reunion event this coming Friday (May 17th).

Next on the list of good news:

Tom had purchased a "long term disability insurance" plan when he was obviously employed.  Of which we'd been receiving $100 a month.  Well I contacted them when our ship was sinking and after some digging, they are now going to be covering what the State Disability was doing going forward. Hooray! So while we were recently denied IHO and IHSS assistance... something came through to take the weight of worry off of our shoulders!

That said, from the absolute bottom of our hearts, we wanted to say thank you though we sincerely cannot thank everyone enough for the incredible love and support that we've had.  Truly we are so incredibly grateful for the outpour of love and support we had through what could have easily been incredibly devastating and difficult, but we have everyone to thank for keeping us going and afloat. Thank you, thank you, thank you!!!! Please know that it has been a most humbling experience and in the future should anyone know anyone in a similar situation, please let us know as we will always do what we can to help because if it weren't for so many people giving to us, I truly don't know what would have happened.  Our eternal gratitude to you all! Please pass on the memo to anyone you may know who doesn't particularly follow our blog but may have attended our fundraiser or thrown in a donation.

Well, that's it for now!!! On those happy notes ... I shall leave you to the rest of your week! :)

-Tom and Laura

Wednesday, May 1, 2013

Good News :)

Happy May Day!!! Three years ago today Tom asked me to marry him! Doesn't seem that long ago. Anyway, I won't bore anyone with that.

Monday we had wonderful news! Tom had a bone marrow biopsy last Tuesday and the results were in... NO leukemia and he was at 99.77% the donor's cells vs. his own (they were hoping for at least 98% so he's doing well!).  The doctor said that while it's "still a bit early" he's "very pleased" with his progress this far.

Tom's virus has cleared up and he was given two days off last week to see how he'd respond with now taking magnesium in tablet form at home (instead of solely IV in the infusion center).  Monday he was also given Tuesday/Wednesday off.  We're hoping he'll be given Fri-Sun off too but that will all depend on tomorrow's labs I suppose. Tom would probably enjoy his days off much more if he were able to go outside, but he can't be in sunlight for an entire year due to his anti-rejection meds creating heightened sensitivity/skin cancer risk. 

Tom's Uncle Philip arrived safely last week and has been greeted by some rather hot weather for April (it's been in the 90's some days!!!!) luckily we've got some wind to help out a bit too.  Izzy is especially enjoying the sun though, attempting to spend nearly all of her time on the patio.

Saturday we snuck off for a drive with Kris and what an adventure that was (we'll leave it there, eh Kris?).  It was nice to get out and probably more so for Tom as I can sort of go where I please and didn't spend a month in the hospital.  Many thanks! This weekend we have some visitors, my mom on Friday and Teri on Sunday! We got to visit with Louie and Kelly last night after what seemed a forever.

In terms of Tom's condition he's doing rather well.  In the last week he's begun eating more normally and his color and energy is looking much better.  We've managed to taper him off of all of the round the clock nausea meds which is a good sign and he's a regular sassafras which always means he's feeling good!

Hope this blog finds everyone well!!

Wednesday, April 17, 2013

Our First Week at Home

Hello Everyone!

Today marks a week of being at home! I sure don't feel like I've been home for a week, rather tired actually... but then again, so is Tom. It's been a week full of a lot of balance in the sense of for every good thing there seemed to be a trade off.  For example, Tom's counts were doing so well, but the list of ailments he's encountered in just the last seven days is quite astonishing.

Speaking of counts, I find that I'm often rejoicing or sharing the current standings of them, but perhaps no one knows what they mean.  That said, brace yourselves as I'm about to elaborate.
The top number is the White Blood Cell (WBC) Count the column immediately after each named item shows the "normal" range for each item.  The third column shows his previous lab draws number and the farthest right column shows the most recent (current day's) lab numbers.  So, white blood cells, if you remember from previous blogs Tom was at 0.0 for a few days while in the hospital.  This sheet shows him at 8.0 on April 14th. 
When I refer to Tom being "neutropenic" it means that his WBC is less than 2.0.  To paint the picture a bit more, the amount of chemo Tom had done between July and his transplant time, took such a toll that when he first started chemo in July he would bounce back out of neutropenia and into "normal" numbers in a matter of a couple of weeks.  Since probably November, Tom has not been in the "normal" range at all.  Definitely since December onward he was considered neutropenic.  Now, usually they will give shots called "neupogen" to stimulate the production of white blood cells for normal chemo patients.  They do not do this for bone marrow transplant patients however, because they want to see your marrow responding on it's own by producing the new persons cells without intervention... this displays engraftment which means the new persons cells are taking.  So, to say that Tom has been less than 2.0 for a matter of months and then after having a transplant he was up at 8.0 without intervention (such as neupogen shots) is seriously remarkable. 
The kicker with these numbers:  Yes, it is completely amazing to see such a come back and the doctor says that Tom's own marrow was so shot from all of the chemo that there is no way that the cells being reproduced are that of his own which shows engraftment of the other guy's cells... but now we must be careful on a different level.  Before we would have to take "neutropenic precautions" which meant that when Tom's numbers were simply low (below 2.0 wbc) he would need to use a mask, not be around young children, no sick people, and avoid certain foods. Now Tom is not neutropenic but he is immune-compromised. This means that while he has "normal numbers" those white blood cells aren't like yours or mine.  His cells are comparable to a new born baby's, but even more susceptible because a new born baby at least carries mom's immunity for a given period of time. 
Tom's white blood cells have absolutely zero built up immunity or immunization related immunity. To boot, his anti-rejection meds work because they too are an immune-suppressant to keep his old system from attacking the new cells. This means that he is susceptible to anything and everything as his body will not have any recognition.  Things like chickenpox, mumps, rubella, pneumonia, flu, etc... total possible killers now.  His cells are not mature enough to receive vaccinations and vaccinations will not begin until 12 months post transplant. 
What does this mean? Well, for starters, Tom is not allowed around children (sorry all of you new mommies and daddies!).  For patients who do have children it is recommended they pull them out of school for the year to minimize carrier-contamination and for those without, they're told to avoid them.  He will not be allowed around anyone who has recently been sick or immunized for anything within 5 days.  He is to avoid large crowds and be cautious in what he eats (ie. freshly prepared food rather than heat lamped Mc Donalds).  Izzy is also having to keep her distance and Tom to be washing his hands after any contact with her.
So there's that. He is under constant watch for risk of infection... so while the numbers are great, they aren't the only factor into his immunity.  In a year he will begin to be immunized and will eventually be good to go again, though he will never have the immune system he once did as his new immune system will always be someone else's and not 100% compatible so to speak. That's the white blood cell count everyone! The rest is pretty straight forward.
Second, they look at his "hemoglobin" which is just regular old red blood.  They want his body to be producing it on it's own and so far it has! They give him blood transfusions when he reaches 8.5 or lower and he has not needed one since before leaving the hospital! He also has not quite made it to the "normal" range yet, but he's getting pretty close!
Platelets: the clotting factor.  These are definitely important though they don't actually do a transfusion unless he's at 20 or lower.  So a much lower transfusion level comparatively, but still a very important thing to factor in because it can put him at risk for internal bleeding, bruising, or general bleeding if he were to cut himself and not have enough platelets to clot.
Lastly, they monitor potassium levels (which they just adjust with pills) and magnesium (which they will do an IV infusion).  These levels (especially magnesium) will frequently be low because not only will chemo cause that (and he's still dealing with after effects of chemo), but also the gen-graf (his anti-rejection meds) tend to burn up the magnesium.  So currently Tom has been receiving a bag of magnesium daily.
So there's your tutorial everyone! You're all professionals now and when someone else mentions it you'll totally know what they're talking about!
How's Tom? warning, this next bit is a little detailed ... if queasy... don't read!
Tom is happy to be home, but as I said... it's been one rough week.  First we had the general issue of him being nocturnal from the hospital and the overnight interruptions.  He came home with some remnants of strep throat and when he would cough it would sometimes cause him to vomit randomly having had no preemptive nausea.  The day after coming home he started with dry eyes (dry eyes and skin are normal, but he hadn't experienced them in the hospital)... his eyes were so incredibly dry that he was having to use the drops something awful in frequency.  The skin all around his eyes was red and his eyes were so blood shot- honestly, it made you hurt looking at him.  If that wasn't enough, it began to go away and then he was super sick to his stomach and they thought he might have C. Diff (a bowel infection often caused by taking antibiotics... like he was for the strep throat), luckily that came back negative (as we actually know of a guy who just spent 1 1/2-2 months in the hospital with a really bad case of C. Diff and colitis). So that went away, but Tom was still vomiting without warning.  We finally think we may have got a hold on that via medications around the clock as he's been vomit free for 48 hours now. Hooray!  However, he may possibly now have a virus of the bladder! Results will hopefully be back in tomorrow.  So he's in extreme discomfort. Seriously, look at this overly long paragraph and all of this was in the last seven days!!!!
So, long nights... tiring days. That said, it's time I go give him his last round of meds for the day and hit the hay myself. Sadly, Helen left today.  This last week that we had time to spend at home with her went by way too quickly.  On a brighter note, her brother will be arriving late Tuesday night to take her place for a few weeks!
Sorry for the long blog, but as the counts are constantly mentioned, I thought people may want to know what the heck I'm talking about!  Also, there's just so much we're finding out now that it really is just a new beginning with new challenges... it didn't all end on March 22nd (and thank God for that!), but rather a new start. Tomorrow we meet with Dr. Carroll, keep you all posted so these things aren't so long!
Lastly, I tell everyone about our ducks that live around the lake at our new apartments.  The two we are most fond of we call "Mr. & Mrs." as they are two younger ducks and are always together!  They waddle along quacking in what I imagine is duck conversation... Mister is quite chatty!  Misses is a lady of few quacks.  Today, just before we had to take Helen to the airport, they paid a visit to our porch for a bit and I was able to snap some photos!  Later this evening they came back by too and were clearly looking for some snacks. Just to put a little smile on your face :)
Good Night!!!!

Friday, April 12, 2013

The Rumors are True... He's Home!

I suppose it might be a good detail to share with the world of non-facebookers (which I am most definitely sure is now a legitimate phrase), but Tom did in fact make it home for Wednesday!  He was actually home about lunch time, which by hospital standards is amazing. 

Monday he had been given the news that it might actually be Thursday or Friday, which was quite the let down for Tom.  I'm not sure that I've mentioned it before, but a guy that he knows via his job at Pool Corp (a customer) who ended up being diagnosed with AML received his transplant a couple of weeks prior to Tom and was discharged a few days into Tom having arrived.  Well, this guy had done extremely well in terms of not having any fevers, reactions, infections, etc...and made it out at Day +19.  Well this guy's "record" (as it were) was quite the talk on the ward.  Not only did Tom want to beat it, but so did an elderly gentleman who was also in prior to Tom (a real firecracker this guy).  Well, the elder guy got out on day +20... which left Tom in the running to beat the record.  This meant that when Tom was told on Monday (Day +17) that he might not be out until Thursday (+20) or Friday (+21)... well, it wasn't so good and I'll leave it at that. 

Tuesday came around and words were spoken that Wednesday might be possible again.  Tom actually had the nurse show him the evidence that the following day was a planned discharge.  All day Tuesday he was charting the foods he was eating (as there was a bit of a conspiracy theory going on that the nurses wouldn't necessarily record all of the foods he was eating as he ate from home, rather than hospital mush so it looked like he had taken the anorexia route).  Tom was really working it at all angles.  Wednesday morning the doctor came in and Tom said, "what's the plan?" to which the doctor said, "for you to go home" (in a puzzled way) and Tom simply replied, "Good. Just checking." 

So there you have it... we made it home.  Tom's been extremely tired, he's also been battling the cough from the strep throat a bit and some random (non-nausea prompted) vomiting the first day or so.  Lastly, he's got incredibly painful dry eyes that have been really making it hard for him.  We got an ointment today that hopefully does the trick because the plain eye drops just weren't cutting it. Other than that, his counts are looking good.  Things are going up, but his cells are still young cells so he's still very susceptible to infection and must take precautions (masks, neutropenic diet, no crowds, etc). He's so happy to be home though and we are of course very happy to have him home.  He's still doing the every morning trip into the infusion center for lab draws to check levels of basic chems and anti-rejection med levels.  Hopefully with the way things are going they'll begin to taper him down to a few times a week instead.

Hope everyone is doing well! We'll do our best to keep everyone posted.  Right now is sort of a slow process of checking him for signs of GVHD and whatnot so hopefully the blogs will be very boring and not so frequent... as that would be a sign of nothing "exciting" or frightening happening.

Love to everyone!  Hopefully soon we'll start getting blog updates from Tom instead of me! :)

Tuesday, April 9, 2013

Fundraiser and Tom's Escape Plan

First and foremost, many of thanks to those who helped with the fundraiser!!! Whether via donating a raffle item or food, cooking, serving, showing up to eat or shop, or those who've sent a donation in their physical absence. We so greatly appreciate it and thanks to all of everyone's hard work, generous donations, and hungry bellies, we were able to raise over $5,000 after paying for everything. That is so incredibly fantastic!!!

Special thanks to Leslie who put on the ring leader hat to make this happen! Many thanks to Ana Thuemler, Jessica Smith, and Eric & Erin Henderson (of E. Henderson Photography) for their support, muscle power and excellent photos that you're about to see!!! :) Thank you to the Manzo Family at Rancho Grande and Brooke of Prime Cut for selling our tickets at your business! I'd also like to put an incredibly gigantic thank you out there to the Mesker family who with one day of notice took on the role of the chief bbq masters and made our fundraiser the success it was!  Thank you to our baking elves as well!!! No sweet tooth went unsatisfied, that's for sure! So thank you, Lindsay, Teri, Vera, and Amanda! Also, thank you to Michelle Haggard for getting the word out there via the news! So awesome!!! So many many thank you's to be said so do know how sincerely grateful we are for any part that every one played with the fundraiser!!!

 Helen measuring an "arm's length" of raffle tickets for Brant who went on to win a crocheted purse and jewelry box.
 The many, many cupcakes, cookies and brownies that went on to make the "dessert" table! All of the orange is for the leukemia ribbon color! :)
Flowers for Ana, Erin, and my mom. :)
The tons of meat being cooked by the hard working grill masters!
Our live entertainment provided by the wonderful Michael Smith!
The two goofballs responsible for all of these amazing photos! Also, to put a plug out there... Eric is very much serious that they should go back for the UK cycle race in July, right Eric?
My wonderful get-up to help Leslie and Laura with the raffle. Literally, could not see a thing.
The beautiful Amanda and Ana
The Moms: Helen, Marya, and of course myself.
Hey! She stole my hat!!!
I love this photo! Carlos was so awesome! He came out to d.j. for us for a bit and of course Sylvia just brought the party with her. :)
One of the couple of super winners! (a few people repeatedly won raffle prizes... something fishy going on there!)
The folks you need to watch out for when visiting Corning!
Headquarters: Raffle Tickets, Dinner Tickets, T-shirts, Hand blown Glass items... you name it.
Having some photo booth fun! Helen was getting ready for her retirement in Florida!
Raffle time!
Helen and Cindy running the tickets!
Delicious tri-tip and chicken. This photo makes my mouth water (figuratively).
Raffle Items! The gorgeous gift basket from the Cranes!
An example of my lack of ability to see with the glasses on.. I couldn't even walk. Notice my dad's supportive concern in the background. haha
Raffle Table
More of the raffle items
Teri and Scott... Aren't they so good lookin'?
The hungry crowd and oh so wonderful servers! If you winked at my dad you could get an extra slice of tri-tip.
Hazard Family, Rockin' it as usual!
Mom obviously abandoned her station as chief bean disher. You'd think she was a union worker or something.
Lindsay's super amazing brownies!!! SO good!!!!
The photo booth props!
 So Groovy!
 Team Tom (though we failed at showing the writing on our shirts haha)
The best lookin' gals in town! hahaha! (Yes, also the ones forewarned of earlier)
Anyhoo, so as you can see... lots and lots of fun! THANK YOU!!!!! Many, many thanks to all of those who were able to make it out! Thank you to all involved! We are so grateful!!!! Thank you to Erin and Eric for capturing the day for us to share with others and especially to share with Tom who couldn't be a part of it.  Next time :)
Tom's Escape From the Hospital:
So, I'd promised via facebook last night to provide a blog today and the reasons as to why Tom would not be going home tomorrow.  Turns out, since that time, the doctor is now saying Tom may be going home tomorrow!!!! They are starting him on the gen-graf (anti-rejection) pills tonight and if his counts and stuff are good tomorrow, he'll be good to go! Hooray!!! They were going to have him wait because the last two days he's been vomiting and also ran a little fever yesterday so they cannot let him go home until those anti-rejection meds are okay to be taken by mouth (as opposed to the IV form he's been on).  Also, he wasn't eating as much as they would like to see and his counts weren't were they needed to be, but all of that seems to be in his favor now so his goal of Wednesday is looking possible!!!!
Funny Tom moment:  The nurse was in taking his vitals and I asked her if she had cut her hair (it looked different). She replied, "Oh no, I curled the ends a bit and used a headband!"  Tom looked at her and said "I didn't do anything with my hair this morning!"  haha (as it's all missing). 
In getting ready to leave tomorrow, they will be removing Tom's PICC line... he's apparently kind of sad about it, which is particularly odd given how much he complains about it.  He says it's now a part of him.  How funny!
Fingers crossed for tomorrow, folks!!!  Tom says to let everyone know that he's "hanging in there"!