Wednesday, November 12, 2014

100 day biopsy results

As most know via the Facebook post, Tom is still in REMISSION! This means there were no leukemia cells found and he was 99.49% donor cells.  The percentage of donor cells (the chimerism) went down a tad from the thirty day read, but it's still in a very good spot as they want to see between 98-100% at this point in time. The doctor said he was "pleased" which translates to "this is very good" for normally expressive folk like us.

Tom has had a baffling rash for a few weeks now that no one at the hospital were "concerned" about, but also no one had an answer to say what it was or what could be causing it.  It just so happened to pop up when he was told to discontinue one of his meds and when told to go ahead and restart it (our suggestion, not the doc's), it began to subside.

Tom's labs have also been the best they've probably ever been since being diagnosed and without any kind of transfusion so that I would say/hope is another great sign.  His numbers are all within the "normal" person range (though on the low end but they're still "normal").

My apologies for anyone left waiting to hear the news.  I'm pretty sure via Facebook, emails, and phone calls, that we hopefully reached everyone within a reasonable time frame.  Life as always is just so busy, but it's great to be busy.

Other news, Tom was also able to get his tri-fusion line taken out :) Which was dependent on good numbers in order to make sure he wouldn't need any more donor cell infusions to follow up.

Thank you for all of your continued support, love, prayers, positive vibes, and for always cheering us on.

Some photos semi-recent photos of Tom on the mend 
Playing golf (yes, in the house) with Madalynne. On a previous trip to ours she returned to her parents and said, "They play golf in the house, can you believe that?!" 

Tom in his 20's themed attire for Halloween this year. For a bonus he decided to add his Granddad's cane to the ensemble. 

Wednesday, August 27, 2014

30 Day Biopsy Results

Sorry to keep everyone awaiting (I feel like that's how every entry begins). I write to you from the couch, filled with some sort of mystery illness, no it is not strep and the nurse practitioner told me over the top of her gigantic framed glasses that I will get over it.  What an opportune time though, I thought, between school sessions and lack of motivation to do much else, to update the blog.

Monday Tom had his results appointment to reveal his bone marrow biopsy reading.  If I remember correctly, he's to do a biopsy 30, 60, and 90 or 100 days post transplant.  After that there's one six months post-transplant, another 1 year post transplant, and then once a year provided all continues well.   So Monday was the results from the first of these.  The results let the doc know if there is any sign of leukemia and what % donor cells he has.  They prefer to see at least between 98-99% one month out and Tom came in at 99.82% (so nearly 100%!).  The Doc literally only hung out for all of fifteen-thirty seconds so we didn't get a whole lot out of him other than this is "good" and "everything looks good. See you Thursday."

So hey, we'll take it!  Tom is doing way better this time around than he did last transplant.  He has more energy, I even think his taste buds are coming back faster.  By "energy" I mean he gets a good couple of hours of doing something in each day.  Sometimes more than that, but that leaves him wiped out the next day so we have to plan accordingly.  He's been cleared to attend a music festival in September, provided we purchase the VIP tickets so that it's shaded, has seating, and semi-private bathrooms.  So like Tom, needing to be VIP (haha).  He's down to three days a week going to the hospital which is probably quite the relief for both him and Oliver each morning. Currently they're down at the drag races (a weekly evening event which allows him to get out of the house, pollute his lungs with tire burnouts, and get some good people watching in).

I think that's pretty much it. I hope everyone has a fun and safe Labor Day Weekend! :)

Thursday, July 31, 2014

Two weeks Post Transplant (Day +14) July 31, 2014

Well, yesterday Dr. Carroll returned and he is very pleased with Tom's progress.  They plan to change him over from IV cyclosporine to the pills this weekend to see how he's doing and he may be out of here early next week! Doctor says maybe Tuesday or Wednesday, so that's exciting.

Now they just watch for signs of graft vs. host these next few months with his daily visits.  Tom has been very tired, which is normal.  It's tough work making all of those new cells and having them be accepted.  The doc says between the stem cells reproducing and all the things they have him on it's pretty understandable why he's so tired.

He's still battling the nausea, but that's nothing new for Tom following chemo.  It's likely to continue maybe another couple of weeks or so, but it seems to lessen a little bit here and there.  He hasn't been eating a whole lot, the mouth and throat sores attribute to that, but he just doesn't have an appetite and so frequently feels ill, he manages little things here or there.  He's had a craving for a couple of more adequate foods but they're too heavy and make him throw up pretty immediately, so we have to take it easy.

He shaved his head today (the beard went a few days ago), he woke up and his pillows looked like a Newfoundland dog had been sleeping there so we thought it was best.  We got some more cards delivered today, some from Team Effy.  For those who don't know, Oliver played rugby in Aptos with Effy's dad and Effy is a young girl who also was diagnosed with leukemia and she is quite the trooper.  She and her brother made Tom some cards and sent a "Team Effy" bracelet.  If you'd like to follow her story, you can find it here on Facebook.

I think that's about all we have to offer for today.  I return back to work Monday (so I'm scheduled), but depending on Tom's discharge we shall see. :)

Wednesday, July 30, 2014

Day +13 July 30 2014

Tom is doing super well as far as his counts go.  Looking back on last year's transplant blogs, we were told that counts wouldn't start to rise until day +14 and Tom's did on day 11 last time and day 8 this time.  His doc has been on vacation so we've been seeing Dr. Kiwan, so it should be interesting to see what his doc says today since he's returned.  

Tom says if anyone is bored to send him a message as he has nothing to do while he's here. Message him via fb or you can text him if you have his number and if you need either or, just ask me :)

He got some cards delivered yesterday from Aunt Linda and Uncle Fred and their church :) as well as a card from Auntie Cheryl and Uncle Rod so cards being sent to the hospital definitely works.  I think that's like VIP status, receiving cards to your hospital room. 

If you know any good articles or funny things you want to share with him to keep him amused, send them his way ;) Now is just the waiting game and hopefully no more fevers now that the counts are on the rise.  Nurses speculate the counts mean he's definitely engrafting (the cells are taking... gotta make sure this is in English for ya Will).  

Okie doke, well that's all folks. Tom has only had one blood transfusion so far (which is pretty darn good) and only two days of platelets I believe.  He hasn't had either since the 26th. :)

I've been praying and praying that God just heal him and make him better.  Being a week ahead of schedule I think is a good sign that we're getting answered. Thank you to everyone who's been praying and thinking of us and sending such thoughtful and supportive things our way! :)

Sunday, July 27, 2014

Day +10 July 27 2014

So I didn't dare say anything to soon and jinx it, but it would appear that Tom is some sort of record shatterer.  Looking back over last year's blogs around transplant, the doc told him then that it's typical to not see a WBC increase from 0.0 until Day +14 and Tom did it by Day +11 having spent only a total of four days at 0.0.  This year (hold onto your hats) Tom has only spent ONE day at 0.0 and had registered at 0.1 on day +8!!!!

On day +8 we thought (myself, the nurses, tom, and the doc) that it was possibly a misread the day previous and maybe he hadn't actually hit 0.0 yet.   Well He's now had three straight days of 0.1 and then his hgb and platelets stabilizing/increasing as well which points to (drum roll please) recovery.

Dr. Kiwan (who is covering for Dr. Carroll for the week who is on vacation), said he has only ever had one patient before who spent only one day at 0.0 and was at day +9  (where Tom's increase started at +8) and he said the other guy was a different situation.  So per usual, Tom the over achiever is doing ok.  He does however have the typical and expected mouth sores that have moved to the throat now so he's having a hard time eating and is in agony.

We are so astonished that I thought I'd look back at last years blogs around transplant and found that I was in search of frankincense to help with white count recovery last year.  Oddly enough, subconsciously I suppose, I've been rubbing frankincense on Tom's feet daily giving him foot massages.  So I think I might just take a little credit here. ;)

I should probably knock on wood here, but we've also seemingly skipped fevers (though his counts would suggest there's still ample opportunity), so far he had just two days of fevers where it spiked one night and seemed to go away once the antibiotics started.  They already identified it a type of staph found on your skin or in your mouth so it's as usual just something that got unruly when given the opportunity.

Well I think that's it. :) Doctor says the next waiting game and area of concern is seeing what these new cells do ... basically whether they decide to create havoc and put him through graft vs host or not.  Keep those prayers coming for him, something's working!

Tuesday, July 22, 2014

05/22/14 Day +5

Tom had a really rough night beginning yesterday evening.  It seems that he has been getting upset stomachs in the early afternoons and then around dinner time ends up being really sick.  The last couple of nights he's been sick and restless and then spends the day time trying to catch up on rest and not feel too awful.

As mentioned yesterday, he's lost a bit of weight already.  Dr. Kiwan mentioned it as well when he was doing rounds filling in for Dr. Carroll.  Tom's stomach since yesterday evening has been very upset (poor guy).  Dr. Kiwan says this is the first indication for the mouth/esophagus/stomach sores as well as the fevers.  This is all fairly expected so in the next few days that's what it seems is to come.  Poor Tom is in just complete discomfort and feeling so bad and there just isn't much we can do.

Since the expected trend is fevers and whatnot we just have to cross our fingers and toes and say our prayers that he doesn't have anything to crazy rise up as the source of infection and that it's all easily treatable and recovery is fast and easy for him.  It's definitely not comforting to hear, "It's going to get worse."

That's where we're at.  If only we could get him to consume something and retain it. Due to the upset stomach we're gowned and gloved up until the C-Diff test comes back negative.

Keeping you updated :)

PS. I've added a new page with some resources for others if anyone ever needs any resources on cancer treatments, support groups, financial assistance, etc.  I hope it's helpful :)

Monday, July 21, 2014

July 21, 2014 Day +4

Some of you may remember how they label the days surrounding transplant, but just a refresher, they count down at the start of chemo (day -7 or -6 depending) and the day of transplant is noted as "Day 0" from which they continue to count, Day +1 (following transplant), +2, etc.  Today is day +4.

Tom's counts have begun to drop as expected.  This time last week he was at WBC 1.8 and today he is at WBC 0.5.  His hgb is at 10.5 and platelets at 32.  For hgb they provide blood transfusions at 8.5 or lower and platelets they transfuse at 20 or lower. So the white cell count will drop to 0.0 for awhile and when they recover is when the discuss discharge.  Of course, Tom will also have to be eating well and taking his pills by mouth as well.

Tom's been having some good days and yucky days, more like all yucky days with a few hours of okay-ness here and there. He has lost over 15 pounds in the week and a half he's been in the hospital. His mouth sores have started to develop so they'll be creating a difficulty eating and typically end up in the esophagus as well which makes it incredibly painful for him to swallow.  I don't think anyone is looking forward to that period of time.  I guess it's time to start becoming regulars at Jamba Juice again.

He is already feeling really fatigued and isn't able to do as many laps around the hallways as he could before, but that's pretty typical.  He makes the effort though to do at least one at a time a couple of times a day.

Also, I just found out today that if anyone is interested in sending cards to Tom at the hospital they do a morning card delivery (no pressure).  It would just have to be addressed to the hospital and include his name like so:

Sutter General Hospital
Attn: Thomas Walshaw rm. 4422
2801 L Street
Sacramento, Ca 95816
USA (for you UK folk)

Just a forewarning: Please no live plants or anything though as they will not let them be brought into the room.

Thank you for your continued, prayers, love, and support!

Thursday, July 17, 2014

Transplant No.2

Hey all,

So as you know, Tom came in last Thursday the 10th (his mom's bday).  He was supposed to have five days of chemo that has low side effects; however he was sick straight away and it was a long five days.  Then he was supposed to have a rough chemo on day six... and was completely fine, began eating and all sorts.  He has a blackberry-apple pie from Rick's Dessert Diner to commemorate his transplant day (I'm eagerly awaiting this).

Transplant was supposed to happen yesterday, the 16th (our anniversary), but the cells arrived after 10pm so they said it was too late and they'd do it in the morning.  Apparently the cells landed at San Francisco Airport just before 6 so the courier must have stopped for a five course meal or something as I don't think it takes that long.

Anyway, he had the transplant this morning, cells infused in about 5 minutes.  Apart from some initial minor shaking, his vitals all stayed steady, there was no allergic reaction this time... all is good so far.  So now they monitor vitals every 30 min for 2 hours, then every hour for four hours, and if all is good he goes back to normal check ins.  He's sleeping off the benadryl currently and catching up on the two nights of missed zzz's due to anxiety.

We had a lovely visit from Corinne and Madalynne on Monday which cheered Tom up, though he wished he was feeling better and able to be better company, but it was nice.  Madalynne played nurse and took care of Tom's sick bags and even gave him a foot massage! Helen, David, and Elaine are here on morning bacon sandwich duty and keeping company while making sure the house, dog, and fish are all good.

The shawl from Aunt Linda and Uncle Fred is keeping everyone warm in the room Tom likes to keep freezing, thank you very much!  Also, we've been blessed (I may have mentioned this previously but I don't remember) from Nickie with some essential oils and infra red heating pad that has been a God send for Tom's back and he's been enjoying some daily foot massages.  I would like to put a disclaimer out there though that I will not be broadening my clientele of foot massages as me even massaging Tom's feet is just a clear display of true love (I hate feet, apart from their good use as a means of transportation).

Right, that's all for now.  Today's counts aren't on the board yet, but yesterday's were as follows:
White blood cells (WBC): 3.2
Hemoglobin (Hgb): 11.6 (probably the highest it's been definitely in the last year)
Platelets (Plt): 114

These good numbers will be short lived as the week's chemo kicks in and the cyclosporine (immune suppressant) along with the small doses of methotrexate to start here daily (to also work on the immune system).  So the numbers should drop and then when these stem cells start to mature and reproduce they'll go up again and be means for discharge.

I'll keep you all posted :)

Thursday, July 3, 2014

Brilliant News

Sorry for the long wait, the doctor had decided to wait until the consent signing to give the news.  It was kind of a good thing because we had the "no news is good news" approach given that he said he would call prior in order to cancel yesterday's consent signing if the biopsy wasn't good.  Anyway, it wasn't just good, it was as good as it gets!

Tom is 100% donor (for the first time ever we're pretty sure) and is 100% in REMISSION!!!! Now, you may be thinking, "Great news! Now he doesn't have to do a second transplant!" Which even the doc said would be normal to conclude; However, given that Tom has relapsed twice already, we already know that his remission on chemo alone will likely not stick.  The goal of the chemo was to get him into remission as people who are not in full remission don't tend to do well in transplant.  So, he is as ready as he could be for transplant and we are so very grateful!  All of his scans and tests on his vital organs came back good too. :)

So what would you like to know?  Well when they check for donors they "match" on 10 genetic markers.  The last donor was a 9/10 and the mismatch was a marker that only mattered if another marker was mismatched.  Tom clearly took well to the donor's cells as apart from the initial allergic reaction during the transplant, he never got graft vs. host... even when they tried purposely with two DLI's (mini stem cell transfusions without the use of immune suppressants to cause GVHD).  So when you get graft vs host, the attack is non-discriminatory on the system... the donor cells just begin attacking everything to a level depending on the level of gvhd.  While on one hand you don't want that because it can shut some important things down, a mild case of it can be good because as it's non-discriminatory, it means it also will have what they refer to as graft vs leukemia effect as well.  So Tom never got that out of the last transplant.  The new cells moved in peacefully and didn't fight him or his leukemia cells.

This time he has another 9/10 match but the mismatch is a different marker and the type of marker it is means there's more of a chance for gvhd this time than last time, but remember gvhd also means some graft vs leukemia.  Because gvhd can equal some graft vs leukemia, it also lends itself to a high percentage of people (like in the 90% range) who get gvhd don't relapse.  So if you can make it with some mild gvhd you sort of seal the healthy deal for yourself.  Anyway, so the donor is a 40 year old female and doc says she's a "do-gooder" because unlike the first two people he contacted and weren't available until September, she apparently jumped at the chance, for which we are much appreciative.

Other related news, Tom is partaking in a couple of studies as well so that they can learn more about possible preventative meds and blood studies to study his and the donors blood to see what makes for a good transplant.  One of them has some compensation which he is planning to put toward his Magic Weekend Fund (for you UK folks he's saving/planning to go back next year for Rugby League Magic Weekend).  The other one they just take some blood before hand (they did that yesterday) and you never hear of it again.

We've got a full house! Oliver moved in about Mid May, David arrived Saturday, Helen arrived Sunday, and Grandma Elaine arrives Friday the 11th.  Which brings me to his hospital dates (the moment everyone has been waiting for).  Tom goes in early morning Thursday the 10th (Helen's birthday) and then transplants on the 16th (our wedding anniversary).  So that must be good luck! Doc says he anticipates at least a 3 1/2 week stay.  That sounds about right, last time Tom was in about 23 days total.

We also got a lovely surprise in the mail from Team East Coast last week! My Great Aunt Linda, referring more as an adjective than a familial title ;) , and Great Uncle Fred sent out the most beautifully hand made shawl that must have taken forever to make it's so beautiful.  Tom is always going from hot to cold in the hospital and asking for warm blankets to wrap over his shoulders. Photos to come when he's putting it to some good use.

As of tonight at 5pm I will be on a three week leave from work so I'll do my best to be more frequent in updates (I keep saying this... but in my defense Tom wanted me to wait until we had results to post).

Happy Fourth of July to our American peeps and Happy Reminder We Won to those in the UK (haha)!!!!

Friday, April 25, 2014

Playing Catch Up... Again

Well, I'm sure at this point everyone is well aware that we did not get the results we had our fingers and toes crossed, and prayers said for. So Tom had relapsed again and to spare everyone the lengthy details and a box of tissues... he underwent some more chemo and will hopefully be doing another stem cell transplant this summer.

He did the chemo two weeks ago and was released to go home on Palm Sunday just following the chemo because he convinced the doc he'd come back in as soon as he got the fevers.  Staying true to his word, he ended up back in here last Friday night with the fevers, but luckily they got the fevers under control before it'd been too long or they got too bad, hooray!

David has been out to visit twice this month so that was nice and we were graced with Oliver's presence twice and Kane paid a visit with him.  We also got to see Alex, Emily, and Lily just before Tom had to go in for chemo and Helen is here currently for another week! Kris came and spent a day with Tom too (thank you!) so he's been getting some visitors to keep him company and well entertained.  Kane and Oliver introduced the game Catchphrase to the group and that was a winner!

Currently they are looking for a new donor for this next transplant.  As of today Tom is 0.1 WBC which is great because the doc said the other day that he didn't expect movement on those counts until next week-ish.  As we all know though, Tom is an overachiever.  A few days ago he told me Dr. Carroll said that his counts would probably hit the chart next week and maybe he'd be home end of next week and I told him to shoot for 0.1 on Friday, right on time!

In other fun news, our friend Lauren's school is doing a fundraiser for the Leukemia and Lymphoma Society and after sharing Tom's story they decided to name their classroom team, Team Tom! How awesome is that?!

Anyway, sorry for the delay and I'm hoping everyone has really been updated in some form or another already.  The initial news was so much of a blow I just wasn't up to it and then he was doing chemo and he's back in again, so it took me awhile.   Hoping he's back home soon! Thank you everyone for all of your love and thoughtful support! 

Wednesday, March 5, 2014

Moving... again, but hopefully last time for awhile!

Hi everyone!

So we didn't mention it in the last blog because we weren't 100% sure everything was going through, but we're moving!!!! 

Some may be aware that we were looking to buy a house when Tom was diagnosed, well given circumstances we decided to look again.  Our rental lease in Sacramento was up March 31st and was being raised an additional $200 a month! Which is crazy! Because we moved there due to the hospital making us move closer and me now working 20 miles away, we decided to move to a cheaper area, back toward Rocklin since we loved the area so much, closer to my work (and hopefully Tom's if he's released back this month), and to be making payments toward something rather than just to the property management.  

So with me leaving starbucks, my retirement fund (haha, more like a small vacation fund) was up to transfer or cash out.  We decided to take the money and run! And then with amazing timing, my worker's comp. adjuster offered to settle and pay the cost of a possible future surgery on my right hand.  We decided to be responsible adults and use it as a down payment.  So ta-da! We are moving with purpose! 

If you need our new address, let me know and I'll be sure to get it to you.  Going back to Tom being released to work, his biopsy is the 21st so the following week we should know the prognosis. If clear he gets released back to work (which I think we all would like to see... probably our wallets as well) and if not clear, he will have to find another donor and do it all over again.  Luckily, our house is within the radius that the doctor wouldn't mind should that happen. 

Speaking of doctors... we're very grateful to the UK fund who paid Tom's insurance premiums up and his ambulance ride!  The insurance is over $300 a month so that is a tremendous help and we don't have to worry about him not being covered.  Thank you for all that you do! Hopefully someday we will be able to do the same for someone else in our situation.  

In other news, continued prayers please for Nico's wife and family.  Nico is the friend with the same diagnosis who recently passed away. His service is next weekend. Also, please continue prayers for Tom's grandfather's return to good health so he can return home from the hospital.

Side small world moment- When getting internet installed at the new place, Tom realized another friend Lisimba from our cancer-surviving-circle worked for the same company.  Well, he asked the technician if he knew him and the guys said yes and called him up and had Tom talk to him! He will be in remission two years this summer!!! He and his wife are amazing and now we'll be living even closer to them! Zenzele, do I see a wine and cheese night in the future???? Ps. Your husband volunteered to help move this weekend ;)

Thanks again everyone for all of your love and support and everything you do to keep us going and spirits up! Hopefully our next post is shouting about Tom being cleared! 

Saturday, February 22, 2014

February nearly March already

Hi everyone,

We don't have a whole lot to share, but sometimes no news is good news right? Tom did not end up with any graft vs. host. His last doctor's appointment was in January and his doctor said that had he showed some signs of gvhd that he would consider telling Tom that a return to work would be ok, but because he didn't he is nervous and unsure of Tom's current remission state.  So he told Tom to just enjoy another two months off and a month or so from now he will have another bone marrow biopsy and with those results he will determine the course.

If Tom is still in remission he may possibly be released to work depending on the doc's confidence level in the remission status. If (God forbid) there is some evidence of relapse, he'll be back in for chemo, back to looking for another possible donor, and doing another full bone marrow transplant. There is obviously a lot of anxiety around this next bone narrow biopsy.

In other (very sad) news, this week we lost a really good friend who we met last year when Tom was in doing chemo. This guy was newly diagnosed with the same leukemia as Tom and he had a rough road ahead with many complications. He went to Stanford for his transplant in October and made it through but had graft vs host complications. He lost the ability to walk due to compressions in the back and later had lung issues. Long story short, I'm told he fought hard and that it was an unimaginably tough call in the end to take him off of life support, but his wife feels he definitely got the best care possible and that they did everything they could for him. He was a wonderful guy and he and Tom really connected, his wife visited us while Tom was in the hospital even though her husband was too (in Stanford). Please keep them in your prayers.

We received the news the night of the Leukemia and Lymphoma Society's award ceremony of which they'd asked Tom to speak and he still did. I'm very proud of him and I think he did a great job of letting people know what a good cause it is. (ps. There is no video of this)

That's all for now. Continued prayers for Tom please, we will keep you posted when he gets the results.  Also, please pray for Tom's grandad who has been in the hospital, I'm told he is getting better.