Christmas Eve at home listening Christmas music..

I made it home today. All my counts are presentable: Wbc 4.6 Hgb 9.2 Plts 116 and Creatinine 1.7.  As usual it was the creatinine we were watching, it was 1.96 yesterday so if it went down and I didn't have a fever I could go! A three day stint in hospital wasn't that bad. I have to say I felt pretty sick while I was there and slept most of it.
It will be nice to wake up in my own bed tomorrow morning...it being such a special one.

Happy Christmas everyone!

BK update

This is Kristy writing again with an update...unfortunately Brian is in the hospital again.  The BK virus has gone from his urine to his blood and was causing a few symptoms that they wanted to monitor closely - headaches, slight confusion, fevers, and rash are the main ones.  Because these symptoms can be signs of serious things going on he has had to have several tests, some of which are not very pleasant - skin biopsies, a catscan of his head, and a lumbar puncture.  We should find out the results of the skin biopsy today (Sunday) and some of the lumbar puncture results too.  The catscan was normal which is great.  They're giving him cidofovir again in hopes to bring the viral load down, but they had to stop the Cipro because of the rash (it is one of the possible causes for the rash).  His creatinine is elevated at 1.9, but it's hanging in there and hasn't gone too crazy.

In the big scheme of things this is a setback but not a major one - BK can cause damage to kidneys but is mostly just annoying and uncomfortable.  There are many more serious viruses out there that could cause major setbacks and complications, so we're trying to keep a clear perspective of what we're dealing with.  The biggest bummer is that he may not be home for Christmas.  Yesterday he had a fever of 101, so he needs to be fever-free in order to be discharged.  I'm not exactly sure what else they want to see, but hopefully we'll know a little more today.  I'll post another update later tonight or tomorrow with any updates.  Thanks for taking the time to read and stay updated - we appreciate you all immensely!

Home - Day +100

We got home a week ago today, the trip home was made very easy by Corporate Angels and the chaps on the plane couldn't have been nicer. We arrived in Olathe (20 minutes from home) and Sophie and James ran out on the tarmac and gave me big big hugs - what a welcome!
The next couple of days I got to bed before the kids, I think a combination of being more active with Sophie and James and a virus has meant I'm exhausted all of the time. On Monday I went in to Clinic and had blood work done and Kristy arrived a little later for a doctors visit. It was so nice to see everyone again, I have missed them. Plus they do an awesome job!
I had Adenovirus checked as well as BK virus and all the other usual stuff. All was fine except I have BK again. I called MSK to see when they last checked it which was 10/10. I guess they only treat if I have symptoms. So I'm back on the antibiotic Cipro. This makes me pretty nauseated and eating and drinking are difficult. I'm glad they are on top of things here but I wish I felt better, hopefully soon.
Being at home is great and I am spending a lot of time with the kids, it's crazy to think I was away from them for so long. And as much as I am loving being at home, I do miss my friends at Hope Lodge.

Day +92

We have had a good week so far. Tuesday I went in for my second dose of Cidofovir; it was a long day because of premeds and IV fluids but I was able to get a full dose (1st time I only got half) because my creatinine was only 1.4.  I got to clinic at 9am and left on the 7pm shuttle so, as I say it was a long day but Wednesday they checked my creatinine again and it was still 1.4. So all the IV fluids plus what I drank protected my kidneys just fine and hopefully when they next check my adenovirus levels they will be lower or even back to normal.

We also had a meeting with Dr Koehne and he agreed that we could travel home as soon as we can get a flight (I can't fly commercial as I am still open to infections). We have called Corporate Angels, a company that donates flights to cancer patients when they're available.

Dr Koehne felt comfortable in having Dr McGuirk look after me - and we are very happy to have him look after me and to be back in KC.  I also had my bone marrow biopsy which was fine, so hopefully those results are good. Two days ago I had my Kappa Light Chain numbers checked (these are cancer markers) and they are undetectable which is great.  So all going well we should be able to leave for KC sometime over the next week - here's hoping!

Okay, I have two updates.  First I got the latest Adenovirus numbers and just before I had the full dose on Tuesday, the number had dropped from 27,600 to 1,800 which is great and so after Tuesdays dose I should be normal. The other update is that my next Adenoviral test will be done in KC! I got a call from Corporate Angel flights today and they have a flight for tomorrow! So we find ourselves madly packing and saying goodbye to the good friends we have made in Hope Lodge. We fly at 2.40pm tomorrow direct to Olathe (20 minutes from our home), please cross your fingers it all goes to plan. 

Feeling much better... partly because Kristy is here.

Kristy got in around 3pm Friday, it was great to see her. Flights went well so her trip was pretty uneventful.
We went in to clinic today to check on my counts and all are fine, creatinine is 1.4 still which is great. We also got the result of Thursdays Adenovirus check and it had gone from 413,000 to 27,600, so it looks like the Cidofovir is working which is great news.
I haven't had a fever since Thursday morning so feel a lot better and am eating fine now. I had got down to 153.8lbs before they flooded me with fluids, but I'm on the mend now. Hopefully all the excitement is over and I'll revert to being a wonderfully boring patient again.

Back to Hope Lodge

I was discharged at 4.15 this afternoon and am back at HL. Friends on the 12th floor had been in touch with Kristy via text and I was given dinner when I arrived and extra supplies of water. These people are all very special and so giving, I'm very lucky to be part of the 12th floor 'family'.

I'm feeling pretty tired although have been fever free since this morning. My Creatinine is 1.4 which is great. My wbc was 1.5 and my anc 1.1 so before I left today I had a neupogen shot to boost those numbers. Other numbers are low but not too bad.

I still have that headache, I think it could have been the bed/pillow which were pretty uncomfortable, so hopefully it is gone in the morning.

Looking forward to seeing Kristy tomorrow.

November 28th So far so good...

I started the day with a fever of 100.4f which is a little bit better than the previous morning. My Creatinine at 7.30am was 1.5 which I was pretty happy with. However it can still go up so I've had IV fluids all day plus pushed fluids orally just in case it helps. My weight went up 4lbs since yesterday! That's how much I've been hydrating. They will check my Creatinine again in the morning and that should show any trend. Also tomorrow they will test for Adenovirus and by Friday we should have a result.
All going well I'll be discharged tomorrow and I'll go back to Hope Lodge. Next Tuesday Dr Koehne plans to give me some more Cydofovir so I guess I'll be admitted for that again.
As Bernie my last 'planned' carer flew home today and I'm really not strong enough to be on my own Kristy will fly to New York on Friday to be my 'super carer', which I am very happy about.
So if I can just get rid of this headache...

November 27th

Well they just started the Cydofovir and I managed to get my Creatinine down to 1.4 this morning so hopefully that is good enough. I'll also be getting more IV hydration for a couple of hours after. Plus, at about 8pm I get a 4 hour infusion of IVIG. I think I'm going to be here for 3 days or so, I guess we wait and see how my Kidneys do and if they tolerate the medication I'll get it again in a week.
I must say this is a disappointment, we'll see how big a one in a few days.

November 26th Day +82

Well I guess I picked up a bug...Adenovirus. They found it in my blood at 116,000 copies per micro liters, I'm told that is high. My only symptom seems to be a high fever, as documented. I ended up going to Urgent care again Friday morning at 2am and having more tests (when the only positive one had been done on Wednesday - but either the result wasn't back or it wasn't picked up).
So now an infectious disease doctor is consulting with Dr Koehne to decide on a way forward.
One of the standard drugs they could use is Cidofovir, the only problem is that it is toxic to kidneys and normally not given to patients with an elevated creatinine...mine was 2.2 at last check. So there is a clinical trial that maybe available....I am waiting to see if I qualify. Another option is to see if my body can fight the virus off, I'll have to check with my doctor to see how intelligent that would be.
So we'll see...
Update: I'm being admitted tonight (Monday night) and start Cydofovir (I think that's the correct spelling) tomorrow, the other options are not on the table anymore. Good news is though, through hyperhydration (me drinking lots) I managed to bring my creatinine down to 1.5 and I'll get IV fluids tonight to try to bring it down even more before they start Cydofovir.
So again, we wait and see...

Long Day...

Woke at 2.30am not feeling great, in fact I have felt nauseated for about 4 days now and was hoping it would pass. However this morning my temp. was 100.8f and so I had to go in and have blood cultures taken in case I had a virus of some kind. So CBC was fine - really good in fact, Wbc 4.4, Hgb 11.5 and Plts 107. Creatinine not too bad at 1.8 and my temp. had gone down to 100.1. So by 5.30am I was back at Hope Lodge.
We (Pauline and I) are back again sitting, it a 'sick' waiting room at MSK. I've had more lab work done for a wide variety of viruses and are now waiting to see Eva the NP, 3.40pm...
It is a busy day here in clinic, luckily they were able to squeeze me in for some IV fluids today rather than come back tomorrow. So we're here for another 2 hours. My nausea has not helped my weight which has dropped by 2.5lbs. Hopefully tomorrow when they get back the viral blood work we get some answers. Also something unusual.. I had a CBC done again this afternoon and the Wbc had dropped to 3.0 - in 9 hours! I wasn't aware it could change so fast. 

Day +70 Part 2

I had a clinic vist on Wednesday (Day +70) and managed to put on weight for the first time in quite a while. A massive 1.1lbs! My Blood pressure seems to be doing great at 107/74. All my counts were fine, Hgb 10.4, Platelets 107, my Wbc was a little low at 2.4. So next week they will check it and if it's below 1.9 they will give me a Neupogen shot to bump it up.
Generally I feel I have more energy, the trick is not to do too much and get worn out. Pauline and I try to walk for over an hour every day and I'm starting to do some weight bearing exercises.
All going well I have only 3 visits left to the clinic, Pauline has been here over a month and my friend Bernie will arrive on Thanksgiving and will be my last carer! After that I'll stay for a little while on my own at HL and I have already contacted a couple of 'Angel Network' organizations to help me get back home early in December. I have been in NYC almost 3 months and would like to think this stage of my treatment is drawing to a close and I'll be home soon and be well enough to enjoy and great Christmas!

Day +70

Well my apologies for not posting for a while. We had Kristy, Mary Lynn and the kids visit last weekend which was fantastic! It had been 11 and a half weeks since I'd been with them and so it was about time. My favourite times from the weekend were laying on the ground building Legos or laying in bed just chatting to Sophie. We did lots and I think they liked NYC, but like me were/will be glad to get home. Here is a taste of what we did..

Exploring Central Park!

Feeding the horses by the hotel.

Enjoying the playground.

NYC!

Snack in Central Park.

Nov 2nd Day +58

Well here we are...still here. Last Wednesday was clinic day and I saw Dr Koehne. He had managed to drive into Manhattan. Some of the staff I met are staying at the hospital as they have no way of traveling to and from. Others who live on Manhattan described their appartment as a 'dorm'!

So my vitals are still fine which is great, I am loosing a bit of weight 1.5lbs this week and a total of  about 6.5lbs since leaving hospital. I have no real appitite which doesn't help.
Blood work is fine Hgb 11, Plt 133, Wbc 4.something.

I was supposed to get treatment but it had been canceled and only emergency treatments were being provided. Which puts things back a little, I get the delayed IVIG next Tuesday, then the final IVIG 4 weeks from then. My very last scheduled proceedure/treatment is a bone marrow biopsy on December 5th and then (all going well) I can go home! I can't wait! But I guess I will...wait.

We have been very lucky here at the Hope Lodge, we never lost power through the hurricane. We are pretty much on the dividing line, streets around us and south have been without power for 5 days. 34th Street and above, in the main, did not loose power...so like I say we were lucky.

I went for a walk over to the where I normally pickup the 'High Line' at about 30th and 12th Ave. It was closed so I went south into Chelsea to where the galleries are. At about 26th Street I walked west towards the Hudson river, walking along I was passing people sitting outside dark galleries surrounded by paintings trying to dry them. It was a little surreal. As I passed another I saw a man bringing out an A1 portfolio case. He opened it to find everything inside soaking wet, as I passed he just stared at the contents unaware of me. My heart dropped for him, it is so sad. This is such a small moment which is multiplied millions of times, with people loosing so much.

All fine at Hope Lodge

Hello from dry, electrified Hope Lodge. I know from the news I have been watching that lower Manhattan and surrounding areas have been hit pretty badly by Sandy, however Hope Lodge in Midtown is fine. As Kristy said we took some precautions just in case, but we never lost power. During the evening and night the building swayed (it's about 50 stories) and on the 12th floor where I am the whole room creaked disconcertingly, we were told this was normal so were not too freaked out (just a little..). Today we are going for a walk as the wind has died down and I will hear later if they will cancel tomorrow mornings outpatient clinic visit. Today understandably all appointments were cancelled.

Hurricane update

Hi, it's Kristy writing this blog post.  Brian is unable to get to the main computer room at the Hope Lodge, which is the only place he can write the blog (it's blocked from the wifi there for some reason), so I thought I should write a quick update.  I've gotten lots of calls and texts today to ask how Brian is doing despite Hurricane Sandy - I'm happy to report that so far he's doing just fine.  They're taking lots of precautions in NYC, so pretty much all of the public transportation has been shut down, several appointments have been cancelled, etc.  The Hope Lodge handed out flashlights to everyone and they shut down the elevator in case of power failure (I'm assuming they'll turn it back on tomorrow).  Pauline (Brian's sister) went out a day or two ago and stocked up on some essentials (food & water), so they should be fine for a little while.  I'll try to put up another post tomorrow, but if I get side tracked please assume that no news is good news. :)

Day +49 Clinic visit

Well Pauline and I were up early this morning to jump on the 7.30 shuttle. I've had my vitals done and blood drawn, just waiting now for my NP visit.
BP 115/74, HR90, temp fine and weight 164lbs which I can't believe. I lost half a pound when I thought I would have put weight on. I guess I need more bacon..
Everything is good, Creatinine 1.8, Hgb 10.7, wbc 3.0 and plt 133. So back in a week.

Day + 44 (I think)
I went in for my weekly check up on Wednesday. All my numbers were pretty good. Since my transplant my BP seems to be very different for some reason. Before I was taking BP medication and was normally about 130/80 but now without any medication I'm 100/70! quite a difference I would say, in a good way I think. We'll see if it changes further. I did loose 3lbs this week which was a surprise as I had been eating fine, maybe the daily walks with Kevin used up more carories than I thought!
Platelets 141, Hgb 10.8 and wbc 4.0, so all good. Last weeks bone marrow biopsy results are coming in bit by bit. So far they said there is no sign of Myeloma which is great. The next piece of information will be the percentage of marrow which is donor and which is me. Dr Koehne is expecting for 95%+ donor...so that is what I'd like too.
BK virus test came back positive and the week of antibiotics is really helping. My symptoms are down to 30% of what they were, so that is good.
So Kevin spent a week with me, it was great to catch up and get out on some short walks. I think he really liked NYC and plans to come back with his family some time. Pauline my sister arrived on Wednesday and will be here for a little over a month. It has been great catching up, sadly she is still stuck on Irish time and gets up at 4am poor thing.
I will attach a couple of pics one of Kevin and I in the 12th floor kitchen and the other one I found that Kristy took before she left...when I still had hair, I wonder what color it will come back?

UPDATE: Just found out that the bone marrow showed ALL donor cells, which is good news...I am no longer me, marrow-wise.

The 'hub' of the 12th floor, Kevin and I in the Kitchen.

Me during chemo before 'it' all fell out!

Day +36

Yesterday was a busy clinic day. Zach, Kristy's brother, came down from Philly and spent most of the day with me so Helen could do some gallery viewing before going home today. I had lots of questions for Dr Koehne at 11am, starting with what was the result of the BK virus test which was done 10-11 days before. After much checking it was determined that it never got to the lab...so no results, instead I had to repeat the test...not too happy about that. After explaining that my symptoms were a little worse he agreed to start me on Cipro (an antibiotic) which maybe should have happened a week ago.

I asked Koehne about when I could leave. Part of the protocol for this transplant is to have 3 IVIG infusions, basically they help my non-existent immune system get artificially enhanced. I get one per month for 3 months and got the first one on Oct 3rd. So by about December 3rd I should be done and barring any other problems (knock on wood) he said I could leave after that (as long as I come back for check ups and Leukocyte infusions). This is fantastic news so I'm going to do all I can to stay infection free and fit as a fiddle with hopes that I can return to KC very early in December. I of course will still have very little immune system and will need to take all the precautions - but I will be at home! So that is the aim, we'll see how it plays out...

At 1pm I had a bone marrow biopsy which went pretty well, though today it is pretty sore. All my blood work looked good so all in all it was a good day at clinic! When I asked Dr Koehne today about going home he kind of laughed, he said in the past statistics for people with Myeloma at 100 days post allo transplant were that 60% were dead, now 0% in his program were dead. Now his problem is that people are feeling so well they want to leave and go home! That is a great 'problem' for a doctor to have!

Friday Day+(wow I've been away from home too long)

Went to the clinic today for labs and IV fluid. Wasn't very impressed with the first 2 attempts to get an IV in but we got there in the end. I've got some saline in my muscle tissue which doesn't seem to be too happy this evening...
Anyway enough of that, my Labs were fine and I got back the Kappa LC numbers from my blood work on the 3rd and the KLC number is <0.04 which is undetectable - which is good news, lets hope it stays there!! Normal range is 0.03 to 1.9.
I have symptoms which led them to test for BK virus (look it up if you want the gory details), test is still pending and when it does come back they will do nothing anyway, as a virus it will just need to run its own course.
Nothing else to report, other than it was 81f here today!
Also, thank to Julie and everyone else helping with the garage sale tomorrow in Kansas City, wrap up warm I hear it will be a chilly start to the day!

Day +27

Well, Helen and I have been catching up which has been great. We went for a walk on Sunday on the High Line, I surprised myself by walking all the way home from 12th St and 9th Ave or where ever the southern most tip is. We got a cab down there to maximize the pleasent walk back. However it was a nice day and we weren't the only ones with the great idea. It was so busy I couldn't take my mask off at all, but it was great to get out.

I got to see/experience some moments of Sophie's Birthday via the wonders of Skype. I was sorry to miss it but don't think I would have had the energy needed to keep up!

I spoke to James on his way to school today and he informed me he saw a racoon! He and I were very excited, Kristy told me later that he saw another one as they dropped Soph off at school..So unless racoons are becoming a lot less afraid of people the first spotting has been called into question. It was a great conversation though!

Today we'll pop out for a short walk but it's forcast rain so we won't be going far. Tomorrow I am scheduled for a clinic visit and IVIG which is a 4hr infusion so we will be there for a while...

For people who have asked, these are my addresses at Hope Lodge, I say addresses because UPS/FedEx go to a different one than normal post.
normal post:

Brian Delaney Rm 1201
c/o American Cancer Society Hope Lodge
PO Box 2284
NY, NY 10116

UPS/ Fed Ex etc.
Brian Delaney
American Cancer Society Hope Lodge
132 W 32nd St
NY, NY 10001

Lab Visit Wednesday.

Hello, just to say my lab visit yesterday was pretty uneventful. There were a few things that could have gone better but it is just their administration that need to be a bit sharper...
Anyway counts were good Hgb 9.5, Platelets 128, Wbc 4.2. Creatinine was 1.8 and that was only because they left me on potassium supplements a little long plus a little dehydration - all sorted now.

I notice I'm getting stronger every few days which is great, I go in tomorrow for blood work just to check everything is normal again regarding the potassium. On Wedesday I also had my central line taken out so that will make showering easier!

Kristy leaves on Saturday and my sister Helen arrives as my next 'carer' tomorrow which will be fun. I'll of course miss Kristy she has been great (even in the face of a demanding husband), but I'm glad and envious she gets to cuddle the kids on Saturday!

I hope all is well with everyone! Thank you again for your support.

Sept. 24 Day +19

We are playing catch up a little bit today...the wifi connection at the Hope Lodge does not allow us onto the blog website, so we can only write updates from the public computers downstairs.  Needless to say, it takes more organization and therefore we haven't been as faithful at writing daily updates - sorry!

Here are some photos from our first outing after being discharged from the hospital - picnic in Central Park! Our friend, Alysa, came to NYC to visit for the weekend, so she's in a couple of them.

Eating lunch on a bench with Alysa

In the Great Lawn of the park, Smurf's castle behind us!

 

The next doctor's appt is on Wed and we're hoping that Brian's line is pulled that afternoon, but it will be dependent upon his labs (which they expect to be ok).  He continues to gain a little bit of strength each day and today his nausea seemed to be better.  One thing that Brian has commented on is that he can really tell a difference every few days in his energy level and strength - when he had his autologous transplant 2 years ago it seemed like progress took much longer (or so he feels), so this is very encouraging to him!  As we prepared for this transplant we just expected the absolute worst...everyone said how much more difficult an allo is vs. an auto...he is happy to report that this has not been the case thus far for him (knock on wood)!

This week seems to be getting busy, as I'm preparing to leave on Sat. morning, so I'm trying to get things in as much order as I can before leaving (which of course includes a little bit of shopping!).  We're both kind of nervous about it, but we know he'll be in good hands:)  It's a bittersweet thing...Brian will miss me and of course I'll miss him, but it will be great for me to be back with the kids at our house... and unfortunately I have that thing called work to get back to.

We now have a mailbox here but of course we left the address upstairs in our room...we'll include it on the next blog entry!

Day +16 spent in Central Park (well some of it).

I am really tired generally and I had my first visit to outpatient clinic post transplant. I would have bet my hemoglobin was low and I might even need a transfusion but it had gone from 7.7 to 8.8 and platelets had gone from 32 to 53! So no blood products needed...I'm just tired! And I guess 16 days post transplant, thats okay. After lab we went to Central Park found a tree with shade and sat and ate and chatted. Alysa a friend from KC is here for the weekend so all 3 of us got to spend over and hour sitting and enjoying the park!
This evening Kristy and Alysa are going to see a show which should be fun. I have planned a very quiet evening, today was great but I am bushed! I haven't any photos with me right now but we have some nice ones and will post them soon.
Thanks as always for the notes of encouragement.

Day +14 and I'm leaving for Hope Lodge

Hope Lodge found a room for me so I leave today! This is about a week earlier than planned so I am pretty happy. I still feel tired but that is just a combination of drugs, low hemoglobin, a hospital bed and getting up at 5.30 - if only I could jump on a bike at that time I'd be a very happy boy.
MSKCC has been great, the nurses day and night are really great and everyone else have also been great. Having said that I hope I never stay here again!
The outpatient lab will be a twice a-week trip from now, but that is fine. Staying outpatient is my plan. Today I finished opening the cards Kristy secretly organized for me. Thank you for the words or encouragement it was a fun thing to do every day.
So now the next phase begins, Hope Lodge will be my home for the next while and hopefully I get stronger and stronger there. Staying infection free is the plan and letting my body heal.

Day +12 Out for an early walk. Sept 17th.

Well I had 2 nurses come into my room this morning pretty excited about my 'number', before I could guess they said 4.8, my wbc is 4.8! So I was going to be allowed out and though I didn't have any other numbers, went rooming for the first time in 14 days. 6 quick circuits of the floor before 7.30.

Other numbers are ANC 3.5, Hgb 7.4, Plts 15 and creatinine 1.5, so no transfusions today.
I have been very tired today and napped between visits from Bob and Matt.

There is talk that I could be transferring to the Hope Lodge by the end of the week which is amazing!
As long as I keep drinking and eating and don't get an infection. No more neupogen shots so we'll see how my wbc does on it's own.

Day +11 Good pain, hurts less than bad..

Okay numbers first: Wbc 1.3, Hgb 7.2, ANC 0.8, plts 13 and creatinine 1.4.

So I had little sleep last night because of bone pain, the good pain which meant my wbc was growing and my marrow was starting to work. By tomorrow I will be able to walk the hall on my unit because my anc will be over 1.0. I've been confined to my room for 14 days! So that should be fun.

Also Dr Jakabowski predicted that I might be able to move to the Hope Lodge by Wednesday! I can't believe how quickly this seems to be going. My body still feels pretty tired but it is getting better. Hopefully I keep clear of any infections and keep eating so Midweek is at HL.

Day +10 Nothing to see here..

As the title says things are nice and boring here. I got washed Platelets yesterday and needed them again today without any drama. My wbc started the day at 0.2 (around 5am) and they checked it again at 5pm and it's 0.7, so that seems to be going well, Hgb started the day at 7.2 and for some reason this evening it is 8.2, if anyone can explain that - let me know. Platelets started out at 8, I had the transfusion and they are now 21. My creatinine went up to 1.5 this evening which concerns me but they also cut mt IV fluids earlier in the day thinking I was able to drink more than I can. So hopefully it steps back in to line by my next blood work. Sorry this is all very boring - but it is my day and I guess fussing over the little things is better to have more to worry about.

Bob came in to hangout again today, it was nice to see him and chat, I also got to Skype Kristy and the kids, Helen, Dad and Ben and Pauline and Richard. So not a bad day all in all.

Hair is all gone again. Photo: H Singh (tech)

So as long as the extra IV fluid brings my Creatinine down I'll be happy!

I met an Angel today

Patricia & Kristy outside my room.

My angel.

Today I got to meet a lady called Patricia Walka, she is an administrator here are MSKCC. Both Kristy and I had spoken to her at length on the phone. It was she who after all the appeals to insurance failed and calls to employers and anyone else we could think of failed, decided to find a way to make it happen because she knew our family needed this.  She fought on our behalf with insurance along with Kristy to get them to commit to as much as possible. But when insurance fell short, she made sure I could still have the transplant through a fund for the under insured. She made the difference, between it happening and it not. I could never thank her enough for this chance she has given me to live a long normal life. It may not happen that way - but I have a chance.

Day +8 and all is well...Platelets are a little iffy though.

Top of the morning to you! Feeling great again today, actually thinking of making a run for it and find the path by the water Kristy has been running on.  That is my dream at the moment. All going well I should be allowed to walk around the 25 bed unit in a few days. I started neupogen shots yesterday, I thing they are to remind my WBC count to start up again so maybe in a few days I'll see a count other than < 0.1.

I got Platelets yesterday and I always seem to have issues with them after a few transfusions. So in case of any problems they pre-med me with 25mg Benadryl, 50mg Hydrocortisone, 20mg Pepcid and 650mg of Tylenol.  Well yesterday I had a reaction starting with my eyes - they started to get scratchy so I checked in the mirror to see if my eyelashes were falling out and getting stuck in my eyes. Well one look told me I was reacting to the platelets. My eyes were red, swollen and watering and wanting to close. I mentioned it to Pam my nurse and she had an NP look at me. By this time my hands were itchy and I had a rash and some hives. So next time they are going to 'wash' the platelets before I get them, they say it cuts down on plasma and other 'stuff'. It's all beyond what I understand so I'll trust that their 'cleaner' does a good job!

My hair has started falling out so I shaved it all off...not really a good look but it will have to do for now.

Thank you Patrick and Katie for the t-shirts!

Day +6

Well, it's been a couple of days since the last blog post and thankfully there's not much to report.  Brian ended up needing another platelet transfusion yesterday for a platelet count of 9, but didn't need any transfusions today.  Today his counts were: WBC 0.1, hemoglobin 8.5, platelets 19, and creatinine 1.3!  His hair started falling out yesterday, so we shaved it off today - hopefully we'll post some photos tomorrow.

He's still getting anti-nausea medication around the clock, and typically it allows him to eat pretty well after taking it so that's good.  Tonight he still felt too nauseated to eat, but thankfully that's the exception for him and not the norm.  Tomorrow they start him on Neupogen injections, which will help his white blood cell count to increase and therefore protect him against infections.  This is the beginning to having his counts recover and be stable so that he can be discharged from the hospital - very exciting!

Day +4

Today was another fairly uneventful day.  Matt Long came by to hang out with Brian for a little bit(thanks Matt!) while I was being treated to a NY Jets game by my friend Kara!  Right now it's late and I'm pretty tired, so I'm going to keep this short...

His counts today were: WBC 0.1, hemoglobin 9.2, platelets 5, and creatinine 1.4.  Needless to say, he got another platelet transfusion and all went well.  Not quite sure when hemoglobin will start dropping, but we're not really gamblers so we're just taking it one day at a time and thankful for each day that he doesn't need a transfusion.

Today was also James's 4th birthday!  We were very sad to not be with our son on his birthday, but we got to sing to him via Skype and that put a smile on his face!  If I had a glass of wine right now, I would be raising it to having many more birthday celebrations together as a family - that's the whole point of this transplant...to continue being a family for many, many years.  So although missing one birthday was difficult, in the big scheme of things it's worth it if it enables us to have many more than we otherwise would have.  (I hope I'm making sense at this late hour!)

Day +3

Today Brian and I reflected over how differently this transplant is going thus far compared to his last one...it's amazing because according to all of the textbooks and what the doctors have said, an allogeneic transplant (donor cells from another person - the type of transplant he just got) is a much rougher transplant to get through than an autologous transplant (your own cells - the type he got 1.5 years ago).  Well for Brian, this has not been the case at all...he had so many complications with his autologous transplant from the very beginning that really seemed to set him back, and so far his allogeneic transplant has been completely straightforward and he is surpassing everything the doctors hoped for in regards to eating, drinking, exercising, etc.  It is so refreshing for both of us - obviously for Brian this has been so much better than he expected, especially in terms of how he feels physically.  But for me it's also been such a relief and so much less stressful to not have to have the threat of dialysis thrown at us every day.  We know the next 6 months to a year are crucial in terms of not getting infections, etc., but so far he's just coasting right along and we're hoping that this is a great start to a fresh beginning!

Today Brian started to feel a little bit more fatigued than he has the past few days, so I'm guessing his hemoglobin will start dropping soon.  He did not need another platelet transfusion, but just barely - his platelet count was only 11.  He'll definitely need another one tomorrow, but that's ok he handled the first one just fine.  The last several times he received platelets in the spring of 2011 he had reactions to them - hives and chest tightness - so now he gets premedicated with Benadryl, Tylenol, and steroids.  Yesterday went just fine, so let's hope that whatever he needs in the next couple weeks continues to go just as well!  His counts today were: WBC 0.1, hemoglobin 9.1, platelets 11, and creatinine 1.4.  Although he didn't get a platelet transfusion today, I've included photos of his transfusion from yesterday...I having a "girls night out" with a couple of girls, so I didn't get to do the blog.

"The goods"

Relaxing in bed while getting tanked up on platelets:)

Day 2 and all is well.

Well an uneventful day, which is nice. A nice if not huge thing for me was that I went from 2 to one IV pump. I'd just never had to have 2 pumps in the past.
I am eating enough that the TPN consult (IV feeding) people said they don't need to see me unless things change.
My platelets were down to 6 today so I got a transfusion as expected, with plenty of pre-meds so all went well.
Blood is fine and creatinine is still 1.4. I hope it stays there now, I can't see any reason why it would go crazy. My experience with this transplant has been so different so far (don't worry I'm touching wood), it is a nice change for sure.
Nothing else to say, I am a little tired this evening, so for now I bid you adieu.

Day +1...and so the journey begins

Brian had another good day today!  He woke up this morning, took a shower first thing, put on his 'runners', as he calls them (AKA 'running shoes'!), and had a nice cycle on his peddler.  The swelling in his hands and feet has gone down and the rash is gone.  The painful neuropathy is still there, but the doctor hopes it's just temporary since he never had painful neuropathy before.  He's experiencing more heartburn due to the mucositis in his esophagus, but so far no mouth sores.  Counts today were: WBC 0.1, hemoglobin 9.1, platelets 16, and creatinine 1.4.  I would almost put money on him needing a platelet transfusion tomorrow morning...but that's fine and it's all expected.  I'm surprised that his hemoglobin is hanging in there - I'm wondering when it's going to take a downturn.  I guess only time will tell.  We are both still so thankful that his kidneys have decided to behave - he doesn't even have a renal consult!

So what is the next step, you might be asking?  First we wait for the new stem cells to start growing in his bone marrow and start producing new blood cells - white blood cells, red blood cells, platelets, and plasma.  This is called the Recovery Phase.  After that, he just has to maintain, which means frequent blood draws to make sure his blood counts are staying at an ok level and also means staying clear from infection.  They say that his immune system will be like that of a premature infant.  He will be at a high risk for infection for the first 6 months to a year, so our goal will be to keep him as healthy as we possibly can.  This means not going out in crowds, staying away from people who are sick, not eating out, etc.  It will be interesting to see how things go with both kids in school...

Many of you have asked us how the kids are doing - I am happy to report that they are doing just fine.  My parents are keeping them very busy...I'm just hoping that it's not too exhausting for them.  There have been lots of family events over the past two weekends due to birthdays (my grandma turned 90 this past Sunday!), so they've really been too busy to miss us much.  We try to Skype when we can, but it's like pulling teeth to get to talk for more than a couple of minutes - they're much more interested in looking at themselves on the computer screen than in what we have to say.  Oh well, it's hard for us but at least they're happy!

Transplant Day

We're finally here!  It seems as if this day has been looming over our heads for so long and now it is finally here.  Today started off pretty slow (must be the dreary, rainy day...) - doctors didn't round until about 11am and it seemed as if all of the staff were sort of in slow motion all morning.  Brian is starting to feel the cumulative effects of all of the chemo, therefore he's not feeling 100%...so his patience with the nurses (and me) was a little short at times.  He woke up with some swelling, new nerve pain, and a slight rash on his feet so he didn't really feel up to being out of bed much today.  They think it's from the thymo/ATG he received, so they said they aren't worried about it, they'll just be watching it.  The thymo is given with a whole bunch of steroids, so they think it's flared up now because he hasn't received any steroids in a little over 24 hours.

His counts dropped again as expected today: WBC 0.1, hemoglobin 8.9, platelets 27, creatinine 1.4.  Once again he was ecstatic that his creatinine dropped!

Dr. Sauter holding the "liquid gold"

He received his stem cell transplant at 5:48pm tonight.  It was all very anticlimactic (as we expected) and only took 2 minutes to infuse.  Because it was T-cell depleted it was a very small volume, only about 20 ml in all...crazy.  The nurse practitioner told us that the stem cells should circulate in his blood for about an hour, and then should be in his marrow.  I'm just amazed at how this all works...one of medicine's modern miracles I suppose.  Here are a variety of photos of the stem cell transplant/infusion (sorry for the messiness of the layout - I can't get the photos to do what I want!):

Dr. Sauter and the Nurse Practitioner double checking the cells

 

 

The Nurse Practitioner giving him the actual transplant

Brian took video footage of the whole thing!

Close up view of the cells

He had an audience - Dr. Sauter, the NP, 2 residents, his RN, and me.

Rest Day

Looking great and flashing his charming smile!

Today was Brian's "rest day" which means he did not get any chemo nor did he have his transplant.  It is a day for the chemo to get out of his body so that he is ready for the stem cells tomorrow.  For the most part, he had a good day.  This morning he started his day with some push ups and squats!  The doctor and nurse practitioner were pretty surprised by this...it's always good to keep them on their toes!

His counts dropped quite a bit today, which was expected due to the ATG he received yesterday.  Here are his "stats" for today: WBC 0.1, ANC undetectable, HGB 9.7, platelets 39, and...drum roll please...creatinine 1.5!!  I have not seen him smile quite so big as when they told him his creatinine - what a relief that his kidneys are "playing ball".

As far as the events for today go, there were only 2 unusual things that happened.  First of all, he had a breathing treatment called Pentamidine (see the photos of him in the plastic tent), which is an inhaled antibiotic to protect him against PCP pneumonia.  Here at Sloan Kettering they do Pentamidine for everyone during this phase of transplant because the 2 other main medications for PCP pneumonia have the potential to suppress your bone marrow, so they take every precaution to avoid suppressing the marrow for longer than necessary.  He did these breathing treatments in Kansas after he lost his graft and had to be re-transplanted back in April of 2011, so these photos might look vaguely familiar to many of you.  The other thing that happened is his primary physician here, Dr. Koehne, came by to check on him and see him.  We haven't seen him since his last doctor's visit, so it was nice to see him again and chat for a little while.  We made sure he saw all of the pictures of our kids up in his room so he knows how important it is for Brian to make a full recovery and get back home to those darling kids of ours!

Getting his Pentamidine behind a plastic tent

This evening he has started feeling the effects of the chemo...he has a slight sore throat, is pretty tired, and has a little headache.  I'm guessing tomorrow he will not be quite as spry and will likely not be doing push ups or squats.  But all in all things are going well and we feel extremely fortunate that he's been feeling so well the past few days.  Yesterday the nurse practitioner told us that most people have already stopped eating and drinking by this stage, so I think Brian is doing remarkably well considering all that he has been through.

Still feeling okay, but not for long I'm told...

Walking Sept 2.

Brian here, I had a couple of rough days where I was pretty out of it. 10 rounds of Busulfan,  4 days of Fludarabine the 2 days of Melphalan and now I've got through the first of 2 days of Rabbit ATG - this brings down what is left of my immune system and destroys my own T-cells. I spiked a fever of 102ish yesterday and am continuing on antibiotics. I slept most of the afternoon, but  felt better in the evening. So just one more day of Fludarabine and Rabbit ATG before the transplant. I ate the bacon out of a sandwich and some other less interesting food for dinner. We walked the halls again thinking it may be my last time my ANC would allow (when it goes below 1 I have to stay in my room). So here's a picture of the very walk. I get ATG again today it normally goes in without a fight the 2nd time so it should be a quiet day. I did notice my resting heartrate sitting here in bed is 120, so that's a little high and maybe a reason I haven't been sleeping. Everything else
on target I think. Got my counts while out in the halls this morning and they show thst this is my last steps out here for a while.
WBC 0.5
ANC 0.5
Hgb 10
Platlets 65
Creatinine 1.6 - very pleased about this number at the moment!

Almost there

Sorry for the delay in posts...I ended up getting really exhausted and going to my aunt and uncle's house in New Jersey for a good night's sleep last night.  11 hours of sleep (with no mask or gloves) later I feel much better!

Today Brian has started his final drug called Rabbit Anti-Thymocyte Globulin, Thymo in short.  Yes, it's from a rabbit's blood and it is made of antibodies that function as an immunosuppressant to suppress his T-cells so that they don't attack the new stem cells.  This drug has to be infused over 12 hours both today and tomorrow because of the side effects that it can cause - mainly fever, chills, and rigors (shaking).  So far Brian has tolerated it well.  They have been able to titrate him up to the maximum dose and he hasn't had any side effects yet, except just in the past 20 minutes or so he's started to feel cold.  This means that he will likely get a fever and have rigors soon, but we'll see...

As far as his counts go,  things started to drop today.  For those of you who are interested in his "numbers", here they are: WBC 1.6 (down from 2.6 yesterday), ANC 1.4 (down from 2.5), Hemoglobin 10.1, platelets 95, creatinine 1.6.  We're so happy that so far his creatinine is holding stable!  Thank you for all of your prayers and good thoughts over this!

The past two days have been fairly uneventful thankfully.  Brian has actually felt a little bit better, so has been able to walk around and eat a little bit.  It was a good time for me to get away and take a little break.  The biggest thing that happened is that we changed rooms yesterday so now we have a room with a view.  It's cloudy and overcast today, so I will post a picture once we can get a nice, sunny one!

Quick update

I wanted to post a very quick update (I'll update more later) that Brian developed a fever last night and had to have blood cultures, a urine culture, and a chest x-ray done.  He still has a slight fever this morning, so he's on 2 IV antibiotics (Vancomycin and Zosyn) along with his antiviral and antifungal medications.  Pretty soon he's going to be bionic!  He's still very tired but seems to feel a little bit better than he did yesterday.  The doctor came in and said that the chemo he's on right now (Fludarabine) is very well tolerated and so he might even regain his appetite for a few days before everything starts to hit rock bottom...we'll see.  Last night was a very rough night, they were either in here checking his temp and other vitals or his IV pump kept beeping all night.  I don't think either of us got more than 1-2 solid hours of sleep.  Brian's sleeping again right now and I'm going to try to go back to sleep, so if you try to call us and we don't answer, that's why.  Brian is really not up for phone calls these days, so if you send him messages via email I can read them to him.  Thanks to everyone for all of your support!

Halfway point...of chemo!

We're halfway done with chemo!! Today he got his 2nd, and last, dose of Melphalan and he also got his first of five doses (one per day) of Fludarabine...so 2 down, 2 to go. Counts are still fine, actually went up today which is kind of weird, but we'll take it. And creatinine is stable at 1.6 for now.

Today started off rough - the first thing he did when he woke up was vomit...no fun. But after that they've been pretty aggressively managing his nausea, so he's actually been sleeping most of the day. I'm confident that he will NOT remember these next few days due to the antinausea medication (Ativan) causing him to sleep and also having that lovely amnesic affect. I, on the other hand, will remember it all. I've often said that they should also seriously consider medicating the caregivers:)

What's missing from this picture?  His IV pole!!  He was free
and then tuckered out after his shower.

Not much really happened today.  The most exciting thing was that they changed all of his IV tubings, so he got to shower without the IV pole. This only happens every 4 days, so he took a nice, long shower and enjoyed it.  Also, we ordered some photos to hang up on his walls and they arrived today, so I got to decorate:)  Tonight my brother, Zach, is coming into town and we're going to have dinner together to celebrate my birthday (which is tomorrow). I'm really excited to see him and to have a little fresh air along with a nice glass of wine!

And a decorated cabinet, too.

Our decorated bulletin board

 

1 down, 3 to go

Eating ice chips!

It's Kristy writing tonight - Brian is fast asleep in bed...that means you'll get a lot more detail from me:)  Today had some ups and downs, and is definitely the start of the downhill spiral towards not feeling good.  He woke up this morning feeling nauseated and even requested a dose of Ativan for nausea.  After that kind of "kicked in" he went for a walk around the unit and had a good afternoon.  He just needed to get over the morning hump and then he was fine.  He got his last dose of Busulfan at about 12 noon (yay!) and then started his second chemo, Melphalan, at 3:15.  He had to chew on ice chips for about 1.5 hours before, during, and after the infusion in order to decrease bloodflow to his oral mucosa and therefore reduce the likelihood of getting mouth sores.  This is the one that caused him to nearly need dialysis after his last transplant, so we're hoping and praying that doesn't happen this time.  There are 3 big differences this time that are in his favor: 1. He is getting a slightly lower dose this time since he is receiving it with 3 other chemo drugs, 2. His baseline creatinine is much lower than it was last time, and most importantly 3. His disease is under much better control going into this transplant than the last.  So we're keeping our fingers crossed that his kidneys cooperate with us this time and don't make things too exciting any time soon.  All of his counts are still fine, so no transfusions needed yet.  Today is the first day he hasn't really eaten much...things are starting to taste funny and food just doesn't sound good to him.  But he's still drinking a lot, which is more important.

 

I look scary and alien-like while alseep!

Many of you have asked how I am doing, sleeping, getting on, etc.  First of all, thank you for all of your thoughts, texts, emails - they really brighten up my day!  I am actually doing ok.  I am sleeping much better than I expected to sleep on a recliner, which is a huge bonus.  The recliner folds out completely flat and I brought ear plugs and an eye mask (and sleeping pills) to help me along, so I'm actually doing great.  The hardest part is learning how to sleep with the mask and gloves on...but slowly I'm getting used to it and sometimes I don't even notice the mask anymore (except behind my ears where the elastic bands rubs).  I'm getting out every day and going for either a walk or a run - this helps my sanity tremendously, plus it's keeping me healthy.  Today I went for a 3 mile run along the river and it was absolutely gorgeous.  It was perfect - 80 degrees and sunny, and I had a lovely breeze off the water keeping me cool.  If I could replicate that every day I would, it really was wonderful.

View on my run along the East River

Once more into the breach dear friends....

Well today was fine, lots of walking the halls as I'm guessing by tomorrow my ANC will be under 1.0 and I will be confined to my room. I have noticed this evening the chemo is starting to show, I ordered dinner but have no interest in eating and fatigue has also begun. I took a nap this afternoon and didn't wake when Kristy came in. Tomorrow is more Bulsulfan and the start of 2 days of Malphalan so I expect it to get much harder pretty quickly.
Matt came by today it was nice to see him, he brought speakers, so I now have music!
Not looking forward to the next week or two, but I guess I need to go through them to get back to my kids, hopefully for a long long time.

MSKCC my home for the next 4 weeks or so..

Got here about Midday having spent the morning walking the High Line (highline.org) down to the West Village and back through the streets, all told about 5 miles.
Here is my room..

It is pretty nice plus the chair I'm sitting in folds flat and will be Kristy's bed...we'll see how comfy it is tonight. I start one medication tonight and chemo at 6am tomorrow. They check vitals every 4 hours so 2am will be a blur I'm hoping! The unit has 25 rooms and I've seen a lot of bald people...so I guess the chemo works. My doctor on the unit is Dr Sauter - seems like a nice chap. Dr Koehne will be by tomorrow for a 'social visit'.
This is how Kristy looks for the next while..

Whenever anyone is in my room they where gloves and mask. So I have no idea what anyone looks like! The 'bike' they promised me is a bit of a let down, however sitting in a recliner while cycling will be about as good as I can manage I'm told...

Not quite a Madone..

So we've made the most of our time in the city while I've been well, now it's time to get down to the business at hand.
Thank you for all the well wishes and cards, Kristy is letting me open one per day.
Oh my my nurse just brought in my IV pole, it's got a lot of 'stuff' on it..and it's all for me!

Special delivery for Brian!

Well we're here...

Well we’re here!

We are staying at the Hope Lodge on 32^nd St while I have some tests done and will be admitted on Sunday.

So far so good, however because of all the insurance appeals etc. took so long I had to repeat some of the tests for my work up. The most annoying/painful was another bone marrow biopsy. This time he had to try a couple of spots as my bone was too hard for him to get through initially…and I believe I get another one 30 days post transplant!

Hope Lodge is great – the people and the place are lovely and to think it is free through donations is absolutely amazing!

Tonight Kristy and I are going out to celebrate her birthday early. One of the stops on this evening schedule will be the Campbell Apartment at Grand Central Station.

This will be my street for a while once they let me out of MSK

Bright and early tomorrow morning I have my line placed as long as ‘placed’ involves some sharp cutting instrument…I remember last time I was a little too chatty for the doctor doing the procedure, I think I may have got extra drugs to keep me quiet!

See you soon!

So we are nearly off to New York, everything is in place, now all we have to do is get through the good byes! I did have a little blip in so far as I had a KLC (kappa light chain) blood test a couple of weeks ago that showed I was coming out of remission, the kappa light chains went from 1.38 to 1.98 in a week. However, a test last Wednesday (results today) showed it is back down to 1.89 - so no problem.
Some people have asked if we have an address while we're in NY. We thought it best not to test the hospital postal system, so the address below is our cousin's address that we'll be using until we get an address at the Hope Lodge:

Jennifer Hutz
c/o Brian Delaney
68 Conselyea
Brooklyn, NY 11211

I'm sure I'll say it again but - thank you to all who have said or sent words, prayers or good vibes to me and my family. I truly have been blown away by all the help and encouragement we have been given.

I wanted to mention the two donation links on the blog, I really don't like asking for help - especially for money. It is there because people asked for ways they could send us money. I want people looking at this blog to do it to see how we're doing and to keep us in your thoughts. When I'm looking at other blogs I always feel a little guilty when people have a 'link', and I want to say now please don't feel that way. We have been amazingly lucky to have great insurance and MSK (Memorial Sloan Kettering) have also helped us bridge the financial gap when insurance refused to pay for the transplant (with financial aid). I (and a carer) will be staying in the Hope Lodge in NYC for up to 5 months, and that is provided free of charge. We still have expenses for sure, as Kristy is off work unpaid right now and then will have to go part-time when she comes back. Friends and family have been incredibly helpful...so just to say, the 'link' is there for people who want to help in that way, but just by checking my blog and sending words of encouragement, you are helping.

People have asked how I feel about the transplant - well, to tell you the truth...We've done our research and we know this is the best chance for me. I am not dwelling very much on what is to come as to do so is pretty debilitating. Leaving the kids - I just can't think about, we have prepared them and us as much as possible and why start the pain and tears early! The transplant is what it is...no fun and all we do is get through it as quickly, intelligently and carefully as possible. Having said that I am really interested in the process and the technical details of what happens to me. However not feeling great makes it a little bit difficult to track with everything. I'm bringing my camera so I will hopefully document some of what happens but through experience I know it is difficult to do that when you're not feeling great

I'll take a pic of my room when I get there!
Brian.