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!)