Breaking through the Glass Ceiling

Tyler's blood counts on Saturday morning proved that he has broken through his glass ceiling.  His total white blood cell count (WBC) was 1.0 and over half of those were neutrophils (ANC)!  With a ANC of more than 500, Tyler is less at risk for major infections.  He gets to drop two of his antibiotics, so he has fewer pills to take.

There isn't too much change other than that, but we are celebrating by taking a 3 day weekend!

Climbing the Hill

Great news from today's doctor appointment!  Tyler's neutrophil count is up to 420!  Once he gets over 500 neutrophils, he will get to cut down on some medications and eliminate some of his current activity restrictions.

He is feeling pretty good and starting to add more foods into his diet.  His doctor says that Tyler can try to start getting some exercise, so he'll be working on that too.

Hey Everyone!

My wife informs me that my friends and family may want to hear from me, and I agree. Ive been home almost a week now, and for the most part things have gone pretty smoothly. I had to go into SCCA on saturday for platelets, but I actually had made a couple on my own....a really good sign! My next blood test will be on thursday, and hopefully my WBC count and neutophils will have increased. Right now I have to be pretty careful about what I eat, and I have to avoid situations that could cause me to get sick or get some sort of infection. Ive been out once to play golf at the driving range chip and putt course, and for the next few weeks/months that may be all Im able to do while my Hickman central catheter is attached.

Sleeping has been a bit of a struggle with my mouth still producing quite a bit of saliva. I have to tote a spit cup around with me wherever I go. I can still only eat soft or liquid type foods like soups, mac n cheese, yogurt, etc...Mandy makes some really good smoothies also which add some good protein. As always Mandy and my mom have been incredible lookin out for me, and making sure I do the right things. I know Mandy really wants me to get out and visit, but I really need to wait until my neutrophil count is at least 500. Neutrophils are the most healing part of the WBC and right now my overall count of WBC is 360 with neutophils at 130 as of this last saturday.

Until I can get these counts to increase Im kind of trapped at home, and ocsssionally get pretty bored. Mandy has given me a honey dew list, but none of the items on the list seem much fun :).......but they are things that need to be done. I watch my golf on thur-sun in the afternoon, and keep an eye on my fantasy baseball team. Doing much better with golf than b-ball right now. Im hoping to get out with some friends, dad and brother to either play at the par 2 course or even get out and watch from a cart if anyone wants to play a round of golf. I can pay a trail fee, and be a caddy until I can take full swings again.

I want to thank everyone for your continued support, amazing comments, and I have to tell you that it really helps! My time in the hospital was about what we expected with some pretty tough moments with the first few days losing lots of blood, and a few weeks of mucositis. Fortunately it wasnt as difficult as back in 2008. We have a few options for our next course of action including another transplant.....this time with my mom. If that were to happen I may be one of less than 5 in the world to have received marrow from both parents. I guess thats okay....I love them both very much, though I would prefer to live through them in a much different way. In the next few weeks after my counts get better, we will begin to formulate our next course of action and hopefully my marrow, spinal fluid, and blood remain clear of any disease. It is very likely it will come back at some point, so the goal is to get our plans in order before it attacks again.

Its been far too long that Ive posted, and hope to do a better job in the near future. Take care and I hope everyone is enjoying this late spring/early summer approaching!

Tyler

When does 1 + 1 = 3 ??

I recently read an article about some research on combining Gleevec with another drug completely obliterate leukemia.  As we look for treatment options for Tyler, I can't help but wondering if something like this would be a good option...

The Yellow Brick Road

This morning, the doctors asked Tyler when he wanted to go home.  Tyler said "tomorrow," so they spent all of Tuesday preparing Tyler for a Wednesday departure.  Can you believe it?

After a long voyage through "Oz", Tyler is finally on the Yellow Brick Road towards home!!  Farewell, UWMC!

Hallelujah!

The doctors gave us the best news today!  Tyler FINALLY had white blood cells!  He had .110 count today, with the normal range being about 4.3 - 10.0.  It's a small amount, but definitely a step in the right direction.  Now that he has white blood cells coming in, his healing should actually speed up too.

He's had a decrease in the pain in his sides too, so we are dancing in the halls of UWMC!

MRI Results

Today marks the last day of our first month in the hospital.  We were prepared to stay this long, but hoped that it would prove true.  There is still no sign of white blood cells (WBC), which is one of the things keeping us here.  I checked the blog history and found that Tyler's first brush with induction therapy had us waiting 2.5 weeks from the end of chemo for the WBC to return.  We are just a little bit over 3.5 weeks now, although it seems much longer.  Since the body is much more sensitive to treatments after a bone marrow transplant, this is not totally unexpected.

Tyler had another MRI on Tuesday, so I have been anxiously awaiting the results so that I had something to post about.  The doctors said that his marrow looks like it has more fat in it now (I didn't know you had fat in your marrow), but the chloromas are still there.  We were hoping that they had reduced in size after the potent treatment Tyler had last month.

On the upside, he has had a series of relatively good days recently.  He had been flirting with beverages for the last few days (juice, jello, smoothies, milkshakes), but today he branched out into the territory of Cream of Wheat and ENJOYED IT!  He says eating or drinking cold things causes his throat to sting, but the cream of wheat slid right down without any pain.  I'm delighted that he had a good breakfast!

Temper Tantrums

I don't know why, but this morning I seem to be throwing a temper tantrum.  It's just not FAIR!

While I am thankful for the many blessings in our lives, I am also envious of those being denied to us right now.  The simple pleasures of sleeping in our own home or eating a meal together seem so very precious when they are denied.  We are approaching the end of a month solid in the hospital and are both extremely tired of this. Tyler can hardly sleep at night because of worries that he will choke on his own saliva.

We really just want to live a normal life!  In fact, boring sounds quite wonderful...

Thank goodness we had a year or two together before we got married, as our entire marriage has been overshadowed by this darn battle with leukemia.  Sometimes we can forget about it for awhile, when Tyler is feeling good and strong.  But it seems like we are always drawn back with a new outbreak.  In fact, those relapses seems to happen anytime I want to travel....  Do you think Tyler is trying to tell me in a subtle way that he doesn't want to travel as much as I do?

I am envious of the family and friends who have started families of their own and are watching their children grow.  We would love to have a family, but treatments have made that unlikely without adoption and our lives are really too crazy right now to add more complications in...

Tyler is sick of being stuck in the same room, mostly in bed, every day.  I am sick of wrestling with whether or not I am making the wrong choice every time I am doing something other than being with him in the hospital.

I know everybody has their own demons and that no life is as easy as it looks.  But for today...  I am thoroughly disgusted with our personal battle and would love to call a cease fire for a few years (or decades?!).

Getting a Good Buzz

Tyler got the rest of his hair shaved off today.  He actually picked all of his facial hair off last week, eliminating the need to shave.  He had a really great attitude about it, but I think that losing your hair must be a little bit hard on any cancer patient.  It is the most visible sign to the world that you HAVE cancer or are sick.

Luckily Tyler has a really nice head and looks as good bald as he does with hair!  I"ll try to post a picture of him soon.

Still no signs of those pesky white blood cells!

Future Treatments

One of the tough things that we learned this week is that there aren't really many treatment options for Tyler, even after we get through with this.  I am not really certain how to deal with this news yet, but here is what we have learned:

1. Donor Lymphocyte Infusion: One of the options for Tyler was to give him more of his Dad's cells to try to boost up the transplant and increase the Graft versus Leukemia effect.  After much testing at the SCCA, they have determined that this will not work.  Tyler's leukemia has figured out how to mimic the donor cells to avoid being killed off.  Basically, Tyler and his dad are getting along far too well.

2. Clinical Trial:  Another option that we were considering was a clinical trial for one of the fabulous new drugs under development.  Unfortunately, the drug companies will not take Tyler as a candidate for their study because of the central nervous system involvement.  If we can prove that Tyler's spinal fluid has been clear of leukemia for at least 3 months AND all of the chloromas have disappeared, we might be able to beg our way into a study in the future.  We're not sure what to do in the meantime though to keep Tyler's disease under control until then.

3. 2nd Transplant with a new donor:  This option hasn't been completely ruled out, but still isn't a real strong possibility.  Basically, the conditioning regimen to prepare for transplant would be tough on Tyler in his current state and make it harder for him to come through the process successfully.  Additionally, it takes time to find a bone marrow donor.  There just aren't enough people on the registry to make an easy match for everyone, and Tyler was told with his first transplant that he would be tougher to match.

So right now, we continue to work towards getting Tyler healthy enough to come home.  After that, we don't really know what we will be able to do to keep fighting a particularly nasty disease.  Here's hoping some inspiration comes in the next few weeks!  Our goal is to get him home and get him feeling a little bit more normal so that he can actually enjoy some of his time, while still fighting the battle as long as we can.

With all that we have learned this week, I would say that prayer for a successful treatment option would be especially appreciated.  Many thanks for sharing this journey with us and helping us to continue fighting.  We are touched by the thoughtfulness of the family, friends, and even strangers that have encouraged us in our battle.