Hope

Hope. What a great word. It is a universal feeling, and something I have been struggling with the last few days. 

Until this evening.

This evening we met a woman named Hope. She had sent us a note saying she was going to participate in the Leukemia and Lymphoma Society Team in Training Fundraiser, and wanted to meet Alex. While researching blood cancers, she came across the post about Alex on the American Red Cross Blog, and was so touched by his story, that she wanted to feature Alex in her fundraising efforts.

We met with her tonight for coffee, and then dinner in downtown. It was a beautiful evening, and we enjoyed strolling down the street from the coffee shop to the restaurant. While Alex was shy at first, he really hit it off with Hope, and I think she really liked him too. She's a really great woman, and we thoroughly enjoyed our evening with her. 

Hope didn't have a direct connection to Lymphoma before. She does now. We are honored that she wants to run and raise this money for blood cancer research. It sure would be great if Alex's generation was the last to fight this terrible disease.

We have received so much love and support from so many people. We can now add Hope to that list. I sure like the sound of that!

Thoughts on Alex's Birthday

I've been having difficulty writing about Alex's birthday. It was a great day, and one that I will always remember. I'm hoping it is also the first one in a very long line of birthdays that he remembers. He tells me "Mom, that was the best birthday in the whole world". Yes Alex, it was.

I have been wrestling with what is holding me back about writing about it.  A few weeks ago, I saw a commercial for the American Cancer Society . Their new add campaign is great:

"A world without cancer is a world with more birthdays". What a brilliant campaign. It also brings me to almost sobbing tears every time I read it, or attempt to say it out loud. Why???

As a parent, I am constantly looking ahead, what to do next, what is on the schedule, and planning birthday parties. The very thought that we might not have made it to Alex's 4th birthday is overwhelming. If Eric and I hadn't been as concerned about Alex's strange breathing, or if his Pediatricians office hadn't been as diligent about finding an answer, Alex would have gone to sleep one night, and just not woken up. We were only a few days from that happening when he was diagnosed. The thought just tears me up inside.

I know that no one is guaranteed tomorrow, but I used to assume that Alex was going to have another birthday, and another, and another. I would look forward to the next birthday, with lists, and plans, and ideas on how to celebrate the big day. Now I too clearly understand that we are fighting for Alex's life, and we are fighting for those birthdays. I'll worry about planning the day when it gets close - for now, my focus is getting Alex to that birthday, and the next. 

As the American Cancer Society so eloquently puts it: "Happy Birthday is a victory song". 

I can't wait to sing it loud and clear to Alex every year for a VERY, VERY long time.

Flunking Counts

Today Alex had a Chemo appointment, instead of going to school.

Well, he flunked his counts - which means, no chemo today. His ANC was only 300, which means we need to be extra diligent about fevers. While his ANC was too low for chemo, his platelets and hemoglobin were not low enough to need a transfusion - but they were close...

I talked to the doctor about the rash on Alex's legs from last week. She looked at it, and said that she was not sure if the rash was from the PEG Asparaganaise, or from the sunscreen, or from something else...? So, the next time his is due for those shots, they will have all the emergency gear right there so if he has an alergic reaction - they can take care of it right away (I can't think about it too much, or I'll never get to sleep).

So, we will return on Friday to check Alex's counts. If they are high enough, he'll get the Vincristine and Methotrexate at the dose he got last time. He won't get the higher dose, because his counts were low enough at this current dose. If his counts are still too low on Friday, he'll get just the Vincristine, and they will skip the dose of Methotrexate all together. I really hope that doesn't happen.

Dr. Stork told me that it was not all that uncommon for kids to miss this last dose on the treatment road map. But I still don't like it...

His color is pale, and he is bruising much easier now - I hope he doesn't need a transfusion on Friday.

American Red Cross

I was contacted by the American Red Cross here in Portland, and they asked if they could put a link to Alex's blog on their blog to share our story.

Without the generous blood donors out there, Alex's road to his cure would be seriously hampered.

I checked out their blog, and was surprised at all the other things that the Red Cross does - check it out for yourself.

Thank you American Red Cross - you are literally a life saver!

http://redcrosspdx.blogspot.com/2009/04/alexs-battle.html

A Great Weekend and a Possible Rash...

Alex had a great birthday weekend. We had a scare on Friday night - he got a fever that hit 100.5 which is .1 degree above the "magic number" to call the clinic. The doctor told us to keep our eye on it, and if it went higher to call him back. Luckily, we didn't have any further phone calls that night. 

The next morning the fever was gone, so we proceeded to get ready for his birthday. His energy level was great for the first 45 minutes of bowling - after that he started to really get tired (that just may have been throwing a 6 lb ball over and over again...), so he just sat on Eric's lap unless it was his turn.

His energy level seemed to return after eating a few cupcakes and pizza (hmmm....I wonder why?), and he slept like a log that night.

Sunday, we ventured to the Tulip Festival, where he wanted to be carried a lot, and wasn't all that into playing on the kids rides there (soooo unlike him). I checked his temperature - it was fine. It was a sunny day, so we slathered him in sunscreen, looked at the tulips, and called it a day.

That night, we noticed a rash on his legs - this could be a problem - or not - we're not sure. I called the doctor back to discuss it, since Alex had received his PEG shots 12 days earlier. We were told that the PEG shots could cause an allergic reaction, which is why we carry and Epi-Pen with us everywhere we go. If it is an allergy to the PEG shot, he wouldn't be able to get it any more, and it is an extremely effective Chemo - so I'm hoping it's the other possibility - an allergic reaction to the sunscreen.

Our next Chemo appointment is April 28th, and I'll discuss it with the doctors then to see what our options are.

Also, I have a call into the doctors office to see about Alex's 4 year immunizations - do we just hold off all together, or are they delayed? His appointment is on Wednesday - so we'll see~ 

Passing Counts

Alex passed his counts today, which means that he didn't need a transfusion. Yippee! -- I think -- it's hard to get all excited about anything because:

A) Not making counts:

= Alex gets a break from the Chemo side effects (+)

= Alex is back to his goofy self (+)

= Alex's treatment is "delayed" (-)

B) Making counts:

= Alex is one treatment closer to his cure (+)

= Alex is one treatment closer to steroids again (-)

= Alex gets Chemo (+)

= Alex feels the side effects of Chemo (-)

C) Not needing a transfusion:

= Alex doesn't need to stay all day at the clinic (+)

= We worry that the Chemo isn't working (-)

D) Needing a transfusion:

= Alex's energy level increases (+)

= Alex has to stay at the clinic all day (-)

= Alex could have an allergic reaction to the platelets (-)

= We know that the Chemo is obliterating the cancer (+)

So, today we are experiencing both B and C. The positive and the negative aspects tend to temper our excitement about any treatment he receives.

One thing we know for sure; he is one treatment closer to his cure today - and that is the tipping point to Yippee!

Nothing by Mouth

Today is Alex's Chemo day - and this time there *is* an LP, so he can't have anything to eat this morning. So far, Tessa-Lynn isn't begging for food, so I'm trying to hold off as long as I can so Alex doesn't have to watch other people eat.

His energy level has been up, so I'm hoping we can avoid a transfusion today...I'll keep you all posted!

He gets Methotrexate in his spinal fluid, and then Vincristine and Methotrexate in his Port. He's my brave boy and tells me "the back poke doesn't even hurt mommy!"

Dark Circles

Eric and I noticed Alex is getting the real dark circles under his eyes. That usually means that his blood count is low - so I won't be surprised if our Chemo appointment on Friday includes a transfusion. His energy level was still up yesterday, so I could be making the dark circles out to be more than they really are...we'll find out on Friday - stay tuned!

Rebound

Alex is rebounding from the last Chemo nicely - although he is constantly thirsty - which is a side effect. Eric took Alex to the Blazers game last night, and he said they had to run to the bathroom 6 times during the game. Since there are much worse side effects than thirst and full bladders, we'll take it! 

Chemo kicking in

Alex's color is pale today - and his appetite is waxing and waning - the Chemo is kicking in again. I hope that he starts to rebound, and can make counts on Friday for his next round, and that he feels good on his birthday next Saturday...

Our Brave Boy

Today was the dreaded PEG shots in Alex's thighs. He was in remarkably good spirits as we rode the Tram up to the clinic. He made his funny Platypus noise (from a Disney TV show - Finnias and Ferb) for all the nurses, and was *so* brave when they did the shots - two long needles in his thighs - both at the same time.

After it was over, I told him that it was OK to cry - and he turned to me, and gave me a great big hug. No crying for him - he was so stoic - the nurses are constantly amazed at how well he has adjusted to all the pokes assaulting his body.

He's quite the trooper - we love him so much!

Relay for Life

A few of our family members are doing the American Cancer Society Relay For Life. This is the luminaria that they made in his honor.

The bag says: "We love you Alex", "I have Cancer, Cancer does NOT have me", "If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but hope? We have two options, medically, and emotionally: give up or FIGHT LIKE HELL."

Thank you so much Lisa, Rob & Maureen - your love and support of Alex means the world to us!

Doh!

We got to the clinic today, and Alex was actually really excited about the "sleepy milk" that they give him right before a LP (aka Back Poke) - it makes him feel dizzy, and he likes it ---ummm...should I be concerned ? :-)

The nurse looked at me funny when I told her "we're ready for the back poke" - I'm then told that I'm mistaken - there is no back poke today - Doh! So, no reason to fast this morning - double Doh!

After inhaling some cheerios and saltine crackers, Alex let the doctors do an exam, access his PORT, give him his Zofran, Methotrexate, and Vincristine, and then de-access his PORT. We then ate lunch in the cafeteria (a treat for him - not sure why!), and came home, where he is napping.

I got the "good news" that the LP is his "next" appointment on 4/17 - the day before his birthday - maybe he'll think the "sleepy milk" is a present from the doctors...

Sweet Hello & Chemo

I went to Salt Lake City with my mom to visit my sister over the weekend, and Eric stayed at home with the kids.

I just got back last night, and Alex was still awake. Receiving a "hello" hug, and getting to put him to bed was just joy for me.

This morning, Alex and I are fasting, since Alex has a "back poke" (lumbar puncture) at 9am this morning - and he can't eat anything until after the procedure. It's hard - our daughter is only 14 months old, and there is no way she can go until 8am with no food - so I have to feed her without reminding Alex that he's hungry. My mom will be here in about an hour, and then Tessa-Lynn can eat, and Alex and I will head up to the clinic.

Today, besides the LP, Alex is also getting two Chemo drugs through his PORT. The Vincristine makes his joints hurt, and the Methotrexate makes him nauseous. Tomorrow, we head back up to the clinic for the PEG shots in his thighs. I'm enjoying his energy this morning, and have to remember, that while he will be drained and feeling sick for the next week after the Chemo today, he rebounds fast - and our happy jolly Alex will be back before we know it!

...It's A Long Story

When we ask Alex about his school day, instead of saying "I don't know" when we query about what he did that day, he says "It's a long story, Mom (or Dad)." I have no idea where that came from - but it brings a large smile to our faces. It's his unique way of saying "I don't want to talk about it".

I think it is great that it's a long story - it means he did a lot. Every moment that he has to "add" to that long story is precious.

I hope that when I am an old woman, he will sit beside my bed and tell me that long story - filling my head and heart with the stories of his long. long life.

Cancer vs. Nurture vs. Nature

Everyone knows the old debate about children's personalities: "is it Nature or Nurture"? Living with an almost 4 year old with cancer, the debate going on in our minds is: "is it Cancer or is it Nurture or is it Nature?"

Since Alex is our first child, we don't have any frame of reference as to what is "normal" behavior for a 4 year old, and what is behavior that is being shaped by the chemicals raging through his body (some may argue NO ONE has a frame of reference, as each kid is unique...).

Are they distinct behaviors? Or, is one inseparable from the other and this experience will be part of his developing personality forever - the good and the bad. I tend to believe that the two are intertwined. That every experience alters us all - and going through cancer treatment, while also trying to define your very independence has got to be rough on anyone, especially a 4 year old.

We have been told that children who survive cancer become some of the most empathetic, amazing human beings. I can see that in Alex. Since we are part of a great adoption triad (adoptive parents, and adoptee), we were eager to see how much Alex grows up like his birth-family, and how much of our behavior is "contagious". At this point, who knows if it is the Cancer, Nature, or Nurture ruling his development - at this point, I don't care, as long as he survives this awful disease, and grows up into the most amazing human being he can be.

I think in the end, the experience of battling, and defeating cancer will help Alex develop great coping skills, and a sense of deep compassion for others. I hope that Alex also gets some of wonderful traits from the Nature side of the equation (his birth-family), and that we can Nurture him into combining all of these experiences into a well-adjusted, human being.

Today, I asked some of my friends, who have children the same age as Alex, if the frustrating behavior he has been exhibiting is "normal" for this age. I was glad to hear that while his behavior might be a little bit more extreme than his friends, that for 90% of the time, he is just acting like a "normal" 4 year old.

Next Chemo cycle, steroids start again - all behavior bets are off at that point. We are already steeling ourselves for the 'roid rage that rears it's ugly head during that time.

Until then, I'll just take a deep breath, and remember, I'm not alone - there are plenty of parents all over dealing with the behavior challenges of a "normal" 4 year old.