Miracles

This has been a good week for miracles. And a bad week for Cancer.

- One tumor shrank. Last time it stayed stable. The chemo regimen didn't change. Once they're stable, they aren't supposed to shrink again.
- One tumor that everyone thought was growing was actually stable.
- One kid with relapsed leukemia is in the middle of an experimental therapy that so far ... well, I'm superstitious, so I'm not going to say anything to jinx it.

And I've got nothing. Nothing creative or clever for you. I'm fresh out of good ideas. Parents of kids with cancer need everything you can do for them. Kids with cancer don't need so much. They're tough as nails. Mostly they just need chemo, nausea meds, blood products, and a really good mask. Oh, and their parents. They need their parents to be there. And to be rested, and sane, and more or less good at faking positivity even when they don't feel it. SO, if you can think of something really awesome to do for parents of kids with cancer, please please please share it. Even though they'd never ask, they need the support!

Switching Gears

Just a warning. This post is going completely off topic. I can't help myself. I was reading Lily's Caring Bridge page tonight and her mom posted a link to a video that explains the experimental chemotherapy that she is receiving. Lily has refractory neuroblastoma. I feel a strong connection to parents of children with NB because that is what they originally thought Lindsay had. Many a night I've thought, "what if".

Lily has been receiving a medication called Nifurtimox. Because this drug was originally used in Chagas disease, I was very intrigued when I read about its use in NB. So I had done a little reading in the past and find its story fascinating. When I clicked on the link on the Caring Bridge page, I didn't realize it was for essentially a scientific presentation. The conference where the scientist is speaking is, I believe, for families of neuroblastoma, but the link is equivalent to what mine be seen at any scientific conference (with a little biochem and molecular biology omitted). It's fascinating and inspiring.

So what is a drug primarily used to treat Chagas disease (a parasite) doing in neuroblatoma patients? Well, you'll have to watch the video. Utterly amazing. And why am I posting it here? Because I know some of you happen to be working in basic science, and some of you happen to work in medicine. And I think it's so important to remember that when these two fields merge, amazing things can happen. AND, because most of you probably think very little about science or medicine during your daily routine, it's nice to remind you of the value of research and why St. Baldrick's (and other organizations that fund research) are so crucial to saving our children's lives.

And, speaking of St. Baldrick's, it's time for a brag! I am so excited to see that, Glenn, one of my followers, is going to be shaving with Matt at the Sept 11 event in Winston-Salem. How exciting?! We are up to 3 on the team, and I'm hoping my dad will be joining shortly. It isn't too late to join Team Lindsay or to donate!

Urgent Prayer Request

Today I am asking for the most meaningful thing to a parent of a child with cancer. Your prayers. Kate is a little older than Lindsay and was diagnosed with ALL (the "good" leukemia), just a few weeks before Lindsay. Well, it just goes to show there is NO good leukemia. Kate is at a point where original treatment failed (she relapsed during treatment). The second line treatment (far more aggressive than the first - more like treatment for AML) has now been deemed a failure. Cancer is multiplying despite serious chemo. They can't knock out the cancer and therefore bone marrow transplant (her only hope) is not an option. Kate's parents have been given the option of hospice or experimental medications. You can read between the lines and hear the despair. They have asked for prayers. They are not giving up on their little girl but it is going to truly take a miracle. Kate's cancer had a relatively good prognosis. This course of events is unexpected even within the world of cancer. Please pray with all of your might. Whatever your method - meditation, positive energy, fasting, whatever your method. Please.

Bald is Beautiful

Last year Matt raised over $6000 for pediatric cancer research. Why does this matter? Fortunately, most kids don't get cancer. Unfortunately, so few kids get cancers like AML and neuroblastoma and rhabdomyosarcoma that the big drug companies are all that interested in funding research. Cure kids cancer, great! But the payoff isn't that big. Ever wonder why the most common type of kids' cancer (ALL) has the best success rate (94% survival)? Umm... research! Funding!! Hello!! So pediatric cancer research is critical.

So Matt is going bald again. Not until September. And what I'm really asking you to do? Donate if you'd like. But better yet, join our team. That is my real wish. To have a HUGE team of baldies-to-be raising money. And with every donation you solicit, you raise money. The event isn't until Sept 11 so you have PLENTY of time to fundraise. But sign up now, before you lose your nerve!!!! And if you're thinking, "I'm a girl" ... well, let me first say that girls shave. And let me say second that you probably have a man in your life who would be willing to go bald. Think about it!

"I hated having cancer, but kind of liked being in the hospital."

So tonight after a long day of yard work and grocery shopping and hunting around Lowe's for an outdoor spigot nob that was nowhere to be found, Lindsay starts talking cancer. Actually, we've been talking cancer a lot lately. She's had a bad tooth, and there has been much discussion, both at home and at the dentist, over whether chemo has anything to do with this. So leukemia and chemo are on everyone's mind. And her tooth was hurting. So she says, "I think chemo and leukemia made my tooth hurt." We start talking about whether this is the case and why it is important to not blame cancer for everything bad in that happens. THEN she says, "I hated having cancer. But I kind of liked being in the hospital ... Because they had toys." Then, after a second-long pause, "But I don't think other kids enjoy it so much." I have this same mental block sometimes. I see other cancer moms going through exactly what we did and I think, "HOW ARE THEY HANDLING THIS SO WELL?" Oh, right.

Anyway, after her pontification about the pros and cons of cancer, I asked if she was worried about the other kids not having fun. She said, "Yes! We have to start doing more things to raise money!" Now, keep in mind, we really don't talk about cancer and the hospital and fundraising all that often in front of Lindsay. But these things stick out in her mind. She is ready ready ready to have another lemonade stand. She can't wait. So I'm going to encourage you to do the same. I recommend store bought lemonade (save the receipts, since it's for charity it is tax deductible). Matt has a lovely trick of cutting up lemon slices and putting them in a glass pitcher with ice and lemonade to imply that the lemonade is homemade. And if the weather won't allow a lemonade stand? Bake sale. Hot chocolate stand. Yard sale. If you don't live on a busy street, consider asking your favorite kid-friendly store (toy store, consignment shop) if you can set up shop in front.

And where should the money go? Well, since we're worried about kids being bored or depressed at the hospital, I'm going to suggest we raise money for Wii's for the hospital. I know I've featured this link twice now, but come on. If your child were in the hospital for 6 months or a year or longer, even if you were the most anti-video game parent on the planet (such as myself) you would really really want this for them!

Slackers! Donate blood or marrow or both!

If you look at the date on the last article, you'll see someone's been a little slack. Hmm. Could it be me? I sat down to read a Caring Bridge post and it reminded me that I need to update this very important website. So, I'm sipping a glass of wine ... I'm sorry, what's wrong with drinking alone? ... and trying to come up with some super brilliant "suggestions" that will not cause Michelle to go broke. Yes, Michelle, I'm singling you out. Since I'm 87% certain that you are the only non-cancer mom reading this blog. Or the only one who is busting you A@& carrying out my suggestions. Oh, I just fake-cussed on a Lent-inspired blog. This is not good.

Okay. Back to helping kids with cancer. Two very very simple things:

1. GIVE BLOOD (or platelets). If you aren't a nurse or a cancer mom or a follower of Lindsay-the-great, you may not realize that chemo wipes out the bone marrow and cancer patients require numerous blood and platelet transfusions. I've tried to guestimate how many Lindsay had during her treatment. Rough count ... 80, maybe? That includes platelets and packed red cells because they are given separately, rather than whole blood. But still. I would have to donate for more than 10 years before I make that up! Can you help? Call 1-800-GIVE-LIFE to schedule an appointment. And don't give me the "I'm afraid of needles, I get queazy, I don't have time crap". Matt used to use that as an excuse (and he does pass out). Still, Lindsay was afraid of needles. She got queazy when she was anemic. None of us had time for cancer. This is something you can do and it is all that more meaningful if it is a little challenging :)

2. The other not-quite-so-free way to help out? Become a marrow donor. I saw the commercial yesterday. I was in tears the entire time. Although the cancer-accuracy-policewoman in me was saying "She's not bald. She should be bald. Or at least her hair should be matting up from the chemo. And where is her N100 mask?" Okay, you know, maybe I know too much about cancer. But still, the commercial makes me cry every time. Now, it does cost a little to become a marrow donor. Why? Because the genetic analysis is a bit more complicated than blood typing. It's about $50. Sometimes companies sponsor drives and registration is free. If you aren't "legal" to be a bone marrow donor (too old, pre-existing condition, etc), consider making a $50-100 donation to the National Marrow Donor program so that cost of registration to offset the costs for 1-2 donors. Our friend Kate will be going for either bone marrow or stem cell transplant within the next few months because of relapsed ALL. If Lindsay relapses, she will require tranplant. This is quite simply giving of yourself to save someone you've never met. If you haven't already registered, get off the stick already!

This morning, we were making breakfast and Lindsay said, "Do you know this is the season of Lent?" Apparently they've really been hammering home this whole Lent-thing in chapel. Lindsay is a big fan of Father Brad and chapel. She can say the entire Lord's prayer and grins whilst doing it as if to say, "Aren't you impressed? Father Brad taught me that." Anyhoo, it is the Season of Lent and aren't we lucky to be able to give of ourselves to help those who need it? So, don't sit around pitying the families. Your pity is a waste of time. Get to work!

Helping those who need it most

If you saw Lindsay's Caring Bridge post today you know what I'm about to request.

When I learned about little Courtney, it just got to me. Thinking about losing your 15 month old child. Thinking about going through this and not receiving help from others.

Cancer robs any financial security that you may have enjoyed. Savings, gone. Even with the best insurance, it's an expensive disease. The financial side can rip a family apart, regardless of the health aspects. And as parents stress over making ends meet, they are not able to focus on what really matters - their children.

Please consider helping a family in need. Whatever you can do:

The following is from another mom, and I have edited a bit:

The little girl is named is Courtney McClaflin. She was diagnosed in September 2009 at the age of 15 months. Her family has been told that she will not be with them much longer. She has two parents and two older sisters.

http://www.caringbridge.org/visit/courtneymcclaflin

Alex and Stephanie are in love with this little girl, and we are asking all our supporters to pitch in and help. Their family has not enjoyed some of the support that our families have.

I know the McClaflin family is in a world of hurt with the most recent news.

I believe they would appreciate a helping hand, as all of this is sudden and they are not prepared to deal with this turn and the huge expenses that come with it. I would like to try and help out. In church we call this a "love offering," and I believe there is not a family in SC in more need.


Julie Caison (also from Anderson, Bryce's sweet Mommy) has agreed to help look after donations for the family. If you would like to send a check to help with expenses.

Julie can be reached at:

Julie Caison
2902 Beechwood Pkwy
Anderson SC 29621

Please feel free to share or cross-post this information. We need all the help we can get.

With many prayers for peace and mercy for Little Courtney and her family as they go down this road.
(From Ginger ... If you do not feel comfortable sending a check to someone you do not know, you could send a gas card, cash card, etc to the hospital to Attn: Family of Courtney McClaflin. People did this when we were in the hospital and we always got the package or card. If we had gone home, they were forwarded. That will give you a little security if you are uncertain. Please think about helping out.