After many calls and talks and much more, I would like to give you a soul-soothing update: the methotrexate shortage crisis has been averted. THANK YOU to all of you who were proactive -- we were heard! The FDA has approved APP Pharmaceutical's application to produce preservative free methotrexate, and Hospira has beefed up its manufacturing, as well. There is still much to be done. More than anything, we need the bill placed before congress to become a reality. There needs to be a checks and balances when it comes to life-saving medicine or this will happen again. It might not be childhood cancer, it might be another disease. The FDA needs to be aware when a shortage is approaching, and not get as dangerously close to running out as it did, and then find a last-minute solution. Life is too precious. Dr. Adamson testified before Congress, and said this: "I certainly understand that passing legislation is complex, difficult. I suspect, however, that it is no more complex or difficult than curing a child with cancer. And I can absolutely tell you it is no more complex or difficult than what children with cancer face everyday.” Yes, Dr. Adamson is a new hero for his amazing testimony.
Speaking of heroes, I have to completely confess again: I adore Justin Beiber. I may not be as into his music as my sons, but I encourage their need to hear this boy belt out his songs as loud as they need in order to FEEL it. I was a New Kids on the Block girl...I get the pop music scene. My mom let me have the pillowcase and every oversized button in the collection. But, back on track (before I jump out of this seat and bust out some "RIGHT STUFF" moves): Justin Beiber is an all-out AMAZING childhood cancer wish granter and humanitarian. Just this Valentine's Day, this young pop star spent the entire day with an incredible little girl, Avalanna Routh. Avalanna suffers from a rare and deadly form of brain cancer. She is six years old. This wasn't a Make-a-Wish, this was simply Avalanna's dream: to meet Justin Beiber. She calls herself "Mrs. Beiber" and is as obsessed with him as any little girl could be, stating, "I have been his fan for 80 years." My heart becomes a liquid mess when I read about her or see her interviews. I can't blame the Biebs for hearing her story and rushing out to spend an entire Valentine's Day with the sweetest girl around. He did not have to do this...but he did.
Well, as it turns out... Justin Bieber was a hero in our house tonight, too. I bought the boys toothbrushes that SING 2 minutes of different Justin Bieber songs. They are supposed to brush-brush-brush for the entire song. Oh. They did SUCH a great job. Thanks, JB!
First: THANK YOU for the buckets upon buckets of love and prayers. Gideon is doing MUCH better. He does not have a fever anymore. ALLLLL day on Monday Gideon and I slept and cuddled and tried to hug away that cough. He is still throwing up, but I have a great feeling that he is on the mend. Gideon will be getting an immunoglobulin transfusion tomorrow, and hopefully that will kick up his immunity even more. Please pray for him in that regard.
As far as what you can do... I was overwhelmed by the number of staff members who greeted me in my room this morning with questions about how they can help in the Methotrexate shortage. It is devastating that there is only enough left for two more weeks of use. Most diseases that use Methotrexate have alternative drugs that could be used, but not leukemia. It is the difference between life and a relapse for these precious babies. I urge you all to go here and follow the steps so that government officials find a longterm solution to this horrific situation. The FDA has made some strides to help in the near future, but it is a bandaid on a gaping wound. We need there to be a steady supply, even if this drug is not necessarily "profitable" and it's need is not as urgent to Congress compared to the other issues on the docket. Obama introduced a bill to help avoid this situation in October, but apparently it is not as crucial to these people. Sorry if I seem jaded. I am. I will never understand how capitalism and listening to the lobbyers with the largest sum of money somehow outshines human life. Call me what you will, but no amount of PAPER with dollar signs is more important than Gideon's life.
I have not only written several people, but I also called drug companies and talked to their customer service. I must say, APP was so very nice. I ended up talking to a guy about this issue and more for a LOOOOONG time. He even took the time to ask how Gideon was doing. I was impressed by that. Oh. I also called the president. I left him a message. I will let you know when his people talk to my people. In the meantime, PLEASE go to the link above and follow the steps. It does not take long. Since we don't have the money power to make this issue as dire as it is to our government, let's please shock them by the number of VOTERS who care for life.... Lives like Gideon's and so many of his little friends.
We just got home from the hospital. Gideon's cough got scary and nonstop, along with throwing up and a fever of 101.5. So, his oncologist suggested we head to the ER. He had his chest x-rayed, his blood checked, and an IV bag full of antibiotics. It looks like he will also need another transfusion of immunoglobulin, but that will be later this week. The nurses told us we would be asked to check in overnight, especially since Gideon's temperature kept rising. It was up to 102.8 and the little rosy-cheeked boy passed out. We caught the pneumonia in the beginning stages, thankfully! To be honest, I just wanted to get the medicine in his veins, get the oral medication for the pneumonia, and leave that petri dish of a hospital. It is beautiful and its staff is incredible, but home sounded better.
We were allowed to go home. We are thankful for all of you who are still out there praying, asking for updates...seriously. THANK YOU. I kind of want to pull my hair out, though. So, if you could also pray for sanity...that is much appreciated. Gideon took his newest medicine to combat the pneumonia along with his nightly dosage of chemo. His fever went down to 101.1 thanks to Tylenol. Unfortunately, it all came back up and into his puke bowl. Do you know what that's like? To watch your baby throw up the medicine meant to save his life? It made me want to get a mini-skimmer and fish out particles in the bucket, and mix it in with something that he'll digest and keep down. It's a mixture of madness and desperation, that feeling.
The only medicine his oncologist told me to redo was the new pink stuff for the pneumonia. He also asked me to feed him one more steroid to fight that nasty cough. Every time I hear that rattle of his lungs I feel like his little muffler is going to just drop out of his little body. It makes me cringe and want to brace his ribs with my hands. I say "want" to be his brace, but I do that. I wrap myself around him when he is attacked with a coughing fit. I have no idea if I'm helping or hindering, but I just want those lungs to be clear of anything but clean-clean air all while holding him together.
So, his cancer is sharks. Gideon wanted to understand his pneumonia, and when I described it, he said it was a pokey and mean puffer fish. It's good to know that nothing can douse the fire of his creativity.
Praying. Loving on him. Loving on all of YOU who care so much about our boy. Thank you. Again.
Gideon has had his Methotrexate dosage this week injected straight into his spinal fluid. This is pivotal in our battle to rid his body of cancer. It's a love/hate relationship since there are many side effects that can appear because of this process in the long haul, but it beyond necessary in both spinal injection and weekly oral form. Methotrexate exerts its chemotherapeutic effect by being able to counteract and compete with folic acid in cancer cells, resulting in folic acid deficiency in the cells, and causing their death. Unfortunately, this also has the same effect on normal cells. Again, the alternative is far worse, and I am grateful and thankful for this drug. Gideon also had his lumbar puncture to test his spinal fluid for any evidence of the disease.
Many people were shocked and saddened by the news of Whitney Houston's death. I was one of them. It is always so terrible to hear of someone whose life is cut short. To have such a talented human gone from our world is a reminder of the finite time we all have here. It is with a smile that I remember putting on a routine to "I Wanna Dance with Somebody" over and over and over again with my sister. We had the bow, the big hair, poofy skirt...we wanted to BE Whitney.
But this news was a blip on the screen compared to how I felt about this news. They are running out of Methotrexate? Why is there not more of a public outcry about this? This is a medication that makes BEATING leukemia possible. Innocent babies need this medicine. This is not a rockstar's "fix", this is life and death for the innocent. This is the preservation of life for those little people who have just as much possibility of changing the world as every famous and talented artist out there. Who might we lose if this issue is not resolved? This is something we need people to not only pray about, but DO something about. You better believe I will be vocal about this issue. There is no such thing as a backseat when your baby has cancer. I don't care if I'm annoying. Not at all.
Here is a video of Gideon's day this week at the clinic. It is the prep work before the spinal injection and LP, and the after procedure time. I did not include the actual injection or puncture. You will not feel queasy, but you will see what Gideon goes through and the most amazing spirit he has to get through it all. Even with this recent news, I am thankful for the way Gideon's treatment is going and the fact that he is cuddled on my lap right this instant.
This blog is a heart-overflowing-thank you to my second grade students. I was reflecting on why my week was so astoundingly incredible, and my smile kept growing as I thought of those precious people. It was all them. Of course, my first graders also added joy, but it was the second grade lesson I taught that made me realize I was actually being taught by THEM, the seven and eight year-olds.
I have heard the song "We are the World" a trillion times, at the very least. I was a little girl when it came out, and I remember getting so excited when I could watch the music video and point out the artists I knew. It also made me feel an uncanny connection that made those artists and myself on an equal field: children of this same world. I don't remember ever talking to anyone about this, but I do remember feeling that emotion of mattering and counting, too.
My Spring Program theme for my second grade class is "We are the World" and we are singing and dancing to songs from various countries and cultures. I have the privilege of also teaching Customs and Cultures along with the musical piece, and these little sweeties are sponges. Anyway, the chorus to "We are the World" is our transition song that we sing as students move between songs. I decided to show them the newer version of the song so that they could recognize the singers they knew. I was their exact same age when the song first came out, so this was a little nostalgic for me.
The nostalgia turned into smiling and the smiling rearranged itself into awe. That is where it stayed as class after class continued to make me feel like our world is going to be incredible because of these little ones who people it.
After watching it, we talked about the video and the lyrics. Here is what some of the kids said:
"Did you see how those people from Haiti were still dancing and smiling, even when they lost everything? Well, they didn't lose everything. They still had happiness. I guess houses and things aren't all that make you smile."
"You know how Mr. Wheaton says, 'Make it a great day or not. The choice is yours'? I think that when we sing 'There's a choice we're making, we're saving our own lives,' it means kinda the same thing. You can make a choice to make your life and everyone's life better, or you can make a choice that makes your life worse."
THAT comment lead to another child saying, "And if you make no choice at all and do nothing, that still is a choice you made: to sit there and do nothing to help."
"No one is more important than someone else. Even I can do something important."
"We can make 'a brighter day' just by smiling at someone and then that smile makes someone smile at someone else, and that smile is smiled to someone else, and on and on until people smiled around the world because of your ONE morning smile."
One of my personal favorites, "Mrs. Schripsema, were you in that music video? I think I saw you in there." Okay...that one just made me laugh.
I could go on and on and on... But the gist of this post is, listen to your kids. They see what many of us adults have forgotten to see, and it's actually the most important things to realize and focus on in the day-to-day. THANK YOU, Mattawan's second grade, for making my days brighter just by being YOU.
