I really want to post good updates! He has had very few good moments the past ten weeks... and he still has very difficult parts of treatment to come! And even when he has ok hours... he still has leukemia, that heaviness never goes away. Last night was rough, had an allergic reaction at his port site and was projectile vomiting. Feeling frustrated but I'm really hoping for Murphy's law to go into effect that if I post the bad stuff he will have a good weekend! 🤞🏼 ~*~*~sprink ling good vibes everywhere~*~*~ All that said, we are very blessed. He may not be sailing through treatment, but he's NOT the worst either. It is so good to have perspective. I know that there is HOPE. He will come through this stronger mentally and physically. Now if he would just wake up and be feeling good... Thankful for # wilswarriors Sherry Zehner , Maggie Huffman , Julie Cuba Jenkins , Sugarfire 44 , Tara McMahon , Becky...
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Wil came home from the hospital last night. He is still fighting a headache and is sleeping a ton. The walking pneumonia is probably what caused his fever to spike and we found out a few more answers, this disease never fails to horrify me. He made it to the clinic this morning for chemo and is still in bed. Leukemia is a long hard battle and we are so grateful to everyone who gives us the inspiration to fight on. The support online and in real life is overwhelming. So grateful to my family who are ALWAYS on call. My sister and Kristen Josephine who came to stay with me after working so many 12 hour shifts in a row! It sometimes seems redundant to thank your family but I have the best! I love them with all my heart.
As I am laying here in the hospital with Wil it is hard to believe how normal things feel. Like...YIKES! We stepped off the elevator into the ICU and all the ladies were like "Hi Wil." We knew them, they knew us. We went to our room, we knew everyone, we knew how to turn the couch into a bed, we knew where the ice machine was and the snacks, we knew how to call for meals and nurses, where the clean linens are and where the dirty linens go and how to adjust the beds...weird. N INE weeks ago we didn't know. NINE weeks ago all of these simple things were cause for additional panic. NINE weeks ago I had never heard of the Consolidation phase of chemo. NINE weeks ago I didn't know that Lumbar punctures gave him migraines. NINE weeks ago I didn't know that 6MP made him spike a fever. NINE weeks ago I didn't know that chemo drug vincristine was made from the mustard gas that the Nazi used in WW2...NINE weeks ago I didn't know what I didn't know. T-cell acute...
Oh my ... I spent WAY too much time texting this museum http://www.cnn.com/2017/07/10/us/sfmoma-text-art-trnd/index.html . Blessings come in all forms, much thanks to many # wilswarriors Becky Massey Tidwell Wood Kristen Patterson Courtney Patterson Becky Brickson Austermann Becky Reid Fitzgerald Erica Hoffman Patti Hauschild Hoffman Cheryl Argent IF you have not received a thank u note from me, please message me, Wil slept a lot last week and I feel like I am catching up but don't want to leave anyone out. I know I haven't given everyone a proper shoutout but please know your generous spirit and kind gestures never go unnoticed. We are very lucky to have so many people who give us strength when we least expect it. Wil is having a good day, managing his headache and joint pains with meds...he and I are both learning that a pain day of 4-5 is a good day so get out and enjoy the day. Our new motto is "make a me...
Wil is home and he is doing well. Beyond blessed for amazing nurses and doctors. They are patient and kind and never tire of my endless questions. They are always calm and encouraging and happy to see Wil. They see people at their best and their worst and always offer endless hope. Thankful for their love and care of Wil and all the children in their care.
Before we finish up our second month of chemo next week, I was revisiting my posts from the the first month. The first five weeks of treatment are called induction... and they are pure hell. To say that we have learned a ton of information would be an understatement of epic proportion. Our first 8 days in the hospital will have to be a story for another day. But the learning curve cognitively, physically, emotionally, and spiritually during Induction is excruciating. It is hard to grapple with the fact that your child is so immeasurably sick AND now we are going to fill his body with poison that is going to make him even more sick. EVERY cancer is different but this first month of chemo is pretty much horrible for everyone. Not only is his body struggling from the leukemia, but now we are going to kill every cell in his body good & bad. Read "Emperor of all Maladies; A biography of Cancer" by Siddhartha Mukherjee if you are an information junkie like Wil and Me. I wo...
I was just writing in my journal about this crap...chemo sucks on so many levels. Here is the practical stuff that I didn't even know existed 7 weeks ago. Wil is on all these drugs, he has his own bathroom that no one else uses. Brandi Lea can attest that the amount of laundry detergent we go through is unreal! Many many thanks for those who have dropped by hand soap, paper towels, chlorox wipes, toilet paper, baby wipes, laundry detergent, fabric softener, etc. Leukemia awareness The below is information about general chemo safety. Specially for ALL some drugs are more cytotoxic (for example high dose methotrexate, doxorubin,daunorubin, cyclophosphamide) . Caution must b taken for 1-5days(depends on drug) after receiving these chemos. As per my knowledge 6mp is a safer chemo in terms of cytotoxity. How can I protect myself and those I live with while I’m getting chemo? There are many things you can do during and after chemo to keep yourself and your loved on...
Sometimes I can get my Instagram to post here sometimes not... Wil tells me I'm not as good at technology as I like to think I am . The kid keeps me humble. He had another good day today, was exhausted from his movie last night (slept 13 hours total) and struggled with his breathing this evening but doc change some meds and it seems to be helping. Hoping for 3 in a row tomorrow! # hopeisstrongerthanfear 😂 My warrior keeps me strong! 💪🏼
I just tried to put my contacts in... I already have a pair in... just keeping it real # mamabear Wil is having a better day today (I'm holding my breath) had to share the silliness that is my new normal! No new chemo the rest of the week, so exciting! He has a tiny fever and chasing off his headache with lots of new drugs. But he is SMILING and awake! This boy is a warrior
Yet another reason to continue to tell our story. Only 4% of funding goes towards childhood cancer research. #morethan4. http://myfox8.com/2017/06/22/photographer-documents-6-families-fight-with-childhood-cancer/ Wil has surgery #7 this morning. We are both up early and anxious. He is so worried his migraine will come back, he said just tell the doc we are not doing anymore surgeries. I don't even have the heart to tell him how many more he will have to endure the next few years. Our neighbor Becky Brickson Austermann nominated Wil to be honored as Guarantee Electrical Company cancer child for their Pedal the Cause team. 100% of the donations go toward childhood cancer research in St Louis. If you have the means please consider a donation in Wil's honor. #wilswarriors Register for Wil's corporate team to ride; https://www.mypedalthecause.org/team_profile.jsp?MemberID=918 Or make a donation in his honor, under Becky Austerman who nominated ...
Still rocking the migraine day 6. Need to get back to a 6 on the pain scale before surgery on Monday. 🙏🏼 and positive vibes needed. Here is Wil one year ago today headed to UCLA soccer camp, where he rocked it and got a private invite to workouts with the team. We will get back to California dreaming. # wegotthis # reasonstofight # cancersucks Edit: insurance just approved a new migraine medicine that they denied last week! Chris is going to pick it up now (noon-Sat) Please work! Update 3:00: Upped two of his medications and added migraine meds...head eased enough for him to take an epsom salt bath. Still has a headache, but thankful for some relief!
Been a very rough week... blood transfusion, IV fluids, and a new migraine medicine have given some relief. Paraphrasing what my sister said..."the eternal Leukemia roller coaster where the highs are never too high and the lows are lower than you than you ever imagined." LOTS of luv from # wilswarriors have given him moments of smiles... St. Louis Cardinals , Jake's Crew Ipad Fund , Embrace Our World Orthodontics , Guarantee Electrical Company , Stephen Androlewicz , Andi Bates , Beth Wilks , Sara Carlson Meinking , Ed Pahuski , Gina Donlin , Lori Murphy , Lisa Slyman , Aunt Irene, PJ Schappert,Huett family,Hassan girls, Mike & Maggie... I try to keep up... please make sure you message me with your address if you have not heard from Brandi Lea or me. So thankful for those that lift us up and remind us that we can beat this. # wegotthis
Ok... # mamabear feel good moment! I am in a few support groups trying to learn as much as I can about T-cell ALL. Today I was able to help another mom who has 7 year old with B-cell ALL who is 3 weeks behind Wil. It wasn't a lot but I was able to share information and give her some emotional support! Made my teacher's heart happy to help someone else. # togetherwearestronger # wegotthis If anyone knows of a teenage boy who has been diagnosed with T-cell ALL in the past few ye ars I would really appreciate an introduction. Needing stories of hope from real live peeps with t-cell. Wil has surgery #6 in the morning. Please keep him in your thoughts and prayers.
The first thing I do when I open my eyes is panic and think, "is Wil still breathing?" Of course this is no way to live. Thankful that Wil is stronger than me and he knows it is important to have a life when he can while he is fighting this awful disease. Things don't always work out the way we plan, but I can hear his voice telling me, "come on mom, we have to try." Anyone who knows my family knows we LOVE the 4th of July. Yes we are a big military family and love our count ry, many, many family members, including Wil's dad, have served in the military protecting our freedoms. So the 4th for us has always meant family and fun! My Aunt Vic was up before the sun and secured us a good spot for the parade with a place for shade and close enough to the car so Wil can take breaks and lay down. She does this every year so the little ones always have a close potty and a great viewing spot! We are missing tons of family this year so many pictures an...