Baby Turned Thirteen

5 Months ago I sat on my couch bawling my eyes out that I would miss today. That was not the plan, and for that I am grateful. At the same time, God had some wicked plan that I would however be in mega pain today. Guess we can’t have EVERYTHING we want. I actually had slept like a princess. I took some Flexoril and some Melatonin before bed, the doctor said to, and BAM. I was out for most of the night, maybe got up a couple of times. But when I woke up to sing our traditional birthday song, I couldn’t! “Today it is your birthday and we sing to let you know that you will be queen for the day, whatever you say goes!” My insane planning was thwarted this week. I had no outfit or crown for Madison, the one thing she picked as her birthday breakfast we didn’t have, and my head felt as if it were splitting open. For four hours I was in pain. Pain I have never felt before in my head. I cried. It was unfair and too much. Skip looked at me at one point, “when do we go to the hospital?” “NOOO!!! MY daughter turns 13!!!” I tried all my meds and was hiding under a heating pad. It felt a little better, and then I called the doctor on call. I got a call back over four hours from the start of these shannanigans and she said that if I felt the headache start up to take narcotics. It seemed like the Beet/Apple/Carrot juice I had made the night before, did the trick. I drank strong cups of coffee, anything I could do to get my brain to stop hurting. Like I said, it finally did. At the same time, my neighbor Lesley and her kids went in to full “Take care of the Wall family mode.” It was good. Alana was covered, they picked up pizza and drinks, Madison played in the woods with her buddies, and I tried to get better. It is so nice to have people literally drop everything for us to help in times like this. It was so needed. I watched Skip and dad finally finish the room and out back to sit we went. It was nice, I called Madison home, and she was confused. I now know she was also thinking that this was the worst 13^th birthday ever. Mom is sick, my traditions aren’t going as planned, I  was kicked out of my room, etc. Then all of a sudden, friends start coming up and filling our yard. She said it was awesome. She had NO idea that they were coming over! She knew her family was, but not her friends and the day began to brighten. Mom wasn’t in pain, her friends are here, and Brooklyn Joes pizza is happening for the third night in a row. The best part was the room reveal. Skip decided to let her choose the room and of course she chose hers. She was blown away! We’ve talked about it all night. She had an idea, but thought she still had bunk beads at least. And that I maybe painted something gray because it was on my shirt, but that it might have been an old shirt. It was fun to hear her thoughts! I told her how I got the ideas, how we had everyone chip in, how cool it is to have two areas, and everything. She loves it so much and just keeps smiling. Said she will keep it clean too… that I don’t know about. So all in all, it was an amazing little day, mom made it to 13 and we enjoyed having everyone over and celebrating 13 awesome years.

Now, for tomorrow, we aren’t quite sure what that hold, but I would be lying if I said I wasn’t nervous. I had melting vision 3 times in the past 2 days. My head felt worse than anything I’ve ever experienced. I think my body is mad angry with LM and no matter what I did today it didn’t respond. So tomorrow is a new day, when they’re all off to school, I’ll start making phone calls. I’m guessing we are going to get in a whole lot quicker now. Hoping to God I make it through the night and don’t have to spend time in the ER. I took some Ativan and Tylenol and hope to see tomorrow is a good day. Like I said, I’ve never felt anything like I did today, and would most rather not feel that again. Just looking up and holding onto hope.

Madison tonight said, “mom, you had to make it. Your mom.” That made me smile. She’s right, just had to.

Another Beautiful Day

Oh, today is a new day!! Happy dance from my recliner! Thank You for another and thank you God for waking me up in pure appreciation of another day. It is a gift. I woke up to the peak of sunlight, birds chirping, and I felt spring being near. I slept more hours last night without waking which is huge. Today will be day three of me praying circles around myself on my living room floor, 36 to go. I am praying for a miracle with my team and as I have many scans this week and doctor things to do, my heart is at peace. It’s a God peace as this week was painful. Literally. Pain I have not remembered since September. I want to do life as I always have, and I think denial has set in. Accepting the fact that running errands has become too much, is becoming realization. I have to remember they are putting poison directly into my brain to kill the leptomeningeal disease. Duh! I just had massive chemo treatment five days go! Monday! Which also means I get to come off Prednisone today!!! I read this morning about considering every trial pure joy, and I am joyful. I know the new normal of life is just that, the new normal. It means looking at each day differently, appreciating it, and going through it with the best attitude possible, for it truly is another gift. Tomorrow is Madison’s thirteenth birthday, and though today is filled with things to do, I give it up. I give it to the people who are helping us, and letting go of the things I just can’t do, the errands I should not run, and sit back and smile at this day. I am so happy I could burst! I am so thankful for the team that has set off on this journey with us and so thankful for the prayers, help, encouragement and everything. Lord bless them so hard for all they do and have done. I wouldn’t be here without them. That I know is true.

OverDo Everything

Ok. So it has been a whirlwind of a day!! I guess I cannot do all the things I used to. BOO! HAHA. I woke up at 6 and "Good, Good, Father" was in my head so now I own it! Verses on "good" were where I started today, convinced God is good all the time. I started out super high! By 9:00 AM I was out the door! I HAD to go decorate my child's locker, fix something at the bank and met an amazing young man who helped me. So happened he lost his dad at age 5 to brain cancer. Can't tell you how hard that was to fight back tears for him, but I've made a new friend. So crazy...

The DRMS staff was like SUPER awesome today. Apparently you have to be a kid to decorate lockers and come in before 7:30. Madison has been begging me for weeks to decorate her locker. So these awesome ladies did it for me during lunch after calling her up. See, I wanted to be that mom who went into the lunch room to deliver cookies for her birthday, but apparently that isn't allowed also. So they called her up, got her locker number and I got lots of hugs and smooches. Last day at school she will ever be 12! Ah! My little girl not so little anymore.

Left there and brought Alana lunch, because the last time I ate with her was Thanksgiving when I was told I wasn't "allowed" because of germs. So, since I'm not too scared of them right now, mom met us and we laughed giggled and had super awesome lunch! Funny thing, around 1:30 she needed to go home because she was "sick". Think we are battling asthma and allergies again, and will have to start tackling visits next week. I can see it in her veins, short breath, coughing. Skip was a bad asthmatic, and just thinking she's up now. From there, me and mom started painting Madison's room. I wanted the ceiling done, and all and the window wall is almost black. Half of it is divided with a giant IKEA shelving unit and it'll be her "bedroom." The other half I have a fab music studio planned out. Huge guitar frames with hangers, framed vintage records, drumstick art, CD art, art art art, new furniture and just fun. I hope its as cool as I envision. See, this is all from her super cool family who all went in on sending checks and became her gift! Her gift from us (other than what we went over) was a choice. Either a super giant 13th birthday party, or "go to universal with 2 friends, and see Shawn Mendes play March 18." You'll never guess what she chose! Yes, she looked at me like, "duh, of course I want to go to Universal!" haha. So we have a plan for that, just hope somehow teamnadine can work some magic and somehow meet this guy while we are there!! It would rock my world to see their faces. Then, I needed to still have friends and family over because it's what I need to do, so we are having the family and a few buddies over for pizza, cake and a 4:00 room reveal. Realized today that it is already Friday and freaked. lol. I had to take a break and lay in bed for a while and mom finished painting. She is sooooo awesome and it looks SOOOO good! We finished the ceiling too!! We have a huge list tomorrow, but I think it is do-able with our awesome family!

So, in the midst of ALL the crazy, I was also on the phone with my doctors all morning! They touched base again and feel I need to have the PET scan ASAP, along with the brain MRI which is currently scheduled for Monday March 7. Which will push my treatment out, likely to that following Wednesday, March 9. The cool thing is that I'll get the brain results at 1:00 the same day!! SOOOO need big prayers for tumor resolution!!! We want to see WAY less, gone, whatever you can pray! Disappear lots of brain tumors, disappear!!! I'll keep everyone posted, but for now, we need these scans to be clear of cancer. My body hurts so bad and my tumor marker went up this week which doesn't give me much confidence that I'll be clear, but I'm thankful they are on it. Pain meds, muscle relaxers and Prednisone don't touch this pain, and that's a little concerning. I always over do it, so pain this bad is just junky. Regardless, I'm positive, I'm making it to my daugter's 13th birthday (WHOOOOHOO!), something I wasn't sure I'd every see, and that keeps me on the top of the world!!!

Love you all and thanks for trying so hard to make a mama's wish come true in a few weeks! Meeting Shawn Mendes would be NUTS awesome.

Big hugs and loves and sorry for the ramble! Happy Friday and enjoy the mess out of this AMAZING weekend.

Today's Doc Visit - Tumor Marker went up

Wanted to update the group on how today went! Thank you for prayers!! 

This is the current plan, message me for questions:

7-10 days of high dose anti-inflammatory medicine and muscle relaxers. No walking except for around the house. Rest and chill out. Then we will repeat Tumor marker on March 7. If increases will do PET earlier than planned. 

Reason: the MRI showed bursitis, degenerative bone disease and lots of inflammation in pelvic area and bones. Actually may not be due to cancer, but could be due to medications, age, changes in exercise or other underlying issues. Only weird thing is that the MRI shows no enlarged nodes in groin, but it's swollen. May also be due to extreme bowel changes from Depocyte treatment. 

Hoping the 7-10 clears the pain in leg as well, if not will X-ray for possible stress fracture or other stuff.

Other plans: MRI of brain before March 7. Hope is that tumors have shrunk and or disappeared with Depocyte. If not we regroup and likely would go to plan B.

Rare, that is me!

Let’s get raw and real. Yesterday was one of those days that you’d just like to crawl back into bed, scream at God a little, try to figure out the meaning of all of this then crash. I have these every once in a while, thankfully, not to often. I’ve been beautifully covered with prayers and thoughts I will likely never comprehend, but I feel them. They lift me up.

I opened my email yesterday morning to this:

 

“RARE MALIGNANT CELLS.” You would think I’ve seen this over and over enough that it shouldn’t bring me down the way it did, but it did. I want them so badly to be gone. I want to be free of this disease as I know I’m not alone out there. I have so many friends battling the same battle, they understand. It’s a fight for your life, and there are just some days that inevitably knock you down when you least expect it.

It took me the entire day to bounce back. Again, thankful it was only one day. I have been blessed with the gift of positivity and finding ways to deal with problems and hardships with a smile. It’s just who I am. I can laugh at the scary stuff, and find and sometimes give encouragement during the scariest of storms, not yesterday. It was like a big flood of sadness.

The goals of the next few months sat on my heart and ripped it to pieces. I’ve almost made it to my daughter’s thirteenth birthday! Do you know how hard I cried back in September unbelieving that I would never see this day? That was another bad one. The only thing I remember was laying on the couch in oodles of tears with Skip yelling, “I just want to see my babies graduate high school!” Is that too much to ask? And then I remember, this is stupid, and we went out for one of the most beautiful bike rides. I’ve learned a lot of shake it off, stress makes it worse, pick yourself up, pull it together and get out there and do something that clears your mind. God hears your innermost thoughts and my words that day, like yesterday, though many silent, he was there, holding my hand, making it better.

Isaiah 55:8 says “your thoughts are not my thoughts neither your ways not my ways.” Someone sweet shared that last night, and I thought, huh, My thoughts all day have been so ugly, so scared. Those are for sure not God’s thoughts. I began to let go. I saw the hundreds of notes, comments, texts, and messages and realized, those are his ways. He has flooded my family with an army of angels and reminds me now, that my guardians are with us fighting together. It’s awesome and it’s the biggest sign of love there is.

This morning I awoke with my head splitting in half, my stomach once again completely unresponsive, and my back and leg hurting. Its just the way it is now and that is okay. Today I see one of the doctor’s and I pray that they can help figure the mystery out. I'm rare, so that is me.

I made my way downstairs and decieded it would be a good morning to start the circle maker 40 day challenge. We read the children’s version last night and read an excerpt out of the adult book. 7:14 is a crazy time to be circling circles in my living room with prayer, but whatever, I say three minutes of prayer time in a circle we refuse to leave until God shows up and makes his miracle will be plenty worth it.

Mark Batterson writes about Honi the Circle Maker and threw in this verse about 2 Colossians 7:14.  ^“if my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then I will hear from heaven, and I will forgive their sin and will heal their land.” I am ready, heal my body, my land. I circled myself on my living room carpet today, selfishly and boldly I prayed for myself. I want to see a miracle. I hear Alana pray all the time, “heal my mom like you did that guy who could not see, like all the people you healed. Make her better, you’re going to hear that over and over.” He can. He will.

Holding onto hope in a new way this week. It may be desperation. It may be watching people I know this month battle this disease and be called home. It may be that I want to be the one who people long from now talk about and say “I want to be healed like she was”, and in that miracle I want others to believe in God, because they saw him work.

Thanks for getting me out of another pit, and into my living room. Now it’s time to watch my 8 year old transform into Lucille Ball for her Wax Museum Project and that excited me to no end!

February Break

Last week was one of the best trips again, that we have ever been on as a family. We went to Universal, stayed in the park at the Hard Rock Hotel which ended up being one of our favorite places to stay. We were within walking distance to both parks and city walk and the pool was like a mini oasis. The weather could not have been more amazing and we just soaked in all the good family fun time. We made it to the park for a couple of hours the first night and the girls had a blast on the old dueling dragons. It was the first time ever in my life that I willingly passed on a coaster and sat along the sidelines watching. It was kind of sad, but to see their faces on how much fun it was was priceless.

We got much needed rest and off to Universal Studios the next day. We met up with some friends and for half of the day just hung out and had a fun time exploring the new Harry Potter section and riding good old rides. We pretty much stayed in the park until we had been on everything! It was awesome.

The next day we chose to make it an earlier evening as Friday was going to be a Disney miracle. We went back to Island of Adventure and hit every single ride again and even did a few water rides per Alana’s request. That was a definite mistake as it made things quite chilly for lunch, The Hard Rock, two days in a row outside, but still awesome.

We did the pool and enjoyed the outside games, even learned how to play shuffleboard! We were ready for Disney, and went to bed early. I had even went on a hunt for t-shirts and had everyone a new mickey (and skip a star wars) t-shirt. I was very proud. A new friends got us into the park, Jamie and Gary. Let me just say, that was awesome. They helped us obtain fast passes and off we went. We were also notified the day before about some slots at Cinderella’s Castle opening up for breakfast and we got in. Let me just say, I was WAY more excited than anyone else about Disney. It’s always been pure magic to me and to eat with the princesses was something I had always dreamed of doing.

We had an AMAZING breakfast, Alana says “best eggs ever” and I had some stuffed French toast that was so full of sugar and I didn’t care one bit! So yummy and so perfect. I had tears in my eyes literally the entire time. I even got a selfie with every princess that came to our table.

Finally we were on our way, and off to the rides we went. We started in Fantasy land and the new Dwarfs ride was incredible!! How fun! We went onto the “It’s a Small World” and then to Peter Pans flight where I once again was hanging over the edge of the boat saying how beautiful it was from up there. Skip and I rode together as that day was our 16^th anniversary and 17 and a half years ago, he proposed to me in that very spot. More and more covered tears. Best time ever. I asked them to let us ride again, but that would be a no. That’s okay, we had a lot to see!

We went to Dumbo’s Flight and took a picture in front of the Barnstormer, Alana’s first coaster ever when she was two! We rode the train around to Frontierland and got on Madison’s first coaster, Big Thunder Mountain. It was so awesome. Then we went to the Pirates of the Caribbean and the Jungle Boat and then to the Haunted Mansion. Alana was terrified but we made it and by the end she was cracking up! The moment just before was the Fantasy Parade, which was super coo, but the amount of people that left that area was a bit overwhelming for me! Ah! What was THAT!? Finally, all was back to normal and we headed to the Space Mountain. Now I wasn’t sure at this point if roller coasters were okay, so I thought whatever, I’m going. I did it!! We all did!! And off to Be our Guest we went. We were a little early so we got on Ariel’s Grotto ride, and hello magical once again. I’m telling you, I’m such a little kid when it comes to Disney. Then we made it into the beast’s castle! OMG no words to describe the amazing place. We had the best dinner, enjoyed touring around and meeting the beast, and leaving with some gifts from the master himself. It was awesome. I cannot thank the people enough who all made this happen. It was amazing and I’m still blown away.

We finally finished the night with fireworks and the light display on the castle along with the Electrical Parade to finish it off. On our way out, it said Meet Mickey, and I thought LETS! Why not!!?? And so we waited, met Mickey and on the way out, we saw a short little line meeting a girl in a blue dress. It took a minute and then I realized it was Wendy from Peter Pan! Oh what a treat! We were told she had not signed autographs in over 2 years and is never seen without Peter! We got pictures, she signed, we talked and she loved our story of how Skip proposed. She was absolutely adorable. Before we left for good I just danced in the street, swirling and twirling, in utter amazement of one of the best days of my life.

We were given and awesome gift and a dear friend and family added onto our nights at Hard Rock. We planned on staying the day and driving home late that night after the Mardi Gras parade, but now we could totally relax. We rode the Rocket Coaster, I DID, in the morning, Skip had his Starbucks, we learned A LOT from the concert director lady about Shawn Mendes coming up, and went and laid by the pool for the remainder of the day. We ate poolside lunch, played games, swam a little and just had a nice day coming down from the excitement of the week. That evening we ate some amazing Mexican on city walk and went back to Universal for the Mardi Gras parade which ended up just being so much fun!! Lots of caught beads and finally at the end Alana begged to ride one more ride, so why not the Rocket Coaster in the Dark!!! Yeah! Mom did it again, beyond my better judgment, but whatever. I didn’t care. The pain from the beginning of the week had totally subsided, I had walked over 8 miles a day, and I felt amazing. So many people praying is truly why. God heard every one and for no reason other than his grace was I able to do all I did last week.

Today I lay here in bed trying to fall asleep. We came home Sunday, an awesome trip and got everyone ready for Monday going back to school and me to get my third treatment of Depocyte. It’s scary to get knowing that I’m going to have an instant reaction. I think we have a pretty good idea of how it goes now, shall I need it after the next brain MRI. Today I had the MRI that was scheduled before we left for Universal, when my groin swelled, back hurt and whatever else. The pain had literally left until this morning and it was all back – good timing I suppose. Through the day, my positivity weaned, and I struggled. I know there are lots of things it could be, most  of them not anything I want to know about so my mind is now in a million directions. I once again became completely dehydrated from yesterday’s events, and even after two bags of fluids, I had no urge to pee. I have kept on my Miralax, Colace, prune, fiber, low residue diet and today, passed with nothing. Here we go again! This time with increasing swelling on the right side. At least my mom kep t me mostly distracted for the day. We had fun shopping, eating, going to doctor and then eating again. It was the first time I’d ever been to the Union and we were blown away. Met the people that own it and like 8 other restaurants that I know and love in the area and overall had a great time. Still, after the MRI I hurt in odd places, and started getting more and more nervous. Read the insane amount if prayers and worked on saying some prayers for some friends struggling with their own battles. Also heard Alana plead to God once again for me, but tonight was different. Come down from heaven and heal my mom, we know you have the power. That’s just a tiny piece of her unreal words. I was in complete tears by the end, unable to pray only a few words. She has such a beautiful soul. I truly hope he answer her amazing prayer, because this child if anyone deserves the miracle she requests.

Off I go to sleep, lots of reflux, just like last time, so I guess I’ll figure out a way to sleep now. Hugs and prayer to all, snuggling with my lil Jax and honey, wide awake and nervous of what news we hear tomorrow. Doing my best to stay positive, but sometimes it just honestly hits me like a ton of bricks with no rhyme or reason, tonight it one of those nights. Lord give me peace and sleep and lets just revisit it all tomorrow.

Bless os many beautiful hearts who are helping us, praying and thinking of us. You will never know the impact you make on this family. Love you all.

Nadine