First of the "Lasts"

Madeline's LAST out-patient chemo treatments were on Tuesday and Wednesday this week. They were each a quick 40 minutes and then we were on our way back home.  She hasn't had any nausea which is sort of amazing. Today she also had her LAST Neulasta shot. She hates these because it stings so much. We've tried all kinds of ways to numb up her arm prior and nothing works. So she is extra happy that she won't have to get another one. It's an amazing drug that works to keep her white blood cell count up. You may have seen a commercial for it on TV. What they don't tell you is that the shot costs like $12,000. It's ridiculous! Thank goodness we have AMAZING insurance and we pay nothing. 

We also had a 4-month follow up with Madeline's orthopedic surgeon. Her X-ray was perfect and he wished us a great summer with no restrictions. He does want her to have tendon-transfer surgery once her body recovers from chemo. This would essentially solve the problems of her drop-foot, and return her foot to "normal" but we will have to think and pray about it. Right now we want to focus on getting through the next few weeks. 

Next week is an "off week" with just a clinic visit on Tuesday. The last time her body needed two weeks to recover plus some blood and platelets, so we are kind of expecting the same next week. We definitely are praying to avoid any delay, but having only two more rounds sounds great! It seems impossible but she could be done with treatment three weeks from tomorrow!! 

Please pray that there is no cancer anywhere in her body. She will have a chest CT in a few weeks and we are praying hard it is clear. Osteosarcoma generally metastasizes into the lungs and Madeline's lungs have been clear from the start and we definitely want that to continue. Pray that her body recovers from the chemo quickly so she can start the last two rounds on schedule. Thank you so much.  We are so grateful for our prayer warriors. 

the end is in sight

We are back at Medical City this week completing another Methotrexate cycle. This week marks the end of block 5, with 15 rounds of chemo complete. Once we go home only one block to go! Next week she will have outpatient chemo on Tuesday and Wednesday, then a week off (praying for only one week off this time), and then just TWO more inpatient stays. She is so close to being done. 

Yesterday went smoothly and she didn't feel quite as bad as last week. I stayed with her last night and we watched, "Daddy's Home." Will Ferrell is so funny and he always makes me laugh out loud. Now she just hydrates and waits to clear. Last week she cleared in 60 hours with a beautiful 0.07 by Friday morning, so the pressure is on for another quick week. We are definitely looking forward being home to celebrate Easter weekend! 

I am obviously going crazy because we are talking about getting a dog once this is over. What?? Obviously all this downtime is messing with my head, because those of you that know me well know I am NOT a "dog person" but Ben and Madeline really want one, so we are considering it. I love that both the kids are old enough to research, and I love hearing them debate breeds, size, and dog intelligence levels. 

Speaking of people who really, really want a dog, I don't talk about Ben much on here, but he has handled this year with such grace. He keeps us laughing and he always knows how to cheer up Madeline. Ben loves his family and reminds me to enjoy this unplanned gift of family time we have been given. For a kid that doesn't want to talk very much, he makes us so proud with his actions and decisions. I'm constantly asking if his stuff is ready for school, his homework done, his lunch packed, etc and it ALWAYS is! He goes three days a week to workout before school and he never complains! So, so proud of him, and excited to see what's ahead for him in high school next year. 

Please pray Madeline clears quickly with no side effects, and that we are home soon. Thank you for staying #Madelinestrong for so long. The meals keep coming, the thoughtful cards, texts, and calls never stop, and we are so thankful. Keep praying as we near the end!

If you need a new (or another) #Madelinestrong bracelet please just click on the link. 

https://goo.gl/5a26j7

Wednesday

I am sorry this is just getting posted. I thought I hit publish earlier tonight but it must have not gone through!

Madeline made counts at clinic yesterday and she was admitted mid-morning for chemo. I prayed hard for patience yesterday because each week things seem to get more and more delayed and truth be told, my patience is definitely running thin. We were happily surprised that they were able to get the chemo in record time with NO DELAYS, and it ran from 4-8pm last night. 

Madeline started feeling bad as soon as it started. I think at this point some of it is psychological, and the first week seems to always be worse than the second. I think she is feeling so good and then her little body just gets angry about the big disruption. Brad stayed with her last night so I could pick up my mom from the airport and take her to the house. She slept through much of today, but I would rather her sleep than feel miserable. I am staying with her tonight, although I am a little worried she will have her days and nights turned around with all this resting today. This is the chemo you have to clear to go home; so our prayer is always that she clears it quickly, with no side effects, and that we will be home on Friday so she can enjoy the weekend before another round of the same next week. Some of her blood work came back a little funky tonight so they will retest her in the morning. If you happen to read this tonight, please pray it was just an error and all will be right in the morning. Just THREE more inpatient weeks to go!!

One of Madeline's good friends, Maddison, brought this awesome sweatshirt blanket home from Pine Cove for Madeline last week.  The girls went to camp there last summer and are hoping to return this summer. When we registered last summer for this summer, we had no idea all of this would happen, so it's something our families have been praying about, especially the Maddies. We requested to switch to a session later in the summer so that Madeline would have more time to recover, and the girls are at the top of the waiting list, but so far no luck switching. As I watch her all wrapped up in that blanket today, I'm asking if you would please pray she will get to go to Pine Cove this summer. It is something she is really looking forward to, and she's already given up so much, so I really want it for her. She's just so sweet and never complains or asks for anything. That has always been her way. So when she does ask for something, you just have to do it, and this one means a lot!

As always thank you for all the sweet texts, calls, prayers and good thoughts! We are so grateful. 

Delayed

Madeline did not have high enough counts to start chemo today. We are back home and will go back next Tuesday. Madeline gets a spring break after all, even if it's super rainy here! 

The good news is that she is feeling fine so we are glad she can enjoy the week! 

And yes, Mickey Mouse is #madelinestrong too! 

High Point, Low Point

Hello sweet friends and family! One of my favorite things we did as a family when Ben and Madeline were little was to play "high point, low point" each night. Sometimes this happened around the dinner table, sometimes it was when we were tucking them in. It's a good reminder that good and bad things happen to everyone through the day, but that you can't let the low points outweigh the high points. We are also blessed with one child who always had an abundance of low points and another child who could name an equal number of high points of the day. Always an interesting conversation that now I wish I would've recorded. 

So...High Point was last week. Outpatient chemo was awesome, efficient, and fabulous. We arrived at 9:30 and were home before noon. We enjoyed every minute of it! Madeline barely made a dent in her homework before it was time to leave, and I'm sure the nurses thought I was crazy that I packed such a big bag of things to entertain ourselves because we were there for such a short time. 

It was Ah-mazing! It was kind of how I imagined this process would be, and we were so grateful to be home every night. 

Low Point - yesterday. Madeline had a clinic visit at 2pm. This is just a little check up and some blood work. We left the house at 1pm and didn't get home until after 10pm! Turns out Madeline's numbers were really low. She honestly seemed fine, maybe in hindsight a little more tired and pale, but nothing out of the ordinary. The doctor decided she needed blood and platelets before we could leave and I was completely unprepared - no chargers, no iPad, and no snacks!!  Timing put us in a bad position where the outpatient area was closing and there were no openings on the oncology floor so I think everyone kind of dragged their heels hoping we would become the other person's problem. I didn't ask the right questions before we left the clinic which delayed things, and the doc ordered the blood over a much longer time than other transfusions she's had. We had to juggle to get Ben home from track practice and fed - thank goodness he is so self-sufficient and for meal delivery!! Thank you Jenn & Shelley for SAVING us. Madeline was so patient and sweet through all of it. She was happy to have American Idol to watch to help pass the time, and very relieved to crawl into her own bed last night. 

We will be back for inpatient chemo (aka spring break medical city) on Tuesday. Lucky us! 

My picture today was sent to me from the most thoughtful "moms in prayer" group. I am so thankful to them for praying for our family, and for letting me know we are prayed for. It means so much!

I have three friends right now who are facing the loss of a parent. It's hard to believe that I have already arrived at that stage of life, but today I am so thankful for my mom. She literally dropped everything and came to Texas to help us when Madeline was diagnosed. She makes sure Ben is well taken care of, that we have food to eat, and that our household keeps going. She is headed back to town on Tuesday to help and I am so thankful that she is coming. I can't wait to see her and give her a big hug. Last time when I picked her up at the airport we were dressed alike - it was so funny! So if you haven't hugged or called your parents today, you should!

Please pray that Madeline's body recovers quickly and that she doesn't suffer from any side effects. We are so thankful for this weekend together, and pray that the upcoming week of chemo goes smoothly for her. Please also pray that I can be patient while we wait for her body to clear the methotrexate. This is getting harder and harder for me each time. I'm thankful that we only have four more weeks of it, but ugh, I'm already dreading it. 

I will update again next week.  Enjoy the weekend!