January 19, 2016

Standard

Maintenance Day 285: We’ve Come A Long Way

Thursday was Scarlett’s monthly appointment. We met with Dr. B for the first time in quite a few months. He looked at Scarlett and was amazed with how well she looked. She really is thriving! All of her labs were great. If she continues to do well next month, we will increase her 6-MP back to her target dose. She will then be back up to 100% of all of her medications. Scarlett is even growing! So much in fact, that two of her medications had to be adjusted to reflect her new height and weight.

The only problem that she encountered this month is the itchy feet. Her feet still have a red rash under the skin and red, dry, cracked skin above. Her feet itch so badly, especially at night, that she typically requests an ice pack to take to bed. The cold helps the itching to stop enough for her to fall asleep. It appears that she has some sort of fungal infection. So we added two topical medications. If the infection isn’t resolved by her next appointment, we will consider adding an oral medication as well. Since she is immunocompromised, it could take a while for it to go away. But it honestly looks a lot better already!

Evangeline also had an appointment this month. She met with the Child Life department to discuss her fears. She was so excited to go do a project with the “play ladies”! After she met with them, they came back to discuss their conversation. She talked about how she’s not afraid to go to doctors any more because she goes to doctors to get stitches and Scarlett goes to make her cancer go away. They talked to her about how we go to doctors for lots of different reasons and that Scarlett’s cancer is not contagious. I hope that she absorbed something from the conversation but we will continue to ask and discuss it at home as well. When I asked her what she did, she responded “mom, I am not going to talk about that. It’s a secret!”

This past week has gotten me thinking about something that I’ve avoided for a year and a half – the end of Scarlett’s treatment. We attended Isaac’s bell ringing at Children’s Hospital on Friday. It was a great experience not only for Brock and I, but for the kids too. We talked a lot about “Isaac’s celebration” and what that meant. Dr. B talked about “the last year of Scarlett’s treatment” and that the end was in sight. We have always tried to take one treatment at a time. Don’t look past that because we don’t want to count our chickens. We never want to assume that she will be cured. But we also want to start thinking about Scarlett’s celebration. Scarlett says she wants a butterfly party with balloons and a pink cake. We will cautiously start thinking ahead and planning for that day.

In the meantime, we were able to look back a little bit on Friday. This was the first time that we were at Children’s since Scarlett’s diagnosis. We were quite nervous about how this would feel. As soon as we walked in the door, we saw the fish tank. It was the fish tank that we walked to every day. The fish tank that we took their first pictures in front of when they saw each other. As they climbed up to sit there, my eyes filled with tears and my breath caught. Everything was so different this time. We were in a better place. We have the future to look forward to. We are stronger and better than we were before. It was a great moment to remind us of how far we have come. Congratulations Isaac!

January 9, 2016

Standard

Maintenance Day 276: New Year’s Goals

Life is too crazy to make resolutions. We set goals this year instead. Our goals, like most people, are for health, wealth and happiness.

Scarlett will be finishing treatment in December if all goes according to plan. Our obvious first goal is to keep her healthy and out of the hospital. That may prove a little more difficult later in the year because she is starting school! But in addition to that, we want to work on the health of everyone in the family. Evangeline will start her counseling sessions next week and Brock and I hope to begin soon as well. We have a lot of emotions and memories to deal with. We are hoping that talking to someone will help with that.

While it would be awesome to come into a few million dollars, we are not counting on that. We obviously plan to pay our bills, refinish our basement, and hopefully add to our savings. But the wealth that we are referring to is appreciating the value of other things in our lives. We would love to spend more time with our family and friends. We want to take advantage of the “wealth” of opportunities that we are provided. And we want to continue to spread our good fortune to other families in need.

Finally, we plan to just be happy this year! Brock and I hope to do one selfish thing this year – a weekend away or just a night out once a month. We plan on visiting museums for extra lessons with the kids, going on vacation with family, and joint a few classes or sports. We want to try new things this year!

Scarlett will have her next appointment on Thursday. She will get another lumbar puncture and her typical chemo. It will be another long day at clinic but we look forward to crossing another month off the calendar.

Happy New Year!

December 7, 2015

Standard

Maintenance Day 243: Reassurance

This morning, our girls had their kindergarten screening. It is an assessment of 3-5 year olds and whether they are ready for preschool or kindergarten. Brock and I go into it with the mindset of it being an idea of where they stand. Simply that.

The process today was a reminder of just how different our daughters are. When the screeners came in to get them, Evangeline stood up, did a fancy turn and “tada’d”. Scarlett just quietly stood and followed them. Evie told a long winded story as she led all of us down the hall.

Brock monitored Evangeline’s evaluation while I took Scarlett. Scarlett was very serious and answered all questions with a matter of fact, straight answer. Her drawings were near perfect and she followed directions to a T. “Right here?” she would ask as she put her pencil exactly where the screener had pointed. The woman was greatly impressed when Scarlett described a block as “a green cube that you build with”. Scarlett scored at the top of the range which places her at a 4 1/2 year old level at the age of 3 and five months.

Evie, on the other hand, was all about silly. She followed directions very well but got distracted by her sister. Brock said that she spoke in baby talk, mispronouncing sounds and speaking in a high pitched voice. She managed to convey her intelligence because she score at almost a four year old level. We are very proud of our girls!

After the screening we went home. Evie pulled out a puzzles and began to work on it. “Mama, look I did it!” she said. I kindly told her that she had a few pieces in the wrong spot so she took it apart and tried again. I said “Evie, I’m so proud of you because you didn’t give up and you tried again”. She replies “mama, I’m so proud of you because you saw I did it wrong and told me to try again”. Wise words and much needed encouragement from my three year old!

Things like this are a reassurance to us, not just to let us know that maybe we are doing something right, but to reassure us that, so far, we did make the right choice when it came to radiation. Had Scarlett undergone that treatment, she likely would not have scored so high. Her evaluation may have taken longer, she may have been less confident. It is a decision that we are still thinking about, stressing about, and living with. But moments like this remind us that Scarlett is who she is regardless of her cancer. And Brock and I are a little more confident that we made the right decision.

December 4, 2015

Standard

Maintenance Day 240: So Close Yet So Far

One year from today will be Scarlett’s last dose of chemo. Wow! I can’t believe that I can actually say that. Even when I think it or write it my breath catches. It’s difficult to count on tomorrow let alone one year.

When she began treatment, I told myself to only focus on today. Don’t worry about tomorrow. Don’t count on next week. We just have to get through today. I didn’t bother looking at the next step of treatment or when this would all be over. I didn’t want to overwhelm myself with the future and I’m smart enough to know that, to us, she will never be “done”.

The routine of oral chemo is getting old however. She takes a liquid form of mercaptopurine that must be given at least two hours after she eats. I have an alarm set on my phone to go off at 9:30 every night. I go to the kitchen, get my gloves on (because I’m working with poison), shake the bottle, draw up her dose and go upstairs to medicate/poison my daughter. By this time she is fast asleep but as soon as the syringe touches her lips, she puckers them like a hungry baby searching for her bottle. She drinks it down like a good little girl, stretches, and rolls over. The same routine every night. Even in her sleep, Scarlett is obedient and cooperative.

Although we can casually say in conversation “one year left!”, we are still terrified every day. This week, she has woken a couple days saying her legs hurt. Last week her back hurt. It brings back painful, vivid memories of watching her cry during swimming lessons because of the pain of kicking her feet, of her orthopedist telling me “put her down and let’s see what she does” – only to have her collapse to the floor and cry. These memories play like movies in my mind that I can’t turn off. They don’t fade over time. The worry and panic doesn’t go away. After seventeen months, I don’t foresee that diminishing in one year’s time.

As this year passes into next, we will continue “one day at a time”. In the back of our minds, we may remember occasionally that she has 366 days of treatment remaining. But at the forefront is a huge battle mixed in with birthdays, vacations, Christmas, school and lots of fun. We have a lot to do in such a short time.

November 20, 2015

Standard

Maintenance Day 226: Checkup Complete

Thursday was Scarlett’s monthly check up. It was a very full appointment. We brought Evangeline along so that we could get some advice regarding her as well.

All of the nurses and staff that we saw couldn’t believe how much Scarlett has grown this month and how long her hair is getting. She is looking so mature all of a sudden. She barely cried when she was accessed today. Evie, on the other hand, sat on Brock’s lap with her eyes fixed on her sister and her hands over her ears. When the nurses came in with Scarlett’s meds, Evie wanted to go for a walk. She’s very protective of her sister and hates to see her hurt.

Scarlett’s appointment was with the new clinic doctor. We hadn’t met her yet so we were a little apprehensive. It turns out she is really nice, very personable, and looks very young! She gave Scarlett her check up, went over her labs and checked her feet. All week we have been worried about the rash that kept appearing and disappearing. Of course, on Thursday, it was completely gone. I guess that’s a good thing? Since her labs were still stable, we will be increasing her methotrexate back to the full dose. We waited/played for about 45 minutes before Scarlett was given her medication over about 30 seconds. Easy peasy.

While Scarlett was getting her checkup, I had a short meeting with the Child Life counselor. I told her about Evangeline’s meltdown a few weeks ago. We discussed my fears, Evangeline’s fears and solutions to work through them. During Scarlett’s next appointment, Evangeline will have a counseling session to determine whether she can verbalized her feelings. If so, she will continue to meet with Child Life. If not, we will wait a few months and try again. Ashley, whom I have always loved, was so kind and reassuring to me. She stressed that Brock and I are doing everything we can under the circumstances. Our children are thriving – no matter how worried we are.

While we were waiting, the girls were able to make a cute snowman. They were adorable the way they worked together and encouraged each other. They have been so supportive of each other recently. On the way to the hospital, I saw Evie grab Scarlett’s hand and say “now, today Scarlett, when you get your butterfly, don’t cry and be really brave”. Scarlett replied “ok. But even if I cry I am still brave”. Very true, Scarlett! Then, on the way home, they discussed whether Elsa and Rapunzel lived in castles (Rapunzel lives in a tall tower and Elsa lives in an ice castle by the way). The best conversations I hear every day comes from them.

Last night was the first dose of prednisone for Scarlett this month. By the time I called home at four to check on things, Scarlett was having her first of many meltdowns for the week because she couldn’t draw a bow on Minnie. After Brock drew one for her, she had her second meltdown because it was too big. All we can do is laugh! The best solution is to just have fun as much as we can.

September 27, 2015

Standard

Maintenance Day 172: Love and Support

Today was far too busy of a day to just label some pictures. We began the day with the Courage Over Cancer 5k in Neenah with our Snowdrop friends. This year’s race was run in memory of Lily and Harrison, two of our Snowdrop friends that earned their angel wings this year. Although we didn’t run, it was a great opportunity to catch up with the majority of our Snowdrop family. We discussed plans to attend CureFest next year, met friends we have only known through Facebook, caught up with families we haven’t seen since summer, and even found Scarlett a future boyfriend (I’ve got my eye on you Isaac!). It is always so nice to talk to families who are living the same life as we are. No matter what they are going through themselves, they always offer help if we need it.

Part of the run is climbing up a very steep hill at the end of the race to symbolize the struggles that our kiddos have to overcome. This year, we stood on top of the hill to cheer the runners on. We were told that four women were running the race for Scarlett. Since we arrived after the race started, we didn’t know who it was. We hadn’t heard of anyone that we knew running. So we waited until we saw “the girl in the orange tutu”. It turned out to be my best from high school who had driven almost four hours just to run in Scarlett’s honor! We were speechless and crying by the time she finished the race. Amy Francisco, you have no idea what that means to us. To know that Scarlett has affected and inspired people is amazing. I don’t even know what to say to thank you and your friends.

After the race, we were also introduced to a wonderful family. Nathan is growing out his beard for the next year to raise money for childhood cancer. This part of the story we knew. What we didn’t know is that he plans to shave it after the Madison Iron Man next September. And that he plans to train and run that Iron Man for our Scarlett! We greatly hope to be able to be in Madison cheering him on!

After a morning with Snowdrop, we made it to our friend Ava’s birthday party. She is so sweet and we had a lot of fun. The kids will be in a candy coma for weeks!

Finally, we made our way to the Live 4 Lily benefit to honor Lily. I remember the day she flew to heaven. I found out while I was at work and just couldn’t hold in my emotions. Losing Lily made me cry like I hadn’t done since…I don’t think ever. We never had the opportunity to meet her in life so we wanted to be sure to support her family. I met her mom and little brother. I admire her so much. I don’t think that I could be as strong as she is. We also had the opportunity to meet Harrison’s family. Again, they are so amazingly strong. These families are a true inspiration to us to continue the fight, continue to give, and continue to raise awareness. Their deaths were so unnecessary. We did win four baskets at the benefit – we “bid” on baskets that we could divide up and add to our backpacks.

If you are interested in honoring Lily and Harrison, please consider signing up to run/walk a Snowdrop event or you can donate directly to the Snowdrop Foundation. Thank you Snowdrop friends for an amazing day and fly high little Lily and Harrison!

September 23, 2015

Standard

Maintenance Day 168: Growing up

Today was the beginning of Scarlett’s third cycle of maintenance. Last night, I chose to be honest and proactive with her. She is growing up, maturing, understanding and accepting more. I told her that tomorrow was the day she would go back to the doctor, that she would get her poke in her back, her butterfly, and that she wouldn’t be able to eat. She cried. She protested. She understood.

It has now been 168 days since the start of maintenance and I can’t believe how much Scarlett has changed! She talks non-stop whereas four months ago she spoke only when she really had something to say. She runs her silly little one arm swinging run when before she was slow and a little “limpy”. She can now climb the stairs without holding the railing instead of pulling herself up with it. She dances, sings, laughs, reads and tells stories. Scarlett and Evangeline get along better now. They play together and interact more. She has blossomed into a funny, sweet, and loving little girl.

Seeing how far she has come makes me so sad for all that we missed. We didn’t realize that Scarlett was so sick that we didn’t truly know her. She didn’t have enough energy to play or laugh or really show us her personality. We thought she was quiet and reserved. She is proving us so wrong!

This has been a trying but joyous month for the rest of us. Tate started kindergarten this year and didn’t get off to a great start. It took two weeks of crying (both from him and myself) to really get into it. It made for long days of worrying whether he was crying at school. He seems to be doing better now. He talks about friends he is making at school which makes my days much easier.

Scarlett’s labs were good today (Hgb 12.5, Plt 226, ANC 1624) so we will increase her mercaptopurine by 60%. If she tolerates this dose increase, we will increase her methotrexate again next month. We are hoping and praying for another healthy and uneventful month.

As a reminder, this Sunday is the Courage Over Cancer 5K. Come and join us if you can! Our Snowdrop friends will also be doing their 24 hour run through Appleton. If you see them, give them some encouragement and kindness. Or go out and run with them! They do this for some really great kids (just a little biased here!) and are really great people themselves. Also, our next Chain of Hearts recipient is a little girl who loves My Little Ponies, nail polish and dress up. We are always looking for donations to fill their backpacks nice and full! Thank you to everyone who has donated, plans to run, and has done so much this month to raise awareness for childhood cancer!

August 26, 2015

Standard

Maintenance Day 140: A Good Day

Today was another chemo day for Scarlett. The day started off like a normal day. I was woken up by Scarlett trying to climb into our bed saying “I have a tummy ache”. Scarlett complains of tummy aches every night when she doesn’t want to go to bed so usually we take this news with a grain of salt. I got up to take a shower with her sleeping in our bed. When I came out of the bathroom she looked at me, covered her mouth, and then proceeded to throw up everywhere. We are thinking she was sick from her weekly dose of methotrexate the night before. She has never thrown up with it before but, there are always curve balls during therapy.

The whole family went to Scarlett’s appointment today. Child Life asked Scarlett if she wanted to show Tate and Evie again how Chemo Duck gets his butterfly. She gave Scarlett Chemo Duck and the box of supplies and left the room for a few minutes. I watched Scarlett open the alcohol wipe, clean Chemo Duck’s chest, use the sponge to clean more, poke the “needle” in the port, put the pillows under, tape the spiders on, attach the syringe, pull the plunger to draw up the blood…every step in the correct order and done perfectly. I don’t know whether to be incredibly proud of her or incredibly sad that my three-year-old can access a port better than I could.

Scarlett’s labs were excellent today. Her Hgb was 11.9 (goal of 12), platelets 231, and ANC 1275 (goal 1000-1500). It seems that her body really needed that dose decrease. This month we will increase her methotrexate by 50% and see how she does next month. Hopefully, after her next appointment, we can increase her 6-MP also. But, all in all, today was a good day.

We brought all of the kids today for a couple of reasons. This is probably the last time that Tate will be able to go to an appointment for quite a while. We like to bring him every now and then so that he can get any questions answered and have the opportunity to see exactly what is going on with Scarlett. We also wanted them to be the ones to give our first package. We want the kids to watch us do this every month, help us choose some of the things that we give, and hopefully do a couple themselves in a few years. We spoke with Child Life and asked them to help us by – without giving us anything specific about the patient – to help us design packages specific to them. They were very excited about this idea and gave us a list of five children that “needed” a gift. This made me very sad to hear the word “need” because I don’t think that, not a single day since diagnosis, we ever needed anything to lift our spirits. I am very excited that we have the opportunity to make some children feel better in some small way.

Again, if you are interested in more information about our goals, please message me. If you would like to help, message me. Our next child is a boy, Packer lover, interested in Legos, pirates and board games. I am super excited about this package and can’t wait to get started. I think this project will make the 28 days between appointments go very quickly.

August 8, 2015

Standard

Maintenance Day 122: “Happy” Cancerversary

Today officially marks the day that Scarlett was diagnosed with leukemia – her first cancerversary. As I have mentioned this word and our plans for the day, I have gotten a lot of strange looks and the inevitable “why on earth would you celebrate that?” We aren’t celebrating because of the monster that lives inside her. We are celebrating the people that we have become despite that.

Today, Scarlett is thriving. Despite everything she has been through, she is happy. She is on her way to being healthy. One year ago, no matter how optimistic a person is, we had to admit that this point might not come. For some families it doesn’t. And a few months ago, when she had a 50/50 chance of beating an infection, we prayed for this day. Today, Scarlett is running. She talks non-stop. She laughs and plays pretend. She has come a long way from the cold, weak tired little girl that just wanted to lay down and watch movies. So on her first cancerversary, we will celebrate the life that is because she is a fighter.

Today is also a celebration of the road we have travelled. One year ago, I can say that we were alone. Since that day we have made great new friends that travel this road with us. We have met fighters, survivors and angels. We have celebrated their victories and cried when they have stumbled. We have shed tears and said prayers when they earned their wings. All of these things that we never had the time or courage to do before. And we have had the support of loved ones, friends old and new, and strangers that have lifted us when we couldn’t take another step. Today is as much a celebration of all of you as it is for us.

We are celebrating today because we have become better people. We are more accepting, open minded and forgiving. We have a purpose in life now. We have been encouraged to give back and pay it forward. No matter how much we do in the future for other families, we know that it will never be enough. There are other families out there that don’t have as many blessings as we have. One year ago we couldn’t see that. Today, it is all we see.

So today, on Scarlett’s first cancerversary, we will celebrate. We will eat cake and have parties. We will laugh and cry. And we will look forward to next year when we can celebrate her growth and survival as well as our own.