First off, if we don’t send an update, it means everything is fine and we’re just enjoying our time together as a family. Us not sending a lot of updates is a good thing, it means everything is progressing as expected.
As the title says, we had a good weekend with Sally home. On Saturday my sister was here to keep the boys busy and help me give Sally her medications while Nicole was at work. Luckily the nurses sent us home with a laminated schedule to reference that we keep on our fridge. After Nicole got home we all enjoyed dinner together and a peaceful evening, ending with us giving Sally our first shot at home. She doesn’t like it during obviously, but recovers quickly showing her toughness.
Today, a friend from my local triathlon club who happens to be a professional photographer came over (directly from a race of course) and took some family photos for us. We realized that we didn’t have many (if any) good photos of the five of us together. We also wanted to get a family photo before Sally begins to lose her hair and the other effects of chemo kick in, so knew we had a short window to get this done. Essentially, we wanted a snapshot during this happy time together that we can hold onto should rough times be ahead during this journey to remission. We can’t thank Tony enough.
With my sister being here and Nicole and I actually dressed nicely, we decided to go on a short date. We didn’t go far (a restaurant at the end of the block) but was nice to be able to get out and talk to each other over a cold beer (so classy) and make sure we’re on the same page about things. We also got to catch up on what we each missed during the week. One thing that bothers us is when people say things like “At least Leukemia is curable” or “At least she has the ALL one” or “I just know she’ll be fine”. Leukemia is cancer, its dangerous, especially in infants, and especially with Sally’s MLL translocation. The treatment to get to full remission is very painful for kids of all ages and takes a toll on their families. Diminishing it in any way may make the person saying it feel better, but doesn’t make us feel better. Yes, we hope Sally will be fine and are doing everything we can to make sure of it, but nobody knows what’s in store for Sally over this long and grueling process. We can just take it one day at a time.
Tomorrow, Nicole and our friend Tina are bringing Sally into MSK for the first of her three planned appointments this week. She will have a spinal tap and bone marrow biopsy to track how the first week of chemo went, as well as receive her chemo treatment. One thing Nicole and I have learned is that we can’t expect visits to MSK to be routine as most have not been so far, so from now on an overnight bag with necessities will accompany whichever of us is bringing her. We both have anxiety before going there, including tonight, and discussed that on our date. Speaking for myself, I have barely slept since Monday as I have so many pent up emotions and fears inside that I haven’t been able to get out or deal with yet. It seems like every time I want to cry or let it out, I can’t because Sally or one of the other kids is with me, and I refuse to let them see us upset or concerned, a deal Nicole and I made when all of this started. I know Sally is a baby, but something as simple as waiting for her hair to fall out scares the hell out of me, its what’s going to make this real…that my little cute blonde Sunshine is fighting off cancer. Right now I can look at Sally and as long as her central line tubes are hidden, you wouldn’t know she’s sick. That facade will be gone soon, and know I’ve got to be as ready for it as I can. As Nicole says, our job is to be strong and fight the fight for Sally and be strong for all the kids and each other, so that’s what I’m focusing on.
Thank god for Thomas, who has been reading up a storm and watched an Elmo DVD dealing with pediatric cancer this morning. He’s even been able to tell us things we didn’t know. He’s taking his role of big brother very serious. We let him watch us give Sally a shot tonight, and was very concerned for her. Can’t express how proud of him we are.
We’ll let everybody know how tomorrow goes, please keep Sally in your thoughts and pray her counts and marrow are all in a good place. Thank you all for your support.
There are no words . Our hearts ache for you all and we wish we could do something to ease your pain, fears and worries. Our prayers continue for you all. We can’t even imagine what you are going through. We hope our prayers bring you some peace.
Hoping this week goes as planned. Keeping you all in our thoughts 🙂
I found your site through another child’s, originally on Caringbridge.
Our 4 year old was diagnosed in February. He also has ALL. We live in upstate NY, and are currently almost through the 4th cycle of Chemo. We hope to hit maintenance chemo sometime in September.
I’m so sorry you are also on this train. So far, it is quite scary and unpredictable. We try to lean on our friends and family, although so far, the best support seems to have come from other cancer parents.
Thinking of you and praying for your daughter, you, and for your sons.
We are so happy you were able to not only enjoy a weekend at home with all your children but also a date together.
Prayers that all goes well and all counts are good for Sally.
Find the time and place to cry….maybe on a run or a bike ride?? God knows you deserve it!
Most people who use the ‘at least’ comments have never had to feel the despair of a situation for which these words could present themselves. Very proud of you for your statements about that. There is no ‘at least’ here….just a full on fight and lots and lots of positive prayers! It can be done!
God Bless you all….<3
Dear Matt and family,
So glad to hear that Sally made it home and from the looks of that picture she’s enjoying time home with her big brothers 🙂 Thank you for the thorough updates.
I’m glad you and Nicole got some R & R time even if it’s for a short time. It’s important that you do that when you can and if you have support from family members even better because you will need that right now. I know someone else that went through something similar and it took a village to make it happen and it’s OK. People want to help, whether it’s a meal or driving the boys to practice or babysitting the more support you have the more time you’ll be able to devote to Sally. Also it’s OK to cry I Know I would be. Maybe not in front of the kids but I would definitely do so some place whether it’s screaming into a pillow or crying or shouting outside it’s OK to do so. This all has happened so fast that you have not had time to deal with any of the emotions. Give yourself that time. As for what people say it may seem like they make light of it but it’s because they don’t know what to say. Nothing we could say could make this any easier although we all would wish for it in a heart beat.
As for sweet Sally Sunshine she does seem like a tough cookie but I have yet to hear of anyone say anything good about chemo and everyone does react differently to it. The effects are terrible no matter the age and even more so when you’re little or an infant. I can’t imagine. Taking one day at a time is a good idea for now. Know that my prayers continue to be with all of you. Do take good care of yourselves.
Matt and Nicole, just hang in there. There is no road map for what you and your family are going through. Only those who have walked in your shoes can have any idea. Every moment of the day, know that there are many sending their prayers, hugs, strength and lots of love to support you.
Love and prayers ~
Your bravery is amazing. And while I can’t pretend to know what you are going through and hope I never have to- I want to tell you that you are being strong and brave and the best paren Sally could ask for. Your right, cancer is scary,evil, and unpredictable. I hope that your beautiful baby girl can beat this and get back to being a child. Prayers and love for your entire family. God doesn’t give us anything he thinks we can’t handle 🙂
Hi Kabel Family, so happy for our Sweet Sally as was Moving up. She looks so pretty as always & her beautiful glow & smile just brings this Granny C & Papa L so much joy!! Prayers for your family as always & many hugs. Happy that your stay at the beach was fun for all of you.
Dear Lord again we are coming to you to watch over your daughter Sweet Sally as she spreads your love with her beautiful smile. Wrap your loving arms around her as always on this healing journey & guide the medical team to find the correct meds for her. We know as always it is in your time. But we thank & trust you for all that she has gotten. We ask in your sons name Jesus Christ!! Amen