I had written this last month but for some reason it didn’t publish and some of the pics didn’t load correct so I’ll try again!
The past few months have been complete chaos around here. We had just felt like things were getting kind of ‘normal’ when our 9 month old was diagnosed with Acute Myeloid Leukemia or AML for short.
When one family member gets diagnosed with something like this it feels like the whole family has been diagnosed… it’s been a challenging situation.
Hers was actually caught before it had transitioned to leukemia so she didn’t have any of the common symptoms… you wouldn’t even have known she was sick. In fact, she had just gotten a clean bill of health the day before from her cardiologist and we had celebrated that evening with a dinner.
When they say things can change in the blink of an eye it’s not a joke. Ours changed with one little email. I couldn’t believe what I was seeing when I saw the test results and I frantically tried to find the hematologist’s phone number but they called me as I was looking for it. (I later realized it had been saved in my phone but I wasn’t able to recognize it for some reason.)
I had been quietly praying that it was a mistake or that it didn’t really mean what I though it meant but in my heart I already knew and I just burst into tears when I saw the caller ID because it only confirmed what I felt. I knew that it wasn’t just coincidence for them to be calling me at that time.
Things just turned into a blur as I called my husband while I waited for the new results. We tried to maintain a sense of normalcy for the day and even proceeded with our Zoom Therapy sessions. Later the doctor called and said we needed to be admitted for more tests and a biopsy… that’s when it really hit. We quickly packed up, made arrangements for the other kiddos, and left for the hospital where we spent the weekend. We had originally had plans to take her to Granny’s pool for the first time.
I knew I had to reach out to my family and friends to get our prayer warriors down on their knees to send up as many prayers as we could for our little one. My sisters ended up taking the kiddos for the weekend which helped give them a distraction and let us focus on Shyanne.
I couldn’t bring myself to tell them the why at that moment but when we knew more we did.
I can’t even begin to tell you the thoughts going through my head at that time. I was worried about Shyanne but also about our other kiddos. I worried about how we would be able to juggle the hospital, work schedules, homeschool, and everything else. I remembered our NICU days and I knew I couldn’t be away from her like we had to be then. My heart was breaking as I tried to come up with a solution in my head.
I also thought about all the birthdays, holidays, and special events that we’d already planned for. How would we even begin to sort all of this out? Would everyone’s lives have to be put on pause? We’d only just began to breathe a little bit easier as the pandemic seemed to be fading away.
This felt like a nightmare and I had so many worries but God knew this was going to happen and He already had a plan in place. He has shown us so many blessing during these past few months and we have come to see that He truly is standing beside us during our hardest times.
As we learned more about what the treatment would entail and our lengthy hospital stays I felt like I wasn’t going to be able to do it. I knew how bad it had hurt me to be away from the kids when she had her heart surgery and I couldn’t imagine doing that again. These stays would be even longer than that one and the only way to really be safe would be for me to limit contact with others… the only thing I could do was ask prayers because I needed strength I didn’t have.
The chemo used for babies/children is the same chemo used for adults… just smaller doses. It’s crazy that they haven’t come up with better ways to treat out babies as the current treatments often cause death and/or serious side effects in our little ones.
Nothing could’ve prepared us for the past few months. We’ve been through so much and I’ve witnessed our daughter go through so much that I still can’t even process it all. She’s been poked so many times… we were so grateful to get her central line placed to minimize the needles but she still has had to have a few.
The central line has also brought its own set of worries as infections can be very serious. Keeping a one year old from playing with her ‘new toy’ also presents some challenges and I have constantly been busy coming up with ideas to keep her lines safe.
She’s been so sick at times, even with the anti-nausea medications and I’ve never seen a child throw up so much or with as much force as she has at times. It’s exhausting to go through night after night, day after day of that while she has chemo. It’s even more heartbreaking because there isn’t a lot we can do for her. We’ve tried medications, aromatherapy, and other ideas but it’s just one of those things that we just have to ride out.
Then there’s the fevers and the mucositis. The fevers can come on quite suddenly and we’ve come to expect them with the one medication. As soon as we notice one trying to start up we get ready with ice packs, cool wash cloths. I get my area set up with a drink, snacks, puke bags, the call button and whatever else I might need as we may be sitting in the same spot for hours at a time. The mucositis causes horribly painful sores in her mouth and digestive tract. Oftentimes hers are not visible and about the only relief she can get is with morphine. I never imagined I’d be asking for them to hook my one year old up to a morphine drip!
God has shown us that He will provide us with whatever we need if we ask him. He has shown us just how many true friends we have and who we can count on when we need them. He has shown us how wonderful our family is and how they can all pull together in a time of need. He has shown us ways to help even when we can’t be together.
He already had His plan in motion before we knew about all of this. He had already made it where my oldest daughter would be in the position to pack up her home and come here to help out. There were a lot of things that had led to that… things that we hadn’t completely understood when they were happening but now we can see we was putting things in place. She should be here until Shyanne finishes treatment but will need to return about the time she is finishing up… even with the delays we’ve had. His timing is always perfect!
The kiddos at home have benefited so much by having their sister here. I know they wouldn’t have been doing as well if she hadn’t been able to be here. Her being here has also allowed Mr. Awesome to be able to work to provide for the family and that in itself is a HUGE BLESSING because I really don’t know what we would’ve done if he hadn’t been able to work.
The other older kiddos have helped out in many ways as well. They’ve called to check on everyone and sent things for the kiddos. They’ve come to visit and spend time with them and with their sister. Some of our family has also been trying to help out with the kiddos and spending time/providing activities to help keep them busy. We are so very grateful to everyone who has helped out in so many ways!
He has also brought strangers into our circle and made them friends even though we’ve never met. We had so many people reach out to offer the prayers and support. We’ve even had people sending little gifts to help brighten our days… every gift seems to come at just the right moment too! It’s overwhelming to think about how many people all over the WORLD are praying for our little family.
There have been a few organizations that have helped out with different needs as well and we are so very grateful to them for everything they have done for our family and other families in similar circumstances.
We have been first hand witnesses to His miracles and have witnessed the healing power of prayer time and time again. Our little one has been through so much but yet she is the happiest person ever and she can turn anyone’s day around with the love she shows to others. I can only imagine that the love she shows is just a small fraction of the love He has for us and it is so pure and genuine… she was sent here for a reason and part of that is to spread joy, happiness, and love to everyone she meets.
He has given us immeasurable strength time and time again. I can’t even count the times that I’ve cried out because I felt like this was too much and I didn’t feel like I could go on another minute let alone another day, week, or month but He comes to me and brings me the strength I need.
He also brings me a calm and peace that lets me know everything is going to be ok. Even when things weren’t looking so good I was able to trust Him and His plan no matter the outcome. It wasn’t easy and it still isn’t at times but He has been teaching us so much through this experience and I know He is preparing us for something bigger and I can’t wait to see what it is.
We’ve been trying to use this time to slow down… not a lot you can accomplish from a hospital room but we’ve done pretty good so far. We’ve also tried to make as many special memories as we can. I worried about all that we’d be missing out on but He has provided us with so many ways to make things special like movie nights with the kids when we are home and wonderful staff at the hospital who help us to make everyday as special as we can.
God truly has provided for us throughout this crisis and although we have faced some difficulties we are all together and we have a house over our heads, clothes to wear, shoes on our feet, and food on our table so we are Blessed. We have been able to see what are priorities should be and get rid of things in our lives that we truly didn’t need.
We still have some of the issues we had before like our house needing some major repairs but even that will be provided for in His timing. He made sure we had the electrical taken care of right before this happened so that was also a major blessing. It’s crazy but the time we’ve had in the hospital has actually helped us ‘see’ a better way to remodel the house so that it will actually work better for our family.
With Christmas fast approaching we definitely have a new perspective on things. This year is going to look a little different than most as we just won’t be able to buy as much as we normally do… even though we’ve scaled down over the years our home usually looks like a train wreck of boxes and wrapping paper on Christmas morning. With this many kiddos that can happen quite quickly here.
We’ve already been blessed with many things that the kiddos need, and want, and they’ve already said that they would just like a swing set for Christmas. They have asked Santa for a few smaller items that he is working on right now. Momma has bought some things as well as the braces for the swing set and now we just need to price the lumber and materials so Mr. Awesome can get it purchased.
Our biggest blessing is the fact that we’ve made it through this year in one piece… well mostly. I know I’ve lost a few pieces here and there and sometimes I’ve just completely fallen apart when no one else was around. God has helped me put the important pieces back together and He has made me a stronger person just as He has been doing with our whole family even if they didn’t realize it.
There have been many other issues going on during this crisis because life doesn’t stop just because you need it to. God has helped us figure out which ones needed to be dealt with and how to deal with them. He has also helped us figure out which ones could just wait until He works on them… He has definitely been teaching us some lessons in patience. That was something I had always seemed to have plenty of until the past year or so but I can now say my patience has been replenished.
We wouldn’t wish this on anyone but if it did happen we would pray that they would experience the same peace and calm that we have found through this journey. It has been one of the most difficult experiences of our lives but we have truly learned and grown so much as individuals and as a family and we are grateful to everyone who has been supporting us with their many wonderful thoughts and prayers… we couldn’t have come this far without you!