I'll see if I can keep this one short.

Lukas is not feeling well.

For those that didn't know, last week we spent Wed-Sat in the hospital with RSV and high temperatures. 

He's feeling better with that, but the chemotherapy this round has wiped him out. His counts are low and he's in need of a transfusion,  Monday, if not sooner. 

He's miserable. His hair is falling out again, which is fine, sad, but it's just hair, it's okay. But the sadness in his eyes is brutal.  It rips my heart up. 

I know we'll get through this but in the moment it's so hard. 

Please please say prayers for healing. Say prayers that we get to watch our Lukas make friends, learn, play sports, go to prom, get a job, become a uncle, grow old. 

A few little prayers for our peace would be appreciated too.

We didn't make counts this week, so next week we start our next cycle. It'll likely be a bit harder on Lukas has it has multiple immune suppressants. So prayers that he stays healthy!! 

Then we'll have another 8 week cycle after this one then we should hit maintenance by mid to late summer. 

Maintenance is another 2 years, but it isn't as frequent, which in turn, hopefully, helps us in many many ways. Less dr visits, less chemo, less expenses, more time together as a family, more good days, more freedom to do things like vacations.  

2 years.....in 2 years my big boy will be 5 and starting kindergarten. What an awesome milestone that will be! 

Thank you for the continued prayers and love.

We have been off of blina for a week now and it's been a great week. He's in full-blown toddler mode. Walking everywhere, climbing everything,  giving you serious side eye and eye rolls when you tell him "no no" or "stop ".

We continue to be amazed at how un-phased he is over all of this. Haha, at least someone is. 

The stress of the issues between Anthem Blue Cross and the University has been weighing heavily on me. It's out of our hands, and luckily it looks like Lukas will still be able to get the care he needs without our insurance denying him, but we may end up needing to find a new doctor for Abigail and Jensen if they (insurance and hospital)don't end up coming to a solution soon. 

We have the house back on the market.  If we could have prayers that we can get our house sold sooner then later, that'd be appreciated.  Once it sells the stress levels related to financial strain should improve. 

Spring is here and the kids are about to be busy busy busy.

Jensen is doing soccer this spring and baseball this summer. Abigail is playing softball this summer and is undecided if she wants to try any other activies before then. 

We've decided to let the kids decide if they want to join summer school, the verdict looks to be a solid no as of right now, which is fine. With everything that has happened in the past 6 months we wanted the kids to feel like they have some control and say on what is going on in their lives. Hopefully this helps. 

We appreciate all the prayers and support we've received and thank you all for your continued love moving forward.

Day 1 of 3 night stay at hospital for 2nd round of blina (5th round of chemo if I've counted correctly).

Poor guy had a reaction to the drug this time. He seems fine as far as we can tell, just looks like a rash, but it's scary nonetheless. These drugs, while amazing at treating and preventing relapse of cancer, can also have nasty (sometimes deadly) side effects. 

Another down syndrome mama said when her son took this particular drug, he had seizures and ended up in the ICU. 

Let's pray that the rash is as eventful as it gets!

Also, side note, we found out that THIS drug cost $700,000 for just 1 round!! We've already had 1. I don't know how many more we'll have to do. 🤦‍♀️ The doctor said it's the most expensive chemotherapy drug they use in the hospital. (Yay 🙄)

So on top of being anxious for the chemo, anxious cause he's back in the hospital (standard protocol for this drug), anxious because of the reaction, anxious over the possibility of other side effects, anxious over how the kids are handling him being away from home again and us being gone more again, anxious for him catching a nasty virus, I'm also anxious over bills more than ever! 

Every share helps.

Every prayer helps! 

Pray that I can truly embrace giving it to God. Cause He knows, I can't do it on my own.

Hi, first I want to thank everyone for their support thus far, secondly, I want to apologize for not being good at making updates. I want to be the mom that is on it, and prior to this, I kinda was the type to be able to type out long, thought out updates and blogs. Alas, I've been in such a survivor mode since the diagnosis,  that I don't have the mental capacity to put thoughts into words. 

Lukas is doing good with his treatments. He is growing and learning and just blowing our minds every day with what he can do. 

He is a fighter. So so strong and determined.  Nothing is going to stop him, and IF it slows him down, he fights that much harder to get back on pace. 

Yesterday we found out that his next cycle will be another 28 day 24/7 port chemotherapy.  We'll be in paitent for 3 days to ensure he has all the help he needs as this one usually causes fevers for the first 3 days. (last time it ended up being 5 days of fevering)  Luckily, this one doesn't usually cause other side effects though as it's not one that suppresses your immune system.  

We get 2.5 weeks off from chemo, which will be great, before he goes back for his 3 day stay and start of the new round. 

Let's see, more updates for those that didn't know. Lukas turned 3!! Our New Years Eve baby turned 3 on the last day of the year, which seems impossible! It also meant that he aged out of First Steps, which was an amazing program we got to be a part of for his physical,  occupational, and speech therapies. 

So since he aged out he has been able to start preschool.  That's right, our baby is now a big preschooler!! 

He only goes 2 days a week, from 8-11, but it's a great start and we are so excited to see how he does. 

He also started pt at a new place and will be starting ot soon and doing more speech therapy with a place he's been going already. 

So we are busy as ever! 

Jensen is doing great, growing like a weed and Abigail is learning the new life of palete expansion and braces. It's been a unpleasant week because she's struggling with eating her favorite foods and the pain of her new mouth accessories,  but she's also done so well.  

I'm one proud (and tired)mama! 

Thank you again for your generosity and more importantly, your prayers. If you could please continue sharing this fundraiser we would be so grateful.  Times are tough for us all, Lukas may be extra, but he really doesn't mean to be SOOOOOO expensive. Haha

Update:

For those that don't know, Lukas goy the official call on Oct 16th that he is in remission!!!

Praise God!!!!

However this is not "behind" us. Lukas will continue to receive chemotherapy for the next 2-3 years. This is to prevent relapse. 

He had his first chemotherapy on Monday for this "consolidation " phase. It consists weekly IV chemo infusions (1 a week for 4 weeks) at the children's cancer center, 3 times a month lumbar puncture/spinal infused chemotherapy, and a chemotherapy drug at home every night via his g-tube (for 4 weeks)

At the end of this consolidation phase we'll go over what the next phase will be. 

Sounds like it may be a chemotherapy that puts us back in the hospital 3 or 4 times for 3 days at a time. 

Then at some point he's going to be getting 24/7 pump chemo that he has to wear a little backpack for when he's not sleeping or in the bath. 

The intensive chemo should cut back drastically in 6-8 months, based off of his counts, so sometime between March and May. Then he'll just need to be going for inpatient once a month. 

This is all fluid, as Lukas's body may require breaks so we don't make him too sick/worn down. 

Please keep the prayers coming that we keep Lukas safe and protected from viruses and keep the prayers coming for his strength and continued remission! 

Through God we will succeed!!

Please share, anything at all helps as I've not been able to really work since Lukas was born due to his specialty appointments and therapies.