Sad news UPDATED 1/25

[NandaB]

Update 1/10/18
Wesley will be having his bone marrow biopsy and lumbar puncture today. He is getting well and has been off the oxygen since yesterday afternoon! So thats huge because it means he is getting over the flu and pneumonia. I will update when he is done with the procedures today. 



Hi all. I know I've been AWOL for a while, but you all were such a source of support for me when we found out Wesley had Down syndrome and I have never forgotten that.

Unfortunately we got some devasting news on Tuesday. He has acute lymphoblastic leukemia.

He is too sick with pneumonia and the flu so we cannot do the bone marrow biopsy that will give us more info yet, but we are getting him "well" so we can proceed with cancer treatment. We are at children's hospital L.A. the best place we could be, so now we just wait.

[charlatti]

I’m so very sorry to hear this. Sending love and healing thoughts to you.

[momin2013]

Oh Nanda, it breaks my heart to read this. I'm so sorry - wishing for the best possible outcome for your sweet little guy. Lots of positive thoughts and prayers headed your way.

[ch47wife]

I am a lurker, but I wanted to write and hopefully give you some hope. My niece was diagnosed with ALL in August 2016 at the age of 2. The first 7-8 months of treatment were tough and there were several hospitalizations. My sister had to pull her from daycare and my parents and her MIL have been babysitting so my sister can work. The prognosis is quite good and gets better with some other factors. My niece was able to go back to daycare in April and on what they call maintenance chemo. Her hair has grown back and you would never know she's a cancer patient. I pray for the best for your son!

[penguingrrl]

Oh Nanda, I’m so very sorry to read this. Sending so many good thoughts to you and him and your whole family!

[gastro]

I am so sorry to hear this Nandab. You and your family will be in my thoughts. Please let us know how he is doing and if you need anything!

[erbear]

I'm so sorry to hear this news. Love to your little fighter!

[nicolewi]

I'm so, so sorry to hear this. Best wishes to you and your family. I am glad you are in a good place to be to get him "well" and then make a treatment plan.

[mamaalysson]

Nanda, I’m so sorry. So much love and get well thoughts to your family.

[abs]

I am so very sorry to hear this. Hugs and prayers for you guys.

[jag01]

Wishing you all the strength during this trying time. Absolutely heart breaking. My thoughts are with you.

[NandaB]

Thanks everyone. I appreciate it.

[fancynewbeesly]

Again I am so sorry to hear the news. If you have any questions feel free to ask.

[lexus]

Oh no! I’m so sorry to hear this. Is there anything we can do for you or your family? I will be thinking of your family and hoping that he is on the road to recovery soon.

[dizzycooks]

Oh nanda I am so sorry. May he get well quickly so you can proceed with the next steps of treatment.

[expectantsteelerfan]

I'm so sorry to hear this Nanda. Thinking of you and hoping for the best.

[nicolewi]

NandaB, how is he doing today with the flu/pneumonia?

[NandaB]

Thanks foe checking on us guys. @mama2b we are very lucky to have a good support system and luckily my husband has a very flexible job. We haven't told Gregory yet what exactly is happening, but we will be because I feel like its important he gets his info from us instead of trying to figure things out for himself, ya know? Unfortunately W has been hospitalized before but those time it was a relatively short stay while he got well, and this time he will probably be here for a month initially.

nicolewi he is much better today! He drank a whole pediasure AND ate a whole bowl of soup, which is more than he's eaten in over a week! So that's huge he also looks much better color and energy level-wise. He went from being lethargic and oatmeal colored on tues night when we got here to more like his normal self this morning.

[cabbagecabbage]

My heart goes out to you and your family and I wish nothing but the best for W on this journey.

[honeydew1894]

I am so sorry that you and your family received this news. Know that you and your sweet boy will be in my Ts and Ps.

[megster20185]

I’m so sorry to hear this. I will pray for him. I don’t have any personal experience with this but 2 years ago this week a little boy in my church was diagnosed with 2 cancerous brain tumors at 5 years old. Our church has youth group on Wednesday nights for kids ages 2 and older and he was in my class when he was diagnosed. Anyone who teaches knows how easy it is to care for your students as your own. I remember feeling like my world had shattered. I cried all during his 7 hour surgery. After 3 months of treatment he was declared cancer free and remained cancer free for a year before relapsing this past April. Since then he has been through several rounds of chemo and radiation and although they aren’t gone completely his tumors have shrunk with each mri. His hair has come back in and he looks great. You’d never realize that he is a cancer patient.

[chatterbox]

I’m so sorry to hear this. Wishing you strength during this difficult time. I’ll keep W in my prayers.

[jag01]

Glad to hear that W is feeling better, and that they are able to do the tests so they can work on getting him better as soon as possible. Wishing you all the best💜

[lexus]

Glad to hear he is feeling better! Thinking of you guys and hoping the procedure goes well.

[lexus]

NandaB any updates? I’ve been thinking of W and your family.

[trizzie]

NandaB - I have been AWOL myself but just checked in and saw this. I am heartbroken for you, but will keep you all in my thoughts and prayers. Please update when you have a chance.

[NandaB]

Thanks for checking on us guys. It means a lot.

The last 19 days have been the longest and most difficult in my life. The first week was a blur. We knew his diagnosis but he was so sick with the flu and pnemonia that they couldnt proceed with leukemia testing or treatment. Wesley was so sick that I was genuinely concerned for his life when we got there. (I don't remember what details I put in my OP but we were taken to CHLA in a helicopter he was so sick because they were concerned he could decline on the 1.5 hr drive there.

We are now on day 11 of treatment. It involves iv meds, oral meds (which he fights every time) and chemo directly into his spine during his lumbar puncture every few weeks. He has also developed secondary diabetes, which is a fairly common side effect of the steroids, but means we have to test his blood sugar and give him insulin roughly every 3 hrs.

He has been such a good sport about everything. He's so mellow and just lets them poke and prod him. I can tell he's in pain sometimes but its hard because he can't tell us what hurts. He also doesnt want to eat anything except pureed chicken noodle soup and drink pediasure, so all of their "tricks" for getting him to take meds arent helping (won't eat applesauce or pudding, can't really have spoonfuls of chocolate syrup with the beetus, won't drink juice...)

I feel so terrible that this is all happening to him. He doesn't understand and its not like you can explain cancer and treatment to a kid who is cognitively almost 2. When he is crying and signing "all done" and looking to me to help him it just breaks my heart. Also, the day before yesterday I got his picc line caught on the crib rail and it pulled out a few inches. It didn't hurt him but I felt terrible and totally broke down in front of the nurses. So that was super fun. Also now they either need to do a new one in the other arm, or sedate him to put in the port he will need anyway but they couldn't do initially because he was too sick to be sedated for so long (an hour vs the 30-40 min for the other procedures)

Sounds like they are considering letting us go home sometime next week, which is equal parts relieving and terrifying. As long as I can prove that I can get him to take his meds and give the insulin shots

So...we're hanging in there. I am confident that we will get through this. I am trying to be thankful for modern medicine and our support system that has been so wonderful. Our moms have been taking turns at the hospital, my h has a flexible schedule that allows us to take turns staying there, and I have taken "catastrophic leave" from work for this first month long phase of treatment. Friends and relatives have stepped up to take the big kids so they can get out of the house, and I'm getting lots of love from friends near and far.




Ps: anyone have any good inspirational quotes or song lyrics/lines of poetry that have gotten you through a tough time? I am not religious at all and am really uncomfortably with the whole "cancer warrior" or "beating cancer" thing because it feels like saying peoe who die from cancer just weren't strong enough, or didn't fight hard enough.

[penguingrrl]

Thank you so much for updating. Sending so many hugs and good vibes Ws way and yours!

[trizzie]

Thank you for updating!!

It is going to sound really cheesy (real cheesy) but after my son was diagnosed with Type One - I would blast that song "fight song" really loud in the car and sing along and cry. It helped. My dad died six months ago and I did the same thing with another song. Music seems to get me through.

[momin2013]

Thank you for updating, I've been wondering about you guys!

Hang in there - you're doing an amazing job. Sending all the positive thoughts and hugs your way.