My middle child (Bradeigh, 4) has been sick for the past two weeks, with off/on fevers, fatigue, and crankiness. She is normally my happy/mellow child. She is half day preschool,three days a week and is my child that loves school but has been asking to stay home. Hubby took her to the ped almost two weeks ago, who dx it as an ear infection (though she never complained about her ears), and put her on abx. Fast forward to this Friday, Bradeigh is still sick, fatigued, pale,dark circles under her eyes. DH takes her back to the pedi, as I am at the hospital with Elle, my CK. Ped doesn't like the way she looks, but says it's probably a bug she picked up at school, but runs a CBC to be safe and for her (and our) peace of mind. Ped calls DH Friday night with results, says she's concerned, but that it doesn't look like anything serious, and wants to repeat counts in a week.
Here are Bradeigh's labs:
WBC 23.7 (H)
PLT 49K (L)
ANC 860 (L)
HGB 7.9 (L)
What do you all think? Just a virus? Should I panic?
Hi: Perhaps with those counts and since you are in the hospital maybe you should get your daughters doctor to look at them and give you some reassurance that there is nothing wrong. You wouldn't be the only one on here with 2 children with Leukemia. Don't want to scare you but I would get a second opinion either you won't have anything to worry about for the next week or you find the worst and do something about it. Georgina (Chris's mom dx Jan 2/08, Off treatment May 14/11.)
I would second Georgina's suggestion and definitely request a review by Elle's onc. It very well could be a virus wreaking havoc but if it's not, you wouldn't want to wait a week and potentially have Bradeigh feel even worse. And not to alarm you even more but my son Sam's white count was low at dx (it can be low or high in ALL) but his hgb and plts were only slightly lower than Bradeigh's. I would think that with those types of counts most docs would want to rule out marrow issues with a BMA sooner than later.
Mom to Sam, 8 dx pre-B ALL 10-22-10 and Maddie, almost 4
I don't see how you can help but panic, and not because of Bradeigh's counts, but because of Elle's diagnosis and your recent experience. I think you should have Elle's oncologist look at Bradeigh's blood work. You'll worry until you have an answer, and if there is a problem, the sooner you catch it, the better. But really, you don't need a week of worrying about this!
I'm keeping my fingers crossed that there's just some minor virus at work--
Thinking of you--
We unfortunately now officially have two children with Leukemia. We are beyond devestated and exhausted right now with two kiddos sick and inpatient in two separate rooms. DH was home with Bradiegh and big bro Hayden today and called me in a panic around 9 am cause he could not get Bradeigh to get up for church (alarming, she actually loves going) and said when he got her up she whimpered and had a 101 fever. I told him to give her some pedialyte and tell her it is a stay in PJ day. He gave her some tylenol and then called me a bit later, saying when he got her changed for a bath, she had a weird bruise on her hip and another on the small of her back. Panic mode set in for both of us and we decided he would bring her to the ER at Children's. Her cbc was repeated and came back with a 39.6 wbc, PLT 19k, HGB 6.4. Blasts were detected in the smear. Her bma/lp/port placement happens tomorrow.
Elle is done with Consolidation Block Two and should be going home soon to recover before starting Reinduction I. Starts Induction tomorrow. This cannot be happening.
Mom to Hayden, 6.5, Bradiegh (4, dx Pre-B ALL 03-11-12), and Elle (27 months, dx HR Pre-B ALL 1-17-12)
I am so, so sorry to hear this. There is just such an unbelievably heavy load on your shoulders. Sorry doesn't actually even cut it.
But, as Nana said, there are, unfortunately, others out there that have been in the same situation and come out on the other end with their family intact. Hope is so important to hold onto, and it's out there for you.
Keeping your family in my thoughts and prayers.
I feel like I am in a complete fog right now. Our onc team (both girls now have the same medical team) keep saying we are lucky and that if Elle's dx hadn't been fresh in our mind, Bradeigh wouldn't have been dx so quickly. I just don't know how we went from a healthy family, to a family with two kids inpatient in the hem-onc unit, one bald and with a feeding tube, the other newly dx, sick and scared. And poor Hayden, he's alone and scared and at the grandparents place. DH is in Elle's room, I'm in Bradeigh's, but after Bradeigh gets to go home, DH has to go back to work. Then we have to figure out logistics. I can't be too places at once, most of Elle's treatment will be inpatient until LTM since she is on the very high risk plan, oncs tell us they expect Bradeigh to be on the 0932 for std/low risk ALL, so her's will be mostly outpatient. Obviously mommy can't be two places at once.
So overwhelmed. The good news is Bradeigh's CNS was clear, port placement went well. She's getting another packed rbc transfusion now, then chemo starts this afternoon.
Kendall, I am so sorry to hear the news. You must be feeling so overwhelmed. I think the first year of Hannah's treatment I just kept it together on the surface. I do remember there being a family with three kids and a baby going through treatment who made being at the hospital a big family event. On Friday and Saturday nights the whole family would be there and they would set up a DVD player in the common room. They would make popcorn and any family not in isolation was welcome to come watch. The logistics of two in treatment is enough to make your head spin, hopefully, your scheduling team will have some ideas to help. I know for Hannah the Nick Jr. printable's website has been a godsend. She really loves all the crafts. It helped with long hospital hours. I will be praying for your family.
I can hardly believe this and am so sorry. I hope you have family and friends stepping up for you through this difficult time. Please take Jill (doublewishmom) up on her offer and get in touch with her - I'm sure her advice and support will be of great value to you.
Hang in there,
I know what you are going through right now. You can read our entire story on this site, but it will probably take forever to find it. We have two boys who had ALL. They were diagnosed one week apart in August 2007. There is hope. We are a year and a half off treatment and both our boys are doing VERY well. Seth was four when he was diagnosed and Micah was five. Seth will be nine next month and Micah will be 10. If you would like to talk or email, just let me know. I'd be glad to talk with you. We live in Minnesota. I think there is one other family here in MN with two children with cancer. And we also know of another family in Nebraska. They also had two boys and they are both doing well, too.
My email address is mjfennema@Iw.net. Please, feel free to email and then I'll give you my phone number if you prefer talking to emailing.
I don't usually post or reply to people on the children board. My husband is 25 and had ALL, dx 12/22/10 had a BMT 3/2/11, so it isnt in my jurisdiction. But when I read this, when it popped up on the home page, I just started crying and I can't stop. I can't even imagine what it is like to have a child with cancer, let alone two. My husband and I have an 8 month old daughter and, my god, I cant even express myself to you how so, so sad it makes me to read this.
You and your family will be in my prayers from here on out, every night. Oh gosh I am just so, so sorry.
I just wanted to offer my support. I cannot even begin to fathom what you and your husband are experiencing. I hope things go as smoothly as possible for both of your dear children. Maybe there are other parents on this board who are treated at the same hospital, and can offer some help. All my prayers, Mary B.
The breath just crushed out of my chest. Unreal, horribly wrong, not happening and every other phrase of denial is overtaking my brain right now. Oh, Kendall, I am so very sorry.
Hug your babies Kendall. All three of them. Please take care of yourself. Come here for strength. Know we are thinking about you, and sending you strength.
Hating cancer. Just hating it.
I'm so sorry to hear your news...I'll never understand why this happens to any of our children, and certainly not two in the same family..hang in there - at least you know what you're doing - take all the help you can get & take care of yourself so that you can take care of your children...hang in there...thinking of you all ...b
Kendall -- so very sorry to hear about this. We know it's tough having one kid with this damn disease. I'm glad Doublewishmom chimed in to let you know that her kids have gotten through it and are doing well.
We'll give you all the support we can vicariously give you to help you through.
Thanks to all for the support. The girls' care/scheduling team sat down today with both road maps for the next treatment phase (Elle's Reinduction I and Bradeigh's std Induction) and tried to get as much of it coordinated as possible. Elle is recovering well from the HD MTX and HD ARA-C and will get to go home tomorrow for a brief break before starting Reinduction I Friday. Bradeigh seems to be tolerating everything okay so far, but soon enough I will have two children under five on DEX at the same time( Lord help me!)
This is what our month is shaping up to look like:
Elle: 0031 Protocol
IT Triple: Day 1, 15
Vincristine: Days 1, 8, 15
Danuorubicin: Days 1, 2
Dex: Days 1-7, 15-21
Cytoxan: over 30 minutes, every 12 hours, days 3-4
Peg-M: Day 4
Bradeigh, Std Induction:
IT Cytarbine, Day 1
VCR: Days 1, 8, 15, 22
Dex: Days 1-28
Peg IV: Day 1, Day 4
IT MTx: Day 8, 29
Yes, I would definitely ask about this. When our boys were both in the hospital, they gave us a double room. We spent 28 days straight in the hospital that August/September. Micah was cleared to go home before Seth, but they released him to our care but he was able to stay at the hospital with Seth and I because my husband had to go to work. I am sure it had never been done before, but the whole hospital was shook up hearing that two brothers had ALL at the same time. Our onc pretty much gave us whatever he could manage to pull off. Don't be afraid to throw your weight around or even get a crazy on them. No rule book is more important than the sanity of parents of cancer kids....
P.S. Our caringbridge site, which has not been updated in a long time, is www.caringbridge.org/visit/sethfennema
Do you have a site?
I too am so sorry! It is bad enough with one CK! My first thought was Oh NO, another 'Double wish mom'! I hope you two are able to connect; nobody better than somebody who has been there! You are definitely on the fast track to earning a double Momcology degree, unfortunately. I will be praying for you and your family and those around you to FIND ways to help you! I can't even imagine, statistically how this happens; there is a family in our town whose two children were dx with different kinds of Leukemia, but several years apart. They are both fine. But I can't imagine two at the same time! And, like you said, two on STEROIDS--yikes!
All my thoughts, prayers and best wishes,
Still can't imagine what you are dealing with. I can't express enough how crushed I am for your daughters. I was wondering why Bradeigh's IT is Cytarabine instead of MTX for standard induction? Is it due to the shortage? In all seriousness though, this is awful enough and you have double worry! I wish you all nothing but the best. Wish I could help in some way.
Dawn, I just wanted to chime in to say that IT Cytarabine is the standard chemo in that initial LP on day 1, at least according to 0331. The rest of the IT's are MTX. Kendall, I hope Bradeigh is starting to feel better and that Elle is recovering okay. Thinking of you all the time. Becky
Oh no! I have been absent from my computer for some time, so I was so shocked to read your update. I am so saddened at this incredible burden your family has to bear. While I'm certainly not happy to hear that other families have gone through the same trial, I was happy to see that some other families with two children diagnosed have reached out to you, so that you have some support.
I also saw your news about Elle's speech delay. While my little one (almost 26 months) doesn't have apraxia, she does have a significant speech delay that has required intervention from a developmental therapist. Our interventionist has been such a huge help and, while it has been frustrating to have just another appointment each week to keep track of - Elsa has made huge strides in her communication since we started. When we first started treatment, Elsa could not communicate ANYTHING verbally - which resulted in basically 24 hour/day crying and whining. Now, while she's not caught up with her peers by any means, her vocabulary has increased significantly which has made treatment SOOOO much easier for all of us. Our quality of life has improved so much now that we know a little of what is going on in her head. Hopefully you and Elle will find similar relief as her speech delay is addressed.
Thinking of you and sending lots of thoughts your way.
I can't even imagine what you are going through, I hope you have a lot of family around to help you out logistically and emotionally. We are here for you to walk you through this process. My heart just breaks for you, but remember to take one day at the time, don't look far ahead and you and your girls will go through this.
I don't check in too much to the site either anymore - my daughter is 16 months off-treatment. However your post caught my eye, and like everyone else I wanted to offer up all my thoughts and prayers. We all KNOW how hard it is to have one child in treatment, maybe only 1 of us knows that having two is double or triple the stress and burden. We went through our treatment in awe of doublewishmom - our kids were roughly in same place of treatment but she had 2 kids going through it.
Only piece of advice I could give you is DON'T EVER BE AFRAID TO ASK for help. Probably all of your friends and family WANT to help, but don't know what to say. I wasn't good at it, and I resent that I felt left alone for 2 years. Especially finding out later that they wanted to help but I was so closed off. Your friends want to help, they don't know what to do. Tell them. Can you clean the house? Can you organize this or that? Give them jobs. Or appoint another family member or close friend in charge of organizing help. People want to help. I feel like if we lived close I'd bring a casserole and some hankies and we could just sit and cry and scream.
We are very lucky in that the community and our church are really coming together in helping us out. We are truly overwhelmed by the support we are getting, honestly. We are getting the pity looks in the hospital by other onco-parents though. It's like having two CK's really makes you the odd one out. Our onco team told us they've treated three sibling sets with cancer, but none with both diagnosed so close together.
We brought Hayden in yesterday just to get checked over by the girls's onco, and he checked out 100% healthy. No signs of illness, perfect counts. Thank God! Of course, we will keep a close eye on things but so far, so good.
Elle actually went home yesterday, so she's home with Daddy and Hayden. She comes back in Friday to start Reinduction I, but the team said only through Day 8 will it have to be inpatient, the rest will be outpatient. Bradeigh is doing okay, and they say she could go home as early as day 9 (Tuesday, the 20th). Our team did say that if we couldn't figure out a way to have care for both kids, whichever one is outpatient could stay with me and the inpatient kid. Our hospital has no double rooms/beds in the onco unit, so the best they could do is rooms next to each other, but most of the time we've been sticking both kids in the same bed (which works since they are both little).
Dear Kendall, I haven't posted anything since my son was diagnosed over the summer, but your situation is just too much. I'm so sorry about the two diagnoses. I know how scared I felt when Collin was diagnosed and I can only imagine what it is like to hear that news all over again. I guess the only silver lining is you know you can do this and your girls will be fine in the end.
When you come up for air (which could understandably be a while) could you let us know what the onc said about how commonly this occurs and whether there is any research going on about siblings with cancer diagnoses at around the same time? I saw that they've done some research on identical twins with leukemia and they assume there was some prenatal cell exchange, but siblings with leukemia would seem to have other similarities that they need to research.
I hope you are managing okay. From your posts, you seem like you are on top of things and have a good support team. I wish you and your girls all the best!