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Standard Delayed Intensification

Posted by on Aug. 7, 2010 at 12:13 AM
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Hi there.  I'm new to this forum but very glad I found it.  My DD Teaghan was diagnosed with ALL April 3rd, 2010.  She had a rough start the first month but has been doing well until we started Delayed Intensification.  I really wish someone would have told me just how awful this was gonna be.  Its only been 4 days and what a dramatic difference.  All she wants to do is sleep and I can't believe how pale she became in less than 12 hours.  I have to keep telling myself that this is only going to last about 2 months...we are almost to maintenance.  I can do this...we can do this.  She just honestly looks sick now...there is no missing or questioning that she has cancer.  She had her last PEG shot today and we go back to Syracuse on tuesday to pump more chemo into her.  This is finally starting to be overwhelming.  I know I don't really have a choice in this.  I have to push thru this....but how?  Has anyone been thru this phase of treatment yet?  We just started doxo` on tuesday along with the awesome steroids, PEG and vincristine.  In about a month or so she will be on cyclophosphamide, thioguanine, cytarabine and methotrexate...IS IT GONNA GET WORSE?  Is it gonna be roughly the same?  I wish they prepared you for this...all they said is it will be the roughest part of treatment.  I'm just not used to seeing my 3 yo laying around, crying and telling me she doesn't feel good.  I want MY Teaghan back.  Anyone with some wisdom...please fill me in!

            Kelly

by on Aug. 7, 2010 at 12:13 AM
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Replies (1-7):
mango563
by Member on Aug. 7, 2010 at 3:11 AM

Hi Kelly,

I'm sorry Teaghan is having a rough time. My daughter is also three and was dx with ALL on Oct 13, 2009. Delayed Intensification is really hard, for us the second half was worse than the first.  I can totally relate to having a 3yo laying around, crying and telling me she doesn't feel good. I would love to tell you that the next couple of months will be a breeze,  but for us it was neutropenia, hospitalization, and lots of vomit. You guys are almost to maintenance which is gonna be much easier on her, and you. I don't feel like I really helped, but if you need support I'm here. 

BENTLEYMARIE
by Member on Aug. 8, 2010 at 10:05 AM
Hi! My daughter was diagnosed May '06! She was also 3. My best suggestion is to ask for Zofran 2 x a day for the next 2 years! It worked magic for my daughter! Another tip is to use kitchen cling wrap to hold EMLA in place! Detach All is great too! It helps get the iv dressings off!! It will get easier, hang in there! The sterroids are always rough, but your little girl will return and life will be great again!! Hold her and love her and before you know it you'll be celebrating her survival!! Best wishes to you!!!
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PenelopesMom
by Member on Aug. 8, 2010 at 10:45 PM

Oh, gosh do I know how you feel! Fortunately, I did have someone to tell me how cruddy it was going to be, so I was able to mentally prepare. It was one of the Moms in this group actually, I had her call me on my cell and just give it to me straight, lol.

For the emla cream, I use Glad Press'n'Seal wrap to hold it on, and it comes off very easily with no discomfort.

Pretty much the whole delayed intensification is going to be this crappy. There's one part where Teaghan will have to have the cytarabine. The methods vary a little bit, but  she will need to be very well hydrated to flush it out of her kidneys properly. For Penelope, (she's 4, by the way) they allowed me to keep her port accessed and bring home a preset pump with the saline hooked up to her overnight. Then we went back in the morning for them to remove it. The Thioguanine, if I remember right, she'll get 4 days in a row? I think it's four days. I remember thinking that sucked, having to leave her accessed for 4 days. I kept thinking I was going to bump into it or pull it or something. None of that ended up happening. It went fine. We just took it day by day, kept Penelope as comfortable and happy as we could, and before we knew it the worst was done with and she was on recovery! Then maintenance started. For her maintenance started in June. She's doing great. Every once in a while her blood counts will dip a little, but that's normal and it's going to happen here and there over the 2 years of maintenance. The best and most important part is that things feel so much more normal now. The doctor visits are nowhere near as often, we go twice a month. Once for a finger stick, and then 2 weeks later for her vincristine. It's really not bad at all! Hang in there, Mama. There is certainly light at the end of the tunnel when it comes to this. If you want to call me and swap stories or vent, just pm me. I'm open to discussion because the more we learn, the better we care for our girlies!

((hugs))

Steph_mommyof3
by New Member on Oct. 5, 2010 at 12:09 AM

I have a 5 yr old son who was just diagnsed with ALL in July. We are only in our third month, but I was told a lil about delayed intesification today at our clinic visit. Right now my son still has all his hair, he is still gaining weight, and looks great!!!! He's active and 'healthy'! I've been warned to expect hair loss, and sickness. I'm glad I found this post. It has given me a lil more insight to what to expect. Although, not sure if it will make it any easier to take! Praying for you and your DD!

mel570
by Member on Oct. 5, 2010 at 5:40 PM

Gosh, I wish I had caught this post sooner.   Hello! I am the person who called Valorie (Penelopesmom) on her cell.  My Mia was diagnosed with ALL in Sept. of 2009, she was 2 at that time.  Delayed intensification was by all means the hardest phase we went through.  She would constantly say she was tired.  I also was scared to death to have Mia accessed at home, and to have to be the one to administer the doxorubicin, OMG was that intimidating.  But you know what, we did it.  I would say the hardest was to see Mia want to be herself, and want to play.  But every time she tried she would literally get out of bed and fall to her knees.  I would then put her back to bed and that's where she would stay.  I took her into the clinic thinking her counts would be low, but the doc said she was fine, that this phase was as hard as it was in the first phase in the hospital.  Seeing the date this was posted, I'm sure your past all the fears you were worrying about.  Mia had all her hair at that point, and the cytarabine made it all fall out.  I was grateful it had lasted as long as it did, about 6 months.  And it was really hard for me when it was coming out in my hands.  Once we decided to buzz it off, I felt this huge weight lifted off my shoulders, it was like being able to take a deep breath and letting out a huge sigh of relief.  We have been in maintenance for about I guess 3 or 4 months now.  It has gotten so much easier.  We recently went on her Make A Wish trip to Disney World, and boy was I scared of all the germs there was going to be there.  But it all went well and she's doing great now.  We go in to see the doc once a month for counts.  Mia hasn't gotten sick or did she ever really get sick between treatments, so I was grateful for that as well.  She did come down with the sniffles a few weeks ago and there I was messaging Penelopesmom, she made me feel a lot better, so this site is really great and this group is awesome!  I hope all is going well....

skater-girl
by New Member on Oct. 6, 2010 at 5:05 PM

The first 6 months of treatment were hard, Delayed Intensification was the worst of them, it got much easier from there. It was tough, but we got through to maintenance and now he's a happy, energetic little boy. Each phase has it's own difficulties caused by the different meds. I did see bits and pieces of MY little boy through treatment, but I didn't truly get him back until Maintenance. He's off the zofran, doesn't even throw up with his daily maintenance chemo. It's so much easier to deal with and the best part is, we're home! :) 

He was 4 months old when diagnosed and is now 19 months.

stellabluegirl
by New Member on Oct. 20, 2010 at 10:05 PM

How is your daughter doing now? I hope she is feeling better.... My 7 yr old son had a REALLY rough time all the way up until maintenance...he almost had to have a feeding tube....but as soon as he got there he started feeling SO much better! He stopped throwing up all the time, his energy is better, he gained weight back and his hair grew back too. He still feels occasionally lousy, and the 5 day steroid bursts are often a nightmare, but all in all things are good. We have a year and a half to go....taking it day by day :)

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