Drews story, starting journey

[Drewsworld]

My son Drew 13 years lives here in Queensland australia with his sister Kira and mother Natalie,A couple of weeks ago while taking Drew down to the local gaming shop he showed me a couple of what I thought we rashes,decided to take him to the doctor,just to check it out.after blood tests picked up his new game and went home .recieved a call in the morning ,Had to go to the hospital straght away for more tests as his platelets were very low ,about 20 I think.
They took more blood tests, then sent us to the Royal childrens hospital Brisbane. The next morning we were booked in for a bone marrow byopsy.We feared luekiema.The wait for results was agonising,then when told there were no cancer cells but they thought he may have A A ,we had a sigh of relief(little did we know)Drew has been diagnosed with moderate to severe A Atwo days ag .As there are very few cases here.(One every year in Queensland )Our doctors are very good ,but maybee less experienced that what may be in America.I feel there could be alot more expertise out there that may be able to help.Advice please! very worried .Drews Dad Pete.

[triumphe64]

In order not to miss any posts already made, I have attached a link to your prior posting.

http://forums.marrowforums.org/showthread.php?t=2982

[Ryan Jay]

Hi there,

I'm Ryan and I am a two year survivor. I'll try to throw my two cents in here and maybe it will help a little bit.

We've all been there, and I can tell you that the first two weeks after my diagnosis were the absolute worst. Not only are you dealing with a serious illness but one that you have likely never heard of before. It's a huge double whammy of fear and confusion. And plus, I could barely walk because my counts were so low...make it a triple whammy.

That will subside a little bit when you get into fight mode. I actually felt so relieved once my team of hematologists put together a plan of action.

Not a doctor...but I feel comfortable saying that the treatments for AA are pretty standard. If your son has a sibling match, they will likely go bone marrow transplant first line. If he does not, they will go the route of ATG/Cyclosporine. Both can be very effective and represent the standard of care.

I had ATG in August of 2010 and it worked like a charm. My counts are all in the low normal range and I got my life back.

You also want to make sure that they check for PNH too...I'm sure they have mentioned it. If not, ask.

Just know that....you're in a siege war. It's winnable, but you are going to be in a long grinding campaign that isn't going to be resolved in a day. You beat this bastard with little victories over a long expanse of time.

Well, I hope I wasn't too over the top here. Please, keep us posted.

[Drewsworld]

Hey Ryan ,thanks for the reply,and I realy do appreciate your 2 cents worth .Its great to hear from someone whos been in the same position as Drew..We haven't heard back yet if Kira is a match for a transplant.its been about 5 days.I hope thats not a bad sign.But if not you've givien me a bit more confidence in this ATG\Cyclosperone .
Ill be sure to ask about PNH.mabee they did mention it but there does seem to be alot to absorb.I guess Im still hoping they will tell me this is just a big mistake..but I know its not so like you said its time to go into battle with this bastard.

Thanks mate Pete and Drew

[Drewsworld]

Well we just got the news that Drews sister isn't a marrow match .he had a platelet transfusion 5 days ago but has dropped back to 19. They are holding off on a
transfusion until friday.
And he is now in the severe range so something needs to happen quickly. They are
doing a search over the next week to look for an international donor but of course is a longshot.looks like ATG it is.

[Ryan Jay]

Pete,

Have they explained to you why they are going to look for an unrelated match this quickly? Did they mention that the potential MUD (matched unrelated donor) would be a backup or first line?

Just good to know what their thinking is. A first line MUD is very rare from my layman's understanding of how to treat this.

Remember, you are on a different path than the BMT, but one that has roughly comparable long term results. So don't look at it as a setback.

ATG can be rough stuff, but a ton of us on here have been through it with different ranges of reactions. I felt okay when I was getting it, but then the following three weeks were absolute hell! It paid off.

Some of us had absolutely atrocious counts. My hemoglobin was at a 4, my platelets were at a 2 and my whites were down to 1.6. So anyone can bounce back.

Stick with us here and we can give you a veteran patient's perspective. PICC lines, photophobia...all kinds of weird things that you never thought you'd ever have to deal with.

Good luck.

[Neil Cuadra]

The good news is that children and adolescents tend to do the best with ATG, i.e., have the easiest time and the best results. Sometimes the biggest challenge is keeping a 13-year-old comfortable, optimistic, and not bored when they have to undergo treatment. Kids need to feel protected by their parents and they benefit greatly if they can stay connected with their friends and extended family in person, by phone or texting, or with social networking.

[Drewsworld]

Ryan,

Thanks for your input. I ll be definitely asking the question about the MUD. I had plenty of questions for the doctor at our last meeting ,found out they had tested for PNH which came back negative .Its a comfort to hear ATG is often used ahead of MUD,looks like next
week we'll be starting his treatment.ill keep you updated on our progress .hopefully his youth will get him through ...
Thanks for the good luck wishes
Pete.

[Drewsworld]

Thanks Niel
Ill take that onboard, We are making plans to re do his room,set up a new tv ext. He has his i phone and playstation witch keeps mind occupied most of the time.Im glad to hear
kids seem to respond better to the ATG.Im so glad we found this site .good to know we are not alone.
Pete.

[Drewsworld]

Drew started his ATG horse type today at 12 pm..so far so good .his blood counts went very low the day before yesterday..had his first full transfusion.Has only had platelets up till now.Is now classed as VSAA .Its only taken a few weeks all up .now we wait .This sux !

[Drewsworld]

Drew had a pretty tough first day on ATG .first hour he was fine just slept...then he started getting welts, bad shakes,fever and at times was a bit deluded about what was going on.All normal from what Im told but very hard to whatch your child go through something like that ..three to go then we'll see .

[Ryan Jay]

Hey there,

First day is rough for everyone. Things should smooth out a little bit towards the end of the infusions. Remember, he is going to be cranky, tired and feel really weird. I remember how ridiculously photophobic I was in the weeks after treatment. I couldn't stand the sun light at all.

Make sure you ask him how he is feeling. The nurses have a few tricks in their bag to ease his reaction...most notably slowing down the infusion.

Also, expect his numbers to do all kinds of whacky things. His whites may drop drastically, then pop up to some ridiculously high number again. I needed more transfusions in the weeks following ATG than I did before the treatment. Everything started to kick back on line in late October and I had the treatment in early August of 2010. I'm telling you, those were the longest 2 1/2 months of my life.

What is the approach they are taking with Cyclosporine? My hematologist hit me hard with high Cyclosporine doses during ATG...but I'm a big guy too.

Well, keep us updated. Our fingers are crossed.

[evansmom]

Hi Pete,

Sorry to hear your son Drew has been diagnosed with aplastic anemia.
You will find this forum to be of utmost help and support, I know I did four years ago when my then ten year old son was diagnosed with AA, went through ATG and then on to unrelated BMT.

Kids are much more resilient than we give them credit for and while the last few ATG treatments will continue to be tough, Drew will get through it.

HERE is a link to my son's experiences from diagnosis to cure which may provide you with a little more insight, bearing in mind no one patient's experience is exactly the same as another's.

Best wishes,

[Drewsworld]

Hey Ryan ..you were right the next three days of ATG were much better ,with very little side effects...Hes now on 800ml of cyclosporine with a
steriod and some other anti bacterial pills.So far hes been having platelets every 3 days ,they are around 9.he has a full blood tomorrow ...Hes understandably a bit depressed now that the reality has set in and yep,cranky and tired.
They told us watch out for any sign of infection,fever ext.So we of course are doing alot of hand washing and keeping everything clean.
He seems to be going ok.

[Drewsworld]

Hi Evansmom
Great to hear your sons story .It is alot to take in but very informative and interesting ,sounds like you guys pulled through a tough fight ,you must be very proud as we are of our son at this early stage.He is also very brave and trys not to let on too much to protect us.
There are some bad coughs and colds getting around at the moment as it is the end of winter here ,hes bound to catch something sooner or later ,but from what ive gathered it is the infections we have to look out for mostly.
He hasn't been going outside much so surely hes pretty safe.Not sure what else to do ,other than keep clean and avoid places that he might catch something nasty.Anyway..thanks so much for your info ,its very helpfull.
Pete.