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Spouses and Caregivers The people who take care of the patient

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Old Fri Apr 1, 2016, 09:50 PM
jsobo jsobo is offline
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Location: Cleveland, Ohio
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Dad having a rough day

My daughter (13) was diagnosed with AA and PNH. She does not have a sibling BM match. Today was the 4rth day of ATG/Cyclosporin treatment and it was a rough one. She has had reactions to Benadryl and they are having to push it really slow. On top of that she is having hive breakouts from the ATG and her blood pressure is a problem (high) likely from the steroids. Today she had a headache and hives and was crying and vomiting for a few hours... This is the same kid who has was stuck a tun of times to get IVs that failed (thank god for her port)... so when she cries from pain it is serious. After ct scan, platelets, a MRI and a bunch of stuff to bring her BP down she recovered and her pain level is now manageable.

I have dealt with and accepted the gravity of her situation but watching my baby suffer like that was just more than I could handle today. I had to leave her a few times to just go cry. I felt guilty for taking breaks... from other parents should I leave to cry or should I stay with her? I didn't want her to see her Dad lose it.
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Old Sat Apr 2, 2016, 03:34 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
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jsobo,

In my case it was my wife who received ATG for AA, not a child, but I understand that you want to be positive and brave to help to help your daughter get through this, but that you're just plain scared.

I think that young family members are more aware of adult moods than we realize. When you're upset and frightened, you can't keep it from them for long. If you cry, it shows that it's OK to cry, and perhaps that's a helpful message. When you then dry your eyes and move on (e.g., prepare questions for the doctor or ask nurses for items that will help your daughter be more comfortable), that's another positive example of facing a challenge and moving forward together.

When a child is in pain, parents feel it too, and I'm sorry you all had to go through this. You, your daughter, and your family deserve congratulations for facing this together and getting though it so far, even while frightened.

It may help you to know that many patients receiving ATG treatment have these types of reactions (pain, hives, rashes, etc.) -- even though the details of each case are unique -- and that the treatment and side effects are temporary. If ATG puts the disease at bay so your daughter can return to her normal teenage life, you're likely to think this awful experience was worth it.
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Old Mon Apr 4, 2016, 12:04 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 608
Hi jsobo,

I hope the most painful days are over for your daughter, and that she is now on the road to recovery. It sounds like she had a really rough time with the ATG.

I still remember, as a child, seeing my dad tear up on only two occasions. I think seeing him cry united me with him in my pain. It made me want to be stronger for him and helped unite us through the ordeal.

At the same time, I think it is important for your daughter to hear separately, with confidence, that everything is going to be okay. She needs to believe that you believe that she will make it through this.

I hope your daughter has a strong and durable response!
__________________
50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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