April BMT scheduled for my daughter's SAA

[Chris H]

Have been meaning to register here for some time, but finally found a minute.

My 11 yr old daughter Kira has been diagnosed with severe aplastic anemia recently and is scheduled for a BMT in late April with her 9 yr old brother as a matched donor.

We are so happy to have found this site as she just finished reading Evan's story and said "Yup, that's about what the doctor said would happen." It was fantastic for her to see & read first hand from someone her own age.

I however have a million questions, fears, hopes, etc which are very grateful to have this place to come and find out they are not very different than the other questions, fears and hopes out there.

As the countdown trudges on I am just wondering if any one has any pre-transplant suggestions to help her going into the transplant.

Thanks

[Neil Cuadra]

Hi Chris, Kira, and the rest of your family.

How fortunate to have a sibling match. It shows that luck is on your side, but by reading about transplants and asking questions you'll make your own luck too.

One thread you might useful is named How do you spend your time when you're stuck at home or in the hospital?. There's a lot of boredom involved, especially for kids who are used to being active all the time, so I suggest letting Kira help you decide what toys, games, or gadgets would be suitable to have with her. Perhaps she can prepare her own backpack for this purpose.

Staying in touch with friends is very important for this age group. Phone calls, email, texting, even setting up a blog. Any method might work, but chances are it'll take your effort to get the ball rolling and not let her friends forget to keep in touch when she's not there in person. Find out the rules for visitors (days, times, number of visitors, age restrictions) so you can let people know if they can visit or should just phone/text/email. Warn everyone that Kira won't always feel up to having visitors or talking on the phone.

If she'll be able to have Internet access, there are a lot of websites with free age-appropriate "Flash games". For example, Cancer Smash is one I can recommend. If you have a tablet like an iPad there are similar games available, many of them free. These are good gaming choices (if she's allowed to have electronics with her at all) because there's an endless variety of types of games, and most are easy to play for a few minutes now and then, rather than needing a longer stretch of time and attention than a transplant patient is likely to have.

Nobody wants SAA, but Kira's got everything going for her. A special shout-out to Kira's brother for already being a hero!

[Chris H]

Thank you! Will definitely check out that thread!

Kira has some very close fantastic friends that I am going to work very hard to keep in touch with her however one disadvantage is there is NO wireless for her to use at the hospital... would have loved that and it would have made some communication easier.

We all realize how very fortunate we are for the match in siblings. It was a weirdly ecstatic moment in a less than stellar summer.

I hope to get her story up in the next couple of days as it's been a strange course of events...

Thanks again,
Chris

[squirrellypoo]

Originally Posted by Chris H

however one disadvantage is there is NO wireless for her to use at the hospital... would have loved that and it would have made some communication easier.

Have you checked on the transplant/paediatric ward to see what the cell phone signal is like on there? I know it's pretty cheap to get little USB 3G data dongles here in the UK, but in my experience the US's mobile phone networks are a bit third world so I don't know if that's feasible where you are (I grew up in the States, and I say that from experience - lots of nice things about America, but your mobile networks are really bad!)...

That would at least allow her to email and download and surf the web, though it may not be fast enough for stuff like YouTube or Skype.

[evansmom]

Hi Chris,

Sorry to hear about your daughter Kira having to face the hurdles ahead but she's young just like Evan was and otherwise healthy and strong. With a matched sibling, the odds are very much in her favour for a full recovery.
You already can say your kids are amazing I am sure, but post transplant, you can additionally refer to them as AA/BMT Warrior and Survivor with a Hero for a brother. Pretty amazing titles if you ask me!

But back to one day at a time...

As far as getting her ready leading up to admission, staying healthy and avoiding sick friends, big crowds, mouldy places, etc. is very important. You do not want any infections on board going into this.
Mentally, we prepared Evan in a very matter-of-fact way. Of course we had emotions come to the surface and so did he, but we didn't dwell on the worry side of things as it does more harm than good. So we just developed a "yah, this is a crappy hand you've been dealt and it's not fair but things happen that we have no control over so let's get in there and do what we've got to do to get you all better" attitude. We emphasized how fortunate he was to have a matched and willing donor, because many kids sicker than he was had no one to donate. We also stressed from the get-go to Evan that we loved him, we needed him and in order to get through all of this, he would have to co-operate fully and completely with the nurses, doctors and other health team members. Un co-operativeness and poor manners, even in such difficult scary times was not an option. Kira will understand that her parents love her and wouldn't put her through anything that wasn't necessary. She will know to trust you and the doctors and nurses to make the right decisions that will get her well again, even when she doesn't feel like going along with the program.

I think you have just enough time to petition that hospital (I assume their BMT Unit is a Pediatric one?) to get with the times and get Wi-Fi into that place for the sanity of the youngsters and parents who are in-patient for 6 weeks or more, I mean come on!

Is there any chance that the person who informed you of this was wrong? Sometimes hospitals do have Wi-Fi but it's a well kept secret until you get settled on to the ward and get talking with the nurses there. That's what happened to us at Toronto's SickKids.

At any rate, without Wi-Fi, have your daughter research some movies she may like to see now so that you can ensure your local video store has some of them (of course, dvd rentals are becoming more and more obsolete as well). Friends and family can purchase some new, in-wrapper board games (that can be sanitized and then opened up fresh while in isolation, Apples to Apples is a great game) a deck of cards, dominoes, that sort of thing. Child Life will also have tons of good suggestions for Kira when she's both in and out of isolation, especially in view of there being no Wi-Fi such as crafts and things.

You are right to be thinking about this now because 6 weeks or so is a long time to keep a child entertained, especially one who is of tech age!

Get in touch with Child Life at the BMT Unit now and see what they have to say re: Wi-Fi availability, and suggestions for passing the time there, you may be pleasantly suprised.

Take care and best wishes to Kira for a complete recovery.

[IhaveAA.AAdoesnothaveme]

I am sorry about the diagnosis, I am 15 and went through this last summer.

Going into transplant I was freaked out! I didn't want to feel isolated from the outside and come out as some freak who just disappeared from the earth for a few months! I was also so scared that my friends would just move on, not even thinking about me after a week or two but, I expressed these feelings to the hospital staff and they gave me some great feedback, here are some of the things that kept me going in the hospital:

My cell phone was my best friend, my friends texted me all the time. I know your daughter might not have on at her age but I think that even using yours to text a friends parents and hear a few words from a best friend or something will make her day. I found that using skype and iChat really helped too, I got to stay in touch with all my friends just like I was there with them. If they don't have wifi I would recommend trying to get internet on your phone or a USB that provides internet so that she can skype with friends when she wants. If not, movies are fine too. I watched more movies when I was in the hospital than I probably had in total before. I even used to go "shopping" on the internet.... I would go on sites of the stores that I used to like and look at their clothes. Every girl needs their retail therapy! I would definitely recommend doing your best for internet as it really helped me pass the days. I don't know what her thoughts on school were but even though my transplant was in the summer I did do some school on line. Education is very important to me and I thought that I could get a head start when I was feeling okay. I think that having these goals but not the pressure to have deadlines really saved me. I know that in at her age you can't do it online but even just doing a few things in her best or favourite subject is a good idea. I also found that when I started doing other school work when I came home this gave me less work to do at once and it was less overwhelming. Just stay in touch with her teachers, trust me they won`t be mad if she doesn`t do it, just have it there in case of boredom or want!

My sibling went through some jealousy problems (which I just recently found out about) so, my mom spend at least one night a week alone with him making sure that they felt as special as possible. She would take him out to the movies or something and make it all about them. Another thing we did since my neices and nephews and youngest brother couldn't visit is that we would all watch the same movie and then all talk about it later on skype. We did it instead of a family night since we weren't all together. The childlife specialist really helped my family and I through this so I really recommend getting in touch with them now. Goodluck to your little one, if I can do it she can too!

[Chris H]

Squirrellypoo, I did end up checking about cell/internet access and turns out it is available on that ward. WHEW!! Kira has a cell phone and free texting and also an ipad so I'm hoping those two will help her keep in touch with everyone.

Nicole, thank you to you and your family for sharing as much as you do! It's been a great source of comfort and strength for us already. I've read your story here and come across some of your replies to other threads and I just wanted to say I think you're awesome for all that you do! I only hope I can be half as organized as you are and the information you've provided has given me some questions for our team. They seem very well equipped and experienced so I'm sure they won't mind me checking on some things.

IhaveAA.AAdoesnothaveme - Thank you so much for your suggestions, never thought of online shopping for her, she'll love looking! I hope things are going well for you now. I'm not sure if you posted your story but I will look, Kira could use all the 'peer' input she can get.

Wishing you all the very best!
Thanks again!
Chris

[Chris H]

Well I should be happy, Kira's team wants to move the transplant up to mid march to get it done as soon as possible.

However I am a little shaken as I had another two months to get ready for this and help prepare her brother for his part. That's now dropped to a few weeks.

I'm not sure Ethan is ready to say yes to being her donor yet, as he's still very afraid of needles, hospitals, etc., and if we rush him he might say no when the pediatrician asks him what his choice is. Then what????

Truly glad there is this place to talk outside of my own head!! I know there's probably no real answers but getting it out there might help me relax a wee bit.

[Neil Cuadra]

Chris,

I know it seems rushed but it's good advice.

When it was decided that my wife would go to transplant, we thought we'd schedule it for a convenient time a month or two later, but her doctor said it should be done immediately, and that's what we did. It was the correct advice, even though we were surprised by it at the time. The sooner the transplant the better, because blood counts can get worse during a delay, and more transfusions might be necessary, both of which are negative factors when you are going to transplant. (The exception is if the patient has an infection or other immediate problem that must be dealt with first.)

I hate to be blunt but I don't think you can ask Ethan's permission and you simply have to tell him what's going to happen. If he's like most kids he'll take his emotional cues from you, picking up your mood, whether that's confidence or trepidation. After my wife was first diagnosed they scheduled blood tests for her relatives, to check for a fully-matched or partially-matched family donor. The kids were frightened about needles so we went as a group and had grandma go first. When they saw her matter-of-factly sit down and not flinch at all, they calmed down. Of course being a transplant donor involves more than a single needle prick, so I suggest that you have a very frank talk ahead of time with the medical staff about how you and they can help a skittish child. Distraction or rewards sometimes help, but sometimes it's just a matter of being honest but matter-of-fact, letting them know that nobody likes needles but you love them and will be there with them the whole time.

[evansmom]

Hi Chris,

I agree with Neil completely. While Ethan's feeling and emotions are very important and need to be handled with care and love, you will need to give him clear direction as to what your expectations are. He is in a position to save his sister's life and while you never would have chosen this road for him, you also would have never chosen the far worse road that is ahead of Kira. He will be asleep for the donation process so he only needs to be prepared for the neeedle pokes and/or IV start. The discomfort or outright pain he may have in the days to follow can be treated with pain meds and really it's a small price to pay for saving his sister's life. I'd hype up the positive, get him a personalized "HERO" t-shirt, etc. I'd leave the details of the pain and discomfort out for now and if he asks, down play it. The worse thing that will happen is that he'll wake up in pain and be mad that you didn't tell him. The fact, however that his donation will be done and over with will far outshadow his frustration or anger.
I think it is the wrong approach for the doctor to put the weight of such a decision on a nine year old's shoulders. You have made the decision for him and that is that. It is what it is and what must be done will be done.

Best wishes, both kids will do just fine!

[Chris H]

Just a quick follow up with some clarification...

Bone Marrow donors regardless of age here in Manitoba have to donate 'voluntarily' regardless of age. Ethan must meet with a pediatrician who will confirm that he is not being forced or coerced and will check his mental status.

That is my only concern, what he will say to that doctor. He know this is best for all, it's just making sure that he doesn't panic in the appt and say otherwise.

Looks like March 26th might be transplant day.... will post when we know for sure.

[Ellensmom]

Dear Chris,

I am so very sorry that your daughter is sick and needs to undergo a BMT.
My 4 year old daughter Ellen was diagnosed with MDS in October and is now 14days into her BMT. It is hard on her but somehow she seems to cope through it all. When in pain she is sad and down but as soon as her pain medication is properly adjusted she resurfaces and is able to smile a bit, talk and be a happy little girl for a while. I think this is typical in children. While we - their parents - worry and hurt for them every second they are somehow able to fully live in the moment and be ok in spite of all the hardship. I hope and think this will be true for Kiera as well.

You ask for ideas for your BMT-stay and I will suggest that you bring in a mini-fridge. It might be standard at your hospital but at our hospital - Rigshospitalet in Copenhagen, Denmark - there are no fridges in the isolation rooms. We are so happy we brought one as it turns out Ellen will only drink her water ICE cold:-)

Also Ellen has enjoyed having stories read to her. It is such a soothing thing to do – for a mom as well. We can only touch her through the skin of plastic gloves but somehow reading and sharing stories bring us a bit closer. I realise that Kiera probably does her reading just fine on her own, but when she is low on energy she might enjoy the voice of a parent and a good story to escape into.

I completely agree with all advice given by Evans mom. I have read her and her sons story as well and I was very inspired by her way of becoming her childs advocate and protector. (Thank you Evans mom). If you don’t agree with the staff’s way of doing things don’t hesitate to tell them or ask them to leave. (I have had to)
Getting your own head around the many rules and restrictions of the BMT-Regime is a mouthful, but you will know them in your sleep sooner than you think.

All the best

Freja

[Chris H]

Freja,

Also very sorry to hear that you're little one is having to go through a transplant as well. Hope things are going well and continue to be the very best!

As unfortunate as Kira's last stay in the hospital was I think it really helped me get ready for this one so I'm not as stressed as I might have been.

Have almost everything ready to go, know that I will figure out what I forgot as soon as we get there but oh well!

Keep Smiling right...

Chris

[Chris H]

Just a quick update today,

Ethan agreed to donate his marrow with a smile on his face, seems he had a chat with his sister and they agreed they each had a part to play in her getting better so they agreed to 'get it done'. YAY! The power in kids amazes me.

Kira went yesterday and had her head shaved and a dragon hair tattoo shaved into it so that when her hair starts to fall out it's not so shocking. Looks awesome, going to try and attach a picture.

She goes in for conditioning on Wed. and the transplant is the following Monday.

Feel VERY positive about the whole thing so going to try and bottle that feeling in case I need it in a week or two....

[mausmish]

Chris, Best wishes and good luck for all of you throughout the journey! Kids are amazingly resiliant. They can teach us a lot. Karen

[Chris H]

Well where to start...

Kira was admitted to hospital on March 21st, went through the conditioning regimen until March 25th, doctors harvested the bone marrow from her brother early in the morning on March 26th and it was all in Kira by 4ish that afternoon.

Days +1 to +13 went well with her WBC counts starting to rise on day +10. By day +13 (easter day) she was up to .6 WBC and still had no infections and no signs of rejection so to our complete amazement she was released to come home!

We went in to clinic today for blood work and stayed for a RBC transfusion as she was very tired and her hemoglobin was only 73.

At the close of day +15 she is downstairs playing Wii with her brother...

We are in awe of the miracle we have just witnessed and know that challenges still lie ahead however we will deal with those as they come.

Thank you all for the support and my hopes and prayers are with you all as well!

[Neil Cuadra]

Chris,

Congratulations to you and your family on such a great outcome and such a fast recovery!

What guidelines have they given you about taking care of Kira at home?

[Chris H]

Thanks Neil,

I'm worried that it might have been a bit early but she was health and bored in the hospital so rather than risk getting something from there they sent her home.

We have LOTS of rules for being home and what she can and can't do. We treat most of the house as a hospital room and try and keep her as sterile here as we can.

We have installed a UV system in the furnace to kill off mold and fungus, etc and have an HRV system as well.

I have a Dyson vaccum and yes all the hype about them is true they really do pick up WAY more than our previous vacuums so I know i'm getting dust, dirt, dog hair, etc. out of the house that way.

not going out in public except to clinic, 1 'healthy' friend at a time, etc.

Washing all veggies and fruits, boiling her water, cooking her food thoroughly...

It's my full time job right now.

Please let me know if there's something in particular I should consider as any information to help is good!

[Neil Cuadra]

It sounds like you have things well in hand, Nurse Mom. Make sure other family members pitch in to help you with your full time caretaking job.

When my wife first came home after her transplant we too were very careful. For example, we avoided fresh fruits and vegetables that we couldn't wash carefully enough, such as lettuce and bean sprouts. It's very hard to thoroughly clean the outside of a cantaloupe, and hard to cut it without getting what's on the outside onto the inside, so we went without it. Relying more than usual on canned food may get boring and be less nutritious, but canned food is safe and that's what counts most at first. And it saves overworked moms some time too!

Frequent and thorough hand-washing is a good habit for all of us, all the time, and now is the time to instill that habit in everyone in your household, including visitors.

If the vacuum cleaner is picking up dog hair then I'll go out on a limb and guess that you have a dog! You have to decide how important the family dog is to morale (for some kids the dog is their best friend). If possible, patients should limit dog contact and should definitely not clean up after pets or empty cat litter boxes. Dogs aren't necessarily full of germs any more than the rest of us, but they live closer to the ground, roam outside, and don't wash their paws when they come in from playing.

[Chris H]

it's hard to believe we have been out of the hospital for a month now.

Kira is doing exceptionally well and I'm almost afraid to talk about it and jinx her in the process... ha ha.

We go in to clinic for blood work every tuesday and they are keeping an eye on her EBV levels as they were low but climbing a bit. Nothing to worry about but they are going to continue to watch.

She wasn't declared engrafted until day +32 so the doctor is a little curious about what took so long but he's happy with her progress so all is good.

She has had no fevers, no rashs, no major GVHD so far... She is one very lucky girl! We can't believe it has been so smooth for her but are very happy too.

She is nauseous every morning and has the odd "tummy" attack every couple of days but I'm not sure if it's the meds or a bit of GVHD.

Day +43 we celebrated her first two "low normal" counts in her platelets and neutrophils, counts that day were;
WBC 4.35
RBC 3.81
Hgb 113
Platelets 161
Neutrophils 1.94

So my wish for two healthy kids home for Mother's day came true.

[evansmom]

Hi Chris!
Thanks for the update. So glad to know Kira is doing well. Evan took 26 days to engraft and I can remember how great it felt to finally see those little white cells show up. I can be sure you were overjoyed to see them at that point!