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;j F*.xze$7vJNkA fF83цQ2PZ!Sjٸ ;%eGnhrw5︭^JSH.(ޠiDȔ{NFx7C2̑f>4S]l*x:B&cfcJ|4{SnhQӝW#'l\A䙟ȳʙg5UnTz4=q3! W$O+_ ht/r3lNVQ%qJTm?=aO~\fT`q=qlmfg1y1؋~,5:LH‹<+Ȅx`sat@'B$fRx갼wM40ӥ!﹖O9㮛86 =Lw%<27aNٵP5&Hk's$~Y4gï5PH`$z UVHAcިoŬsN\c0S9:KH~?ZѨLnEG:cAIA>^[ LqHJ_5Ħi $}UC>-rK*tYuGrA ]40lt:atA+m*#z)Qֳ%Ocì33[PӲUOkx H,AE!uMh.$,:Iٞw,ԝ*@%b-u#±&\sscK$.BU,/E ynLe}nzLp~x5-y-2Y[IXYNR"pC[ʹ.* H ɑ_Og(U oTvVua $VVo0kd铫bלA %V Ƃpb<^>1ۑOL=i37S}t^c3A{%LYO>Jˑ}IR3>RJ,V\mS1hmz̯He@ ٕ3&B;ooIߢgG$0,xLM&<GL\˔-wA͑ۇ&84{5]6?!:G-B\I9L_>CJuld^mN}]_ "ͥWJw[wP37D#!.ޭtb=};˦Ғ~Bca/wǘ!*^&q7_&**%$&{!u'S ,J5+Ox_ * \*S8\.G,UE-R]MKB[ԣZk+zagkosS&0\':SWVKS _2%PQ_p;̅ZpOEqʅkhc ;{&aXkU`ʕ*b  ǎ010vyHS{HI֌~2ר`dGWn07Q|:t ޽ig_ur=( N[o*}VhoeuD-rk_kpz(opS8R\#i>G"<jaYK\K L_fZO7!0nJkdQ~W}mv(IrͿ+?2oB_Id@j b3e}8n<J S &Թ~6m"Stem cell" itself is confusing to some people, who have gotten used to hearing of "stem cells from cord blood" and have this idea that a "stem cell" is a kind of cell that lives in a placenta. That's not really true; a "stem cell" is just an immature, undifferentiated cell that hasn't decided what it wants to be when it grows up... like the healthy newly-formed cells in a healthy person's marrow. A Classic BMT is stem cells; an auto-BMT is stem cells; a cord blood transplant is stem cells. The point is to get healthy stem cells into the patient at just the right time so they find their way to the inside of the big blood-producing bones and start cranking out new cells.

  • It's a difficult procedure, but it really does work for a lot of kids. (Mark, I think)

    I know someone who needs a bone marrow transplant: how can I help them find a donor?

    • I hope I can give some satisfactory answers to your questions. If none of the relatives are suitable matches then a preliminary search will be done on the marrow registry. The majority of people on the registry have only been tested for four of the six major antigens (This is to control costs). There are a few 6 out of 6 and a few more 8 out of 8 people listed on the registry. (The military routinely tests it's donors for six). The best case scenario is that several fully tested people will show up on the preliminary search. These people are identified and hopefully are ready, willing and able to donate.
    • Lets say a some potential donors come up matching four, but haven't been tested for the other two antigens. Then these people are identified and asked if they will come in for further testing. This can be a long, frustrating and slow process. That's why if they are going the BMT route, then this has got to be started right away.
    • Many people have donor drives while going through the elimination process with the NDMP. We did. Although no match was found for our daughter, three people from our drive were identified for other people. That made us feel great.
    • Be aware that some BMT coordinators just aren't as aggressive as others in finding matches and getting all the potential donors tested. Sometimes family and friends just have to stir the pot to get some action. (Barb)
    • Our family has had great success with drives -- they have been organized and managed by friends of ours in different cities, however. They've done all the hard work.
    • Here are a few ideas that they used that were wonderful: (Ed Note: Adam is a Scout who wants to do a drive)
    1. One drive was hosted in a hospital. So many healthcare workers came during the 2-days, plus many from the surrounding towns. See if anyone near you would be willing.
    2. Get media interest -- maybe a follow up story on the news could be in the papers and TV, Radio, etc. That brought a face, family, name, etc into the effort, and MANY people said they turned out because for the press. And Adam's perspective of what it was like to be a donor would be incredibly meaningful. And/ Or if you know of a child who is waiting for a BM match, perhaps their family would be willing to share their story. It's important.
    3. Have Adam form a committee to help him! It's a lot of work.
    4. Check with the Marrow Foundation or Leuk Society to see if they'll help fund or match funds, or pay the difference for ABDR testing (vs just AB testing). If you have big benefactors that will cover the drive $, let the public know it's FREE. More will come.
    5. The drives here were festive -- pics of our son, welcome signs (painted by our son, Travis -- 5 yrs old), nice soft music, balloons ALL over, raffles of merchandise (to offset costs of the drive) like donated Princess Di and Erin Beanie Babies, a signed print from Wrigley Field, etc. Also Fergie Jenkins (famous baseball player!) came and signed autographs at one drive. Brought out a # of people and got a lot of publicity for the drive too. One upcoming drive here in our town is having it at the Police Station and will have Fire trucks and Police cars etc and a kids lockup to get families to come even with their kids. Also, sign age is important. Make sure everyone can see signs from the street on that day to get to the right place. Other drives had people handing out flyers that day on the street to get people in.
    6. Media came to the drive and interviewed our son and many of the attendees. Did follow-up stories including how people can register if they missed the drive.
    7. Contact local corporations who may be willing to sponsor the drive, or fund part of it, or at least encourage their employees to attend (get time off to come).
    8. Put flyers all over with this poem and the dates and time of the drive:
      A hundred years from now
      It will not matter
      what my bank account was
      the sort of house I lived in
      or the kind of car I drove
      But the world may be different
      because I was important
      in the life of a child

      How can ANYONE refuse?
    9. Make sure the media or anyone else emphasizes that to register it is a small blood draw from the ARM. People have all sorts of ideas about the registration process that inhibits their attendance.
    10. Have Adam and Grant and your family there at the drive to thank people for coming. Give them something to hand out or do (Travis handed out Origami flowers he had made at one drive!)
    11. Post the drive on the listserves. Then people like us can include the date place and time on our web sites too, in case we know people local to you.
    12. No matter what the attendance, ANY number is a success. More in the registry than the day before.
    13. Contact EVERYONE you know -- and those you don't -- synagogues, churches, colleges, schools etc. To post the info re: the drive.
    14. Maybe do it in conjunction with a blood drive if you can't get anyone to sponsor place or time for a Bone Marrow Drive. By the way, we called ours Marrow Drives, so people wouldn't get freaked out about the Bone part and make up stuff... see 9 above.
    15. Have a book handy at the drive for people to sign, color, and write messages to whomever the drive is for (if you know one person who is waiting for a match). This is the most wonderful keepsake for us. Most of the people we do not even know! (Melanie)

    What does the donor go through?

    • The donor goes through... well, not too much really. Nowadays general anesthesia is normal for the donation procedure. They put the donor under, stick in a really good-sized biopsy-type needle, and extract an amount of marrow that depends (IIRC) on the size of the recipient.
    • Like the oil-drilling techniques that Iraq claimed Kuwait was using a few years back to steal their oil (you learn so MUCH on this list!), the doctors who do the donation procedure like to use the same puncture several times by sticking the needle in at various angles. It cuts down on trauma and the minor disfigurement to the donor. So typically the donor gets something like five little "dot" wounds around where s/he would wear a belt, feels a bit z lsAt=ʴ d2^mVό`"2q==\i ;U禐Fy9UOL C%\)[{v4X㈶挦 !w` ݟާM AvyLy0d1ihpcVwE(gڕQFV:s6K\"tf@ېy2 nSgbJ EA=uWK?L@`}eZ6>.89>d:JbKU ovG~0Cߖ.CM?kz?:oIhixA.f65Q HRoMzN6${i([;#\E*f]HnCj!AV [pCA,RNH2Q[4A? 0~qQ@z`\``*r} C=tOjSiO?݁dj\/,֎usMfR2U]HZՅzxFSoaDJ T2ZgKA.e ++?T))C2/t34Ig3+nl!2sk IYzR1fZ-F]gbAf OnV+>J &=V@~Sck!58hE9;3E·mAV=TEfgax3~*/!e;j/U=K?lB6zqJWZI1Q,a' U<'GjGTCV c@n?4QJi nUS,?TG*b5*XoEuxhF1-y8o$gC|9y@!)D`!xt{Goo|e5P o17 o;_4 h-,p% Dd4_& x7pčR;T'M۳8-f+:YnT3e$7AR@ W23}B:& }U? ffMsXNt%,)pWoc^E],5-'r}9/#I[qN\iP_|GE Ïf5>[r`W2+\mI%O =fͥ%#iR;MV`չWuͦx6dn &\Egp`f=a)O6+N4$iwdS6PNw-(Mz;]Id:=TWHbboD77ATĬCi ŏW)DR^!O)^;cR)gGqZ﮲.NEW\Q'Gdtv4tX6}^1%TYRKD/X^ Us}w.&,Yx[UfP9N&SYltCWeAԛk(@uʤz;8N^҈Nq*ef<V+CB[J=\Y VU?O-<18Q)1If4Rk]!<EumdL %gP%wj_qWnaNd{V`n =2uv8P0Rd .DYpD' :FAI`V@Doc$F./h :MA3E6%2C >Wuؾ pTE ORl>5Rr9 TH]x !y 6F&^pK 2C~fkINJ`.@OKR!d7СS&Ip>5I+@_L􇷤w@2Opv'&HfBdqp)SaiN}#Ae*"3 ̒bL֏@#2]f13G%6c5.IJ7rDW%HBaOmUT]u(P0fj&O0nnJ  5N/z!=eY WoR0d9̛kw. :e@|bC2ؒTm?8X&q0Đr| ` F~ݨbv`|2WJJ5DR?iڴ dŶ[ /B6z.o)ovc6}Ti jJ6*Lg #.}+QSD8NF n8`~N_TJ:21 j;&&`hx8q}?{"B q-T34`e[Ab2_Bxoy+9tζk 4`sB˴JV3Wx]120o0V럍9\.V?UwveݐW'y`m5.jd S^l@G7|2D`ma)oJvl`1-jV l3qk$i,dTrZB3rCjK"^yɩ˦`U%>:$߭O6/ ĘvE-C\7Wv/X(vH)cVAy1WJDAn[[>4̷ ?GYYsW)RQ'9p]o O@OKx?"]5Hp,{0sw^ hr2"6#JZZE3u*~ _ ,)#W*y7KORva(,vv[9k28SX m,,g*naW-*X`HOP̢|?GV0G&\dA!C:;>YcYC<{[\baP?70\O|oʥl;Ɂ{1hԩn'EgZK9'NKy/eu/*8G9Ua_pn&y Jao-ޑs"enCndtB$}n\ LE1)~*;,1nR` rV "3\=0}#ify=H, -OZOe8(gEc[e/JTo+ "} o JFcr.b(rip~ \4)n3saH{`R~I -PXH+UO= ~?3:&~QR|>!PM>ESSèx-$asdg]9USwͼaj#oWYy(덕vT@P@fnJ7"[l5wJXyL;,HH+I$ wECd>QIo7GHgݕwu!l♈FPXE dF8F.D%bT}Ƶx255B|(!1cA>ctZ |GPy 6cXK)7ܴlVxj?CPn#bA8r%G9:1qfH5t-t[2\CZ+ d5@*Q/̪JGwiKܵ ,t* @V d  + Ps9\c}ZBDsnc$PDKO#f۽(%DQTC1epetg0יvkpP?E[],Y8sCp`)g x_t/5a#~)e}Y-9k}|aS_}#r&yMr*ñ 8dyb1}٪ZtiXwa%9&8\ˠ|cKbE_O,(򰕭fF m 끋Q E,P\T9$=;=G]hq571/CAV"9d=w킏 &% `Rt;gZ&n+,I`vI**54/U³A`/C-u`w@k_Ti@x=ZV? 6b&P:Z(oRAO3|$$s#a=},[ֿ$?( Urt1[z2Vz7s#YXё[^ytE eOiUu=+s:Uf_S>.am$F6 Iٮ^B6. SjzuCҊ~8;i΄.k(i%WK* fP|HE"蒺ir/:F(rQlk -N>p,hl+ѕdsm-"#w\F2)տd.7{_[8FL״m]7N4\ҥT8 w('K4c_uF<.~#Yh&¸o- ܍X^bSEb:n4ξ,)*lfe;:_sy6e;k/'1 'kvytד:+CkDh:v(mh:Bz"\ y]E$B'|\$:x_3uk;g=HA0_9Y5_>Z|h,{wmIR\❧VKHs8hf&e 8 RX_:1 Sz J+M 3]4e!lga8*/ػ%Xj ʡC|]9KK36_C6c/6GoZ96`x/[QI^agOA - 33 X[KTXT I 9\M5}:BS4w4R׏!ĨJ;pLkWRN8lct"&rQjohoX&QHdoʍn`Lu~0ꊅQnƏf^+^~&o*51D]y0"Iˆ;]\&JrpKu;;1u*px|\p bPOfp݌` 먭m}6_:v2 ZS DO#:юl%}V 1/ǐ´E-S,KҦ #82bmٓ) \I˘!^ԲZY⬢!F_xj톏*Ag{/2WJJ<@O5ɰH/eJ"q-&w_DΠmػY.%G7JG'٢,yyx34Oi/E<fuP[Ӏ,^zl]ǐ )DV7FtKD:K1%2A: у2hK@ P-'6YÔqrvnxGGj w|\\C-DJIV'YVe yG}^FPģ =V3dRBINd7XjR3~|#{r-."[Ԟj$okϊLw|LB!n)c;I[Q~P5^4*̻uĈA'sDO01yzSBEtڑ?k$H WL?,[RRjCGPACq~'{e{?EOьqo]3$5zPv Ǚ?VKU?2G'4|3i^dVE^r|pc5``:\}}=PE)׵ۑ"Vzd`}BSW^\e`#pWDC!,E1_so4HlH[I[WVฅ`.6k/SA)0O`CC< hab {3lMcǤ``*e^[H/2ʇ5%i[B|5֘(([/XA+Jb1q󒽟%;\>or1ߧuygHqShqB_ޡzu5/nf7s)>]B<Ri'Qs&5neٝC攐̗·6Eng5s5U:zj.>)KV.rцo( dzjt @rA܊|8&xe61!EX ΜBK{g:KRd'R5B ^  wgOL %vUk;:t!" RoA0Yڠ _k^eyEȰ`M\'s,B91jUoH'Rި* o+(qKdO2 yh#/:YiI@m/xB8i ύHa_m!pMsgm/,&-nKx Ma7`vnSŁRK~=]Gz/ kIFc3J :|'"G31aX &T b^nEEi7np;vI&D'A7cHEi6.V_sCG?dB,ËnYOJ9Cn~|1^I t ;lJ,e+(.n|Ji*Z aqv G)iC^ڒZO0 >7O DYkW@m;q GґvXP^ -#m RQ&m?.aHw41,"!‹(z}^M(亲*~3Zari-j)5%e~j+cPܔEt-j:AOهw"?Q!;Aݨa[Tm̮XXXC A|lVNNZ~SGG\JBr}(LVP`'ӗ>%7+qq:׉י!&0+t> OGmMU҂{sSB*E_=8k_8[`!# _:fb}t"𷃢I54pvMqc4DnLB0uH"]IQV}]pWop $2D#`A{[J<2G- _| |y`ƗMu2i=f;w[LǺ\z)+hZѷ]O7nr#1Au}\(,,x,J ߗ SG$Fߍ'#k1BwuKJ TmB@`9HK{3  NR#;Ty z{f&bɿ4hKt5jXsW~(Y֝7`G|sҀ+2OT have to remain in isolation. We were in a brand-new ped onc unit where the entire thing had HEPA filtered air. The unit was entered through an anteroom where all visitors had to wash their hands. Our hospital felt research indicated that the crucial thing to prevent infection was hand-washing. We washed our hands ALL the time. However, no scrubs were required, rooms did not use plastic sheeting stuff, and all well adults were allowed to visit. Kids could come too if they were not sick or not in a day-care situation (it was summer, so school exposure was not an issue). Our young son came to visit frequently, and our 2-month-old infant stayed in a crib in her room when I stayed with her.
    • My daughter, believe it or not, recovered very quickly. Let me point out, SHE WAS AN UNUSUAL CASE. As one of the doctors told Mark, better than textbook. She did have the usual mucousitis problem, and some touch-and-go when she was in PICU due to an E-coli infection; this could have been bad with state-of-the-art i.d.. and treatment, but that was it.
    • She came home with almost normal energy (5 weeks post-BMT), was taken off gancyclovir early, was on prednisone as briefly as the doctors allow, etc. Our big problem is going to be emotional trauma. Not many parents are lucky enough to be able to say only that!
    • As I know you know, but the original poster of the question may not, the biggest potential for problems is Graft vs. Host Disease; the new bone marrow, in essence, rejecting the recipient's body. This is the biggest danger in the non-related donor transplants.
    • Our daughter was very lucky in that she got absolutely no GVHD. Her brother, the donor, is genotypically identical, and probably alike in the ways they can't identify, so this could be why. (Judy S)
    • There are major differences with how the patient is treated after the transplant. I know of one teen who was totally off all restrictions by day 45 (he had a stem cell transplant). He was also out of the hospital a week after it (he was at a local hotel, doing the stuff out patient). My son had a lot of his restrictions lifted by day 100, but he still is immune-suppressed, and will be to at least one year post transplant. He will also need to get his shots over. It also makes a difference if you have a related donor or a matched unrelated donor (MUD). I can give you some more info on that end of it. (Leah)
    • I'm glad that the radiotherapy is moving along and that it isn't as bad as you feared. I'm sorry though, for the depressing atmosphere you are finding in radiotherapy. We were treated differently at MD Anderson. In fact, many of the adult patients were interested in seeing our son each morning and would often inquire about his progress. He would run down the hall, greet the patients in the waiting area and then run back to the treatment area to watch them set up the equipment. I think it would have been harder if they didn't set up the kids for treatments first thing in the morning. By afternoon things could have backed up and waiting with a hungry NPO (naturally pissed off) 2 yr. old would have been tough. It was also helpful that Garrett got to know the staff and would get a little gift from them each day (this was done for all the pedi-patients).
    • As for playrooms and such during BMT, I'm afraid your son will probably be restricted to his room from the time his counts bottom out to count recovery post-engraftment. That usually means an ANC of 1000 or better. Oour son was allowed out to walk the halls the day of transplant, which shocked some of the staff, but that was because he still had counts in his peripheral blood. That day we took a final walk to his favorite window watched the traffic outside, then over to the aquarium for a few minutes. Finally, we ambled back to his unit. For the next 21 Days, he did not leave the BMT room again. He never felt like "not playing" during transplant (except for one or two days) although his was an unusual case. Most of the kids do slow down a bit. To keep things calm, we had to hide his shoes, because he associated them with going outside to the playrooms during previous treatments. To give him something to look forward to, we hid a big bin of new "surprises", which we would dole out to him every day. Each morning the staff would stand outside our room and laugh because he would scream out "Lemme' outa here! You're mean!", only calming down when he was presented with the new toy or videotape. (His complaints were loud enough that he could be heard down the hall to the nurses station. We always thought it to be a good sign).
    • After transplant, I'm afraid, the regular playrooms will still be off limits. Probably for the first 100 Days. He will wear a mask anytime he leaves your home and will have to avoid contact with any stranger or person outside of your immediate household. Lots of the BMT kids we saw would also wear latex gloves, although ours refused them. You will adjust to these restrictions and I'm sure and the time will fly by. For playtime during the long daily visits after his release and since MDACC had no BMT playrooms, the staff prepared an unused storeroom (had it disinfected, etc.) and let him play in there. They brought in toys and books for him to play with. He could remove his mask to eat and drink in there, as well, but visitors were not allowed. (I cannot emphasize enough the importance of immediate and thorough hand washing for anyone who enters your home, his room, or anywhere else, no matter how benign the setting!)
    • The new Alkek Hospital at MD Anderson now houses the pediatric facilities, including new reverse flow BMT units (with real Mommy-Daddy beds. Yea!). My wife went there and said they also have reverse flow isolation playrooms for the BMT kids. She told me the facilities we first rate and were designed with input from parents and the kids themselves. That's the way pedi-facilities ought to be designed.
    • Everything associated with a BMT seems overwhelming and sometimes it is. One of the staff told us that they couldn't possibly prepare anyone properly for the experience. The really good news is that, if you take it one step at a time, it doesn't seem so bad (My wife said it's like giving birth. God helps you forget the bad stuff.) (Ricky)
    • A BMT consists of 3 basic phases:
    • 1) Preparing the body to receive new marrow--this includes killing off all remaining marrow that is left in the body which is done with high dose chemo and total body radiation. Not only do you want the leukemia gone, which is hopefully done by the chemo, you also need to have the patient's marrow dead so the new marrow can come in and set up shop per se.
    • 2) The actual marrow transplant--you wait for this day with baited breath, only to be a little let down because it is basically a blood transfusion. The harvested marrow is introduced to the body through the port, just like a blood transfusion, which is what it looks like. There is a very strange smell, rather like very strong garlic, which is what the marrow is treated with. In our case, our son's marrow was harvested in Mid December, treated with chemo, and frozen. Then, on January 10, it was thawed and re-introduced to his body via his port.--an autologous transplant, meaning "self".
    • 3) The third and I think hardest phase of transplant is recovery. From day 0, which is transplant day, until day 100, the patient is watched extremely carefully. It is a VERY hard time, which I don't want to go into right now--but all previous treatment was a piece of cake compared to this, trust me. (Cheryl)

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