Had Dr. appt with stem cell today and he said the earliest he would admit her for transplant would be Sept.29 but we are all thinking it will be more like early October because she will need some dental work done. The current plan is to have her on another "clinical study". The goal of the study according tho the papers is to learn about the safety of giving TXA127 (Angiotensin 1-7) in combination with chemo and double cord blood transplants. TXA127 is designed to increase the growth of certain cells especially platelets and they want to see if this drug will help counts recover faster after chemo and cord blood transplants. For the chemo portion she will be on Fludarabine, Melphalan, and Thiotepa. The study requires she have back up stem cells and back-up donor cells which explains why they needed 3 cords instead of two. She will also get ATG (antithymocyte globulin) pre transplant that is supposed to help reduce GVHD. She will be on drugs for at least 6 months to also help prevent or reduce GVHD. Mycophenolate mofetil 2x daily from -3 to day 100. Tacrolimus will be given through CVC non-stop for 3-6 weeks until platelets reach and stay at a certain number for 3 days in a row and then it will be switched to pill form until around day 180. The papers say after the initial hospital discharge she would only follow up once a week but I think that is not fact. All the drugs I listed have mile long lists of possible side effects that horrify me. Her Dr. seems fairly confident that she won't experience the issues she did with IV Methotrexate, but I am nervous about it still. So this is all I know for now. Still has a few tests and then the dental before they can submit to insurance for approval and schedule her!
Just remember those lists are of possible side effects. If everyone got all of them, well, they might decide leukemia is a better way to go. Know what I mean?
I was unaware there are any meds designed to grow PLT. So were/are my docs unless this is a new med. The study sounds complicated but it's trying to produce a good result. One thing I thought when I was going through was that whatever I could do to help them better understand the disease and/or cure it, then even if I didn't make it it would have counted for something. So I signed up for every study they asked me to do, except one that could have put us or my wife at significant financial risk.
Anyway, this is all forward progress. So that's great. Keep us updated.
Well, after a lot of tests for evaluating if Maria was fit for transplant, we finally got the call that she was and as of today, we've been tossed in a tornado of appointments for the next week.
They gave her an unofficial date of Oct. 22. They are still running tests now and then lots of information related appointments, it's crazy. We are eager to get this going. Just wanted to let ya'll know where she's at right now. This all took a little longer then we thought since hearing of the cord blood match, but I guess thats how it goes. I'm proud to say that over the last couple months she has been working hard at being up and about and is stronger then she has been since being diagnosed. That's all I got and you will see more of me on here as we finally start this journey!
It is confirmed that Maria will be admitted to the hospital this Sunday 10/23 and if all goes well her "2nd Birthday" as she prefers to call it, will be Nov. 1st. She is getting the required CVC tomorrow and is more nervous and upset about that then the actual transplant. She was put through I don't know how many test before they'd officially approve her and medically she is actually really healthy. They did a pre-transplant bone marrow biopsy and she is still in her complete remission which is great. Apparently they didn't think she would be (she hasn't had much chemo at all the last 2 months) and so the original protocol they chose for her was denied and a new protocol is in place.
She will be on transplant protocol 2008-0363 aka Thiotepa-Clofarabine-Busulfan (those are the chemos she will have) She will have 3 anti-GVHD meds as well on this protocol and medicine that is supposed to help the WBC come up quicker. Her labs have been fantastic. She has been doing great and getting stronger by the day. We walked around for 3 hours today at the zoo to enjoy the great weather we are having and the fresh air while she can. lol
I am concerned about keeping her infection free. Also, I just read Amy's thread and had NO IDEA, (guess I'm dumb to not think of it) that she would lose EVERYTHING she has ever been immunized for. The idea that she could get every and any horrible disease until her body takes immunizations again, horrifies me! I was scared enough to think about the cold and flu season and stupid pneumonia, but now we are adding measles, hepatitis, meningitis, and gosh! Why don't they tell you anything about that!???? With everything going on do they really assume that people put that together on their own? Or am I really just that dumb not to have done so?
No, you're not dumb. My guess is that's something they haven't covered with you or, more likely, that you might've been focusing on something else when they mentioned it. I mean, I was pole-axed when they told me. I think most of us are.
The only things I can think of that change in a transplant are: blood type, if different, CMV status if recipient is negative and donor is positive, allergies and your vaccinations go away. Who'd even think of those few, yet very diverse, things?
That said, I've never heard of anyone getting these diseases before they could get vaccinated. I've been running around without some of my vaccinations for years and it hasn't caught up with me, yet. (Knock wood.) I'm just saying that's not a big worry. She'd have to be exposed to the disease and you're going to be keeping her from sick people.
Chill out and give yourself a break. You're doing better than fine.
Even on Tex's worst "Pole-Axed" days hes still finer than frogs hair.
Tex is right that you will keep her from crowds for the year, especially where crowds can include people from other countries. Polio and many other diseases are not in the US but are just a plane ride away.
The big one to keep her free from is Pertussus or Whooping Cough. It is US based and millions get it every year...many of which are not confirmed cases. Adults cough like heck but it is dangerous to infants under a year and the immunocompromised. Remember they wanted people to get a tetnus shot...well tetnus shots are virtually a thing of the past as they are now mainly Tetnus, Diptheria and PERTUSSUS. The best thing is to treat her like a newborn and insure anyone close to her gets vaccinated with this shot. Adacel is the name and the CDC recommends EVERYONE get this if it's been 2+ years since their last tetnus shot. There was an outbreak in California not long ago and 6 infants died. So the short answer is Maria will start her vaccinations a year post transplant...until then do as Tex said and keep those with any illnesses away and 2. Get your vaccinations up to date especially Pertussus and flu.
Ditto to what Jim and Tex said. My re-vaccinations began at 6 months, not a year, though I think a year is more the norm. Also at 6 months, I went back to work in an alternative school environment with with germy little kids, who I could not count on having had their own vaccines. But diligent handwashing (and luck) goes a long way here. I can't recommend constant handwashing enough.
Try not to worry! Things sound great going into the transplant (remission still holding fast, etc.) so focus on the task immediately in front of you. Her transplant team will help you through the post-transplant months.
Thanks for all of your response but I'm still upset about all of this. Like I am afraid to let anyone near her now without gloves and a mask! How long before she can go to a store without a mask or a movie theater? I highly doubt the adults in her family are up to date with their vaccines and her Dr. did say something about certain vaccines that little kids gets, she'd have to stay away from the kid for 6 weeks after he/she got them. This is scary to me. I feel like she should never leave the house. LOL I know I am over thinking this to a degree, but we have been so isolated for the last 6 months after moving to Houston that the thought of going a full year of more isolation would give me a mental breakdown. And once she is past the 100 days and they "clear" her, we want to get the hell outta dodge! (Houston) We have no family or friends near here. It's been hard. What was life like for you 4, 6, 9, 12 months after transplant? What can I realistically expect? Like would going to Vegas in July be something we could even do or would that be super risky? (Plane ride and then just the crowd of Vegas)
Pams advice is key. Focus on what you are dealing with now.
The...one day at a time vision...helps. It may be easier if you only think about what you have rather than what you don't think you will have. The isolation you speak of is not what you fear. Not much has changed from what you are doing and that is just keeping those sick away. The role of a caregiver is soooo difficult and requires sacrifices also. You too are so young and Its understandable to be angry that the ability to come and go freely has been altered. It will get back to normal in the blink of an eye, provided you stay true to the suggestions of the transplant team.
I'm impressed you are thinking about a Vegas trip in July...but is it really necessary. And if it is, who is it necessary for? You will take clues from Maria depending on how she feels on a given day, or how she feels in a given hour on a given day. My guess is that a crowded anywhere, let alone Vegas may not be the wisest choice. Linda was transplanted in April and we discussed an Aerosmith concert in September. The doctor "recommended" to buy a CD rather than be in a crowd that large. As it turned out, she felt lousy frequently and wanted to rest often. That didn't mean we baracadded ourselves inside, just that we timed our trips in off hours, stayed away from close contact to the general public, (As Pam said) washed hands and wore gloves trying not to touch surfaces.
The advice we received was to invest a year in recovery. For some it's shorter. The toughest part was for our then 11 year old (now 13) as for the last 8 years we went to the Atlantis in the Bahamas. It is difficult to not be able to do the routine things and that was part of our routine. We will get there as both the Bahamas and for you Las Vegas will still be there when she can enjoy it. Plus the money you don't lose (i mean spend) there can turn into tons of fun closer to home. Shopping trips, spa treatments, massages...you can pamper yourselves on days and hours shes feeling up to it, and still be close to the warmth and comfort of home on days when she is not.
Traveling by car to destinations may be advisable for a while rather than the confines of planes and crowded airports. Making little things fun, different things fun will tap into your creative side. That way Maria will not focus on what she doesnt have but will enjoy that which she does. Then....WaaaaLaaaa...those handcuffs will be off before you know it and life will return to normal as it has done for Pam and Tex. (The jury is still out on whether we could use the word Tex and normal in the same sentence)
I used this technique to help calm any excessive worrying about germs: I thought of other "risky" things that I have done, such as driving on the freeway. Yes, driving can be risky--more Americans have died in car accidents than wars. But most of us drive and don't stay up nights worrying about the danger. We don't get online and obsess over every traffic fatality that happened in the last year. Yet we tend to overly obsess over germs after transplant. My 2 Cents: Just use common sense & follow your hospital's instructions.
As I've probably said before, we were never asked to wear masks at the Hutch. I never wore gloves. I went home to our apartment on Day 14 and as soon as I started feeling the energy, I was out eating in somewhat crowded restaurants,going to the mall, seeing movies (matinees), going to church which is the most dangerous vecause people want to shake your hand and maybe even hug you. Yikes! Mostly I just listened for someone hacking in the crowd and went away from that sound when I heard it. By Day 100, I was living pretty normally with the exception of being constantly worn out. But I even drove half of the 2,000 miles home. I was off the Prednisonse by then.
I don't think MDA is as easy going about masks as the Hutch is but you shouldn't expect to be in lock down. You'll want to avoid seriously dense groups of people, restaurants that don't look clean and you'll want to make sure she washes her hands often (or uses anti-bactrial handwipes or such). Airborne infections are really hard to catch unless someone coughs in your dace. However, touching a door handle and then your lips, eyes, nose, etc. can get the germs into your system and are more likely paths to infection. You'll probably want to handle the currency for awhile because God knows what stripper's g-string that One's been in. Seriously, cash is nasty.
What was life like later? Well, it was a series of adjustments and contiuing to deal with GVH. But I did whatever I wanted too. I still carry hand wipes with me.and probably always will. I've become a bit of a germophobe. Oh, and part of the adjustments I mentioned was learning what I could start doing again.
I, personally, would hold off on Vegas for awhile. At least if I was going for the casinos. Just so many people there and all of the cards, buttons, levers, whatever are touched by all of them. Plus, Vegas in July? Might as well go roast in Midland-Odessa and save money.
As long as she has good health, life should start hitting normal, or new normal, fairly soon.
(The jury is still out on whether we could use the word Tex and normal in the same sentence)
So, you want in on this, huh? Just keep this up and you will be.
I hope normal and my name don't ever fit comfortably together. I've never been comfortable with the term.
Once again thank you all for your replies. After posting last night and doing some "stupid googling" I had a huge panic attack. Yeah, they suck but I think I needed to get it all out and I do feel better. If I kept her infection free this l long, hopefully I can do it again. The only reason we were going to go to Vegas in July is because my mom turns the big "5-0" and she isn't much for parties, but taking her to Vegas as a family (and with her best friends) would have been GREAT and she would have loved it. Maria was hell bent on taking her, so she will be pretty damn upset if she can't go. I will definitely hold off on telling her though. I'll bring it up with the Dr and her closer to the end of those 100 days. I've been working on meditating, it helps relax me. I found out there is a nice 5 mile walking trail about a half mile away from the hospital I'd like to try and frequent. I gave up drinking anything but water almost a month ago, and gave up smoking 2 months ago (she quit a year ago when dx'd) and I feel good but sometimes the stress builds up more and I get overwhelmed. The smoking thing was my deal with her once we found out she had the cords, that she had to start getting on the ball to get stronger and that if she made it a point to get up outta bed everyday I would quit and she made it a point to get outta bed. She got strong real fast. (It also helped to push her when I threw my back out, she was forced to kinda take care of herself fully) We are both working and supporting each other to be healthier so once we get through this transplant, we will live a better life then before she was diagnosed. : o) And you all are right, I need to slow my roll and deal with the now instead of worrying about 6 months + from now. Just seems soooo hard for me! LOL