so.... We are creeping up on the 3rd birthday of Pearl Anne. She has been stepping up and working hard to be a grown-up immune system. She did need some help and some re-vaccination had to be done. Some times when you are two, you are so busy with life and saying "NO" that you forget to produce titters when you are given a little bit of a bad virus and are supposed to get to work.
Anyway last week was a crazy, stressful and very tiring. I, for one, am out of shape in the going to a million appointments at several hospital institutions in short order. But we did it. We have been excused from next year's appointment and are not expected back for the week-long trudge until 2017. A very good thing.
So I managed to get myself pretty worked up and freaked out over the course of the week. Mary-E looks great but then she did the first time Leukemia creeped into our lives. She was in perfect health when I sent her off to college when she relapsed. I know that with every blood draw, every bruise, every hair that falls, it could be a sign and not a good sign.
Well this time what you see is what you get. Thankfully.
I asked Paul Carpenter (our favorite Aussie Bone Marrow Doctor) when I could stop worrying. He asked Mary-E what she wanted to hear. I said I wanted to hear the truth. His reply to me was "She is fine for now. You will always have a reason to worry."
That was not the answer I wanted. I wanted him to say we were done. They had fixed her and we were released. Instead, we have just been transferred from Pediatric Bone Marrow Transplant Service to the Adult. She will be closely followed for the rest of her life. They are watching and waiting for something to appear, the next thing to be handled. This journey is just going at different speed. It is not over.
I, like a million families of children struck by cancer, want it to be over..... Really Really Really OVER. It is never over. It is never ever really over. We don't get to go back to the time before cancer. I know this but there are moments I want to believe it is not the case.
I think it is sort of like giving birth. The pain of the actual birth recedes with time and more children are born. So.... you ask. 24 months until the next big appointment. There will be some small check-ins. She is essentially done. But in reality she is not done. She is done for NOW. I wanted her to be done done. I wanted to put away that knot in my stomach. I wanted to not wake at 3 a.m. in the morning with a start. A deep chill of a horrifying dream. Over, I want it to be over.
I am working on gathering the strength to go forward and constantly prepare for battle. Even it is just by taking a few deep breaths. I need to re-charge somehow. One step, One moment. One thing at a time.
Best use of my energy. Putting away Christmas...... with a label maker as part of the process.
Next week at this time the "Girls" or more specifically, Pearl Anne will be flying solo. She will be in charge of keeping all that invades from MEB's body.
Protocol: Immunosupressants - 180 days post transplant.
Mary-Elizabeth 31 months or about 900 days.
She is almost done with this step, 24 months, three different kinds of suppressants she is almost done with them. I am currently not totally freaked out about it.
I think we are all so tried of this it is hard not to just be ready to be DONE
I am feeling like the time as come to end this blog after 10 years. Maybe I am done and leaving this writing forum will help me be DONE. I won't quit writing, I will just do so in another place, another title, another forum.
Maybe it is time to move on in the way one can It is a tentative moving on, not really but sort of. Hanging out in a different place in Cancer World. As we all know, we don't ever get to really leave. Now it is about managing the long term side effects. Kidneys, lungs, brain, menopause, thyroid, cataracts. (These are not just stuff that might show up, these are guaranteed to be a concern. )
So this morning, I will just drink my coffee. Water a bit. Watch some plants grow. Read my book a bit. I will enjoy this moment, this instant. This bit of Seattle Sunshine.
Not
Rotavirus vaccines are being rolled out across Africa at a remarkable pace thanks to the support of the GAVI Alliance. To date, 21 African countries have introduced rotavirus vaccines in their national immunization programs (NIPs), of which 17 were supported by GAVI. PATH, through the Vaccine Implementation Technical Assistance Consortium, has successfully assisted and supported GAVI and countries in the design, planning, introduction, and/or integration of rotavirus vaccines.
It baffles my mind that there are people out there that choose deliberately not to give their child the best possible chance to survive and grow into a healthy child. The article above was posted by Kathy Neuzil MD. She works for PATH. They work on educating people around the world on the purpose and need for vaccinations.
I think of all the people that died of small pox, and suffered from Polio or died of Whooping Cough. It just makes me crazy.
I know there are lots and lots of scared moms that are sure vaccines cause autism. There lives were forever changed because of that diagnosis and they want an answer. I certainly would want an answer but over and over again the link is not valid. Unfortunately many of the times that Autism Spectrum disorders manifest themselves at some point during a child's development, chances are there is some sort of vaccination that has happened.
Now I am not a medical professional, I don't have a degree in Public Health, I had the mumps, measles and chicken pox and lived to tell about it. I was also vaccinated with everything that was available. I hated each and every time ME had to have her shots. I started making her Dad take her to those appointments. But
I also know what it is like to watch a child suffer and struggle fighting a disease. Why would anyone not prevent a disease if they could. If there was a vaccine to fight childhood cancer, I would be the first in line to make sure every child received that gift.
I can't talk about this issue anymore. Neither can I talk about guns.
I have seen too much death of young innocent children and the destruction is does to their families.
Just so we are clear, I gained a new appreciation for donuts and Spam after our trip across the country. I also craved fresh veggies and green green salad.
