We get to go home today - we are happy about getting to be a family of 4 again, but also scared since we will be completely responsible for Alex's care when he isn't at the Hospital Clinic.
Today, the Discharge Coordinator will be talking with us about our home health service, which will bring us our medical supplies, and change Alex's PICC dressing, if needed. We'll be coming back here twice a week for quite a while for more Chemo. This phase is called Induction, and it is gruelling.
Last night, Alex was complaining about his "teeth" hurting - we think it is actually his mouth, and that it is one of the side effects of the Daunorubicin - mouth sores. He is really trying to be brave, but he just doesn't understand why he hurts, and why this is happening to him.
We are trying to teach him how to swallow a pill, so he doesn't have to taste the Prednisone. The unit here had success teaching another 3 1/2 year old girl how to swallow the pills, but with Alex not wanting to put anything in his mouth, it's been a real uphill battle. We have sticker charts and prizes - but so far, not a lot of luck with that- we'll keep trying...
Our friend Deb is delivering a Red Wagon here to the hospital for us to load all of our stuff in to bring home. Thanks so much! The Red Wagon is sort of the vehicle of choice (instead of a wheel chair) for the younger kids in the unit. I know I'll be wheeling Alex back and forth in it for quite a while. We are going to name it: "Alex's Battle Wagon". Other friends are working on meals for us - we are so grateful!
We also heard a little bit more about his treatment plan, and that he will need blood transfusions as the Chemo wipes out his bone marrow production. I'm encouraging everyone that has asked "what can I do for you and Alex?" to contact the Red Cross and see if you can donate blood or platelets. It won't go directly to him, but it will help replenish the blood he does take from the Blood Bank. Eric and I have donated blood for years, and we encourage you to do the same by going to this website to find a donation site in your area: http://www.givelife.org/. And while Alex most likely won't need a bone marrow transplant, a lot of kids on this unit do. If you are interested in getting your bone marrow tested, and adding your name to the bone marrow donor bank, you can do so here: http://www.marrow.org/.
Also, I encourage *all* of our friends and family who are pregnant, or who are planing on becoming pregnant to talk to their doctors about cord blood and either donating it, or storing it for your child. You can find out more about this amazing option here:
http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html
All of these things help save lives. Please consider at least one of these actions in Alex's honor.
It's time to give the Prednisone, so I better go...
With love, Sara, Eric, Alex & Tessa-Lynn
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They are all home now, and Tessa joined them this evening just about dinner time.
ReplyDeleteWhat is great news is that Alex took his Prednisone dose in ice cream and didn't complain at all. Apparently, the cold masks the bitter, so that is one hurdle overcome.
Sara and Eric have a binder of information that includes all the medicines he takes every day and what times to give them. It's amazing how well he is doing considering the seriousness of the situation. However, he is still sweet, but a little more excitable than before this all happened.
Sara is going to set up a calendar on this blog that shows the dates and times for his twice weekly visits to the clinic. That way, if any of her Portland moms want to watch Tessa while she takes Alex up to OHSU, they can make arrangements to do that. I am always available, but I know it would be fun for Tessa to be around other children and have a different play environment than grandma's house where there aren't as many neat toys or other kids.
Grandma Diana
I've gotten kinda lazy in my apheresis schedule recently, but now I know I need to get my butt back to the Red Cross and donate some platelets for my new buddy, Alex.
ReplyDelete(I hope others are inspired as well to donate whole blood or platelets. The Red Cross has Krispy Kreme doughnuts, mmmm.)
Cheers, Eric's coworker Ruthy