Angelica finished her last round of chemo a couple weekends ago. The next round is called “Delayed Intensification” and starts on Thursday. In essence its like a mini version of the first two rounds of chemo and lasts until the end of January. In the first round, she lost her hair and had to deal with blood-sugar (diabetes) issues, and she is on basically the same meds for the beginning of DI.
There are a few things that are different for this round of chemo. 1) There are less doses, 2) the time is a bit shorter, and 3) she doesn’t have leukemia any more. In the first round she had less than 5% of her marrow actually capable of making blood cells and so when something killed her blood counts, it took a long time for the counts to come back up. That fact also played a big part in how the drugs affected her and what side effects she had to deal with.
Right now, her marrow has recovered to over 30% (which might not sound like a lot, but in contrast to 5%, it is. It is enough to make a lot more blood cells a lot faster). So even though we have had these medications before, we don’t totally know what to expect.
We are praying and hoping that she doesn’t have to deal with more hair loss or diabetes or the shots and blood tests that goes with that. We are also praying that she doesn’t have her blood counts completely decimated and that her immune system remains intact.
Thanks to everyone who has been so supportive of Angelica and our family.
I love my girls. They are both turning into such amazing young women. Angelica is dealing with cancer treatment and being so brave (and winning) and Alexandra is showing such maturity in dealing with the changes at home. (And I really really really love Patti.)
Angelica is already a teenager and Alexandra is right on the doorstep, and this brings a whole new set of parenting challenges. Iâ€™m not freaked out about parenting teenage girls, but I am aware of what the world is like for them.Â I make a point of watching the shows that they watch and we still get copies of their incoming e-mails. I want to know what messages they are receiving and how they are processing those messages.
The messages girls receive seem to be complete opposites. There is so much opportunity for women today to rise up and be as successful in any field as they desire, and the examples of successful women in business, politics and at home are easy to find. At the same time there are more messages in mainstream media that show girls in relationships that are at best demeaning… In most cases it seems that cheap meaningless physical relationships are the norm and I hate this! The message seems to be that what is inside has value and tremendous opportunity, but what is outside is not good enough, not valuable and not deserving of faithful devotion.
I want my girls to believe that they can be successful and at the same time they deserve to be respected in their relationships (not that they should be dealing with relationships yet), and that there is nothing meaningless about them, their bodies, or their feelings. (I’ve got a whole different post to write about the standards I want my boys to rise to as they become men gentlemen).
I can say a lot of words, but finding examples of this message in the real world is a harder task. Itâ€™s not that these messages donâ€™t exist… Last year there was an episode of Bones where one of the main characters was talking to her daughter about relationships and sex. It was an exceptional conversation, completely accurate and a scene I would like to show my kids.
I heard this song on the radio a few weeks ago and I instantly fell in love with it.Â I dedicate it to all my girls. Patti, Angelica, and Alexandra… You are AMAZING, JUST THE WAY YOU ARE:
I was reading through the blog and realized that I never updated on the status of Angelica and whether she had to stay for 3 days or 14. Being as today is July 1st, and we were getting checked for an infection on June 26th and that makes 5 days… We did in fact test positive for a gram negative bacilli bacteria. There are apparently a whole family of bacteria with this class, and I don’t know enough to adequately explain where it came from, but I do know that after two days of receiving the antibiotic specific to the bacteria, Angelica is feeling much much much better.
It also means that we get the extended stay of 10 – 14 days. (which would put us going home next Wednesday to Sunday sometime).
Now that Angelica is feeling better…
we are making kale chips
But all this comes with a price… My mom (Mrs Culley Sr.) has not been able to see the baby or visit Angelica for over a week because she had/has a cold, and if you know Merrilyn, she loves her grand kids and would never go that long without seeing her grand daughter in hospital, and would never never never wait that long to see her new-born grand son.
But you might be saying… the baby is home now, why can’t Merr go see the baby at home and how could that effect Angelica??? Well, Angelica’s immune system is so low right now that we have to keep the members of our immediate family illness free, or else we have to stop visiting. And right now, Patti cannot go without being able to at least visit on a regular basis. So people with coughs and colds need to keep away from our whole family. (My mom has been amazing at understanding all this and I would like to thank her as this is really really hard for her.)
Well keep praying that she doesn’t get further infections, that we have the least amount of complications and that our family gets reunited very very soon.
One of the things that Angelica has said is how amazing it is to see all the people that are praying for her and that care about her. There have been a lot of people and groups that have been amazing, but I want to highlight one special community. We have received an amazing amount of support from Angelica’s School.
We have three kids that have been going to Alex Hope this last year but we just moved there before the beginning of this year. So we’ve only given them a year to get to know us. Then at the end of the year, we break the news that one of their ‘new’ grade 7 grads has been diagnosed with leukemia.
This community has been amazing… really amazing. Each of the classes has been very supportive. The parents in Jeremy’s class have organized fund-raisers. The principle handed me a significant number of gift cards for groceries. Others that we barely know have walked up and handed us small gifts. And we are stunned. (We’re sorry if we give you a deer-in-the-headlights look if you’ve come up to talk to us, we are just so overwhelmed.)
And, we’ve found out some of the costs of this process on our family and our budget, and the help is truly amazing.
We are very blessed to be a part of this amazing community. Thank You Alex Hope!
I’ve been watching the 30 Days of Nothing over at Owlhaven, and thinking of giving it a try.
So, as of tomorrow, we will be starting our own 30 days of Nothing. I’m not exactly certain how it all plays out for us…I’ll be talking to Jon tonight and then hopefully I’ll have a plan all set in place for tomorrow, but as of right now the plan is to do some form of the 30 Days of Nothing. One that works for us.
This should be interesting. I’m not a big shopper, but I do buy more than I should from time to time. So stick around and see how well, or poorly I do this month.
In other news, I slept for 11 hours last night. At 8pm,I laid down to read with Jeremy and then cuddled with him and fell asleep. Then we woke up this morning at 7:00am….Wow! Now, the baby was up at 2:30am and again at 4:30am, but still I got a 6 hour uninterrupted stretch, and I feel SO AMAZING! I’ve managed to get quite a bit done today. It’s one of those things that if I went to bed every night at that time, I’d be able to get up earlier and get things done. I think that the 6 hours of uninterrupted sleep is the trick. Even though Siah goes down around 7:30-8pm every night, if we go to bed around midnight, and then he’s up at 2or 3ish….well, that’s only 2 or 3 hours that we are getting before the first interruption….and that’s just not enough in my books. I know that I could let him cry it out, but I’m not there yet….not saying that we won’t get there, but not just yet.
I have a bazilion pictures that I’m going through. trying to unpack. Take Geli to French Camp, do laundry, deal with a one year old – man are they a lot of work – buy school supplies, exercise, blah, blah, blah, blah, blah, blah, blah.
I actually have something really cool that I want to share, but I gotta go to bed ’cause 5am comes around really early.
Hopefully I’ll be able to get some time tomorrow.
Talk to you soon.
While you are waiting for me….what have YOU been up to?