What do I do now

Holden is in the maintenance phase of his Leukemia treatment. I thought I was doing okay. But it turns out that I apparenlty suppressed a lot of emotions last year. I gave up my whole self to make sure that Holden could come out of the insane chemo he had to go thru last year a happy, well adjusted 3.5 yr old. And it turns out I was very successful, and I am so happy about that. The problem is now that Holden is doing so well, I am completely falling apart. I expected to go back to work and make my mark. Unfortunately, I feel like I am totally falling apart and have absolutely no control over my emotions. How can I be so successfull at something as hard as getting your toddler thru totally intense chemo as a happy well adjusted great kid and not even be able to do a job that I could have totally done before practically in my sleep. My psychiatrist has put me on medical leave for 2 weeks to try to find some combination of medication that will allow me to handle work. I have no idea what in the world I am going to do for 2 whole weeks with Holden in daycare. I feel like I am going to be bored out of my stinking mind but the way work is going I am finding it almost impossible to deal with any situation where there is any amount of tension. Instead of being able to tell people in a professional way that I think they are off base I start crying and then I can say nothing. WHAT GIVES!!!!!!! And of course the husband appears to be doing fine. What the hell is wrong with me?

A typically atypical week in the life of.......

We had to go to the children's cancer clinic three times this week. The first day was our normal clinic visit for scheduled chemo although this week we also had to get platelets and blood. Platelets for the bruising and blood for anaemia. My son, I think I will refer to him from now on as little cutie (LC), had an allergic reaction to the platelets, which is apparently "very" common, but it was his first reaction. It scared the crap out of me. LC was sleeping in my lap when I noticed his eyelids and around his eyes were swollen. Then he began coughing and waking up, my husband was out of the room at the moment and Holden was connected via his port to the pump stand, I was totally freaking out in my head. When my husband came back into the room he immediately got the nurse who immediately got the doctor. They gave him more benadryl and a steroid, which thankfully did the trick. Just in case someone happens to read this who isn't familiar with getting blood products, you always take a dose of tylenol and benadryl. Anyway, during this episode I started feeling hot and nauseous, I had to get up and go to the restroom where I dry heaved and put cold water soaked paper towels on my neck. I vagled, which means my blood pressure dropped quickly and I was on the verge of passing out. This is the third time this has happened to me since LC was diagnosed. I hate it, it makes me feel so week and like I am trying to make this about me. Oh well... The second day we went to the clinic for blood and chemo, LC actually went home with his port accessed. The third day we went in just to check his counts which weren't great, his platelets had gotten down to a low of 11,000, which is why he was bruising like crazy, and since he had an allergic reaction he only got half of the platelets he needed so his platelets were only around 30,000 by our end of the week visit. The visit itself was really nice, I took him alone which gave me needed confidence after the other incident. We saw the little girl who was diagnosed the same weekend as LC with the same thing, Tcell ALL. I got to talk to her mom a little which is really nice because our little cancer patients are getting exactly the same treatment and are almost the same schedule.

The one good thing about going to the clinic often is that LC is really getting used to all of the people. Another thing that probably is not apparent to those on the outside is 99% of the time we go to the clinic we must first stop by the lab and have blood drawn so we know LC's counts before we see the doctor. Well LC used to always cry whenever he went to the lab but the last two or three times we have gone to the lab he has laughed and talked to the phlebotomist! This makes us so so happy. LC was always a really outgoing little guy and finally he feels secure enough to be outgoing with all of this stuff happening to him. We noticed a marked change in his behaviour when his counts were too low for him to get his weekly chemo and he got a week off. He's like a different kid, like the kid he was before he was diagnosed. I love it. In a couple of weeks we will be starting the next phase of treatment, which is two months with 4 days inpatient treatment every other week. I can't wait for all of the hospital nurses to see Holden doing so well. And of course I have a couple of favorite nurses who I can't wait to see again. The floor of the hospital where we stay is only eight beds, it has a mini kitchen (fridge, sink and microwave), a family room (couches, table, TV, and computer), a play area (lots of toys, books, video games, and computer) a laundry room (washer, dryer, and detergent at no cost to us) and it is expected that one or both parents will be staying for the entire visit.

I feel I must complain a little so here it is.....
I have been working part time mostly from home with the understanding that I am not working on any tight deadlines. Well I get an email from someone, who didn't address me by name and didn't ask how things were going but just wanted to ask me when I was going to have such and such done. Of course, I know I should all ready have such and such done but this was a really hard week for me and I had all ready planned a meeting with the main person I am working with on the project for Monday of next week. I know people should expect something from me but I don't understand how you can not ask how things are going, after all I do have a very small child (not even 3 yrs old) who has a very aggressive form of leukemia and he is going thru weekly chemo treatments. Anyway, this super short impersonal email made me feel all sorts of inadequate and a little angry.

Bruises

Yesterday we noticed many bruises on our little guy. Unexplainable bruising is what sent us to the doctor the day Holden was diagnosed with Leukemia. The bruising went away after his first platelet transfusion and he hasn't had any until now. I noticed a bruise on his forearm last week but it seemed like he could have gotten it from a fall or that it could be explained in some way. I try not to get stressed out about all of these things over which I have no control because when I get really stressed I tend to become immobilized.

I imagine that I am not the only parent of a child with leukemia whose greatest fear is that the cancer is no longer responding to the treatment. The treatment we are getting currently, weekly multiple doses of chemotherapy, is hard but it is not the hardest possible treatment. I try hard to not let my mind go there, maybe too hard but he is my precious baby and I just cannot imagine .........

My in laws are so inappropriate

We have a website for our son, a wonderful free site for people who have or are dealing with a critical illness. My husband usually updates the site after treatment day, which was yesterday. And my in laws (you know my mother in law who hates me 4 no reason) usually sign it after these updates. So the last time my mother in law signed the guestbook she conveniently forgot to include me in all the praise she was giving my husband for becoming an expert at giving shots etc.... Do these people think I don't notice the snubs.

So I am one of those people who sorta forgives but never forgets.

One example of previous rudeness: The last time we got together with the in laws for Christmas, my toddler's 1st Christmas, his parents said we were not going to exchange gifts. What they really meant was we are not going to get our daughter in law who we hate 4 no reason a gift but we will get gifts for everyone else!! And even though I obviously don't get along with this woman who snubs me every freakin chance she gets that Christmas I actually made her a bracelet and earrings (I was totally into making jewelry at the time because I am a true ADHD crafter). Now I would think here the mother in law would think, wow I totally didn't get her anything, even though I got my son and grandson stuff, and here she made me this nice bracelet and earrings, maybe she's not so bad after all. Of course that is not at all what happened. What gives?

And ok so they wanted to make sure I knew they didn't like me, but that was before I had a child with leukemia, you would think a person would have some compassion but that is so not the case as you will see.

So my husband's dad has shingles, which his mom totally tried to guilt my husband into believing the shingles were brought on by the stress he had created in their lives by being married to a woman they hate 4 no reason. Anyway, during the first week after we found out our son had leukemia we were in the hospital for more than a week during which my mom and my husband's parents were staying at our house. During a time when my mom was at the hospital I mentioned that my father in law had shingles and my mom was like well you know that is highly contagious and out in cali they quarantine people with shingles. So we spoke to the doctors about it and my husband and I decided we were not comfortable with his dad coming back up to the floor. Let me explain about the floor we were on, this floor has only 8 beds and it is exclusively for children who have cancer or other blood disorders, most of these kids are getting chemo and are imunocompromised. But when my husband had this conversation with his parents his mom was like, well we will just leave then and of course made it all about her and her husband. I was shocked and appalled. So my mom, who is a nurse, tried to sit down and have a conversation with them about this situation back at our house, like how you can help out even without coming to the hospital and things of that nature. Well she was very unpleasantly surprised by my mother in law's reaction. Which went a little something like this,Well we are not that kind of people, We haven't even been talking to them in a year and we had to cancel plans to come down here, yada yada and more ugliness!!

So my mother probably shouldn't have told me what my mother in law said but what's done is done.

And so it never ends, this woman snubs me whenever she gets the chance, maybe she doesn't know she's doing it but either way it still gets to me. And how can she not know? Ugh it is hard when your mother in law hates you 4 no reason.

clinic day complaints

Today we are at the children's cancer clinic. We thought we new exactly what to expect, however we had a different doctor today than last time and he doesn't agree with the other doctors. There are only 5 doctors in this practice, I think they should decide to agree and tell us only the course of action they have agreed upon! This is stressful and I like to concentrate on making it as easy for my son as possible, I depend on the doctors to tell me wether a treatment should be inpatient or outpatient. We need to know before we leave the house so we can properly prepare!

Ah clinic day

Stream of consciousness

You know, before my son was diagnosed with cancer I think I had forgotten (or maybe I never really knew) what was important in life. Just in case you were wondering, it is not trying to figure out why your mother in law hates you for no reason!

I have to say that after watching your beautiful toddler puking uncontrollably from a chemo treatment your perspective is forever changed. You really know what it is to feel completely helpless.

Tomorrow is another trip to the children's cancer clinic, followed by 2 or 3 days of giving my precious son chemo injections in his tiny little legs. But better me or my husband than some stranger.

You know, we were well into the 2nd month of treatment before I could form the thought (much less vocalize) that this could be what kills my baby. Since that moment I have been unable to be away from him for more than a few hours. And to think before this I would drop him off at my sister's house 5 days a week and not see him again for about 10hrs. I don't think this made me a bad mom but like I said your perspective on life is forever changed.

Today, I got up at 5amish because the littlest cutest cancer patient was hungry, I nursed him off and on whenever he requested mamma milk, brought him whatever he wanted from the kitchen, I rubbed his head as much as he would let me, told him I loved him too many times to remember, and let him wear his hulk shirt even though he slept in it, man do I love days like these.

And although I think most people think you ask why something like this happened to me, I never have, I have tried to use this as an opportunity to be the best mom any littlest cutest cancer survivor ever had! Because I think what is really important in life is to take every challenge you are given and try to figure out how to use it as an opportunity to be better than you ever thought you could be.

And that concludes my Doogie Howser moment for today.

Getting Started

Well, my small child was diagnosed with Leukemia January 23,2009. About day 2 I realized that my husband and I could not do this alone, we needed help. Neither of us had been talking to our parents for the past year or so (because my mom ain't right and because my mother in law hates me for no reason) but I called my mom and told my husband he should call his parents.

My mom, after initially trying to make it all about herself, made it about me and got the down here from CA as soon as she could.

My husband's parents were complete jerks. My husband was so choked up that he couldn't even get the words out so I took the phone and told his mom that our precious little toddler had leukemia. And his mother started to ask ridiculous questions like "Well Annie don't you just wonder where this comes from, is it a virus, yada yada like that", no, oh my god I am so sorry is there anything we can do for you, nothing. Finally after my husband practically begged them they came from Charleston to Greenville, about a 3hr drive. And of course once they were here they were anything but helpful!! Their kind of help we DON'T NEED! They are the kind of parents who wonder what their kids have done to help them out lately instead of what they could do to help their kids out.

Like I said, I have a toddler with Leukemia and I'm trying to keep working so I don't have a lot of time but my mother in law seriously hates me for no reason and she let that be an excuse to not be there for her son when he needed her the most!