*sound of a cat puking a hair ball*

The log jam has reached capacity, the dam has cracked. Which has, once again, led me to scurry to the keyboard to pound out words.

We had encounter today. One that I have been fearing, yet knew it was bound to happen. Without taking too much time and energy to set up the scene, after having a bit of a melt down, Gregory was on the receiving end of, “Yes, you have been through a lot. Yet you are now six. You need to be doing what other six year olds are expected to do. Work.”
I understand where this came from. It doesn’t make my heart hurt any less. Yes, chronologically he is six. Nearly seven. Those numbers mean jack-crap for his development. Now, please do not go off half cocked over this encounter. There is no blame or anger to be expressed. It is what it is and it is a reality of how misunderstood his treatment and life after treatment is. This is the perfect example of what I have been trying to prepare myself for as we get ready for him to enter the first grade and public school. There is an element of ‘tough love’ that is going to come with this next phase of his life and learning. I know that he will not receive Gregory Tailored care and education. As my dear friend pointed out, those of us that are in the thick of this life post a diagnosis of childhood cancer, we don’t know what tomorrow will bring. We don’t know if Gregory will survive to the age of 35, 19 or even 10. The fact that he is here now is an unexpected outcome. I also do not know what it feels like to be living in Gregory’s body on a daily basis. Which can change from moment to moment. 
Over the last few months, I’ve been preparing myself and Gregory’s elementary school for his entry this fall. I have no idea what this is going to do to his body and how he will cope. He still has a dysfunctional immune system. He is not able to create antibodies that recognize illnesses and mount a defense when his body encounters an illness. Any illness. One of the scariest things is chicken pox. This past late fall/winter we have been avoiding chicken pox like crazy. There has been a truckload of it in our community. Should Gregory contract chicken pox, it is truly life threatening. Also? He is not able to develop immunity to it. Which means he can catch it again and again. I did not keep track, but he missed 5-6 weeks of school this year, avoiding chicken pox. Which is our only course of action with any infectious diseases. He is currently receiving donor anti-bodies (IVIgG) every four weeks, While this gives him good coverage, it is not complete. He is now 2.5 years post transplant and there is no way of knowing if this is temporary or a permanent state of his immune system. Only time will tell. So, when it comes to thinking about his education and what it might look like for him next year???? A school with 400 first through sixth graders, a full day of school, the excess noise in the classroom (with his high frequency hearing loss) and the toll this will take on his not fully functional little body? Oh yeah… he’s still growing and developing, at the same time (we hope), too! That is a lot for one little body to process. 
And then….. he’s been having gut GVH symptoms and a faint spidery rash on his cheeks, which is probably also GVH. His gut GVH symptoms manifest with nausea, frequent loose stools and his G tube site has been painful. When I think about what it must feel like to have a constantly irritated gut, I just cannot wrap my head around it. As long as he tolerates his symptoms and they are manageable, there is no treatment. The only treatment is prednisone and immune suppressants. Those are not even considered until his symptoms are fairly severe. 
Do you know how exhausting this life with Survivorship is? Holy Hannah. We are also gearing up for Gregory’s annual long-term follow up (LTFU) appointments in Seattle. He will have his hearing re-tested next week, dental exam and panoramic x-ray the end of March, an eye exam to check his cataracts and we will be looking at his CD19 & CD4 (anti-body) levels to determine if we will be holding his IVIgG for the recommended 8 weeks prior to LTFU. Donor IgG has a ‘life’ of about 8 weeks in the body. In order to get an accurate status of Gregory’s antibodies, we need to hold any infusions for 8 weeks prior to testing. Quite frankly, I do not think his immune response has changed since his last LTFU in June of ’11. Holding his IVIgG only puts him at risk of getting sick. Which is exactly what happened during our last LTFU visit. 
Among all of this chaos, we are preparing for a trip to New York City in late April. We will be meeting Gregory’s donor. There are many details that go along with this that I am not at liberty to publicly disclose. Suffice it to say, we have known about this since November and I am just now mentioning it. I will share all the details when the time is right. (See how I snuck that exciting piece of information deep in a whiny post!)
What this all boils down to: Every stinkin’ day of Gregory’s life is so complicated. Every stinkin’ day is amazing. Every stinkin’ day is exhausting and emotion laden. Not every moment, but there is a heaviness to every day. Be gentle with him. The fact that he is still around, three years after diagnosis, is a shining light. The fact that we are not completely broken is miraculous. The fact that we have LIFE is never lost on me. Ever. 
Loving you….
Mindi The Magnificent

ETA: Just to be crystal clear. I am acutely aware of the fact that we are bittersweetly BLESSED to be dealing with these issues. Every time I post a ‘bitch session’ I cringe. Knowing full well that I have friends who’s children have died and they are reading my words. I never forget. 


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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13 Responses to *sound of a cat puking a hair ball*

  1. Jess says:

    SO, I have to ask, with the risks so high, and the situation so complicated, and the hoops to jump through to make it all work so numerous… why not homeschool? You totally could do it. And it would allow every precious moment of his life to be spent how YOU and HE decide. He could do homeschool co-op where he could be with other kids, but it would be on your terms. If you are planning to go back to work, that's another story. Well, actually it's workable depending on how dedicated you are. But I get that.Have you considered it?

  2. Mindi Finch says:

    Oh, Jess. This is such a loaded question. The honest truth is that I am just not cut out to home school. As perfect as that may be for his immune system, I am just not equipped to take that on.Not only that, but eventually Gregory will need to enter the 'real' world. I would rather do it now, when he is younger, than later. This may be the way his life is and I believe it is better to learn, now, what life looks like. Returning to work, outside of the home, is just not in the cards. Nor do I think it will be in the future. I would like to work from home, though. Not exactly sure what will transpire, but it's out there and if/when it happens, I selfishly would like a few hours during the day to work in quiet. Home schooling sounds fabulous and I salute moms, like yourself, that can pull it off.

  3. Staci says:

    I have to disagree with you on your ability to homeschool. Of course you could do it! It is within you. There are an enormous amount of support systems and co-ops that you could join where you will be with people who share your same interest in what is best for their children.There is plenty of opportunity for socialization and school has little to do with education. There are hundreds of online and virtual classes he could take if teaching him is worrying you. And nothing about public school prepares a child for the real world. If it were the real world would he be hanging out with 400 or so strangers everyday grouped according to age and not interest? In the real world kids learn how to function within society and everyday life. Public schooling does not prepare for this the way that homeschooling can. Also, I hear you talk a lot about how all children need to be vaccinated to protect your child. But your rights don't supersede the rights of parents who chose not to, and vice verse. So if you chose to put your child in a school system you cannot expect that all parents share your same concern because their first concern is what they feel is best for their children and that inlcudes them having the right not to vaccinate. My child does have a compromised immune system too (not cancer of course, but life threatening? Absolutely!) and I wouldn't want him to be public schooled because the burden of responsibility of his health as well as his education is ultimately on me. Not trying to sound preachy, just want you to know that if you consider it you would succeed and it would make your roads and obstacles much easier to maneuver around.

  4. Mindi Finch says:

    Staci~ I failed to mention that our kids are Montessori educated. We are incredibly lucky to have public Montessori in our district and gained placement in the program through the lottery with our eldest. I absolutely love the program. There is so much that will nurture and embrace Gregory's unique development. Our eldest has Asperger's and he has flourished in middle school, post a pre-school and elementary Montessori schooling. I am completely open to adjustments, should this turn out to not be a good fit for Gregory. I need to at least give it a try and go from there.Vaccinations. *sigh* Another incredibly touchy subject. I have tried to talk about vaccinations and our odyssey and how they impact Gregory's health. I do not, will not, ever, pass judgement on anyone's personal choice when it comes to vaccinations. I take full responsibility for Gregory's lack of vaccinations and what that means for his school attendance. Even before Gregory was diagnosed I ran with an 'alternative' crowd. So many of my friends and community members have very unique vaccination scenarios. I do not expect or ask that every child Gregory is exposed to be vaccinated. That is a personal choice. The only thing I do ask for is awareness and notification. At the beginning of each school year I write a letter to his fellow classmates' families and explain Gregory's situation. I ask that the school and/or I be notified at the first knowledge of anything like Chicken Pox. While it is not a perfect plan of action, I understand that unless you've lived a similar situation, it is really hard to grasp how important this is to Gregory's health. This has been a year of learning and adjusting. It's been a trial run for next year. Hopefully my reactions will be tempered and my heart will be better equipped to handle what comes. I've been struggling with surrendering to the fact that Gregory's immune system is not functioning. Kinda obvious, huh? Working on it.I've probably put way too much out here, but I know a few Staci's and am not sure which one this is!

  5. Mindi Finch says:

    Darn it, that's what I thought! *shrug* Which means I went into WAY too much detail! 'Cause you've been with me every step of the way. Love you, lady.

  6. Staci says:

    LOL, yes I have and I'm glad that I knew you before everything. You were already a tough woman and I wanted you to know that even if it does come down to looking like homeschooling *someday* is the best scenario, you WOULD be able to do it and you would excll at it like everything else ❤

  7. Karla says:

    Well, hi. Good words as usual, my friend. (All of my words are stuck in my head and have been for too long, so I envy your cracked dam…)You amaze me. Gregory AMAZES me. His is an arduous journey, and he is lucky to have you helping him negotiate the post-bmt/GVH world he must travel.someday I'm may move west again. And MAYBE I'll actually hug you in person. That would be GRAND. For now… just more virtual ones on the way.~k.

    • Hamidah says:

      Here’s how this system wkored for me. I got the free trial of Extreme Acai. Paid $ 3.95 for shipping. Then I loved the product and wanted to continue to use it, so I just keep reordering. I didn’t have any problems to speak of.Rather than that acai-aSlim product you are talking about, I recommend you get a free trial of Extreme Acai from the source link below. This is the product I use, and honestly I feel better every day. If you don’t like it, just don’t reorder it.Now let me tell you why I recommend Extreme Acai over all other acai supplements Firstly, Extreme Acai is a 100% acai capsule (pill) type supplement. Capsules are superior to juices, cleansers, and detoxifiers. Juices are diluted and are filled with sugar, cleansers and detox supplements tend to promote abdominal discomfort, and they are all way overpriced. Most likely you will only find sugar filled acai juice supplements at your local GNC.I attempted this past weekend to find a good acai supplement at GNC, Vitamin World, Hannafords, and Shaws, but I was unable to find something that was cheap, high quality, and not filled with sugar and other fillers. I am going to keep getting Extreme Acai for now.Secondly, Extreme Acai ranks in the top 3, usually at #1, of all acai supplements in most acai product polls that I’ve found online.How good is acai for your health?Acai berries have far more antioxidants than any other fruit. Even more than blueberries! Besides that, the nutrients in acai berry supplements help many other diseases and maladies, from diabetes to arthritis to blood clotting. It really is a worthwhile supplement to add to your daily nutrition.Acai can also be a great weight loss aid. The berry’s natural concoction of essential fatty acids, fiber, phytosterols and amino acids work together to help your body burn fat more efficiently, process food more quickly and shed the unwanted pounds that you’d like to lose.The fatty acids and amino acids aid in both muscle development and proper digestion, both of which are essential to fat loss. The fiber helps your body to move food out of your system quicker and also to help you feel full, as do fatty acids. Phytosterols help fortify your digestive tract, moving waste materials out and absorbing nutrients more efficiently.Acai has great anti-aging benefits, will cleanse and detoxify you, and has destroyed cancer cells in recent studies. You really can’t go wrong by adding an acai supplement to your daily vitamin regimen. So far it’s working for me by helping my digestion, curbing my appetite, and by giving me more energy each day I don’t even get sleepy around 3pm anymore.Remember, just stick with a regular 100% acai supplement in capsule form like Extreme Acai, you can try the free trial at the source link below.

    • levitra says:

      Back in school, I’m doing so much learning.

  8. Amy Patrick says:

    wonderful insight – thank you for being 'Our Voice'. Yes, 'Our' voice even though Ryan has 'peaced-out' as The Daughter puts it…. the reality of how exhausting survivorship is/was/will always be is still a vastly unknown trauma of "A Cure".Never would I take away one day shared but knowing you understand and have put voice to our past lives brings this mom peace and a sense of sisterhood. Thank you – You are Magnificent!

  9. Joleen says:

    Hi, I can’t seem to be able to find your contact form/email.Would you be interested in a guest post for you blog? If you're interested get back to me at my email.Thanks,Joleen

  10. Mindi Finch says:

    Joleen~ I don't see a contact email for you or your blog address…Always open for possibilities.mindithemagnificent@gmail.com

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