First and foremost, an apology about the timing of blog updates. I planned on posting much more frequently. However the simple fact is I'm exhausted. That combined with the fact that I'm not sure how to describe the juxtaposition between how amazingly Avery is faring, and describe the intensity of the situation as it is. Most of you know I'm not lacking when it comes to describing things, and or my flair for details. But I shrug my shoulders when trying to describe how easily Avery has handled this and just how hard this has been. Avery has paid a price to be sure, but relative to the "expected" condition of a BMT recipient we experienced nothing of the norm. We are now told that the grave situation Avery came though February - March prepared her little body (not to mention 4 years of constant chemotherapy) though a conditioning of sorts, and prepared our minds for the worst yet to come. And hence, our days on the BMT floor were easy in comparison. I feel like nothing I have just said makes any sense, suffice it to say, thank God. Again I shake my head knowing how high our thresh hold has become for what is defined as a bad day because we have not had one in a long time. Now lets start with:
Avery Goes Home
Tuesday June 23rd, 2015 after 36 days in isolation Avery was discharged. The day was filled with an anticipation I have not felt since I was in grade school. The entire day I felt a relief and an anxious excitement brought forth only by: the last day of school and the kickoff of summer vacation. A day for every kid that once seemed like a lifetime away, was met by waking up one day and there it is greeting you. Of course if I was feeling this way you simply can imagine what Avery was like. In fact I have one better for you than your imagination. Watch this video; it says it all: (Avery Escapes!). Again, it is so conflicting to explain what those days were like. On one hand Avery came though that 36 days feeling so good the entire med team said it was remarkable. On the other hand I'll explain the difficulties below. The overwhelming majority of children experience an extreme reaction to the chemo protocol and the effects of bone marrow transplant. Not the case for Avery. Also we had been conditioned for set back after set back, which did not happen. Of corse that is not to say that we are not grateful, but when you are waiting for a shoe to drop you have a nervousness. Now for a description of our 36 days:
The Battles
"Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, an adverse effect of chemotherapy and radiotherapy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment". Avery has suffered from this with sores on in her mouth and on her tongue down her throat through her GI tract, and causes the digestive system to not operate.
Mucositis is largely the reason Avery cannot eat. She has been on intravenous nutrition since May 27th. While this is providing the sustenance she needs, it combined with the Mucositis is causing suffering in the worst way. There is quite a bit of incontinence. Her bottom has become raw with broken skin. This is causing her to be terrified to go to the bathroom, and it's very painful to clean her bottom. No only that, but because of the consistency of her potty its very hard to clean so it's quite an effort and takes a very long time due to the pain. Miserable. (at this writing Avery is still on IV nutrition and can't eat much due to the residual of this condition but the above is greatly improved or gone).
Medicines. Avery's oral medication has been very difficult to take due to the mouth sores again from Mucositis. That in addition to the fact that her taste buds are completely awry. GROSS she yells out. Now add an empty stomach which is vomiting bile several times over 24 hours. So it's difficult to give the medicine in the first place then we wait to see if it gets puked out. In which case we have to start over. But we have learned to introduce things into the stomach very gently, slowly, patiently. more recent updates under "Home care".
Mouth Care - again very important that the mouth does not develop infection and as an extension of what we said above, brushing teeth and cleaning her mouth is extremely difficult. remember the grizzly bear reference from the previous blog post. It's worse.
Blood transfusions daily. We learned that due to Avery's condition that after all these years a red blood transfusion was met with guaranteed nausea. When your kid detoxifies chemo and or is nauseous for a host of reasons it really hurts you. However, over this series of events Avery has become quite insensitive to the act of vomiting. It's become business to her, and that has afforded us some relief. We have learned that it appears that Avery's new cells are attacking the transfused platelets causing the need for platelet transfusions daily. they tell us they will work with red cross to get a closer match of the new cells and the platelet blood type. We have now learned weeks later that this has been helpful, and despite needing platelets daily her low count is higher than the previous day and so we may be rounding the corner here on this issue.
The Drugs. Wow, the drugs.
1) Immunosuppressant
2) Drugs to prevent the rejection of the BMT transplant
3) Anti nausea and pain meds. which was a combination of 4 drugs used in concert; constant, 24/7
4) various meds to keep organs functioning properly
5) anti viral, anti anxiety, blah blah blah blah
I mean think of the side effects and interactions. my god. really. You have seen pictures of the "IV pole" with like 7-8 pumps going. and yup they were all used all day.
Psych Management
This was absolutely critical. One thing we have learned about managing a 6 year old in the hospital is what to do to occupy her mind and time. Every parent can relate to one universal thing that makes every kid a kid; "are we there yet". And despite all best efforts it's hard to get a kid to understand no, hell no we're not there yet, and OMG, please don't go nuts in the back of the car. Imagine that back of the car experience is like trudging through a puddle of cold water 2 inches deep in tennis shoes. Now take a kid who's been bed ridden for weeks at a crack intermittently for years, and now imagine being dropped into the Atlantic ocean in freezing water with huge waves. But with the extremity of the bone marrow transplant process, we armed ourselves with a daily schedule of activities. And I dare say we have staved off the stir craziness. See the picture below for the secrets. And yes, absolutely they are in order of priority. We designed this with two things in mind. 1) activities that would be interactive and stimulating with an angle of education and/or experience (school work was interlaced but not specifically itemized) and 2) to swim with the current and offer what every kid absolutely wants to do but keep those as a last resort. Enter iPad games and Netflix. If you don't use that sparingly the most desired crown jewel of what a kid wants to do will loose its allure. It in itself can become boring and now you are screwed. Now check this out:
"I'm stressed so I get my trumpet out". This is a quote from the video I implore you to watch. It is a very short video which will impress upon you one of the most indisputable facts of life. I saw this many years ago and at that time, I said to myself "never forget this; someday this will save me. Someday when I'm so overwhelmed this will keep my head above water". When life rips your face off, or if you have a really bad day and you need to reach for something music will always be there. The video itself is a gift. A gift that I have received and I hope will make a searing impression upon you for that day when you are down, feeling like crap, you call your friends to cheer you up, and no ones around. what do you do? You listen to your favorite music. It will absolutely lift your spirits. Never forget this. Watch the video here: (http://www.wimp.com/remarkableexperience/)
We have filled the room with music countless times and it has contributed meaningfully to Avery's comfort. "The power of music". Jack, thank you for your service to our country, thank you for helping us as parents aid our Daughter by remembering what you learned at such an extreme time in our life. Thank you. Watch disco: https://www.youtube.com/watch?v=110KCl0iyMU&feature=youtu.be
The War
Avery's Transplant is right on track. Her Donor cells are engrafting and we have no sings of graft versus host disease. However, we are no where near out of the woods on this. Again Avery's Donor cells are now the boss. They look around at the body and consider it foreign. The science is for those Donor cells to see the cancer cells identify them as foreign and kill them. We have however learned that while we are fortunate to have the 6/6 match because this minimizes the probability of graft versus host disease, it can too closely recognize a compatibility with the cancer cells. more on this later. But we have had our first bone marrow biopsy and we only saw "Donor cells", no sign of leukemia cells. This is a good sign at the early stages of a very long wait and see period which will last 2 years.
A full time job X2
For several days before discharge we had meeting after meeting. Pharmacy team, nutrition team, training meetings for administering her interventions nutrition, emergency home procedures, discussions about the scheduling and administration of her home meds of which there are groups of 4 times per day. because of the intensity and the distraction of these meetings something did not dawn on us. and this is yet another point about why cancer is a battle and why it's so excruciatingly hard. Upon discharge we did not realize, we did not give any thought to the fact that we, Kristina and I would become the medical staff at home. The Nurses, the Aids, the staff that makes this all possible. This combined what we have experienced before. And that is after an absolute marathon of a hospital stay what follows is absolutely indescribable. When you get home the decompression is staggering. The stress and pressure mentally and physically all gets expressed in a rush of relief which is brought forth by the safety and comfort of your own home. ah ah ah, not so fast. No not this time like when we were released in March after 32 days. No. Now we have to administer critical drugs 4 times per day, and hook up IV meds and nutrition which in themselves last over 16 hours. Due to the timing of these meds, we are routinely getting to bed between 11-12PM. Only to get up around 3 am to help Avery with vomiting and or toileting issues; repeat again at 5:00am. 8:00am start the process over. Along with the 24/7 medicine schedule, Avery is still required to go to the clinic everyday for checkups, and likely blood transfusions, etc. which takes up a good portion of the remainder of the day. At the clinic, we check in, get blood drawn, and talk to the medical team about the plan, which is at least 1.5 hours then add additional time for administering blood products or other IV meds Avery needs. So while it is nice to be at home, I dare say it was easier for us to be at the hospital. Exhaustion? => Indescribable. Knowing what tomorrow looks like, huh, that is a luxury reserved for way down the road. People ask me frequently “you did an Ironman? Isn’t that crazy hard?” To which I respectfully answer, “no, no, no, battling cancer, that’s hard”.
The Pictures:
Kristina and Avery waiting for a chest CT
The Med Team in their morning visit. Gowned due to potential infection contagion.
Avery received countless cards, notes, and artwork from students at her school St. Ambrose of Woodbury
Joan, giving us a 4 hour training on emergency procedures, preparing drugs, coordinating the administration of IV drugs and nutrition
Father’s day. The first day Avery was “unhooked” and was given permission to leave the BMT floor.
Encouraging messages from nurses, aids, volunteers and guests.
A picture of what we start and manage for 16 hours at home every day.
A reunion of Avery and The Chopper Dog.