Transfusions

The last couple of months have been pretty crazy around here. Carter has had a handful of hospital stays, a few blood transfusions, and six platelet transfusions. He is in pretty rough shape these days, but still wants to play like every other 5 year old boy.(which would include jumping down several stairs, wrestling his sister, riding his bike without his helmet….ect..) I thought I knew what it meant to be concerned for the safety of my children, but when you have a rambunctious little boy who insits on acting like he is a le par core expert, who also happens to have no blood clotting (and life saving) platelets, now that is nerve racking!
Carter has just finished the first ‘sub-phase’ of the second phase of his treatment called Consolidation. There are four 8 week sub-phases in phase two. The one he will be starting next is the second of them. It is called Interm Matinence. It will consist of four hospital admissions for 3 to 5 days each. He will go in every other Tuesday to receive high dose Methotrexate in spinal taps and IV infusions. He has to stay in until his body has cleared enough of the chemothrapy to go home. The doctors need to make sure it leaves his body at the appropriate rate. Too fast and it won’t do its job. Too slow and it could be damaging to his liver and kidneys. The nurses can adjust the rate of his IVs to make sure he flushes it just right.
I am crossing my fingers that we can avoid too many transfusions of any kind throught this phase. Carter had a platelet transfusion for the first time back in April and it went prefectly smooth. Then he had another one two weeks ago and had a very serious and severe allergic reaction. He started to cough in his sleep and toss and turn a little bit. I ignored it for a couple of minutes, because really, who pays attention to every single cough a kid has? His IV pole beeped because it needed to be plugged in and as I walked around the other side of the bed I noticed he had a really red nose and some hives on the side of his head, and then all the sudden it hit me! He was having an allergic reaction! With in about a minute, he was being poked in the thigh with an epi pen, and loaded full of hydrocortisone and benadryl and surrounded by 5 nurses, the doctor and a child life specialist. It was pretty intense. His next transfusion was a similar story. They tried giving him hydrocortisone and benaryl first, to see if he could tolerate them that way, but no dice. So from now on they will have to give im washed paltelets. I don’t know exactly how that works, but what I do know is that it is very time and labor intensive, and very expensive. The blood center has to run the platelets through a series of processes that removes the plasma and some of the antigens. During that process, about half of the platelets are destroyed because the are so small and delicate. So they have to use more of them to give him a good dose. He hasn’t had any reactions to the two washed platelet transfusions so far, so that is a good sign. But there are a few negetives to the whole situation too. It takes several hours to wash them. So if he were to get low on them and have some sort of bleeding emergency he could be in big trouble. Also, they can only keep washed platlets for a few days, so the don’t like to wash them ahead of time. And once they have sent them to the hospital they have to use them within two hours. And then there is the hydrocortisone…. Because hydrocortisone is a steroid, it has been turning my cute little boy into a total crazy person. He reminds me of a teenaged girl most of the time. If you even so much as look at him wrong he has a meltdown. The other day he laid inside the big boat in the oncology units waiting room and drove everybody nuts while he cried for a good twenty minutes because I asked him to share a few of his peanut butter bites with a kid that was really really hungry. By his insane reaction, you would think I had asked him to cut off his right arm and let the dog chew on it for a couple of hours. I just have to say, thank goodness for nap time!! It saves my sanity on daily basis.

Back and Forth

Carter is in pretty good spirits today! He ought to be! He selpt in until 1:45! I told him he woke up just in time for nap time, which he didn’t think was very funny! He was very, very tired. We had a nine hour day at the outpatient clinc yesterday, then went home and had some dinner, and cleaned up, and then had to head in to the emergency room because he got a fever of 101. We got there around 9:00 and didn’t get our room in the oncology ward until around midnight. Its been a trying week and a half to say the least.

Port access not fun.

This week started with a bang. Carter had to get his port accessed for the first time while not under anesthesia and he was unimpressed to say the least!  He had 3 nurses trying to calm him down and hold him still to get the needle in and he still manged to throw a pretty good little punch my way! He get so worked up wondering how bad its going to hurt that he has a total melt down before they put it in.  What he hasn’t figured out yet, is that he is essentially numb.  They put lidocane on it for a half hour or so before the shot, and then spray it with a cold spray that adds a little extra numbing to an already numb little bit of skin. I suppose he’ll be savvy  to that one of these days.  But until then I might need to borrow my daughters sparring padding before going into the “jelly bean room”. ( The kids know when a nurse says the horrible awful words “the jelly bean room”, they’re probably going to get a poke at least.)

On Monday, Carter had to get a new medicine called Ara-c and another one called Cyclophosphamide. We had to stay at the hospital from 7am to 5:40 pm, so it was a very long day. Then the next morning we had be back at 10:30 for an injection.  And then another 10:30 appointment for an injection on Wednesday.  And finally Thursday we had to be back at 7am for another spinal tap and two more chemotherapies. He hasn’t had too many side effects this week though, so we are grateful for that.  He has had some pretty good spinal head aches today, but a little diet soda helps a lot.

We get to enjoy the same regimen next week. ………..yay………… ; )

Surgery for Port

Yesterday, March 8th, Carter had surgery to have a “port” put in his chest. It is a small button looking device that has a line coming off of it that goes into his heart. The biggest benefits having a port over a PICC line, is that it is under the skin and there are no open wounds where he could easily get an infection. (You can see one by going to curesearch.org and typing in ‘port a cath’ in the search box and scrolling down past the central line picture.) With the port Carter will also be able to swim and take a bath. Another benefit to the port, is the medication is being put directly into a large vessel and mixes in with the blood and enters the rest of the body very quickly. I am told, every child in the oncology ward gets a port eventually. To access his port, they stick a little bracket thing onto his chest and then poke a needle through the skin directly into the rubber on the top of the port. They give me numbing cream to put on him before we leave the house so by the time we get to Sacred Heart, his skin should be totally numb. He is still very nervous about the whole thing, since he was asleep the first time they accessed it. But I think after a few times of it being accessed he will understand that it will not hurt.
While Carter was under anesthesia yesterday, he also received another LP and dose of methotrexate. (A lumbar puncture and a chemo.) He was supposed to start a series of new chemo medicines that would have to be given consecutively for 4 days. And each day he would have to stay at the clinic and be monitored until his blood work was just right. They have to flush the chemo out of his body at a certain rate with IV fluids. If it leaves his body too fast, it will not do its job. If it leaves his body too slowly, it could damage his kidneys and liver. But when we were in the hospital yesterday, his counts were too low. So they will start the four day process on Monday instead.

Enjoy your weekend everyone!

carter!!

Carter has taken a liking to typing his name on anything with buttons or keys, so he has typed the title for us tonight!
As many of you know, Carter had a very important appointment with the doctor today. The hope was, that out of all of Carter’s bone marrow cells, less than .01% would be leukemia cells. When he was initially admitted into the hospital 80% of his bone marrow cells had been replaced by cancer cells, so .01% is a pretty lofty goal!
However, about 80% of the kids have reached that goal by the end of the first phase. Unfortunately Carter did not. Carter’s percentage of leukemia cells are at .04%. It seems like a very small number. But it has been shown that kids with numbers above the ideal .01% have a much higher risk of recurrence of the disease years after treatment is over, if they do not receive more aggressive chemotherapy during phase two. So al of this means that Carter is now considered to be in the high risk bracket. (HR-ALL) His chemo will now be more intense and 3 to 4 months longer than originally thought. He also may have to have radiation therapy at the end of the second phase. We really, really hope to avoid that! There are some nightmarish side effects that can happen with cranial radiation such as infertility, learning disorders, and secondary cancers to name a few.
When we spoke with Dr. Trobaugh this morning, she told us about a clinical study being reviewed right now in Seattle that may eliminate the need for radiation. So we are hoping that study has been reviewed and published by the time he gets to that part of treatment.

Nail Biting!

On Tuesday, Carter had another lumbar puncture and bone marrow aspirate and a dose of chemo (methotrexate) into his spine. This is a pretty important week around here, because the results of the BMA are pivotal in the next phase of his treatment. The most important test is being preformed this week to see if there are still leukemia cells in his marrow, despite all the treatment he has received so far. The test is called Minimal Residual Disease test or, MRD. They are hoping for a less than 0.01% of cancer cells in his marrow. If he is below 0.01%, he will still be considered AR-ALL (Adverage Risk ALL). If it is anything above that, he will then be considered High Risk ALL. Obviously the treatment is most intense with the high risk and the risk that the cancer will return when he is older is much higher. As of yesterday, phase one is over. We begin phase two next week. Carters doctor cannot tell us anything definitive yet, but a little birdy told us that she has said she is amazed at how well Carter is doing. Now that we are finished with phase one he is finished with the steroids for the most part too. He will have short bursts of them here and there, but nothing like the 28 days straight in the first phase. The swelling in his face is already starting to lessen, he has more energy and he is feeling a lot better than he has in quite a while! Dr. Trobaugh says it will take a few weeks for his appetite to slow down though! He had a diet soda this morning (doctor prescribed for spinal tap head aches) and as soon as the caffeine hit him he was almost like his old self again for a few hours, so it was a pretty good day.

Tight Rope

One of the bits of advice that has been given to me more than once is, “don’t spoil him rotten,  you will regret it later.”

On the flip side of the same coin, he is being asked to bear an incredible amount of stress and pain. Especially for a 5 year old.

He has a right, in my opinion, to just be plain grumpy and mad sometimes. We adults get that way right? Sometimes more often than we really should.  I feel completely stuck on the discipline high wire.  He woke up this morning with low blood sugar, starving and shaky.  He wanted Eggo waffles.  I told him he had to have something with a little more protein in it and he could probably have one for a snack later.  He came totally unglued! I could have told him I was a genie in a bottle and if he stopped screaming and asked for something I would grant any wish in the whole world and he wouldn’t have cared.  He did not want me near him, but if I left I screamed loud enough to get the attention of everyone in the house.  He was going completely nuts.  So his Daddy came in to save the day and get him something to eat and keep Mommy from going crazy.  But despite his calm demeanor and offerings of waffles if he calmed down a little bit, Carter still screamed.  I don’t want to get played by a very sharp five year old who is figuring out how to get the system to work for him.  But I also understand being shaky and cranky and just plain sick of all the crap!

If I step one toe to the left, I will most certainly fall off of my highwire  and plunge to my death.

If I step one to to the right, I wil lose my mind and jump off my highwire and plunge to my death.

Ahhhhrrrrgggg!

Well, now that I have brightened everybodys day…… I am going to go do some laundry.

Oh yes and Bob, HAPPY BIRTHDAY! love yer guts! Thanks for all your help this morning! : )

Quick note

I only have a second or two!  Carter is still doing pretty well.  He is really, really sleepy the last few days.  He has gained almost 6 pounds since we left the hospital.  For a kid who started out at almost 37 pounds, and extra 6 makes a huge difference. He looks like a whole different kid.  His cheeks are really big.  They are kissably cute!  But I think he is getting really annoyed that keep doing that!  He has another round of chemo tomorrow.  The chemo is called Vincristine and apparently it is made from periwinkles!  Makes me think twice about what I put in my flower beds! (I found out from my plant tag last year that geraniums have cyanide in them!)  Carter is getting a little weak from all the steroids and is having a hard time getting up the stairs or playing with his sister for very long.  But if the BMA (bone marrow aspirate) results turn out well next week, I hope they will be able to give him less harsh medicines in phase two. We’ll see. He is also a “Moody Judy”, as I like to call it in my house.  One minute is playing DS and happy as can be, the next he is getting super annoyed with me for not giving him more orange chicken!  Thank you to the mom who fulfilled his request for fried rice! He devoured it!

Getting into a whole new routine

When Dr. Trobaugh told us we might be able to take Carter home I wasn’t too happy.  I was thrilled for him…. but it felt kind of like taking home your first kid!  “What the hell do I do if something goes wrong?!?!?  You people actually trust me to do this??  What if I forget about it or sleep through its crying or can’t remember how to change its diaper?!’  The anxiety level before we left was insane. But I am pleased to report, so far, so good.  I haven’t had to call the oncology unit in the middle of the night yet. I have given him very dose of medicine on time.  I have flushed his picc line twice a day without fail.  I have taken a morning temp and evening temp everyday.  And I have checked his glucose every morning.

Please give me a moment to dust my shoulder off.

Alright, alright.  Enough bragging.

Carter is doing pretty well.  I would love to say he is doing great, but I am guessing there is no kid in the world who could be called ‘great’ on chemo.  He is in good spirits, but the side effects of all of his meds make him a little bit off.  For starters, his little tummy is not so little anymore.  It is so swollen he can’t put on his own shoes!  His cheeks are pretty swollen too.  Side effects of the steroids.  His feet get ‘pokies’ in them sometimes.  The way he describes it, sounds to me like when your feet go to sleep.  I guess what you would call the pins and needles feeling. That doesn’t happen very often though. Sometimes he gets a bit nauseous, but there are a few medicines we can give him that take that away pretty quickly.  Those ones make him pretty sleepy though.  And his hair is starting to go. That is a lot harder for me too see than I thought it would be.  It makes it a lot harder to stay positive about the whole situation.  I just keep trying to tell myself ‘it’s just hair’.  But the most prominent side effect so far is his appetite!  Dr. Trobaugh had used the word ravenous to describe what it would be like, and she was totally right about that!!  He has come in at 3:00 am to get me up to make him something to eat because he just couldn’t wait until morning!  That same morning at 6:38 am, he got up with his daddy and had some more breakfast.  Then, got up with his sister and had more breakfast at 8:00 am! He eats ALL DAY LONG!! He follows me around and begs for foods, like bean burritos, gold fish crackers, crunchy tacos, pizza (digorno specifically), and chips.  It feels like we are living with several pregnant women.  I don’t know why exactly, but something about the steroids causes kids to crave spicy and salty foods. Oh, and hotdogs! That is another one he begs for.  He loves pigs in a blanket and can’t get enough of them. I am so thankful for the people from Carter’s preschool who have been bringing us dinners for several days now!  It gives me an hour or two out of the kitchen!

All in all, things are alright.  Bob and I have seen so many families during our time in the hopsital that have much bigger mountains to climb.  And I know the prayers are still coming our way.  So we will do our best to keep smiling!

Go home and hug your babies!  You will be glad you did!

Going home!!

Well folks we made it through the first hurdle. On Thursday, Dr. Trobaugh told us that Carter’s blood counts were looking good! (For a chemo patient anyway. Normal white cells for you and me would be in the 4,000 to 6,000 range, but Carter’s at last count were 604. They are happy with anything above 500.) She told us if Carter would take his medicine via mouth rather than IV she would let him go home. And to my surprise, he did it!! The steroids and one of the antibiotic are just completely foul. So, being a realist, and knowing my 5 year old, I thought we were staying there indefinitely. But here we are sitting at our house and feeling pretty triumphant! I would love to keep writing, but I have to go to town and pick up food for Blox, the lonely back yard lab. He has been almost totally neglected since all this started. I know I have been sporadic with my posts, but now that I am home I hope to get better at it. I am making no promises however. I will try to type some more tonight about what the plans are for the next few weeks.