Saturday, May 31, 2008

Alli's 'Mama bear' instinct kicks in!

Friday morning, Matt was still terribly exhausted and not eating anything. I called Oncology first thing Friday morning and by Friday afternoon things had been arranged for us to receive supplies (more fluids and anti-nausea meds), and a home health nurse had been assigned to come draw more labs - a BMP (electrolytes). I sort of felt like all this was done to appease me. No one said or did anything to make me feel this way, I suppose, but Matt is on chemotherapy and how did I expect him to feel? Well, the BMP checks sodium, and his sodium was extremely low. That pesky sodium again! Low sodium is a new problem. Usually Matt's problem is high sodium. Oncology called Endocrinology and his Endo. doctor wanted Matt admitted (at Primary's) right away to get him stabilized.
Thankfully, by withholding his DDAVP for one night and not pushing fluids, he was stable by this afternoon. I am upset about several things, though.

1) I am grumpy at myself for not pushing harder when I 'felt' like
something was off. This is the biggest one. My friend Karen encouraged me to push to have him seen. I am always worried, though, about being 'that' parent who thinks she's a doctor and overreacts to things like (gasp) a child feeling crummy while on chemotherapy!

2) I am grumpy at Hem/Onc for not recognizing that in a child with DI
a BMP should be ordered right away if the child is not eating or
drinking and has these types of symptoms.

3) I am grumpy that Hem/Onc isn't familiar enough with my child's
case to catch this - I feel a lot of pressure to be the one to find
things like this, even though I have no medical training!

4) I am grumpy that the doctors don't seem to communicate with one
another at all - I am constantly relaying information from one
department to another, but I am not a doctor. I might be
misunderstanding, I might not remember perfectly what they said. I
feel like this should be their job - I am HIRING them to care for my
child, and I am having a hard time feeling like they are doing a good

5) I am REALLY angry at Hem/Onc because NO ONE, not a resident, not the Nurse Practitioner, not a doctor, not anyone came to examine him while he was inpatient! My husband, while going to get a soda, saw our Endocrinologist chewing out the Oncologist on call. Endo. was very angry that Matt's sodium had gotten so out of control before labs were ordered and he was contacted. The oncologist was right around the corner, but couldn't come check on Matt? Then we get a random instruction from the tech assigned to Matt (so not even the NURSE) who tells us that Matt should take his 'make-up' dose of chemo that he missed the night before. She said that the oncologist said 'the parents will know what to do.' Um, NO, we do not know what to do! Why don't you come in and tell us so we can ask questions and you can examine our child!

I think I am done venting, but I am just so frusterated with this whole process. I wish there was some sort of primer, "How to be the non-insane parent advocate for your child with cancer." Maybe there should be a magazine or something - "Cancer Kids", a magazine for parents of cancer patients! I truly am out of my element here, and I think that doctos forget that this isn't a natural process for parents and I, for one, have no CLUE how to do this 'right'!

Friday, May 30, 2008

Spring Sing

Well, Matt did make it to his 'Spring Sing' yesterday - but just barely! I went to the first part with him and then left to go to Will's first grade program. Warren stayed with Matt. It was HARD for Matt, and hard for us to watch. You could just tell that he didn't feel well, but he had wanted to go so badly. He made it through the program and then bolted to Warren and said, "Dad, can we go home, I don't feel very good". :-(

Today has been the same as the rest of the week. He has been terribly weak and terribly tired. I'm anxious to speak with Oncology tomorrow. He hasn't eaten anything all week and doesn't even have the strength to get out of bed. I've been searching online for ways to help kids cope with chemo, and they all seem to refer to the symptoms we've been seeing for the past 9 months - mild fatigue, food tasting 'off', etc.... He seems much worse than that and I think I'm going to push to have him seen tomorrow. They need to look at him and tell me these symptoms are "normal"!

Tuesday, May 27, 2008

Further confimation that we shouldn't go to the library!

Matthew has had a really rough couple of days. He has had a stomachache, been nauseated and unbelievably tired. He slept most of yesterday and has done the same today. We've had him on IV fluids to keep him hydrated but other than that he hasn't eaten anything. This morning I was really trying to help him think of something that sounded appetizing. Nothing has sounded good. I finally got him to eat a few spoonfuls of Cheerios, a bite of applesauce, and a teeny bit of plain noodles (his requests!) Oh, he also drank a little bit of Ensure mixed with milk.

This afternoon, he woke up and seemed to feel a bit better. I encouraged him to get up and dressed, hoping that would help him feel even better. He got up and changed and looked so much better I wondered if it would do him good to get out of the house for a few minutes. We decided to go to the library so he could get something to read (see post here, to remember why the library is a bad idea for us). Once inside the library, without any notice, Matthew began vomiting. Since it was so unexpected, he didn't have a chance to get his bag out of his pocket (he keeps a gallon sized Ziploc baggie in his pocket at all times so we are always prepared for this!) He threw up all over the young adult fiction section...... I felt so bad for him! We just left! I did stop at the front desk so I could tell them that he had thrown up. I also tried to explain that he is on chemotherapy so they didn't think I brought my sick kid out! They were so nice and said they would handle everything. Both Matt and I were pretty covered in vomit, but miraculously, the two books I had in my hands were perfectly clean! Once we got home, I hooked him back up to his IV and he went back to sleep. Poor Kid!
It is also the last week of school and while I know that nothing 'important' happens this week, I wish he didn't have to miss all the fun end of year activities. Tomorrow his class is putting on their end of year program and I know he doesn't want to miss it. We will be praying that he feels well enough by tomorrow afternoon to attend the program!

Thursday, May 22, 2008

Matt is (sort of) on CNN!!!

With the news of Senator Kennedy's brain tumor, there has been a lot of information on the news about brain tumor's, in general. Right now on CNN's ireport there is a section where you can put stories about brain tumor experiences. I posted one on Matt, and feel a little bit famous! :-)

I think it is important for people to know how frequently brain cancer occurs and that it isn't the hopeless diagnoses all the 'experts' are reporting! I refuse to believe that Matt isn't going to make a full recovery.

Wednesday, May 14, 2008


I am so thankful for my sweet little boys. I will be so sad when my mother's day gifts no longer consist of paper flowers and struggling little plants in paper cups. My boys give me their gifts with such earnest love and pride, it makes me cry every year. The four older ones each made me surprises at school. Here is a little video of them telling what they did.

When Will brought his wheat grass home Friday, he dropped it. He was just devastated! Luckily, Warren was able to help him salvage the plant and put it all back together. Then, on Mother's day, while Warren was helping organize the boys, Will dropped it two more times. It is truly a miracle that it still looks as good as it does!
And lest you think Jake was left out of the day's festivities, here is a photo proving he was here...... albeit sweetly asleep on Warren's chest.

Friday, May 09, 2008

Can you believe Jake is 6 months old?!?

Jake is cracking us up lately! It is so fun to watch babies personalities emerge. He is six months old today and he does so many things! It's amazing that so much change happens in only a few short months.
Jake now:
*Sits on his own.
*Eats some solid foods.
*Sleeps all night (7pm-7am) and takes 2 awesome naps a day.
*'Talks' to us all. He shrieks with joy which always thrills his big brothers.
*Grabs toys....... and anything else within his reach - we have to be careful!
*Drinks out of a sippy cup.
*Does the 'scooty bug'. This is him arching his back (while lying on his back), then pushing with his legs to scoot across the floor or his crib..... backwards.
*Wears 6-9 month clothes.
*Has two bottom teeth. He is my earliest teether, by far! My other babies didn't begin cutting teeth until 9 months. Jake is very advanced....... :-)
*Smiles at everyone. He is very social and whenever we are out, people can't help but comment on his sunny personality.
*Is very attached to his 'lovey'. It's this little bunny, but the body is this super soft satin on one side/fuzzy on the other little blanket. It's hard to describe! As soon as he sees it, he gets all excited. He reaches for it with his right hand, while his left thumb goes into his mouth. He strokes the soft blanket part of the bunny and holds it close to his face while he falls asleep. Oh, look, I found a link - isn't the internet amazing! Jake's bunny blankie

Here is a video of Jake's new habit. Each time we give him a bite of food, we barely get the spoon out of his mouth when his thumb goes in! It makes a huge mess, but just proves how attached he is becoming to his little thumb!

One more video I can't resist! This is Jake this morning playing with one of his Christmas toys. His brothers are so thrilled with their new, interactive, little brother! Here, you can see Drew helping Jake.

Bathing Beauties

------------------------------Will, Drew, Nate------------------------------


On Tuesday, Matt was scheduled to begin his 2nd round of chemotherapy. His home health nurse, Julie, (one of our favorite people) came Monday evening to get his 'counts'. Tuesday morning we received them and his ANC was only 400. Remember, the ANC is the infection fighting cells in the blood. An ANC below 500 means Matt is neutropenic, and his body is less able to fight infection. To begin chemotherapy, his ANC has to be 1,200. When Matt began his first chemotherapy, 10 months ago, we were given the guidelines that ANC below 500 meant he had to remain housebound and no visitors were allowed. When I spoke with the nurse Tuesday morning I said, "so, Matt can't go to school, either, right?" The nurse said that actually he could go! I was surprised by this change in directive and learned that some oncologists will let the kids go to school until their ANC drops below 200! Because Matt's counts should be rising at this point, and because he feels so well, he is allowed to go to school. I also thought it was interesting that the life-threatening infections that can develop in people with compromised immunity almost always come from their own bodies - not other people. So, in other words, Matt's lungs or blood could get infected, simply because he isn't as able to fight the bacteria that naturally occurs in his body.

Very interesting!

I suppose it was a good thing Matt didn't have to miss school this week. They are doing end of level testing and he has been SO EXCITED to be tested. He expressed a lot of concern about missing some of the testing, so this just worked out well. He is such a great kid!