Oh Baby!

Today was my 34 week appointment and all is still well! I am measuring large - about 36 weeks. With each passing week I feel relieved that I don't have a preemie. As the due date gets closer, though, I am starting to wonder if this baby will ever make an appearance. Who knows, with all these prayers for our family, including prayers that this baby stay in, I might not EVER give birth. Please, everyone who is reading this, DON'T LET AN ETERNAL PREGNANCY BE YOUR FAULT!!! :-)

All kidding aside, I appreciate all of the prayers for our family more than anyone can know. I can honestly FEEL the changes that have come as a result of those prayers. We feel so comforted every time someone says they are praying or fasting for our family, or when people mention that they've put Matthew on a Temple's prayer roll. It means a lot, and there is power in everyone's combined faith.

We had a very positive day again today. Matt went to school, remembered things I didn't expect him to remember, and had a lot of energy. Tonight he was quite tired, but he's had a busy couple of days. Of course, though, I can't help but worry that the tiredness is his hematocrit (red blood cells), which was slightly low on his blood draw this week. I hate that a child being a little bit tired, can't just be dismissed as a child who is a little bit tired. I feel like I'm always looking for something 'wrong'. It's not just Matt, either, I worry so much about my other boys, as well. I've never been a paranoid mom about, well, anything. I think germs are a normal part of life, don't obsess about sugar, and think that my kids will be just fine no matter how advanced or behind they are in preschool. That's why this diagnoses for Matt has put me through such a loop. Now I feel justified, almost obligated, to consider obscure illnessess in my children for every little thing. Instead of my usual, "Oh, it's probaby nothing. Just give it a week and it will most likely go away", I now worry that everything is a brain tumor!

Oh well! Everyone have a great weekend. I need to think of something FUN to do since Matt is feeling so great!

Love,
-Alli

Another fantastic day!

Matt was able to go to school today. It felt really normal because it was a 1/2 day for everyone, so he stayed with his class and took the bus home (rather than me picking him up at noon). He has been energetic and has done homework the past couple of days. It's nice to see him re-emerging. The memory issues are still significant, but my boy is still there.

It's amazing to watch the changes from week to week. Last Thursday Matt was so sick! He just wandered around the house with his throw-up bucket looking awful! Now, he's happy and comfortable, not too nauseated (although his food preferances and cravings are very different than they were pre-chemo), and he was even able to go with Diana and the younger boys to the 'fun park'. They are there right now. It has a big 'soft play' area, video games, bowling, etc... He was really excited and anxious to go with them. I was thrilled to let him!

Now, though, I am going to go take a nap!

Love,
-Alli

School's back on! (for the moment)...

Last night we received a call from our home health nurse scheduling Matt's blood draw for today. She said that she had just called Hem/Onc to get the orders for the draw and they had told her that they didn't want Matt going to school until we knew what his counts were. :-( He fell pretty dramatically last time and we surely don't want to risk illness or infection by sending him back if his counts are low! He was so BORED today. It made me worried because what if he feels this good for the entire year but can't go to school??? I guess I imagined that if he was too sick to go to school (with his counts) that he would feel crummy, as well. If he feels good, but his immune system is down, we are in for a long year (oh, yeah, I think we're in for a long year anyhow...) So this afternoon he got his blood draw and everything is looking pretty good. His ANC is high enough to go to school tomorrow. He was so excited when I told him. So, here we go back to our 'normal' life. Last time it was 2 and 3 weeks post chemo that he had such awful numbers, so we'll see if this month follows that pattern.

Love,
-Alli

Visit with Dr. Walker

Matt and I left for SLC this morning and had a great drive. He kept saying, "Mom, the only thing I love about visiting the hospital so often is this beautiful drive." I agree that the canyon is lovely, not so much about the construction in Ogden! Midway there he began asking if we could go to Kentucky Fried Chicken. Apparently fried chicken was a craving - and as a mom I felt obligated to indulge it. We stopped for lunch and then arrived at Primary Children's a little bit early. The parking lot was an absolute zoo and we had to drive around for 15 minutes before we found a spot! I was worried that our day was going to be l-o-n-g since there were so many people there. However, we got checked in right away and there was NO one in the waiting room for CT Scan/MRI! We checked in and were immediately called back. CT Scans only take 5 minutes, so afterwards we were on our way to Neurosurgery - again, a few minutes early. I was anticipating a long wait there, as well, but we had barely sat down when they called Matt back. It was so nice to see Dr. Walker again - have I mentioned that I trust him implicitly? He gives good advice and is amazingly knowledgeable because of his years of experience. He is just a wonderful doctor. Matt was released from his 'two feet on the ground' post surgery instruction and he can now ride a bike (with a helmet, the Dr. was quick to add), and do pretty much any other 'normal' 9 year old boy stuff. He can't, however, go back to P.E. Dr. Walker feels that it is too uncontrolled and can get too wild. Matt wanted to know if he could go to Lagoon, and the answer was YES. Roller Coasters are apparently okay, but jumping on a trampoline is not. I was worried that something physical Matt had done had caused the tumor to bleed (we had been boating, and he had been pulled on a tube, the week before, and he had just started Football). He has been an active kid this summer and I worried that by letting him resume activities, the tumor might be more likely to bleed. Dr. Walker said it's not related and Matt can go back to a normal physical activity level. Lastly, Dr. Walker had not heard that we had gotten a different pathology opinion from Dr. Burger. He felt like it was important to know whether it was a PMA or an Olio. In fact, as we left I think he was calling pathology right away. I'm glad he felt that the second diagnoses needed to be reviewed further. Dr. Burger is apparently one of the best and Dr. Walker wanted to know why he thought Matt's tumor warranted a different pathology diagnoses. So, now we are on the hunt for a 3rd pathologist to give another opinion. We are hoping there is someone at Mass General or something, since having Diana here is making me homesick for Boston! It would be a good excuse to take a fall vacation to New England (never mind the fact that we don't actually have to be present to get the pathology reviewed...)! :-)

So, that was our day. Matt had another day of feeling well so I'm going to send him to school tomorrow. Hopefully he continues to do well. We also find out counts tomorrow, so we'll see exactly how this round of chemo. is affecting him.

Love,
-Alli

Quick Update (GREAT day!)

Today I didn't send Matt to school and also didn't give him any anti-nausea meds. Unfortunately, the only way to really see whether he needs them is to not give them to him (you usually know pretty quick if they are still needed)! He has done FANTASTIC all day long. He has eaten pretty well, and has only complained once or twice of a mild sick feeling. His energy level has been great, as well. He went with me to run a few quick errands, and then he and I took the dog on a really long walk around the neighborhood. Tomorrow he has a doctors appointment with the Neurosurgeon, otherwise I would feel comfortable sending him back to school. At the appointment, they are following up with his progress after surgery, checking the incision and such, and he is also getting a CT scan to check his ventricles (to see if they are further enlarged, indicating hydrocephalus). I am anxious to see the results of this scan and also to talk again to Dr. Walker. As the reality of this diagnoses is settling in, I want more specific information so I can research things further. It was such a blur two months ago that I don't think I got enough information - or else wasn't in a position to process the information they were giving me!

I'll update tomorrow!

Love,
-Alli

Sick, sick, sick (but feeling a little better today!)

Thursday and Friday were very sick days for Matt. I am curious to see what his 'usual' response to chemo. will be. They say it takes a few cycles before you know how someone is going to typically respond. If this is a typical response for Matt, I have to say, it hasn't been too bad. (This, of course, coming from someone not actually experiencing it)!

On Friday, after he was still extremely nauseated and throwing up everything he ate or drank, I called Hem/Onc once more to see if we should do anything. Again, dehydration is a huge concern, but for Matt it is even more critical because of his DI that his endocrine panel stay within normal range. They decided that some IV fluids and some IV anti-nausea medications were in order. I had been dreading this exact solution because I thought I would have to go to SLC every time he needed fluid! Hallelujah, though, IV fluids and meds can be given at home! I was so thrilled to hear this! So, Friday night another huge bag of supplies was brought in with 3 different anti-nausea meds, an IV pole, and more saline then I can ever imagine using. A home health nurse also came to show us how to do all this. I was worried when we began, but it is really not that difficult because Matt has a central line. It's just a matter of connecting tubing correctly and adminestering the correct amounts of medication. He went to sleep that night with both Phenergan and Benadryl to help with the nausea, along with IV fluids. Saturday morning, Matt was again extremely nauseated and vomited several times. We gave him the IV Anzemet along with more fluids and he went back to bed. When he woke up, though, that afternoon, he seemed to feel quite a bit better. We actually took him up to the 'Ag-Science' barbecue that they do every year on homecoming. It is fun living in the same town as an Ag school! They had great meats, corn on the cob, yummy onion rings, flavored milks, creamies, and the BEST truffles EVER! They also had a little hayride you took from the parking lot to the barbecue. It was a lot of fun and Matthew has been saying he craves steak. He had 2 steak shish-ka-bobs and had a good time, as well. Last night he slept well and this morning was able to go to church. We did give the Anzemet this morning, as a precaution, but so far he hasn't thrown-up. The Primary program was this morning and I am so glad he was able to participate. All of my boys did so well. They knew their parts and sang most of the songs, and only had to be told to stop wrestling with the children next to them once or twice! :-)

So, there's the update. Tomorrow I am going to be brave and see how he does without the Anzemet. I think the IV medications are the key - he responds very well to them, especially the Anzemet. I'll keep him home from school until I know he won't throw-up without the anti-nausea medications. This week should be crazy since Warren is leaving for Chicago tonight and won't be back for about a week (next Tuesday should be the latest he would return). I'm anxious to see how Matt's counts are on Wednesday. If they are already bad, we could have an interesting week! Have I mentioned that I am so thankful to have Diana here!?!

Love,
-Alli

I knew it was too good to last.....

Matthew went to bed last night very tired, but otherwise well. This morning, he woke me up at 6:30 a.m. saying, "Mom, Will threw up." I went in and, sure enough, Will was covered. We got him cleaned up and the blankets in the wash. Within minutes, Matthew started retching. His stomach was pretty empty so nothing was really coming up, but he was nauseated. As soon as he drank something, though, it came right back up. This worried me because Matt had a dose of the anti-nausea meds (anzemet) right before chemo. and wasn't due for another dose for 6 more hours! Also, he has to skip one dose of DDAVP before chemo because DDAVP concentrates the urine, but during chemo his body needs to flush the chemicals out quickly. If he couldn't keep any fluids down, he couldn't build up the fluids he needs to keep his sodium in check! After a quick call to oncology we got the go ahead to give him the anzemet early. He was still really nauseated all day, and threw up quite a bit this evening. His weight stayed good, though. It has been within the range the endocrinologists want it to stay, so hopefully that means his sodium is staying stable.

This evening I got a call from a friend down the street. My ward is being wonderful and bringing in frozen meals for us to heat when we need a quick dinner. Anyhow, this friend called and asked if she could bring over a dinner for me to freeze. I jokingly said that sounded wonderful, but told her I would probably be putting it in the oven instead of the freezer tonight! She brought the pot pie already cooked and it was delicious! The best part, though, was that Matthew ate FOUR helpings! As he sat down at the table he said, 'Mom, that pot-pie smells SO GOOD.' This is a child who has eaten NOTHING all day long. I tried to make a list with him of foods and drinks that sounded good, and just the conversation made him queasy! The only foods on the list were Handi-Snacks with spreadable cheese (I never buy these, so it's funny that would be something he craved!), and sunflower seeds! How random is that?!? Anyhow, I'm not sure that a dinner has ever been such a blessing. I saved the (very few) leftovers and hopefully that will still sound good to Matt tomorrow. I am so happy that he ate, that it tasted good, and that it has (so far) stayed down. Thanks Stephanie!

So, today has been quite the day! I've done more throw-up laundry today than ever before in my life, and I still have to wash my sheets (of course, Matt was resting in my bed when he got sick this evening.....:-))

Well, it's done, and all seemed to go well!

Once again, Matt had a great (if chemotherapy can ever be considered great...) appointment. His audiological testing was still the same, so no evidence of hearing loss. We were thrilled with that! Unfortunately, even if there is hearing loss, they simply want to monitor it and will then help him with speech therapy and hearing aids after chemo. So, we're hoping for no hearing loss - or only a tiny bit.

Matt's clinic visit also went well. They decided not to cut his dose, since his treatment didn't have to be delayed. The oncologist felt like even if his counts were wacky during the month, that as long as they came up by the next appointment, we could stick with the scheduled dose. I am glad we didn't have to compromise treatment by cutting the dose! They also decided not to do a transfusion, even though his hematocrit was still a bit low. We and the oncologist also discussed next month. Matt is scheduled for full MRI's of his brain and spine. I am beyond anxious to see if the chemo. is doing it's job!

Matt did great during 'infusion'. He watched a movie and ate Skittles and drank Sprite. It feels sort of weird to be so nonchalant during the chemo. infusion. However, on the ride home it starts to affect him. He gets really sleepy and the thought of food starts making him queasy. You can just tell how hard it is on his body. I am hoping, though, that this month mimics last month. I know it's a lot to hope for, but I am the ultimate optimist. :-)

Lastly, I think we found a type of bandage that Matt is responding well to! I don't know if I've mentioned it, but he has been having pretty severe allergic reactions to the 'tegaderm' dressing they put over his Broviac site. So, we then tried a white cloth type dressing called 'primapore' which he reacted even more strongly to! His entire chest was red and rashy and itchy and raw. It looked so awful! FINALLY, last week we discovered 'duoderm'. This is a type of bandage used to treat bedsores and it has healing medications inside of it. Last week they put one on, and today when it was changed his site looked so much better! We're also cleaning the site with 1/2 strength hydrogen peroxide and betadine instead of chloraprep and alcohol. Hopefully these strategies will keep his chest healed and comfortable!

So, that was our entire day. I'll let everyone know how he seems to be doing tomorrow and Friday!

Love,
-Alli

Round TWO tomorrow!

Tomorrow afternoon we have the next big clinic/chemotherapy appointment. They drew his labs today and everything looks good for tomorrow (his counts have to be a certain amount before he can have chemo).

So, wish us luck! I hope it goes as smoothly as it did last month. However, I'm worried that he's going to get pretty sick - and sooner rather than later!

-Alli

Malignant or Benign, that is the question.

So, I thought I might take a moment to address this, the most often asked question. In 'normal' (i.e. not CNS (central nervous system) ) tumors, this is an extremely important question. If you have a malignant tumor, it has the potential to spread quickly throughout the entire body and affect every organ - including eventually spreading to the brain. In tumors of the brain and spinal cord (again, the CNS), these criteria don't really apply. Even in the most aggressive malignant brain tumors, they won't spread to the rest of the body (usually). The CNS is a closed system and, ordinarily, the tumors stay within the CNS. The terms malignant and benign are also misleading when it comes to brain tumors because a malignant tumor may be more treatable and in a better spot than a benign brain tumor that is larger, or in a bad spot. Many people breathe a sigh of relief when told their brain tumor is benign, but this label can be misleading. I liked this explanation I found online:


Grade - benign or malignant?
Brain tumours are put into groups according to how fast they are likely to grow. There are 4 groups called grades 1 – 4. The cells are examined under a microscope. The more normal they look, the more slowly the brain tumour is likely to develop and the lower the grade. The more abnormal the cells look, the more quickly the brain tumour is likely to grow and the higher the grade. Low grade gliomas (grade 1 and grade 2) are the slowest growing brain tumours.You may have been told you have a benign tumour or a malignant tumour. As a rule of thumb, low grade tumours are regarded as benign and high grade as malignant.

By benign, we generally mean
*The tumour is relatively slow growing
*It is less likely to come back if it is completely removed
*It is not likely to spread to other parts of the brain or spinal cord
*It may just need surgery and not radiotherapy or chemotherapy as well

By malignant, we generally mean
*The tumour is relatively fast growing
*It is likely to come back after surgery, even if completely removed
*It may spread to other parts of the brain or spinal cord
*It cannot just be treated with surgery and will need radiotherapy or chemotherapy to try to stop it from coming back.

With other types of cancer, these black and white explanations of benign and malignant work well. But with brain tumours, there are a lot of grey areas. Some low grade astrocytomas can spread to other parts of the brain or spinal cord. Radiotherapy and chemotherapy are sometimes used to treat 'benign' tumours. Even a slow growing tumour can cause serious symptoms and be life threatening if in a crucial part of the brain. So, you really need to ask your specialist to explain your own situation to you fully and simply.

We have never been told whether Matthew's tumor is benign or malignant. After reading these simplified explanations, I think I know why. Matt's tumor takes in characteristics of each type of tumor. It should be slow growing, because under a microscope it looks like a low-grade glioma. However it has also spread, pretty dramatically, beyond his hypothalamus, to his brain stem and down his spine. They are also treating the tumor with some heavy chemotherapy and the plan is to begin radiation once he turns 10. So, in short, he seems to have a benign type tumor that is behaving more like, and we are treating like a malignant type tumor.

So, the gist of this whole post is to say that we really don't know, we do care, but it doesn't actually seem to matter...... There, now, does that answer your question? :-)

P.S. Can I just tell you all, how HUGE I am right now! I had a sad/funny moment when I realized I was wandering the aisles of Kohl's looking for clothes to try on and my only requirement was that they have an elastic waist or be that super stretchy material that is popular right now. Oh, of course it could also be maternity, but there wasn't a whole lot in that department! I am in a sad state! This baby is poking out SO far!

Our end of week episode looks pretty good!

Thanks for staying tuned for another episode of our very own 'General Hospital.' :-)

So, after peeing out over 100 ounces (in 24 hrs.) when they took Matt off the DDAVP, they (they meaning Endocrinology) panicked again and put him back on the medication with instructions that Matt may NOT go to school until his sodium is stable. The good news is that yesterday, after drinking 100 ounces to make up for the SIX pounds he lost in one day, his sodium was good at 145. Today we were able to maintain the weight and sodium level at 142. YEA!!! Now, we've just got to hope this schedule of keeping his weight at a certain level and his 'input' and 'output' at a certain level, will stabilize his sodium long-term.

Also, his hematocrit has come back up into the 'low-normal' range and he didn't end up needing to be transfused. I am glad for that! I want to avoid blood-products as much as possible because of his allergic reaction last time. I know that they will be a necessary evil, but I worry that his reactions will become more severe with repeated exposure. Hopefully, he won't be needing them too regularly! His other counts are also slowly coming up. They have to be a certain level for him to receive chemo, and I believe that today they were all within the range they need to be for him to receive his next treatment.

Today I also went to the obstetrician to check on this sweet baby. I'm 32 weeks and all is looking good! No cervical change from last time - whew! I was really worried that pre-term labor was beginning and that I might be put on bed rest. At this point, unless something happens in the next 2 weeks, I think I've avoided that scenario. I want to hold this little one in for as long as possible, and I know that each week the risks associated with delivering a premature baby go down. I delivered 35 weekers last time, so if I can keep from delivering before then, I'll at least know what to expect!

This next week is a busy one! Matt goes in on Wednesday for his 2nd round of chemo. I am anxious to see how he reacts. He also goes in for audio grams before each round of chemo. I'm hoping that there has been no damage to his hearing from the chemo. Wish us luck this week!

Love,
-Alli

We could star in our own soap opera!

I've never been a big fan of soap operas. However, I can't help but feel a little like we are living one right now! Wouldn't we be a great cast, and a great story on 'General Hospital'?

This morning Matt was energetic and excited for school. So, once again, I was surprised to get a call from Hem/Onc saying that Matt's Hematocrit (red blood cells) was at 24.3..... they transfuse when it falls to 25. They asked how he had been feeling since low Hematocrit causes tiredness, dizziness, pale skin, weakness, etc... I reported that he had felt well that morning. They wanted to talk to the oncologist to see if he wanted to transfuse even though Matt was not symptomatic.

In the meantime, we got Matt's endocrine results back. Everyone started to panic because now Matt's sodium had fallen too low - to 126. They thought that maybe the low sodium was causing the confusion yesterday. So now we have instructions to stop the DDAVP, see if his sodium will right itself, and keep track of his weight.

So, now we are waiting to see what Matt's hematocrit will do. If it falls any further they want him to come in for a transfusion tomorrow. We will also get his sodium drawn and see if that has made any improvement.

Stay tuned for our next episode of:
'Goodworth General Hospital'.

Love,
-Alli

PARANOIA! (Or, will a headache ever just be a headache again?)

Today I started getting paranoid. Matthew kept repeating himself (a.k.a. 'Ten second Tom) and asking over and over where his pillowcase was - (answer: in the washing machine with his sheets). After several repeats of this behavior, he said, "Mom, I have a headache, can I have some medicine?" When asked, he reported his headache at a 7 - very high for him. I don't think he's asked for headache meds at all since we've left the hospital. So, I gave him a Tylenol and a few minutes later asked how his headache was. He looked at me strangely and said, "I don't have a headache." Well, I panicked because he had needed a platelet transfusion on Friday. Low platelets can cause uncontrolled bleeding - and even spontaneous brain bleeds. Presumably, it could also aggravate a tumor that has already shown a tendency to bleed. I called Neuro-surgery and they first thought about checking his sodium to make sure that was under control. However, about 10 minutes later the nurse called back and said that on 2nd thought they wanted to do a CT-Scan just to make sure it wasn't bleeding. So, we hopped in the car and headed to SLC to get a scan and an endocrine panel to check his sodium level. Thankfully, the scan showed no new bleeding. That was a huge relief. They did say that his ventricles (his tumor is on the 3rd ventricle) were a little bit enlarged from his last scan. They are going to watch that closely to make sure there is no further build up of fluid, causing hydrocephalus. It was just so scary to see a behavior regression like that. So far we have only seen progress forward (albeit, in teeny-tiny steps), so it made me nervous to see behaviors we haven't seen since diagnoses. We are waiting to hear on labs - we'll probably get those back tomorrow.

Lest anyone be concerned that we are abandoning our other children through this ordeal, I will reassure you and mention that we hired a Nanny. I am so thrilled! Our friend Diana, who helped us when the twins were born (she was a professional Nanny for another family, but the children at her other job were in school during the day, so she was able to come help me several days a week when Nate and Drew were tiny) has come to stay with us and help. I thought of her while Matt was still in the hospital, but assumed she would already be working. After talking to another Belmont friend who had heard that Diana was transitioning to a new job, I contacted her to see if she might be interested in coming to help us. She was! Yea! She got here last week and it is so fantastic having someone who can pick up anywhere I leave off. She is delightful with my children, very patient, and very independent - I don't have to give her specific instuructions, on, say, what the kids have to have for lunch. I am so thankful that she was willing to come help us through this time. It is a huge relief to have someone always on hand to help when days like today happen, and I have to be in SLC with no notice!

Love,
-Alli

Yee-Ouch!!!

Can I just say...

I am so incredibly thankful for health insurance!!!

Warren has always made sure that we had insurance - even during law school when my job paid for nothing except our insurance! No matter how bad things have ever been in our life, financially, he has been obsessed with us having health insurance. I think I have a glimmer of understanding now!

Let's just say that having a child in ICU for almost 2 weeks is extremely expensive! I know lots of people who do it for lots longer than we needed to, but the bill for those 2 weeks was enough to shock me!

I had to go fill Matt's prescriptions yesterday. Most of them are not expensive at all. However, one stood out because it had a $50 co-pay. The instructions on the bottle say that he should take this medicine once a day as needed. Because it was so much more than the other's, I was curious about it - maybe there were more pills? When I asked the pharmacist tech how many were in the bottle, she replied 3 (THREE!!!) I then asked why my insurance wasn't covering it and she replied that they had covered $150 of the cost! Hopefully Matt just never throws up (this medication is a very strong anti-nausea/vomiting medicine)!

-Alli
(who is really not complaining about how expensive things are - again, insurance is WONDERFUL - but who is just expressing her absolute amazement that medical care is so expensive. Worth it, of course, but very expensive!)

Just a quick update

This morning we met with a pediatric endocrinologist at the Utah diabetes center up at the U of U. They mostly wanted to see Matt in clinic so there was a chart on him, and just to check how he was doing. They decided to change up his DDAVP a little bit and also wrote a prescription for a hospital grade digital scale. They want to keep careful track of his weight in Kg. because he has DI, but has completely lost his thirst. The only way we will know he is becoming dehydrated is if he begins losing weight (which will be tricky, since the chemo is also likely to make him lose weight).

Afterwards, we headed straight to Hem/Onc for his transfusion. While there we *finally* got to meet our oncologist! YEA!! Of course, I wasn't expecting to meet her today, so I didn't bring my list of questions! However, we will see her again soon, so I can remember to ask her then. It felt good to talk with his primary doctor. After a short consultation we went back to 'infusion'. Apparently, it is not my imagination - it is strange for platelets to fall so quickly. Because of this, the doctor wants to cut his chemo dose by 15% next time. It's tricky finding what works - you have to have the right dose so the tumor is being affected, but not so high of dose that your counts don't come back up by the next scheduled chemo. They started the transfusion with strict instructions to me to 'watch for anything that seems different'. Many people have allergic reactions to blood products. Well, within 30 minutes of beginning the transfusion, Matt began to shake pretty violently. I called the nurses over and he started to get hives on his face right while they were all standing there. So, we had to stop the transfusion, the doctor had to come right over, and he had to have a pretty hefty dose of Benadryl along with Tylenol. Within 30 minutes the hives had cleared up and the shaking had stopped so they were able to continue the transfusion - slowly. It's crazy that they still have to give you something you are allergic to. The platelets are necessary even though they make him sick! When we finally got out of there Matt was SO tired. He slept all the way home, came home and got into bed, and is still asleep as I am writing this. These treatments are so hard on his body! I hate the fact that we have to make him sick in order to make him well. It is heartbreaking! :-(

And we were having such a good day....! :-(

Matt was tired this morning, so he didn't go to school. Otherwise, today was wonderful. He seemed so great when the home health nurses came to draw his labs. He even felt up to going grocery shopping at Sam's Club with me this afternoon.

That's why, I was so surprised when I arrived home and heard a message on my home phone from Hem/Onc. The nurse said they had received his 'counts' from his blood draw and his platelets were really low. Platelets help the blood to clot, so low platelets mean a small cut or bloody nose might not stop easily, and Matt might bruise too easily. Anyhow, he has to go into the clinic first thing tomorrow morning for a platelet transfusion! This is something very normal for a person having chemo, I just didn't expect it to happen so soon. It seems like lots of reports I get are people saying their children handled chemo well, weren't terribly sick, never needed transfusions, were able to go to school, etc... I suppose I just expected we would be in that group. Apparently,we won't be. Matt's ANC (remember, his total white blood cell count) is also getting quite low. He started at 8500, last week was 4500, and this week was 1200. Anything under 1000 is a 'gray area' in which we really need to be careful of germs and illness. Anything under 500 is critical and Matt is housebound with no visitors allowed. When Matt was 8500 I just felt optimistic that he wouldn't get to 500 very quickly. Now, though, at 1200, that 500 number seems WAY too close!

Today was just a dose of reality. I can't pretend my boy isn't terribly sick when we're going for a transfusion in the morning!

Fascinating!

Yesterday we had another LONG day down at Primary Children's Hospital. William had an appointment in the afternoon (made clear back in April!) with the Pediatric GI group for his pretty severe reflux he has had since infancy. In the morning, Matt had an appointment with the Neuropsychologist to have some testing done so we can better figure out what his brain is doing.

The results of the all day testing were fascinating. I really wish we would have had a BT (before tumors) baseline of these cognitive tests. This will have to do, though, and we hope to be able to track improvements in his memory. I felt really reassured about his cognitive functioning. He still scored "high-average" to "superior" in all of the cognitive tests. His processing speed is "average" to "high-average" and he did very well in each of those tests. His verbal IQ was 144! This score is after having brain-surgery, heavy-metal chemotherapy, and a brain tumor affecting his memory! 'Normal' IQ is 100, so it is pretty amazing that he scored so high.

The fascinating results were the memory tests. On one test Matt was given a plastic grid with 15 squares and these little round blue chips. He was given 10 seconds to look at a picture of a dot pattern, and then he had to re-create the pattern on his grid. Apparently, he did just awful on this test (which I would have predicted). He couldn't remember any of the patterns accurately. Then they did another test where Matt was shown 48 different faces. He then, immediately afterwards was shown a whole bunch of faces and had to say 'yes' if they were in the first group of 48 or 'no' if they were different faces. In this test, he got 42 faces out of 48! Then they went on to do another task and 35 minutes later came back to the face book. The test was repeated to see how many of the 48 faces he could recall. On this delayed test he got 44 faces out of 48! I don't know what's going on in that little brain of his, but I thought this was so fascinating! Then they did one other test where they told him a list of 15 items they were buying at the store. Matt was then asked what items were on the list. He was extremely inconsistent in this task. He could only remember a few items. Then, the list is repeated several times and he was asked again and again how many he could remember. Normally, people remember more items each time the list is repeated, but this wasn't the case for Matt. His correct answers were totally random (getting 5 correct one time, then 3, then 5, then 2, etc...) I can't wait for the official report with all of the test details (I am just repeating here the discussion I had with the Neuropsychologist). I am very hopeful that his full memory will return, but if it doesn't, I just hope we can find a way to successfully teach this kid who has so much potential!

Will's appointment also went well. I really liked these doctors - they took his situation seriously and are going to be very proactive. We are keeping track of his 'spit-ups' for a month and trying a few things to improve them. If we see no improvement they would like to scope his throat and try to figure out why this has been a problem for so long.

So, that was our long, tiring day! Now I get to go back to SLC tomorrow to meet with Endocrine... (sigh).

-Allison

P.S. I also made a little bit of a stink to the psychologist about never having met our primary Oncologist. The Neuropsychologist thought this was also odd and took me to meet the office coordinator guy. With his help it was very easy to switch Matt's chemo appointment to the 19th rather than the 20th and make the appointment with Dr. Bruggers. My friend from the pediatric brain tumor foundation told me that the neuropsychologist could work wonders in that department and she was right (thanks, Jamie)! So, in less than 2 weeks we meet our oncologist and can discuss our 2nd opinion with her! Yea!

In which Allison proves she's not as 'together' as she likes to believe.

I cannot figure out my meltdowns. I can explain Matt's situation, give gory details about his treatments, brain surgery, and hospitalizations to 100's of people and not blink an eye or tear up. It actually feels like it's becoming a part of our family. Sad as it is to think this is now defining us, it really is, and in some ways we are embracing it. We are becoming involved in different pediatric brain tumor organizations and are thinking about starting a foundation for pediatric brain tumor research and support. (Anyone have any clever names? The only one we can think of is "Miracles for Matt.")

So, today I decide it's finally time to return those W-A-Y overdue library books. Matt got sick right as the books were due, then my life fell apart, and truthfully, my chief library book tracker (Matt) could no longer remember where the books were hidden! Definitely one of the downsides of brain tumors . . . I've also been dreading this task because, well, Matt is my child who gets ecstatic at the thought of the library. I really didn't want to go at all, but knew I had to go face the music. I was feeling great this morning and was anxious to get a few errands run. At the library I proceeded to explain (generally) that my books were obscenely late, but that I had a good excuse. The librarian had to check with the head library guy, and he wanted me to come to his office. Apparently, they have had several people this week claim to have children in Primary Children's, and he thought I was another woman they had spoken to earlier this week. As he proceeded to look over my account and take off my fines, he agreed to waive them all if I would just pay $5. This was a kind thing to do and I had no problem writing a check. However, as I am writing, the tears just start and before I know it I am sobbing in this poor gentleman's office! As I am blubbering I worry that he'll think I am upset that I have to pay $5. That isn't it at all, the wave of emotion just hits me at the most bizarre times! I try to explain this to the man and he just hands me a tissue. So, then I have to weave my way through the (horribly crowded) library. The first day of story time was today and it was also voting day, so it was really crowded. I was so embarrassed. Luckily, there was a woman from my ward there who understood a bit about why I was melting down. She was so calm and walked me to the door. I'm sure everyone thinks I'm a lunatic, but, you just can't predict these things. For someone who considers herself usually pretty in control, these sudden losses of control are very disconcerting!

Some other signs and symptoms of my insanity:

Finding myself in Wal-Mart without a very important, um, foundation undergarment. I was totally dressed otherwise, including jewelry, I just forgot something important (especially for a woman who is 7 months pregnant)!

Missing the road to Wal-mart. Then, missing the road back home after I finished my shopping!

Taking my boys to the first day of school. Having long talks with both teachers and the principal and upon returning home having Warren look at me strangely and say, "did you know you have two totally different earrings in?" I did to - they weren't the same color, size, or style!

Driving home today I got clear to the canyon before it occurred to me that I had missed our street!

COMPLETELY losing it in the Verizon store. I am thankful I don't live in SLC because I can never go in there again. When Matt was in the hospital I was desperate for a new cell phone. My old one was completely worn out and kept cutting out on people. Verizon needed me to call my old provider and obtain my account number. When I was on the phone with my old provider they said they needed a picture ID. I totally lost it and started sobbing in the store. They were all very nice to me after that, Cingular did end up giving me the account number and the Verizon people were SO kind and helpful!

So, I suppose the lesson here is:

If you ever meet a woman whose son was recently diagnosed with a brain tumor, DO NOT ask her for picture ID or for a $5 check to get rid of any fines!

And just when I learned to pronounce (and spell!) Pilomyxoid Astrocytoma

This afternoon there was an email from John's Hopkins with their recommendations.

I wanted to pass on our recommendations. We reviewed Matthew's medical summary, pathology slides and MRI scans. In general, we are in agreement with the proposed plan as put in place by Drs. Yaish and Bruggers.

Dr. Burger (our neuropathologist) gave the tumor a slightly different diagnosis than the one from Primary Children's but this may, in part be related to having only a portion of the specimen to review at Hopkins as opposed to the entire specimen available to the neuropathologist at Primary Children's. Dr. Burger call this an oligodendroglioma type lesion which is a form of a glial tumor. Pilomyxoid astroctyoma is also a form of a glial tumor.

From a treatment perspective, I'm not sure it makes much difference. I still think it's reasonable to start with carboplatin and if that's working, stick with it. If it doesn't seem to be as effective as desired, I talked with Dr. Yaish about other choices (such as temozolomide) that might be substituted. Thanks for allowing us to reflect on Matthew's case. Please let me know if you have additional questions.

So, now I've learned quite a bit about Matt's tumor type and I need to start all over! I've been reading this article on oligodendroglioma. It actually sounds more like Matt's presenting symptoms, age range, and shows more of a tendency to do things that Matt's tumor did (like bleed and seed into the spine). I did post one more question to the doctors at John's Hopkins about the 'grade' of the tumor. The grade will make a significant difference in terms of his prognosis and also how responsive the tumor is to treatment. I really still do not want to ask about prognosis. To me, my strong boy has a 100% chance of surviving this nightmare. However, I believe it is extremely important to know exactly what we are dealing with so we can fight it effectively. I think I will talk with oncology about the possibility of adding temozolomide to his current chemotherapy. He was originally going to be on this drug, and it seems to be very effective against this new type of tumor. The side effects sound awful, though... It's hard to know what to push for.

Lastly, I can't decide whether we should try to get a 3rd opinion. The difference in diagnoses concerns me, even if the treatment might be similar.

Well, I suppose if I didn't have enough to stew about, I do now!

Love,
-Alli