Hannah's Test Site

Just a quick update tonight. Hannah had her blood drawn on Friday without event!! Yes, she was calm. I had prepared her with numbing cream on her arm, a lollipop and a bribe of $5 for a calm blood draw. She started to get a little upset, but Sally who drew her blood was excellent-very fast and efficient. Now we will wait for the results of the blood and urine are analyzed with respect to the DXA scan by her endocrinologist, hopefully this week.

My sis Sue and daughter Sydney arrived on Saturday. The girls are very happy to be together again, and it's nice after seeing them at Disney just a few weeks ago to see them again so soon. That usually doesn't happen. today we planned a trip to the ocean on the south side. It was delayed this morning by heavy rain, then Hannah threw up. I think she may have had a little bug, since last night she almost got sick also. I'm hoping that's what it is. By the time we decided to go to the beach, it was around noon. On the drive over, the weather report was calling for heavy thunderstorms! We spent an hour at the beach before the lifeguards shut it down, and impending storm about 3 miles away with hail. It was dark and scary, thundering when we left. Half way home it hailed, just as promised, lots of thunder and lightening.

We did have a good time for our "hour" on the beach. Here are a few pics:

♥♥♥ Kim ♥♥♥

Special Prayer Request-tomorrow (Friday, July 25) at 11:00 am is
INTERNATIONAL {{{{{{HUGS}}}}} COLEMAN DAY.
Please take a moment to send up your prayers for Coleman and hug your kids (or spouse, or dog or yourself). The power of prayer (collectively) can help them right now. We love you Larsons!

Hannah had her DXA scan on Tuesday, took an hour to drive there, an hour to drive home (of course, not including the Olive Garden lunch) and about 3 minutes for the scan. Hannah was very happy that this time there was no prodding or poking, needles or sticks. We were in and out of there in about 10 minutes total, which was nice.

I'm here now trying to interpret some of the results. The report says that the diagnosis is osteoporosis and her fracture risk is high (Paul, her z-score is -3.1). Low bone mineral density is a Z-score that is less than or equal to -2.0, adjusted for
age, gender and body size. So, Hannah is not only low, but very low. They scanned her lumber spine and her hip. The hip is not as reliable for data as the spine, since she is still growing. The Z-score we got today was from the spinal scan. From what I can interpret from the report, the average density for her age/weight/height and race is around .65 and Hannah's density is .4. She is more than 3 standard deviations below the mean for her comparative group.

So what does all this mean? I don't know. Much of the data I have read says that it should not be qualified as osteoporosis unless the child also experiences several bone fractures. As far as we know, Hannah has had none. However, the only thing that would show more definitively would be a CAT scan, not a normal x-ray like she has had in the past. There are many variables that go into this diagnosis, not just the DXA. Tomorrow morning we will go in for a blood draw and urine test that the endocrinologist ordered in addition to the DXA scan. All of this information reviewed together should give us (him) a better idea of what's going on and where to go from here.

I have a new found respect for endocrinologists, this information is all very complicated to interpret and so many factors are interrelated, it's often difficult.

Tomorrow should be interesting. We will go early in the morning for her blood draw, then Hannah's tutor is coming at 9am. Monday Hannah ran from the room and I couldn't get her to come back. They finally worked it out, and studied for about 45 minutes. Today she did not want to work on her homework, she is crying because "everyone else has summer, why do I have to have a tutor? It's not fair." She finally refused to do the rest of her homework, and said she is going to run out tomorrow morning also. I tried reasoning with her, the whole explanation, but nothing seems to be working. I think she's just tired of it, she is frustrated and she sincerely does not care whether she learns or not. This isn't up for negotiation, so we'll see how it plays out. I felt so badly though, I wanted to yell out "no, it's not fair." But when I think of all those other children who are dying from this cancer, I do feel this is something I can't even begin to complain about.

♥♥♥ Kim ♥♥♥

My heart goes out tonight for Coleman and his family--web page HERE. I mentioned yesterday that they found cancer cells in his CSF, today they got a call from his oncologist that the MRI revealed several spots now on his spine also. We all know what that means, and it's not good. I've been in a funk all day, I just love this family (from afar). Pray, pray, pray like Mimi says, it's all we can do now. I talked to Hannah about it today, and she asked me "is Coleman going to die?" She wanted to make him some cookies and send them, and maybe draw a picture too. We'll do that. I'm sure Peggy won't mind if I share this video of Coleman from his website. I just have to warn you, it's heart breaking...



Update on Hannah's tests tomorrow, tonight is about Coleman.

♥♥♥ Kim ♥♥♥

For those of you who have been with us for a while here, you have heard us talk about Coleman and his family. That poor little boy has been through so much, most recently stem cell transplant which was so difficult on his little 4 year old body. This week his family learned that he still has active cancer cells in his spinal fluid. I just stopped when I read that on their website, it's so heartbreaking. He has already been through the highest dose of chemo, maximum radiation and stem cell. Where is there to go now? There is not really anything out there for recurrent medulloblastoma, sadly. Coleman is in God's hands, we have been praying for him and I know their family would appreciate your prayers at this difficult time too. His website is HERE if you would like to stop by.

The summer continues and we're enjoying days with a bit more time. We have been enjoying the pool, especially since the lawn was just completed, and no more huge dirt pile in the back yard. It's absolutely beautiful, nearly finished. The heater and filter need to be moved over, then the deck completed. Thus, we don't have the stairs completed yet, so Hannah can't get in and out by herself, but it's ok since I'm there with them anytime they are swimming anyway.

The town came last week and denied our final approval for the pool. They said our fence wasn't sturdy enough, the gates opened the wrong way and the entire thing had to be REDONE! I tried to reason with him a bit, the fence is really adequate, but he says that a small child would be able to somehow bend the wire and take it off the fence and get in. I guess we need stronger gauge wire, or a separate fence around the pool itself in the middle of the yard! Oh boy, after a few minutes, I couldn't even speak to him anymore. He left. Dave has already redone the gates, so we're working out the rest.

Hannah goes for her dexascan (bone density scan) tomorrow. It's similar to an xray, very easy and quick. We also have to have her blood drawn at the lab here, I've been putting that off since it won't be pretty, but we'll go in the next couple of days. These two things together should give us a clearer picture regarding the osteopenia.

Everything else is status quo. Her nausea seems in check with the two medicines she takes every morning. Her emotional state is the same, cognitive issues the same and balance issues the same. Sometimes LOTS of energy and laughs, take a look at her on this video!!

♥♥♥ Kim ♥♥♥

GREAT NEWS!!! THIS JUST IN GREAT NEWS!!!

Dear Team Leaders,

The Senate of the United States works in strange and wonderful ways. Late this afternoon we were notified that Senator Jack Reed planned to bring the Caroline Pryce Walker Conquer Childhood Cancer Act to the floor of the Senate to see if it would pass by unanimous consent. I am so pleased to let you know that there were no objections.
The bill passed.

Tomorrow we will send out the official press release but tonight I wanted to you to know how grateful I am for the hard work you have all done to make this happen. This is historic and you should all be very proud that you have had a part in changing the world for children with cancer.

My very best,

Kate

Kate Shafer, LICSW
Director of Advocacy
CureSearch National Childhood Cancer
Foundation
4600 East West Highway, #600
Bethesda, MD 20814
(240) 235-2217 ((800) 458-6223 X2217
kate.shafer@curesearch.org

Thanks to all of you who became involved, this is great news!
♥♥♥ Kim ♥♥♥

I haven't updated in a week I just noticed. I didn't get the results of Hannah's scans until this morning when I emailed the doctor. No breaks, but the foot shows signs of osteoporosis. Also, the bone age scan shows she has the bones of a 6 year 10 month old. That is good since the radiation will stunt her growth, and it will give her a bit more time to grow.

Today we visited the endocrinologist-a second one. I really liked him, he was knowledgeable and very informative. He had a few ideas regarding the osteoporosis/osteopenia, and ordered a few more blood tests that have to be in conjunction with a urine test at the same time. Hannah also has the dexascan next week that will measure her bone density. This will be the most telling piece of information regarding this problem. It's perplexing because her calcium and vitamin D levels are in the normal ranges, however I learned today that that could be deceiving. At times I think endocrinology is almost more complicated than oncology-or maybe it's because I know so much more about oncology than I know yet about endocrinology. With the thyroid and parathyroid and TSH,PTH, hyperparathroidism, non-pth hypercalcemia, pseudohypoparathroid,etc. etc. etc. it is very complicated because some of these things interact with each other, thus causing even more complication. I still have a lot to learn, but this is going to be an issue for a long time with Hannah due to the radiation.

So we have been enjoying the summer, swimming, birthday parties, tutoring, and very hot weather here. Not as hot as Florida though, that's for sure. Here are a few more photos from the vacation (from which I needed another vacation just to catch up). I just finished unpacking the girls' suitcases and now just have to finish mine. i know it's been 2 weeks, but I packed enough for about 2 months, so it takes a while just to unpack all the clean clothes! I just kept thinking when we were there..."this is what Hannah wanted to do, when she was sick and pale and thin in that hospital bed, this is what she wanted and we gave it to her." I hope it's something she will remember and cherish for the rest of her life. I know I will.

These are pictures from our day at Seaworld. We were treated to a special behind the scenes meeting with Shamu (really not Shamu, I think their names were Tiki and ???, someone help me out here.) Did you know there is not really a Shamu? There are many whales that play the part, but no real Shamu. The girls reallly didn't understand that at first. We were actually able to touch the whale, which is pretty unusual there. We were back there with a Make A Wish family. It is pretty competitive to be a whale trainer there, they have to train and work with the whales for at least 3 years to even get in the water with them. Then about another 4 years before they are able to perform in the shows. Most of the performers have been there for 10 years or more. It was pretty special. Here is Hannah too during the Shamu Rocks show-a bit loud, but eating cotton candy, her favorite. And the "walking wave" on the way out of Seaworld that night. We were there for over 12 hours that day!

♥♥♥ Kim ♥♥♥

Clinic today went well, it was a quick finger stick. Hannah's counts were ok, but her white counts were down quite a bit from last month, the reds remain stable. The doctor said it's common for the whites to fluctuate, I'm going to look into natural supplements to help boost her immune system.

For the first time since Friday, her foot felt a bit better today. She is able to walk on it now (figures since we went in today for a check up). We had a foot xray, which showed no obvious breaks, but this type of xray may miss any small hairline fractures. Thus, he wrote a script for a dexa scan-which will measure her bone density. I hope to get this scheduled for next week. They also did a bone age xray-just a simple xray, it's meant to show the age of her bones by looking at her growth plates. We hope it shows that she has a "young" bone age-which would allow more time for growth. She needs this extra time due to the radiation and other treatments she had which are expected to stunt her spinal growth (which we're already seeing). We should get the results tomorrow or the next day.

Hannah delivered over 2 dozen hats today to clinic-perfect for protection for those little bald heads in the summer sun. They were very happy to get them. We got to see some of our old friends today-Kaitlyn and Alexa, both with leukemia and both doing well right now, thank goodness. It was nice to see an old face, in the midst of so many new ones. Sitting there waiting today just reminded me of how awful it was back then. When the little kids would have their names called, some of them immediately started screaming and crying "NO, NO, please NO." The parents would try to soothe them, but still have to take them in to get accessed just the same. It broke my heart.

A few more pictures to end tonight, where are all the kids???
♥♥♥ Kim ♥♥♥

Tomorrow we go to clinic for a finger stick and a check on Hannah's foot. She is doing a bit better with it, but still can't walk on it, and it still hurts quite a bit. Hannah asked me today if she still had to have MRI's. Then she wanted to know if it was this month or next month or the next. Her next one should be the beginning of September, before school starts again. She said that was too soon. If it wasn't for the IV's she had to get for each MRI, I would like to have one once a month, just to be sure. Yesterday morning I let the girls sleep in, they woke up a bit after 10am. By that time I thought that we might as well try it without the anti nausea pill, and just go with the Zantac. I gave her that, and we came out only to run into the bathroom where she threw up. It was so reminiscent of the old days when she would wake up and run into the bathroom to throw up. Scary. So, I chucked the no pill idea and gave it to her. She was fine after that.

This morning she got up at 8am, took her pill and Zantac and got ready for her tutoring session at 9am. She started crying about 5 minutes into the math session, I think her tutor started off with something she thought Hannah already knew, but didn't have down pat. Hannah did well after that, she really likes Mrs. Tepfenhardt. Hannah asked me why she had to go to school if it was summer!

So, how did Hannah hurt her foot? On Friday morning, the 4th of July, Hannah jumped into the pool. I wasn't looking right at her at the time, but she started screaming in pain. She hasn't been able to walk on it since then. There is no obvious trauma, no bruising or swelling so I'm not sure exactly what's going on. The thought comes to mind that due to the low bone density from the osteopenia she may have broken it. It's her heel that hurts specifically. We'll most likely have an xray tomorrow at clinic, just to rule it out. Since we're going to be there anyway, it will be easy.

We are looking forward to seeing our friend Kaitlyn tomorrow-we haven't seen her and mom in such a long time! We are also going to stop by and see our friend Alec, who is inpatient at the moment, hopefully getting out tomorrow. We have 5 bags of toys and crafts to take in, as well as a very large bag of hats that Hannah bought to deliver. Colby is going with us tomorrow (she wasn't so excited about that) but Hannah is very happy about it! We leave at 6:30am!!

A few more Disney pictures...these are from Discovery Cove. It was my most favorite place during the trip. It is a very expensive place, but only a certain number of people are let in to swim with the dolphins (for only 1/2 hour!!!). The rest of the day is spent swimming in their pools, swimming with the stingrays and fish, riding the river and visiting the birds in the aviary. Everything was included for the day including breakfast, snacks, beer (it's an Anheiser Busch owned park), lunch, etc. That was very nice. They provided a beach wheelchair for Hannah-and she loved it. She didn't allow anyone else to ride in it, and it really helped a lot with getting around during the day. I would highly recommend it (just save up first.) I'll post some of the dolphin pictures from our day tomorrow.

♥♥♥ Kim ♥♥♥

So, where do I start? Above everything else, the trip was FUN. How is that for finding the joy in things? It was very hot, every day, very hot. It also rained nearly every day, but not for hours and hours. We had some pretty good thunder storms that closed the pool, but we worked around it.

We got there on Saturday, spent that night around the hotel, in the pool. Sunday we went to the Magic Kingdom for the day. Disney was so very accommodating for Hannah. They gave us a pass to use her stroller as a wheelchair, so we could wheel her right into any rides. They also gave us a special pass that allowed us to bypass all of the lines. Wow, that was big. Instead of having to wait an hour for a ride, we went right in with the other handicapped guests, and never had to wait more than 5 or 10 minutes. They even allowed everyone with us-there were 8 of us all together with Grandma and Grandpa, my sister Sue and her daughter Sydney. So, we could all go on the rides together as a group when we wanted and no one was left out. That was very nice.

I won't try to put it all in this one update, don't want to put any of you to sleep. Monday we went to Discovery Cove to swim with the dolphins (my absolute favorite), Tuesday with Seaworld (not my favorite) and the rest of the days at the Disney parks. Oh-and Wednesday morning at the ER clinic. Nope, not Hannah but Colby. It's almost a tradition-when we go on vacation, Colby usually has a visit to the local ER/doctor. It's been ear infections, fevers, this time it was an eye infection. I thought it was simply a stye that would go away, but it got much worse and swollen. ER doc said it was a very common almost internal stye, gave her some antibiotics, and eye cream and hundreds of dollars later we were on our way. Only took us 4 hours, so that wasn't too too bad.

Here are a few pictures....next post I'll tell you why Hannah is not walking now and how she got hurt.
♥♥♥ Kim ♥♥♥

We're home...here is our trip

Fun, Exciting, Exhausting, HOT, water, ER visit, HOT, pool, lots of food, rides, tears, dolphins, whales and turtles, oh my, HOT, injury, freight trains (ha ha mom), gift shops, fun, tears, Canada, pins, rain, head of the line, feet, and FUN!!

Ok, now you have it all. I'll leave you with this, Hannah with the Mickey head, the first of many pictures and stories..



Lots of prayers for our dear cousin Mindy, in the hospital after 2 brain aneurysm surgeries. We love you!

♥♥♥ Kim ♥♥♥