Hannah's Test Site

All clear, NED again, wonderful news. Hannah's MRI went well, quick today since it was only the cranial MRI. She even did well with the contrast injection, it was very quick and only a couple of tears. Last night she said she wanted to "make a deal" with Dad about the IV. They made a deal that if she was still, she would get $10 of lottery cards. The girl is a lottery fiend. She loves scratch off lottery cards. She called Dad right away after the MRI to report that she won the deal, and he owed her. This sparked a lot of discussion on her part about whether she wanted five $2 cards, or ten $1 cards, or 2 $5 cards, etc. She finally decided on four $2 cards and two $1 cards (she wanted me to write it down so she could remember. She writes EVERYTHING down in great detail now!!) So, another 3 months to rejoice and relax. December will be the next MRI, cranial and spinal. Thank goodness for insurance, every MRI is $5,000, and that is for EACH part done. The cranial MRI is one part, the spinal is three, so a full cranial and spinal MRI is around $20,000. WOW!


I am awaiting some facts that will help us determine the next steps but for now it is time to focus on the press, with this news and the need for the major networks to do something HUGE this year for Childhood Cancer Awareness Month. As many of you are aware, the major networks are teaming up and doing a “Stand up 2 Cancer” event September 5th . Let’s make sure that ABC, CBS and NBC are aware that September is Childhood Cancer Awareness Month. Let your voices and incredible stories of bravery be heard! We need a cure PRONTO so let’s ride the wave of this exciting news regarding S911 and get the press the children deserve. MORE AWARENESS = MORE RESEARCH $$$$$. Thank you to CURESEARCH for all you do to secure funding and move us toward a cure!

Please write to your local/national newspapers and TV New stations/programs asking them to do something to recognize September as Childhood Cancer Awareness month. And in addition, discuss the “Stand up 2 Cancer” event in your letters to ABC, CBS and NBC.

Thank you for what you are doing to support the kids!

Links for a few media outlets you may contact. Please send to any you feel would benefit our cause! We need to spread the news to get the recognition that children’s cancer deserves in September!

Contact your local ABC Affiliate station
Contact your local Fox Affiliate station
Contact your local NBC Affiliate station
Contact your local CBS Affilitate station
CBS email Form 

Thanks for being here with us, for all of your support and prayers (and cans too!!)
♥Kim

What a superstar we have! Hannah's play was Saturday night, and it was incredible! It's just amazing how they begin on Monday, end on Saturday, and put on an entire production of Hansel and Gretel. Here are a few pictures from the production. Hannah really had a good time and was very proud. She said she cried backstage because one of the kids was a bit intense, yelling and creating tension, which made her nervous. She asked me "when I came out to say spiders, could you see the tears in my eyes?" No I couldn't. Here is Hannah getting her makeup done, and then on stage.







I was so happy that Hannah agreed to participate in the play. I think it really helped a lot in interaction with other kids. Although, when I showed up at lunch on the two days, she was out eating in the hallway with the assistant director, not wanting to be with the kids. She even had a friend in the group, who is also in her class this year, but that's the way it is. She would rather be with adults, or someone who is there to help only her (like her helper Marissa in the play). I see this time and time again, not just with Hannah but with all cancer kids. They shy away from regular interaction with kids their own age, and interact more with adults. It's an odd thing, but very noticeable for myself and other cancer parents. It sets out kids apart, and will always set them apart, no matter how hard others try to get them involved.

We're watching Ted Kennedy on tv right now at the Democratic convention. He looks good...even after brain surgery, proton radiation therapy (just like Hannah) and chemotherapy. You can see his hair gone on the left side of his head, he walks with assistance, and his speech seemed a bit stilted. He put on a good show, and I can imagine that now he will immediately go and lay down.

We go for Hannah's MRI of the head only tomorrow morning, we'll post results tomorrow after we get them. I'm nervous. I just keep thinking of little Julian, and how he recurred at 9 months (this is Hannah's 9 month post treatment MRI). Julian only lived for 6 months after that. Sleeping tonight will be a challenge.


♥Kim

Hannah wants everyone to know that despite little Tod's antics, she loves him anyway. Here are the pictures to prove it.


Hannah had a good day today, tutoring (reluctantly) in the morning and play practice in the afternoon. I was able to leave her there today during her 2 hour practice and all was good. Tomorrow practice is all day, so we'll see how that goes. This is such a good experience for her, and I'm so glad she is doing it. I can't wait until Saturday.

Tonight we went clamming-for those of you not from the east coast-it's where you hike out to the bay and take the rake and rake through the water and sand to find clams. We went to an area that is not very populated, and had lots of luck. Here we are with our friend Emilie, we got about 15 clams in all. Dave and I came home and baked them-they are the best I have ever had! Well, with the exception of Ronnie and Paul's!! It's not really my thing-standing in the bay in sandals, not being able to see the bottom and wondering what is going to bite you while digging furiously with the clam rake. We did catch one VERY big spider crab. But, it's definitely worth the work. Here are some pictures of our adventure.






That's all for tonight, a few side notes. Hannah's next MRI is Tuesday of next week. I'm trying to keep it out of my mind right now. I got the word from my doctor today that I have Lyme disease, which explains why I have feeling lousy lately. I guess I was bitten by a deer tick sometime, didn't even know it. I'm on antibiotics, which I hope are doing the trick, since it can get pretty bad if it progresses. So, signing off with my GIANT headache...

♥Kim

Our summer is coming to an end too quickly, only 2 more weeks left! Hannah surprised me this week by joining in a local play! Yes, she said she wanted to be a part of a play that a theatre company is putting on in town, Hansel and Gretel. All the kids that sign up get a part, it's amazing watching the directors work with the group and decide within 1 1/2 hours who will have which part in the play. They practice this week, the play is this Saturday night. Hannah had a few issues the first day, but a member of the staff really helped put her at ease. She is very excited about the play, she is playing one of the "nasties" in the play, I think those are the witches helpers. The director took a few minutes out to speak to me about Hannah, he is 23 years old and had a brain tumor as a child also, a benign tumor of the cerebellum (where Hannah's was located too.) So, he really gets it!

The girls got their teacher assignments for this year, and they are both very excited about them. Hannah will have Mrs. Wilcenski with her again as her aide this year (THANK GOODNESS), so we are feeling comfortable knowing that she will be with her. School starts on September 4th.

Tod, Tod, Tod. Oh we love Tod, or by now he would be roasted on a stick being served at the Olympics! Here is what Tod has been up to lately...

Red frosting from Hannah's birthday cake after eating the rest of it off the counter
Tod smeared in mud from the creek after he went down and rolled in it...talk about stinky!
Hannah giving Tod a bath this week
Tod spilled a chocolate milk shake all over the white carpet in the living room after I left the room for ONE MINUTE
Tod in his new bed that Hannah bought him for his birthday. See the part that he chewed after only the first night?
Tod with his ice cream dog bone birthday cake that Hannah made him

Tonight he chewed a piece to the pool that is used during cleaning. Oh joy.

♥Kim

Well Hannah has graduated! We went to clinic today for our monthly check up. Hannah's counts were largely unchanged, white cell count up only slightly, ANC up slightly too. Still not in normal range, but acceptable for now. We also got a script for her next MRI-end of August. Oh boy, looking forward (NOT) to that. We discussed the osteopenia-more on that below-and that was about it. Hannah's next monthly appointment will not be in clinic, we will now go to the "brain tumor clinic" which is separate from where we have been going since the beginning. The regular clinic is where all patients are seen, no matter what kind of cancer or other hemotology issue they have. She gets her finger stick, gets weight, blood pressure, height, temperature, then we wait to meet with the doctor to review the counts and discuss any other issues. Today it was crowded as usual, with many new kids we had never seen and some old friends too--HI KAITLYN!!

Hannah is now 9 months out from the end of her treatment, she is doing well, so she has graduated!! Brain tumor clinic is only once a week, on Tuesday afternoons. When we come in for a visit, Hannah will see the oncologist, the neurologist, endocrinologist and any other specialists on that afternoon. Sounds pretty convenient, we'll let you know how it really works. But, I do believe this means she won't have to get the finger sticks any longer (although I may be wrong on that one.)

I did speak with Hannah's endocrinologist yesterday. They said that her blood work all looks normal, but she definitely has osteopenia/osteoporosis. Why? They don't know for sure, it could be the radiation or the chemo or the steroids, or some combination of all of those necessary evils. They don't want to treat her with drugs they would treat an adult with, they have many unknown side effects for children, especially girls within child bearing age. They want us to supplement with 800 IU's of Vitamin D (double the recommended amount) and 750 mg of Calcium (about triple the recommended amount) daily. We will have to do follow up blood work also in three months to be sure she is not getting too much vitamin C in her system, which can cause kidney stones.

At the time we get that blood work done, we will also have the preliminary blood work done for growth hormones. Radiation treatment usually causes stunted growth and hormonal issues (if the thyroid was in the field of the radiation, less of an issue with proton rads we hope). When Hannah had her bone age test done, she tested at 6 years, 10 months of age. In one regard, that is good news, it gives her bones more time to grow to help catch up on growth that she may lose due to the radiation to her spine. However, another doctor explained to me that the other school of thought here is why did she test so young? Is there a growth hormone issue? Although they will do the testing, the wouldn't even consider giving her any type of growth hormones until she is 2 years out from the end of treatment, since it has been known to cause tumor regrowth. So, you would get taller, but you would only have less than a 10% chance of further survival when your brain tumor came back.

Everyone keeps remarking on how tall Hannah is getting, but she has fallen off somewhat in her growth chart already to the 5.9 percentile (from the 20th, to the 10th, to the 5.9th.) We have noticed that the growth is coming more from her legs than her trunk area (where she received direct radiation.) It's something we will have to monitor from now on.

I want to share a video with you from a little girl with leukemia. Unfortunately she lost her battle, but along the way she made this video diary. It is pretty realistic, and shows some of what it's like to be a kid with cancer. The rage she displays is from the steroids (which Hannah did not have to be on after surgery, thank goodness.) It's pretty powerful. It also gives you an idea of why I spoke with the doctor today about a psychologist referral for Hannah.

♥Kim

We all have been enjoying the Olympics here since the opening ceremony last night. It's fun to watch something on television that we all enjoy watching together!

I have not spoken to Hannah's doctors yet regarding the osteopenia. The doctor was out of town all week, and I had been trying since Monday to get them to return my calls. I did get a message on Friday saying that all of her bloodwork came back normal, but that the DXA scans showed significantly low bone density. WHY? I didn't get to speak to the doctors yet so I don't know what their theories and suggestions are yet. I hope to connect with them on Monday. Hannah's other endocrinologist suggested doing HGH testing (growth hormone) to determine if all of that is functioning properly-with one theory being maybe there is an issue here since Hannah's bone age test showed she is only 6 years, 10 months.

Hannah spent the week at Camp Invention. The program was Monday-Friday from 8:30am-3:00pm. WOW! Hannah wanted to sign up for this when the information came home, and didn't know any other friends who would be participating. It took about an hour on the first morning before I was able to leave her there without crying. Each day got progressively better. She told me she cried each day at some point during the program (which she did almost every day in school last year too.) I spoke to the director the first day, and she already knew Hannah from scouts, and had spoken with Hannah's counselor to prep her on giving Hannah a little extra help/attention. I felt better leaving her knowing that. The staff was excellent, and Hannah really had a good time. She just loved inventing each day, and doing the crafts, etc. She said the only part she really didn't like was lunch! Here are a few pictures of her with her inventions. Her group created a spaceship (which Hannah ended up bringing home.) It covers the entire kitchen table, so it won't be there for too much longer! The other creation is her "alien" which she created from taking apart a non-working cd player and turning it into the alien. Very creative!
♥Kim

So many wonderful things have been happening with Hannah's Cans for Cancer fund, I wanted to give an update. Here are our most recent numbers for Hannah's fund:

Total amount raised: $9,828.40

Total amount donated to kids with cancer and their families: $4,655.66

Total amount currently in fund: $5,172.44

Thank you so very much to all of you who have helped us help the children and their families. So many people have donated money, donated cans week after week (even washed with soap and water!!), supported us through fundraisers, hosted their own Cans for Cancer drop off sites and so much more. I think the saying goes "many hands make light work." That is just so true. All of us working together have done wonderful things for these kids.  Here is a picture of Hannah outside of the hot dog stand run by the Bugdin family. See their Cans for Cancer bin on the side? Stop by for a great hot dog meal, they are across from the Capital One headquarters in Mattituck on Route 25. What a great idea! They drop off cans that are collected there to us.

I know of others who have vending machine routes, collect from their friends and family, and many who come by weekly.

We don't know all of you by name, but you are all making a difference. Thank You!!

It's been a while since my last update, wow! We've been busy with family in town and our trip to Maine.

First, no results yet on Hannah's osteopenia. I plan to call the doctor tomorrow to check on the results.

We had a great time this last week with all the family in town. My sister Sue and her daughter Sydney got here first, then Grandma and Grandpa with Great Grandma came last week, with Uncle Victor. We had a full house with all of us and the two dogs. We did a lot of swimming in the pool, that's for sure. Thursday we all headed up to Bailey Island, Maine for my cousin Jacque's wedding. We had some free time to do some hiking, eating wild blueberries and blackberries, collecting shells and beach glass. We went to the rehearsal dinner lobster bake on Friday night, what a feast! The girls had fun doing some downhill skateboarding (yep, enough to give me a heart attack) and we all had fun eating that great Maine "lobsta". Saturday was the wedding. It was such a beautiful and well planned day. Even the weather cooperated long enough to get everything in. The reception was at a small intimate place, really nice. Then, the dancing started, and we all got up and had fun. It really was a great time.

Here are a few pictures of us on a hike, and at the wedding. Hannah caught the bouquet, boy was she happy about that. The girls really didn't "get" the whole garter thing and Hannah asked why his head was up her dress (ha ha).

Also wanted to mention some of Colby's latest works on youtube, some very interesting work!!

Colby's YouTube Videos








Lots more later too,

♥ Kim

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 ♥♥♥